CSF Leaks and Spontaneous Intracranial Hypotension

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Biology 202, Spring 2005
First Web Papers
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CSF Leaks and Spontaneous Intracranial Hypotension

F Michaels

Spontaneous Intracranial Hypotension (SIH) is a condition where a patient gets postural headaches due to a leak of the Cerebrospinal Fluid (CSF) in the spinal membrane. (1) What happens is that the leak causes low CSF pressure within the nervous system, and thus causes a constant string of headaches to the patient. The problem with SIH is that it is very hard to diagnose and there is not a great deal of information on why it occurs. In 1995, a study showed that only one in fifty-thousand people in Minnesota had SIH. It also showed that SIH was more common in women than in men, and that the condition usually developed while the patient was between 40 and 60 years old. (5) When first researching this condition, my two main questions were: Why does it develop and can it be cured? In order to answer these questions, one must first examine how CSF runs through the body and the specific symptoms of SIH.

Cerebrospinal Fluid is formed in ventricles of the brain. It moves through the ventricles and leaves the brain at the base, underneath the cerebellum.(2) Then, the fluid moves into the spinal cord and the nerves, and finally returns to the brain. Throughout this time, the CSF is moving through a membrane, called the dura that surrounds the brain and spinal cord. The condition of Intracranial Hypotension (IH) develops when a rupture occurs in the membrane. Thus, the CSF leaks out of the dura, causing a dislocation of the brain downward and "pressure on pain-sensitive structures."(5) IH can develop as a result of brain surgery, spinal surgery, or any major trauma to the head. (3) However, as in the case of SIH, the rupture can sometimes occur spontaneously. In other words, there is no known cause for the rip in the dura. Some doctors speculate that the spontaneous tear is due to the initial weakness of the dura, or a traumatic event that went undetected; however there is not a great deal of information on this subject.(5)

The principal symptom of Spontaneous CSF leaks is headaches. The headaches only occur when the patient is upright, and gradually disappear when the patient is lying down. In most cases, the headaches gradually increase from the moment the patient wakes up in the morning. However, in other cases the headaches are quick and severe. The acuteness of the headaches varies in each case, which affects how quickly the condition is diagnosed. Some of the related symptoms of SIH are a loss of hearing, tinnitus, vertigo, stiffness of the neck, nausea, and even vomiting.(5)

Since the primary symptom of SIH is constant and severe headaches, it is often misdiagnosed. Unfortunately, misdiagnosis can increase the painful treatment for other conditions that imitate SIH (such as Chiari malformation) as well as the possibility for early treatment. In a study done by Dr. Wouter I. Schievink between 2001 and 2002, he found that 94% of patients who had SIH were initially misdiagnosed when they visited a doctor about their symptoms.(4) Some of the common treatments due to misdiagnosis included craniotomies (surgical incisions in the skull) and cerebral arteriographies (a procedure that uses an injection of dye and x-ray images to examine arteries in the brain). More than half the number of cases of SIH has been reported in the last decade.(5) Therefore, because SIH is so often misdiagnosed, it is not likely that there has been a drastic increase of the condition, but rather that more cases of it are being correctly diagnosed.

In some cases of SIH, the condition disappears as spontaneously as it appeared. Mild cases can be cured through a general increase in fluids, especially caffeine, and lots of rest. However, more serious cases will require a procedure called the epidural blood patch. This is a procedure where autologous blood is injected into the patient's lumbar spine. The blood travels through the spinal cord, finds the rupture in the dura, and clots the rupture. Success of the epidural blood patch in patients with IH can usually be determined immediately after the procedure. If it is not successful, the procedure can be repeated several times with a larger amount of blood injected (no more than 30 ml) and in many cases can lead to a permanent closing of the torn dura. (5)

However, in more severe cases of Spontaneous Intracranial Hypotension, the epidural blood patches that are injected into the lumbar spine are ineffective. At this point, an effort to locate the exact position of the rupture in the membrane can be made and then another epidural blood patch may be performed at that location.(5) This location-specific procedure is more effective than a regular epidural blood patch, and should cure the condition. However, there are a few cases where even this procedure is not successful. Further procedures to resolve the issue include an injection of fibrin glue into the specific location of the rupture and (in the most persistent cases) even surgery, both of which seem to cure the condition.(5)

In conclusion, Spontaneous Intracranial Hypotension is a very rare type of a Cerebrospinal Fluid leak, but unlike other types, it does not occur due to any specific traumatic event or surgical procedure in the nervous system. Although there is not much information on the possible causes of SIH, it is suspected that an intrinsic weakness of the spinal membrane or an abnormality of the brain structure causes the rare condition. The symptoms of SIH are so small and so common, that it can often be misdiagnosed. Therefore, the condition of SIH, although thought to be very rare, is probably more likely than one might think. So how can someone prevent SIH? Is there anything a person cando to prevent the rupture of the dura? Unfortunately, there is no clear answer because very little information exists as to the primary cause of the tear. All one can really do is avoid brain surgery or any head trauma that could trigger the onset of regular IH. Hopefully, as more observations are gathered about Spontaneous Intracranial Hypotension, the causes of it will be identified and the ways to help prevent it will become more apparent.

 

References

1)Abstract of two cases by T.A. Rando and R.A. Fishman, general information on SIH

2)Discovery Health: CSF leak, general information on Cerebrospinal Fluid leaks

3)University of Maryland Medical Center, general information on Cerebrospinal Fluid leaks

4)Archives of Neurology, Abstract of a study on the Misdiagnosis of SIH

5)Medscape: Spontaneous CSF leaks, A review by Dr. Wouter I. Schievink

 

 

Continuing conversation
(to contribute your own observations/thoughts, post a comment below)


08/31/2005, from a Reader on the Web

I have had this exact problem. It started in February 2004 and I have had it and the really bad headaches since then. Just recently, my headaches has subsided. A little background: I woke up one day in February 2004 with a excruciating headache. I went to numerous doctors and they all said it was migraine headaches. They gave me many different pain killers and nothing worked. Finally I went to a neurologist. After giving him my simptons, he said "let's check your spinal fluid." He then proceded to put a big needle in my back to check and have my spinal fluid analyzed. He got very little out of my back. He had a lab run some test, but everything came up negative. He gave me some pain killers, that did not work and then that was it. So I went to this other neurologist and he said that he had a patient two months prior that had the same condition and we should try a blood patch. Did that and that did not work, he had me try it again and that did not work. He then suggest that I check into the hospital and run a boat load of tests. He then consulted with another doctor and with all the different tests (MRI, Cat scans, etc) noticed that I had holes in the back of my neck. Both doctors decided that I would stay in the hospital and have my spinal fluid drained every hour and lay flat in the hospital bed to see if the dura would close. After a week and a half in the hospital, they did another test and some of the tear closed but I still had some still torn. (Mind you, I had many tears in the back of my neck and slightly down my spine). I was released from the hospital with the same headaches and continued to live with them until this day, though less severe. When I read your piece on spontaneous leaks, I could not believe that I am not the only one out there that has this problem! THANK YOU!!! I don't know what caused my leakes, I have had no trauma, nothing so I am at a loss. I would love to be able to talk to someone about my case and maybe sent my doctor's and hospital's records to you to put in your database to help other people. Lastly, I just read an short article about the actor George Clooney that had the same thing. I would be great to here more on this subject. I a wait your response. Sandra


11/10/2005, from a Reader on the Web

I had a Sponaneous Spinal Fluid Leak in 2003 for which I finally received a blood patch procedure after suffering for 3 weeks through countless tests. I have tinnitus as a result of this condition which began 2 weeks after the initial spinal headache. I was wondering if any one else has this same problem. Its very hard to find information on this since Spontaneous Leaks are so rare (1 in 50,000). I would appreciate learning more about this.


12/30/2005, from a Reader on the Web

Comment on the article on CSF leaks and hoping the person who posted a comment will read this one, or perhaps someone at Serendip could forward it to him/her. No, you are not alone with suffering a CSF leak and yes, they can be very hard to find and fix. Here's the link to a discussion community of fellow sufferers and those who suspect they have a leak and don't know. There are a lot of great resources here to help you go back to your Dr's and get more help. Two blood patches is often just the beginning of treatment, not the end, but many neurologists are not up on their reading on this rare problem and don't know what else can be done, or perhaps have never done it themselves and don't want to refer you..... http://brain.hastypastry.net/forums/forumdisplay.php?f=118

Pam Bryan

 

Additional comments made prior to 2007

I also have intracranial hypotension from two epidural shots for a lumbar disc problem. The back problem is not so bad anymore but I still suffer from moderate to severe head pressure 24/7. For two years I was bedridden with this terrible ailment, unable to stand along with many of the cranial nerve side effects (double vision, nausea, radicular neuropathy). Three blood patches failed to help....slowly over time I was able to do more. Myelograms and cisternographies have not been able to see my leak, though my spinal pressure was measured twice to be low, as well as my brain mris showing enhancement. Though I am functional again I still have many restrictions including exercise (frustraing as an ex-athlete). I'm also a licensed nutritonist and your paper touches on some interesting points....why doesn't the dura heal? The biggest obstacle with this conditon is the difficulty with diagnosis because most doctors believe the dura must heal in x amount of time and. So to accept that this doesn't occur with everyone is one problem and then why it isn't healing is another. I wonder if certain fundamental factors are missing relating to connective tissue. Not necessarily one of the conventional connective tissue disorders but something missing or interfering with attaining adequate amino acids to fully optimize connective tissue sythesis/regeneration. At any rate, this can be an unbelievably debilitating condition....check out Mass General Hospital's neurology department's...brain forum and look under csf leak diagnosis and you will see it is more common than perhaps once thought. Plus these headaches are so not like migraine, although it is not uncommon for migraines to develop on top of them. These headaches/pressure are all about physics...an intense pulling sensation..like G-forces pulling your head down. I'm praying for more research....maybe better imaging to find smaller leaks. Many thanks for your paper ... Cindy, 4 February 2006

 

 

It's wonderful to read the comments from others who have suffered with spinal leaks. I too went misdiagnosed for well over a year. I was told my headaches were caused by stress, menapause or even migranes. It was just one year ago that the pain became unbearable and my doctor now thought it was meningitis. I was put in the hospital and a neurologist found my leak. Although my surgery was to take place in another hospital, it was postponed because I had seizured. I was put into a medically induced coma so I could be stablized. I had never had a seizure in my life and it was believed that it was brought on by the extreme loss of fluid. My leak was at the base of my spine. After an extended hospital stay and complications, I am now happy to say I am cured. I have not had even the slightest headache in one year and hope I never do ... Julie L, 7 April 2006

 

 

My husband started w/ severe fatigue approx 4. months ago. The fatigue lessened,but he began having chronic headaches.He has had a headache now for about 3 months. Spinal tap results came back as low pressure and high protein. He seems to think it is a low pressure headache. This is all new to us. We have never heard of such a thing. Apparently there are more of you out there who suffer from this. We would love to hear from anyone experiencing the same thing. He did have a blood patch today. Waiting to see if it helps. Thanks for that great article. Very good and informitive ... Lisa, 15 August 2006

 

 

REGARDING SPONTANEOUS INTRACRANIAL HYPOTENSION I am a 36yo female I have had this condition also on july 19 2006 I went to bed with a bad headache and woke up the next morning with sore shoulders and neck when I tried to get up I suffered the most excruciating pain in my neck and head it was so bad I wanted to vomit . When I visited the local hospital the doctor gave me panadol and sent me home without doing any tests. After 3 days of getting worse I went back to my doctor by this time I could barely walk because the pain was so severe the doctor sent me over for a cat scan which they picked up immediatley as some kind of fluid on my brain . After that I was flown by Royal Flying Doctor to Perth . While there I had 2 MRI one on my brain and the other on my spine after the spinal one they picked up that I had a leak in my spine. I just want to tell any one out there who has had or does have this condition that I really feel for you because it's such a traumatic illness and no one has any idea how painful it is also anyone who is suffering pain in the head so bad please demand you have a cat scan ... Deanne, 26 September 2006

 

 

I am just three weeks out of having a disctectomy done. The week prior to that I received an epideral to try amd fix the blown disc that I had. Is there anyway to minimize the pan of the headaches? I am being admitted into the hospital again on Monday to now correct the spinal fluid leakage problem. Does anyone have any suggestios concerning this matter or that can supply me with any kind of information? ... Heather, 22 November 2006

 

 

I would like to talk to others who are suffering from spinal fluid leaks. Can you help put me in touch? Or, can I talk to you? ... Brad Hennenfent, 22 January 2007

 

 

I read the article on Spontaneous Intracranial Hypotension and felt compelled to share my experience with this condition, which is still unresolved but hopefully soon to be treated. I should preface this by saying that I have never had injury or trauma to the head or spine. I developed a headache a little over two weeks ago that was very migraine-like except that none of the pain relievers I tried got rid of it entirely, it originates at the base of the skull and spreads forward, and it's relieved within five minutes of lying down. Also, after five days of the headache, I began to have a feeling of congestion in my ears accompanied by a soft rushing sound, followed by mild hearing loss. The first doctor I saw in Urgent Care gave me some migraine medicine; the second ordered a CT scan; the third ordered a brain MRI and had me see a neurologist; the neurologist saw a report of the MRI that indicated enlarged ventricles, thought I might have hydrocephalus and referred me to a neurosurgeon for another opinion (the neurologist also prescribed Diamox, a diuretic - yikes!); the neurosurgeon looked at my MRI and thought I had a Chiari malformation, but wanted a second opinion so he had me see another neurosurgeon; the second neurosurgeon made the diagnosis of intracranial hypotension and ordered a lumbar MRI to see if they could detect a CSF leak. My dilated ventricles caused a lot of confusion because that's not usually consistent with SIH, but it was eventually concluded that I've probably had hydrocephalus all my life but have never had symptoms, and that the hydrocephalus is not what's causing my current problems. The next step was supposed to be a tracer study to try to identify a leak and its location. Well, my concerned husband got tired of all the shuffling and waiting around among our local doctors, so he took me up to Stanford (about an hour's drive) and checked me in to the ER; as you can imagine, we got much farther much faster by doing that. Stanford neurologists agreed with the diagnosis and have arranged for a blood patch next week -- no messing around with a tracer study. The blood patch will be injected and then my head will be lowered so that the blood coats the entire inside of the dura along the spine, with the assumption that if there's a leak somewhere along there, it will be plugged up. Let's hope it works!!! ... Larisa, 25 March 2007

 

 

I AM 45 YEARS OLD AND I TO WIND UP WITH MIGRANES I REMEEMBER JUST THIS MONTH OF THIS YR. MY HEADACHES WERE SO BAD THAT I LAYED IN A DARK COOL ROOM AND JUST SLEPT I WAS FEELING NAUSEATED EVERTIME I HAD TO USE THE RESTROOM THE SMELL OF FOOD EVEN MADE ME SICK. RECENTLY I HAD A MRI AND THE DOCTOR TOLD ME THAT THE FLUIDS IN MY BRAIN WERE LOW. BUT I ALSO WENT THROUGH 3 BLOWS TO THE HEAD FROM MY EX-HUSBAND NOW I HAVE A NEW LIFE A WONDERFULL HUSBAND AND I ALSO TO WENT TO THE COMPUTER TO FIND NUMEROUS ANSWERS BUT NOTHING SEEM COMPLETED I WILL BE SEEING A NEUROLOGIST HERE THIS AUGUST BUT TILL THAN OUR HOUSE IS DARK AND COOL AND TAKE MEDICATION FOR HEADACHES HOW SEVERE CAN THIS BE AND WHAT HAVE THEY FOUND IN TODAY TECHNOLOGY? I HOPE SOMEONE OUT THERE CAN UNDERSTAND WHAT I AM GOING THROUGH AND WHAT RELIEVED DID THEY RECIEVE DURING ALL THIS PLEASE IF ANY ONE KNOWS PLEASE SEND WHAT INFORMATION YOU MAY HAVE CAUSE I WOULD LIKE TO HAVE MY LIFE BACK TO NORMAL ... Susie, 26 June 2007

 

 

One morning in Oct. 06 I woke up with severe headaches and after 6 weeks of working up the ladder at my HMO, a neurologist finally diagnosed me with CSF leak (SIH). Not content to being mollified by being put on Prozac, I did some cursory research on the net and found out that others had what I had and found that some had been referred to Dr. Schievink at Cedars Sinai in Los Angeles for treatment. These can include blood patches, glue patches and surgery. His staff is very familiar with the disease and he is "the" expert.

 

My HMO refused to send me to him (right down the street in my case) the cost you know, until I developed large subdural hematomas. At that point they had no choice but to refer me because it was totally out of their realm to effectively treat the underlying cause, the CSF leak, or the subdurals.

 

A long story short--after 2 blood patches, 1 glue patch and 2 spinal surgeries(laminectomies)at T9-11 to remove benign Tarlov cysts, to repair 2 leaks, I can now function quite nicely. I have a 20 lb. lifting limit, can't hike up steep hills, and can't push or pull on heavy objects. These modified "val salva" maneuvers, I have learned, will cause undectable (on a CT myleogram) leaks. They come and go because I will still get positional headaches at times. At my last reading my CSF pressure is ZERO.(0) cm.

 

I'm very fortunate at 60 years old to be retired and thank God every day for the wonderful treatment I have recieved. I think mine was a severe case, I use to do a lot of physical work and ran for 25 yrs and maybe those were contributing factors ... Harvey Geiss, 16 July 2007

 

 

I had a spontaneous CSF leak in Nov 2004. After weeks of being told I had migrains, I was sent to a neurologist. He immediatly knew it was a CSF leak and put me on bedrest. After 6 weeks on bed rest, I still had bad headaches everytime I stood up. I then had a test to show where the hole was and they could not find it. I went to a different hospital and asked if we could do the test standing up because that was when I had my pain, and they said their machines can't go up that far. So I asked if they could do it with me on my knees, and they said yes. With in minutes they saw a large tear at C7. After two blood patches my major headaches are gone. From day one, to the last blood patch it was 4 months of bed rest! Yuck! Now I am living my life wondering if this will happen again, and taking Neurontin for these annoying daily headaches. Scary stuff! ... Elizabeth Kilik, 11 October 2007

 

 

Reading article and reader comments on intracranial hypotension. I've suffered over past 15 years from initially intracranial hypotension and flipped at some point to intracranial hypertension (or pseudotumor cerebri)! Living in Cleveland, OH diagnosis ranged from CSF leak to Chiari Malformation to POTS to migraine headaches. I ended up at Mayo Clinic where intracranial hypertension was diagnosed JUly 2007. Mayo has some of the leading experts on this area of neurology in the country. Medication was tried for a short while and in August 2007 a VP Shunt was placed to releive the hypertension. Almost 9 weeks after surgery some headache symptoms arise mid-day when I'm upright- started irregularly a few weeks ago now more of a daily occurance, including one episode of nausea and vomiting. I'm following up back at Mayo Clinic in 1 week. Looking for anyone with similar experiences, resolution of symptoms, and return to normal family and work life ... Robert Schneider, 22 October 2007

Comments

Serendip Visitor's picture

Who are your doctors?

Would you be so kind as to list the names of your doctors and where they will be operating on you/treating you?

Thanks
Marie

Anastashia's picture

I had a spinal tap back in

I had a spinal tap back in June and I've been in pain ever since I too think I am tasting the fluid

Serendip Visitor's picture

mayo clinic

http://www.mayoclinicproceedings.com/content/74/11/1113.full.pdf
www.mayoclinicproceedings.com

Kim's picture

I hope that your new ENT

I hope that your new ENT helps you! I have given up on the medical profession...the last Neuroligist told me to google my symptoms and referred me to a herebalist...who in turn wanted to stick 9 needles in my skull..not happening have enough problems with leaks!! I wish you the best!! Let me know how it goes!

Serendip Visitor's picture

Stop Working Out!!!

See what I wrote just below, The Real Cause of the Symptoms... That is what you have to do. Read it carefully. It is reported that people with this condition have this weight gain problem. Don't take anything for weight loss or anything like that, it will throw off the control system. I think that the weight gain from cravings is not only because of blood sugar, it is a defense to put more material into the neck to stabilize it and reduce symptoms. What your doctors are telling you about feeling awful all the time is wrong, You are experiencing the effects of an intermittent or variable leak. Nothing is nature remains stable, and all sorts of factors affect this condition. The body is not a mechanical device, it is an extremely complex system. Read my article just below. Nothing you say surprises me, because you don't know what is actually going on. The symptoms, and the deregulating of your systems, are all from the same cause. My article explains it, and speaks to exactly what you need. And above all, stop working out! This is a serious medical condition, and you are doing yourself great harm.

Jennifer's picture

Amy, I am hopeful of the

Amy, I am hopeful of the possibility that after reading about your situation, I am not alone. Three days after giving birth to my son I began having the severe positional headaches. I had a CT scan, and 2 MRIs, unfortunately the MRIs were done w/out contrast and so locating a leak was never possible. However my neurologist and neurosurgeon both agreed that they believed the headaches to be a CSF leak. Well after 3 months of dealing with the headaches they began to grow less and less painful with each passing day until they were gone completely within a week. It was such a relief to be headache free that I tried to ignore some of my other problems. After the headaches subsided it seemed as though that "pain" that was in my head went to my back. That eventually went away but then I have had terrible pain in my tailbone. When I sit for a period of time and lean forward, it is as you said, I feel like I have bubbles popping in my spinal cord. I can hear them pop. My ears are often muffled and I find myself yawning to pop them frequently. I also have a lot of pain and stiffness in my neck which will not go away. My body aches like I'm an old women (which I am not). The most troubling problem for me now seems to be the pressure in my neck and head. I can't really begin to describe it, I am hopeful you might know what I am talking about. The best way I know how to describe it is it feels as though I have been hanging upside down and the blood has gone to my head giving the feeling of pressure.

I write this to tell you I share some of your problems. I have not wanted to go back to the doctor because I don't want to end up with expensive doctor bills without any real answers. When will you see the endocrinologist? I don't understand the correlation with pituitary gland? Any information you can share with me, if not sympathy alone, would be appreciated.
Thanks-Jen

Serendip Visitor's picture

The Real Cause of the Symptoms of CFS Leaks

First I will compress everything that I know about this into the conclusions. The conclusions are founded in several years of research. I present the conclusions unjustified and unreferenced at first because you have a serious medical condition, and research is not what you should or want to be doing right now. I will explain sources later, but you need the knowledge easily available first. Disclaimer: the reader is entirely responsible for any use that is made of this information. I am providing a summary of information available to the public on the Internet, plus the conclusions about what you might actually do to apply the information, which I did not find anywhere.

1) The diagnostic criteria and terminology regarding "spontaneous" v. "others causes" of CSF leaks, and intracranial pressure (ICP), whether high (hypertension) or low (hypotension), tend to obscure the exact nature of the medical problem.

2) If you have a CSF leak, then your symptoms are the direct result of the fact that there is not enough CSF to support your brain, which is supported in part by the buoyancy of the CSF. This is not hypotension as such. The condition is called CSF hypovolemia, caused by an insufficient volume of CSF, usually due to a leak or leaks. Over a period of time it develops from an acute to a chronic condition, because the brain stem becomes compressed from increased downward force due to lack of buoyant support from the CSF.

3) The symptoms are caused primarily by the increased proximity of the brain to the solid material of the adjacent skull, because the brain is displaced downward due to lack of support from the CSF. This is in particular the case for the cerebellum. When your brain tells you to lie down, it is because it is in immediate danger. When you are walking, you are giving yourself mini-concussions at the base of your brain. If you are standing or sitting still, with your head in one position, your brain is settling, getting closer to the solid matter, which interferes with its function.

4) That is why you must lie down, because this proximity to the skull or other solid matter is really a grave and dangerous condition. Lying down relieves the downward force of gravity on the brain, alleviating the symptoms by alleviating the proximity effects. Lying down alleviates the headache and other symptoms, but the root problem is not the headache, it is the proximity if the brain to adjacent matter below when the head is upright.

5) Obviously a person with a CSF leak needs two things: increased production of CSF; and, the healing of the leak.

6) The production or flow of CSF into the area enclosed by the dura mater, (the collagen matrix which surrounds the brain and spinal cord and contains the CSF) is regulated by complex factors. One simple direct thing which you can do to affect the rate of production is related to the physical transport phenomena across a membrane.

7) Flow of fluid into the CSF takes place across membranes, and flow across the membrane is affected by concentration gradients. Two of the ions involved are sodium, and bicarbonate. if the concentration of these in the blood is increased, the ions move across the membrane into the CSF, which increases the concentration in the CSF, and that pulls more water from the blood into the CSF, increasing the rate of production. What you need to do then is to take two tablets of Alka-Seltzer, and yes, I am absolutely serious. Right now. Monitor the effects. The volume of CSF is quite small, so small changes make a big difference. More is not necessarily better, because if you have an active leak, then obviously too rapid an increase in CSF volume will increase pressure and intensify the leak. Obviously the long term effects of increased sodium, and the aspirin, are a problem, but those effects are irrelevant in the short run compared to the effects of hypovolemia. Just try it. Or just take baking soda(4g). Taking baking soda by itself does not seem to be as effective, and that may be because the aspirin has an anti-inflammatory effect on the brain tissue at the proximity area(s). It doesn't matter in the short run, if it works.

8) The second easily available substance which increases the transport across the blood/CSF membrane is potassium (K). It works quite effectively and rapidly, in small quantities, when taken as a supplement. By small quantities I mean half a 50mg tablet, taken on an empty stomach. Since the RDA is 4700mg., it is obvious that there are no short term risks in taking K, except that it must be understood that any rapid increase in CSF volume may reopen or increase the severity of the leak, due to increased ICP. There is no need to get into controversy about the role of potassium, because it works, but it may partly be the result of that fact that it tends to lower blood pressure, which lowers blood volume in the brain, which lightens the brain. However, since taking even a small amount of potassium directly can be experienced to reduce the symptoms of hypovolemia, and yet also cause a leak to reopen or increase, I think the main effect is increased CSF production. Just try it. Experiment. More is not necessarily better. By the way, have you noticed any increased craving for such things as bananas, which contain potassium. Also sugar, bananas or other high sugar foods? Sugar is being lost from the blood with the CSf, it contains sugar, so this increased desire for sweet things is probably related. And caffeine, what about that? Intravenous caffeine is actually used as a treatment. Just asking. Not suggesting anything unscientific, because medical science has decreed that cravings don't actually have anything to do with needing the materials in the craved food, so that must be so. So I am just asking, and saying as well that this medical condition is really the time to "listen to what your body and your brain are telling you". Especially, if you feel like lying down, do it right away. Do not struggle manfully or womanfully onward, don't pay any attention to what your friends or family think, unless you want to accumulate gradual brain damage, permanent effects on your optic nerves from tension on them due to the lowered position of your brain, or unless you want to collapse or go into seizures as you try to put on a good show, and prove that you can "take it". Listen to your body, this is a medical condition, and the last thing that you should apply to it is "force of will", or guilt-motivated "struggling onward" in spite of the symptoms. You will pay big-time, even in the short run, for making this mistake. I always refer back to an article which I read which started out: CSF hypovolemia is a potentially lethal medical condition. Fortunately, it is really easy to understand.

9) The other aspect of the problem, the healing of the CSF leak, may also be affected by your actions. The collagen enclosure which holds the CSF must be able to renew and regenerate itself, because as part of a living system, it would deteriorate if it does not renew. It then must be beneficial to provide better conditions for the regeneration of this structure. Collagen is compromised of amino acids. It has a very high proportion of proline. It forms best in the presence of increased Vitamin C. Do not take amino acid supplements. They contain raw L-phenylalanine, which is the substance which gives you a boost when you eat foods containing lots of it, like soy beans, but don't dump it into your blood stream from supplements. It is the limiting substrate for norepinephrine and dopamine, meaning the more you take in, the more of these neurochemicals will be produced, and you do not want that wild card hyper-stimulation-effect when you are trying to stabilize your physiology, in order to heal the collagen, and in order to minimize the variables affecting the production of CSF and the intracranial pressure, which are so numerous that it is a wonder that the control system works at all. Try to minimize the introduction of variables. The best source for amino acids is a protein supplement, I think this is the generic term: high alpha whey protein isolate. This is easily digestible, and again no risk in the short run, people are taking this supplement all the time. At first, take according to the recommendations, and see if you notice any improvement. Since proline is 30% of collagen on average, you have to take additional proline. Take a gram of Vitamin C powder. Once again, there is no reason to think that "more is better", and experience suggests that it is counter-productive to take large amounts of protein, or the Vitamin C. Doing this may actually weaken the collagen, who knows? So don't go at any of this with a "Eureka, I have found it, now I will load up on it!" approach. This is counter to science. You are experimenting, so keep track. However, be aware of the following. If this helps to seal the leak, and I think it will, then your control system has increased the production of CSF significantly to compensate for the leak. The leak is either active or sealed, off/on, and that is not good for a complex control system, so when it heals, the ICP is likely to go up pretty rapidly, which produces symptoms, some of which are at least described in the same words as the symptoms of low ICP. This is confusing. And unfortunately as well, this increased pressure will increase the likelihood that the leak will reopen. Moderation and extreme caution will yield best results.

10) I feel compelled to break with the order here to mention something. This condition produces some symptoms which are often confused with psychiatric disorders. What is happening to your behavior and personality, assuming that it is, is also a proximity effect. It makes you irritable, frustrated, angry, but this is not a "mental" problem, it is the effect of the interference with normal brain function. It produces variable symptoms of dementia, after all, so there is a lot going on. It has one cause. Proximity. Solve the problem, the symptoms go away.

11) Collagen is weakened by the presence of infection (or rather the immune response to same) and inflammation due to the action of cytokines. It is therefore understandable that CSF leaks can eventually form "spontaneously" as the result of sinusitis, especially ethmoid sinus. Therefore the presence of inflammation due to edema from the escape of CSF is a problem in itself, possibly affecting healing and increasing the danger of infection in the upper respiratory tract / nasal / sinus area. Therefore it is necessary to clear edema, and this can be done simply by increasing the among of albumin in the blood, which means eating more eggs that usual.

OK, I know, you think finally I have gone too far, with one too many of these suggestions, and maybe, just maybe, I am suffering from proximity effects myself, but now I will refer you to the exact information which will back up what I am saying, as long as you will accept the fact that the articles in Wikipedia are acceptable as source materials for research. Those articles may contain some errors or omissions, but I found that they are actually not made up by contributors writing their own explanations. They are mostly composed from sections taken directly from journal articles by experts in the field. All you have to do is make alternate searches of the same terms, and you will find a multitude of the genuine articles on this medical condition and related aspects in peer-reviewed medical journals. There articles by eminent physicians, including university professors in the field. First search in Wikipedia:

Spontaneous Cerebrospinal Fluid Leaks, and if you want to cut to the chase, "find" hypovolemia on the page, and read that section, bearing in mind that this does not exactly explain well about the proximity and the compression of the brain stem, but it is valuable knowledge for you, especially that there are alternatives (beta-2 transferrin assay, weighted t-2 MRI) to lumbar punctures, and if you want, search that term in peer-reviewed articles, and you will find that you better not have one, because they often result in the precise condition which we are examining here. 80% have hypovolemia side effects from the disturbance to the CSF, plus the leaks actually caused, for 2-weeks after until indefinitely. Not even dragged kicking and screaming, I would suggest.
Cerebellum. This is really short, and the list of functions of this part of the brain reads just like the symptoms of hypovolemia if the function of that part of the brain is negatively affected by proximity.
Edema. Collagen.

You can then search:
CSF hypovolemia. On the Internet. Lots of articles.

As you learn about this, you should also review:
Intracranial hypertension. Because of what I said above, you have to know what it is too.
You will find out something very important. ICP is variable, and rapidly and dramatically, by everyday activities, which you may take for granted and still be doing, even though they will perpetuate your CSF leak, including through ICP pulses. Straining and lifting, especially doing what we often do, holding the breath when doing so. These activities, including such apparently harmless activities as carrying groceries, will temporarily change the configuration of the upper components of the body, shoulder, neck, spine, and so on, and can cause the brain to move closer to the skull. That is why your neck gets stiff, to protect the brain against too much motion. Whatever you do, do not engage in any kind of therapy or massage to "loosen up" those muscles, because this muscle contraction or spasm is a protective mechanism, and you will get worse almost immediately if you free up these muscles. Another important factor, easily verifiable, is that ICP is slightly below atmospheric pressure when you are upright, and slightly above atmospheric pressure when you are horizontal. That means that it is extremely unlikely that your leak will heal when you are undergoing the prescribed "bed rest" for this problem, because that elevates the ICP. So then it is proposed to withdraw CSF to compensate for that, yet each time a needle is put through the dura mater, there is risk of creating another leak, and that risk is far from trivial, so to avoid the perception that I am being critical of anyone in that regard on an intellectual level, let me just say that as a treatment procedure, that sucks!

There is another obvious factor: if you snore or suffer sleep apnea, it is obvious that a leak can never heal, but will probably get worse at night instead. Because of the ICP variations, and the vibrations. So that means there is a big contradiction, or a lot of them really, because on the one hand, the leak won't seal easily when you are lying down, and yet on the other hand, you may have symptoms immediately upon rising, or which get worse during the day, and the day contains simple innocuous activities, like bending over to pick something up, or lifting or carrying, which can increase ICP and reopen the leak. So it is in my opinion essential that you take action to increase the production of CSF so that you can be up and around, because that is when the leak will seal up. You have to minimize the proximity effects in order to be up and around. Just think about what you are doing, learn about what not to do. Don't' exercise, and don't walk around a lot. Use your head! Just a bit of comic relief, there, referring to the fact that you have a condition which affects your brain function, and yet you have to monitor and think about what you are doing all the time. A real challenge, but a lot better than the available alternatives. There is no acceptable level for the symptoms of hypovolemia. Do the best that you can to fix it now.

Also, don't subject yourself to rapid altitude changes, and don't go in an airplane with this condition, for obvious reasons. What would happen to the leak if there is even a partial decompression, or even a move rapidly upward to lower atmospheric pressure? Even driving in some areas can produce quite a drop in ambient pressure in a short time. Other things to watch for: rapid changes in or abnormal blood pressure readings, or pulse pressure increases (difference sys- and diastolic), rapid changes in or abnormal body temperature (i.e. related to metabolic rate, even hypothermia can result), because these symptoms either show that your brain is struggling unsuccessfully to regulate a control system which is going out of control because of the addition of the leak to the system, or the proximity effect is compromising the brain's ability to regulate body functions at all. This is really serious, so seek medical attention immediately. Elevated ICP also produces "psychiatric" symptoms, including lethargy and euphoria. So the more you know, the more you will know. It is a somewhat cryptic presentation, but I suggest a quick look at this site to see something about Increased ICP, at least a bit at the start, because it includes Valsalva, but I have found more comprehensive articles on ICP but I just can't reference them right now. Avoid Valsalva, breath out upon any effort, pushing, pulling, or lifting, if necessary, but for now try to avoid strain completely.
http://www.gdn.edu/Faculty/a_purvis/Neuro%20lecture,%202004.htm

Going back to hypovolemia, if the condition perpetuates, it causes tension on the optic nerves, and the breakdown of the optic nerve sheath, because of the lowered position of the brain, and this is very dangerous, since subjection to minor trauma may cause major damage to the optic nerves, and also, the nerves are surrounded by dura mater, so their stretching allows CSF to leak into the eyes, which is never a good thing, and is extremely painful. This is something to watch for if you seal the leak, since ICP is subject to rapid change even from positive emotions, so you can hear some song that you really like, and the next thing…CSF into your eyes. Do not sit or stand in one position or with your head in one position for too long. You may find that you now characteristically have your head sloped forward, or slightly back, and this is an attempt by the brain to decrease proximity, but you were not conscious of it until now. Do not sit on soft chairs, because to put it bluntly, the two sides sink in and this leads to upward pressure on the spinal column, increasing proximity effects, even very dramatically. As the effects of hypovolemia become chronic, it is even possible to feel the spinal cord pulling on the nerves which go out across the back. This is in the literature. So if for some reason you did not take this really seriously already, I have given you enough information about the longer term effects of hypovolemia that I bet you take it really seriously now!

If your problems and symptoms are in the front of your head, or in general anyway:
CSF rhinorrhea. CSF rhinosinusitis. This was discovered by Galen in the Second Century AD. Just search all these terms, depending on your ability. If you can't, get someone else to do the research for you. I cannot immediately refer the articles about CSF transport phenomena, and CSF production in general, but you can search it yourself. There are lots of articles which will confirm what I have outlined above.

Oh,there is something else that just occurred to me when I was writing this. Don't be alarmed, but just consider the following. There is some similarity between symptoms of IC hypertension and hypertension. If you trace your symptoms back to a certain time, but it seems to be a "spontaneous" occurrence, it may be that there was first of all an increase in ICP due to a tumor, and then this increased pressure caused a rupture in the dura mater, and then the subsequent condition, which includes headaches, would cover up the origin of the condition in hypertension due to a tumor, or other causes, so you might want to see if your doctor has eliminated a tumor as an ongoing problem. This is just common sense. I am not trying to give medical advice. I just find the term "spontaneous CSF leak" makes me wonder what really caused it.

That's all I got. I hope it is helpful. Copy this. Post it anywhere that it might be useful. Let me know how it works by posting a reply.

CSF 4 wks leaker's picture

AlkaSeltzer, Protein, and Vitamin

I am writing to let people know above instruction sounds like something, but it did not work to me.

AlkaSetzer (aspirin + sodiumBiCabonate); I took 2 tablets in morning for three days as an experiment. It looked as working and headache disappeared, but it came back hours later. I believe headache was gone temporarily because of aspirin (not because Na+ and HCo3- created fluid thru membrane, as above person insists).

Whey Protein; I took 1-2 scoops (18~36g) daily with 1000mg of VitaminC for three days. No noticeable difference. (but I will empty the bin anyway 'cause I paid $20 for the food.)

Nothing is impossible in our world that it may work to some people, however, it did not work out for me. When I read above writing first time, I decided to try it since there's nothing harm or nothing to lose except time. Now I feel above idea belongs closer to GNC sales person rather than a young medical college kid.

Thank you for providing information anyway. I will take MRI to pin point leak spot next week. My CSF-leak has been a month now, and I can't wait for natural healing any longer.

Swaying 13's picture

MRI pinpoint leak spot?

Can MRI pinpoint CSF leak spot? I was told that only Lumbar puncture can test CSF pressure and confirm if theres a leak.

MaryM's picture

To the visitor that took the

To the visitor that took the time and effort to write this phenomenal information:
Is it possible to correspond with you via email or through this site? I have done vast research on this ailment,as well, and have suffered greatly along the way. I am in agreeance with everything you said. I believe this horrible illness has the potential to run in families, and presents itself with numerous familial symptoms; physiological as well as psychological. I would greatly appreciate talking to you about this.

Serendip Visitor's picture

I try to "right what I know".

I did this submission because I decided I must give something back. As far as correspondence, I put everything in the article that I know. Don't get sidetracked into whether or not it is hereditary. If there is a problem with generating or regenerating the dura mater, than steps must be taken to correct it, but I think that in most cases it is from injury or impact of some type, or a created ICP pulse from the Valsalva effect, or other actions. Since the effect is delayed, the connection is not recognized. Part of my motivation was reviewing the outcome statistics from operations (not blood patches or glue) on the Mayo Clinic site. It was something like 90% after one year, but that was including people with one, two, and three operations for this, and there was also the mention that they tend to come back later, so that is horrendous. No one is paying attention to the improvement of the health or healing of the dura mater, when that is the key to the whole thing. So I did. Read some of the following submissions, and my answer to the second reply below. You will note that there are no surprises in what people are saying, but the terrible thing is that they are doing things like working out! They have cravings. I think the tendency to weight gain is a defense to strengthen the neck and create more shock absorption, and damn the BMI. People have no idea what they are dealing with, and they think that it is just going to "go away" if they have an operation. But it won't, until the leak is healed and the dura mater is strengthened, so I hope that they read what I submitted so they can understand it. The most difficult thing to do is to avoid actions which make the condition worse, especially if you have to work. Oh, and you asked if I had anything else. Yes. Especially if the leak is in the forward part of the head, or ears, avoid chewing anything which is hard. Very important, this will reopen the leak or make it worse every time, peanuts, potato chips, well, you get the idea. But the effects come later, so often the person doesn't perceive the connection. I don't know anything else yet. Oh, but I did not make a spelling mistake in the intro line, because of a cognitive disorder. It is supposed to be a play on words. A little humor in the midst of "all this".

Serendip Visitor's picture

My story

I tried the alka seltzer?...seemed to help a little...chronic for almost a year before leak found and repaired..bifrontal craniotomy to repair defect in cribriform plate (midline) with defect running into shpnoid sinus....uggg...seems to be the same roller coaster as before the surgery...just cannot seem to be well..some pressure issues and no low pressure headaches..so that makes me think its fixed? but just cant stay stable ugggg..bed for 14 months now...surgery 5 months ago..my legs have not worked for this whole time..(they think MS)in the begining..had these similar episodes headache nausea dizzy blurred vision confusion nose run..for 9 yrs off and on before chronic 14 months ago..You are amazing in what you write, as you say research to me was very misleading to say the least.I also wonder why they never addressed the POP in my head (severe pressure headache) then tons of fluid came rushing out? (nose) that started this episode which I never came out of like I did thru the yrs? They did see cyst in sinus too..???? Not one doc networks with the others with their cases and findings..the day after my surgery the doc came to see me they wanted his autograph!!! dead serious!!! ( my case was so rare and complicated) no one wanted to know what this was? he saved my life yes..but seems he just left it after that...he says he just dont know what to tell me? TIME is his only answer..which yes again is true..but your info adds alot to my equation of questions...will the CONTROL center ever be well enough? I will search out the stuff you suggested for more reading..can i ever be well? THANK YOU SO MUCH.....if you have more to say I would really like to hear what else you have concluded with this awful awful debilitating illness....

Serendip Visitor's picture

Focus On Essentials

The essential matter is that you must supplement the components necessary for the formation of collagen. I have described how to do that. I do not want to get into a situation where it seems that I am mentioning a brand name, because that may cause people to doubt what I write. I am looking at a type of "high alpha whey protein isolate", and as far as I know, this contains all the amino acids. It calls for 31g (two scoops) once or twice a day. But understand this. This is not like "health food" advice. This is possibly a real effective treatment, with no downside of any kind. I went into great detail, because in my experience half a scoop twice a day, plus proline, plus Vitamin C (1g), created a noticeable improvement. However, twice that much, or more Vitamin C, seemed to undermine the improvement. It may be that too much free amino acids in pure form tends to weaken collagen, so that is why I suggest experimentation, and not a "more is better" approach. It would seem from your description that you have noticed exactly the effect that healing of the leak creates an unwanted increase in ICP. It does. That is why caution in all actions is necessary. The problem is that the leak has become part of the ICP control process. The control system can never stabilize until you heal or at least partially heal the leak. Remember, this condition at times produces a "disinhibiting" effect, which means it is difficult to exercise control over your actions. If you can't get this supplement right away, get someone to help you, and as well to help set up and maintain some sort of regularity in taking these three things: Protein supplements, Alka-Seltzer, potassium. With the last two, which stimulate ICP production, you don't want to wait until you are more symptomatic, you want to stay a little ahead of the curve.

Serendip Visitor's picture

Am I supposed to still be

Am I supposed to still be doing the alka seltzer and potassium? it did seem to make my pressure go to high after the second dose..since the surg i do feel like my pressure does go low also but just not with the LOW pressure headache..not sure any more what's what just cannot stay stable for more than a few days then its back to FLAT again...your findings are helpful in understanding this more and yes I do know it can come back and there is not a guarantee to the PATCH in a pool full of water...a little humor as you say..I do and have always taken chelated mineral supplements and eat alot of protien...very little sugar or flour...Thank you again for your help....

Serendip Visitor's picture

Are you supposed to continue taking...?

Yes, you have to take these every day. Three or four times a day. Cut up the potassium tablets and take half at a time. This is a straight concentration gradient thing. You aren't producing enough CSF, or else there is a leak. However, I don't have any idea what chelated mineral supplements are. Why the hell are you taking them? This may be something which is weakening the dura mater. I would suggest that you stop taking them. Why do you need them? As far as eating "lots of protein", that just doesn't cut it. Follow the instructions that I give EXACTLY. You have to dump pure available amino acids into your blood stream so that the concentration is high enough to provide enough to allow repair of the dura mater. And additional proline, and Vitamin C. This has nothing to do with eating protein as such. The only broad spectrum source of amino acids is soya beans, but even then, it is not in an immediately available form, so you won 't get the concentration necessary. And, to be clear, it has nothing to do with eating collagen products either, because the body has to break them down into the amino acids anyway, it can't just transfer collagen to the site where it is needed. Just like taking albumin to clear edema. It isn't enough to take an egg here and there. You have to eat three in the morning, and then three at noon, and three in the evening, and then the concentration of albumin in the blood gets high enough, but here no, I am not saying do this every day, I am saying do it once, or repeat once in a while as needed. Since it seems that I am not being understood, I don't see that I have any choice but to introduce a product name, and you can get that if available, or something similar. Take the name to a health food store, and get the equivalent: "Genuine Health proteins+", and I put the generic description in previous messages - alpha+ high alpha whey protein isolate. You can try an amino acid supplement, but as I said, I don't advise it, because L-phenylalanine is such a hyper-stimulant in concentrated form that it may cause other problems, or destabilize the control system even more.

Settle Home Inquiry's picture

LECITHIN

Someone bought me a can of lecithin and insisted I start taking it daily -- that it would help strengthen the dura. I have multiple leaks at the C 6-7 and T 1-2 sites. Started in March of 2010 -- over a year now -- same headache EVERY DAY. Ever heard of taking lecithin??

perfida consillium's picture

Sounds like a lot of medical

Sounds like a lot of medical advice being given that has zero credibility. I would like to see links to reference information that provides clear evidence that you are suggesting people do will provide ANY benefit to their health situation. Suggesting that supplementing with amino acid/proteins, alka seltzer and potassium will aid their healing without providing a shred of evidence to support it is just plain wrong.

Potassium supplementation should be done under the management of a physician, period. http://www.mayoclinic.com/health/drug-information/DR602373

Suggesting to someone who has had a bifrontal craniotomy repair that they should artificially attempt to increase their CSF production is dangerous. The best suggestion/advice would be that this person get a second or even third opinion on their current situation!

While you may be well researched on the topic, your 'advice' on how to 'treat' this condition might be appreciable if you could please cite or reference your statements. Otherwise they read like opinions, loosely formed ones at that. Furthermore, you undermine ANY credibility to your opinions with statements like this;

"However, I don't have any idea what chelated mineral supplements are.
Why the hell are you taking them? This may be something which is weakening
the dura mater. I would suggest that you stop taking them."

Chelated mineral supplements are just mineral supplements .... minerals like potassium, which you've already advised this person to take a lot of! They are just processed in a manner that supposedly allows the body to receive more of the mineral into the bloodstream rather than loose it through the digestive process. Why on earth would you suggest that something you admittedly know nothing about could harm their dura?

For anyone here reading who thinks they are leaking or has a diagnosis as such; please do your own research from reputable sources ... medical journal articles, hospital websites, or support groups which provide REFERENCES to medical literature. DO NOT rely on someone's well-intended conclusions.

If you are not satisfied with your physician, please get a second opinion from another physician, not a stranger on the internet!!! If you aren't satisfied that your doctor is prepared to treat your condition; research physicians in your area, or areas to which you are willing or able to travel, and find another doctor and get their opinion! Be very careful placing your hopes on the opinions of strangers offering 'great-sounding' medical advice for which they have provided no substantiating proof or evidence that it is helpful!

Serendip Visitor's picture

This site has saved my sanity!

Dear perfida consillium,

It seems to me you are not one of those affected with this terrible illness. Or if you are, you have been successfully treated.

I can only speak for myself....I ended up desperate and searching the web because I had two failed mastoidectomies performed by an incapable surgeon unfamiliar with my illness.

For over 10 years I was not taken seriously by any of the doctors I saw. Finally, exploratory surgery was ordered. I as so sick, I could not say no. I was too sick to even stand up, let alone go searching internationally for a specialist on an illness I did not know I had until AFTER the first failed mastoidectomy. The repair job was so slipshod that emergency surgery was performed 4 weeks later. Again, I was so sick, I was not in a position to go anywhere else, let alone do research.

This site and the Facebook CSF site have been a Godsend for me.

I live in Germany and there are no specialists here.

I refuse to have more of my skull pulverized by someone, even an experienced neurosurgeon, who is doing this type of dura and skull-base repair for the first time.

No thank you!

The doctors I have seen here--including the surgeon--have told me straight out, I have been dealt an unlucky hand of cards. They told me directly that they are not willing to research the matter for me as it is too rare and they do not get paid enough! Yes, these exact words were uttered by at least 5 of the specialists I saw. And the other 15 or so doctors consulted over the years are not familiar with spontaneous dura defects.

So there is no recourse but to try on one's own to get information.

I seriously doubt, after reading your comments, that you can at all empathize with any of those affected.

Serendip Visitor's picture

Clear fluid slowly coming from ears and nose

Hi all,

I have had clear fluid coming from my ear and nose. I have just read the postings on this site. I don't have headaches, but my neck does hurt a lot. This fluid started about 6 weeks ago from my nose, and 3 weeks ago from my ear.

Did anyone start with these symptoms?

Judy

Jack's picture

Test for CSF

Get your doctor to order a beta-2 transferrin assay. This is a 100% accurate determination of a CSF leak. It is non-invasive, and only requires a very small sample. CSF tastes salty and metallic. Look in Wikipedia: Spontaneous Cerebrospinal Fluid Leaks, especially down to CSF hypovolemia, because this is what this will develop into, so if it is CSF, take it seriously. See CSF rhinorrhea, and CSF rhinosinusitis in Wikipedia and peer-reviewed medical journals. There is lots of information, but check my other posting, because I will post a lot of things that you would take months to find, and you won't read it any place else in a coherent form.

Serendip Visitor's picture

How to Find Out

Ask your doctor for a beta-2 transferring assay. This is an absolutely certain test. Read the Wikipedia article: Spontaneous Cerebrospinal Fluid Leaks, and especially take note of the section on CSF hypovolemia. Also search CSF rhinorhea and CSF rhino-sinusitis in Wikipedia and in peer-reviewed medical journals. If it is, then see my other posting. And the answer to your question is: It did not start that way, but that has happened at times when I bent forward, just like water. It is gross to suggest this, but it is referred to in medical in articles. If you taste it, it is both salty and has a strange taste which people call "metallic". But don't go tasting different metals, get the assay. Locally it costs $240, and it is completely non-invasive. Just a small sample is necessary.

Chef Dave's picture

Possible SIH/CSF problem

Hello! I am a 29 year old father of a 21 month old baby girl; engaged, trying to make a VERY modest living just getting by, and dealing with my 6th year of constant medical problems since a 2004 work injury ruined the life I once knew. My initial injuries were bi-lateral inguinal hernias; however, after the same surgeon performed each surgery incorrectly, I was left debilitated/disabled with CRPS/neuropathy of the lower extremities and severely entrapped inguinal nerves with several neuroma formations. After the same surgeon performed a third operation (a R-side inguinal neurectomy); again, she made serious mistakes that worsened my condition (that is not me pointing blame without validation...more than 10 expert opinions had been provided by industry professionals stating she made unconscionable and unethical errors in all three operations...I never knew she made those mistakes until years later when I finally saw the surgical reports).

I've been on the operating table 8 times since early 2005; in the most recent surgery, I had a secondary spinal cord stimulator implanted (St Jude Medical/formerly ANS) at my T10-T11 epidural space. I already have another SJM stimulator implant; however, that unit is being used "peripherally;" the battery is implanted in my left abdomen (right below my ribcage/above my belt-line) and there are two lead wires that are run sub-dermal to each side of my groin (one octrode and two quads). The recent spinal cord stim implant required the skills of a spinal reconstructive surgeon; because my vertebral spacing is so tight, he needed to remove two large pieces of the spinous process (laminectomy/laminotomy?) to make space for the large "paddle lead" to be place between those vertebrae into the epidural space. The paddle lead was secured by drilling several extremely small holes in the nearby vertebrae and "tying" the paddle to them with some type of bio-friendly "shoelace!" In any case; the surgeon said the surgery was 100% successful with no noted issues.

Out of 8 operations since '05; this last one was the MOST painful; especially in recovery. I was bedridden for months with debilitating pain to the spinal incision area and my upper right buttock...where a 4 inch wide incision was made to "pocket out" space to place the stimulator battery (fortunately, I received the new SJM EON MINI...my body frame is small, therefore, I needed a small battery). I had to lay/sleep in a practically upright position for over 8 months...when I FINALLY started to lay down, I began noticing incredible discomfort in my T10-T11 region (in the form of dull and sharp stabbing pain).

In August (2010); I began experiencing shots of pain, weakness, and numbness down my right neck, shoulder, arm, hand...within another month; the same problems were affecting my ENTIRE right body from the neck down to the foot...ONLY on the right side. THEN; almost overnight; I became completely PARALYZED on my right side; INCLUDING my head (scalp, eye could not track, mouth, tongue, throat, and even down into my lung). There were FOUR severe episodes of this right paralysis; two ended me up in the hospital (because the other two were too severe to even move me out of the house without calling an ambulance. The second ER trip landed me with a kind doctor who put me onto valium (which I used to take regularly two years back) to control what he described as being the worst spinal/neck muscle spasms he'd ever seen. It also important to note that in all of this confusion and craziness of that two week period; I forgot to recharge my T11 stimulator implant...the day the battery ran out of juice and it died...was the same day that my right side paralysis episodes stopped (for the time being). They ran ALL types of tests; multiple CT Scans, X-Rays, NO MRIS (because I have two SCStim implants...no MRIs with metal...bad combo), blood tests for days, and a lumbar puncture to test for exotic diseases and meningitis (all results healthy and negative). One important thing to note...since ALL of the pain, weakness, numbness, and paralysis issues happened; I was experiencing SEVERE positional headaches like NOTHING I have ever felt. I NEVER get headaches...I once caught a baseball pitch to the head (without a helmet...just playing in the park); well, that pain was NOTHING compared to these positional headaches). By positional, I mean; standing/sitting upright. They start soon after I get up in the morning...by the time I am ready for bed, they are HORRIBLE and taking 2 Excedrin at 9-11pm is not exactly great. The other important thing to note; since the paralysis attacks; I have kept my spinal cord stim unit OFF...only turned on once when my rep checked it for any technical malfunctions. The strange thing is...I always feel this uncomfortable tingling and painful sensation like electricity that is swarming around my incision/scar region on my thoracic spine...which always precedes my positional headaches. Highly unusual.

My PCP, both work comp pain mngt doctors (main doc and NP), Kaiser neurologist, and Kaiser ER docs are all STUMPED about what this could be. My Kaiser pain mngt doctor believes that I have a dural tear in and around my spinal cord stim paddle lead; for one reason or another, it did not show symptoms of a CSF leak or dura compromise for almost a year following the implant surgery (Aug '09-'10). He said that a major CSF leak could explain the one-body-sided paralysis attack (from cranial pressure flattening the base of the brain) and obviously; with the headaches, those are the number one problem explaining the possibility for a csf leak.

I am worried about the delay in how this came about...more importantly; I am terrified at how FAST it has progressed. One morning I am waking up with radiculopathy down my right arm...two weeks later, down my right body...a month later; I am paralyzed completely on my right side...and now; I am into month #3 of 24/7 positional headaches that make migraine sufferers look like cute lil Teletubbies...no offense!! (My fiance has migraines and I know how bad they get). I am going to be having a Myelogram performed to locate the tear and leak...but a blood patch cannot be performed because of a contradiction of blood clotting near electrical hardware presents itself as a major issue. They are saying this will require an open back operation to literally go IN and sew it up.

Has anyone ever heard of a situation like mine or know what I may be in for? Is it possible that my dura was compromised during the spinal cord stim implant (either punctured, torn, or just weakened) surgery, either recognized or not by the surgeon (and subsequently, not fixed), and now; I am in THIS position?

I have a daughter to take care of (I am her caregiver because I am permanently disabled and my fiance works...I spend ALL day, every day watching, loving, and caring for my precious little life). I always try to see the positive side of things, but I understand that in order for "good" to exist, "bad" must co-exist. I am starting to worry about the bad...because I do not believe that as a FATHER and caregiver to my 21 month old child; I should be in this condition...it is a THREAT to my safety and most important; a threat to my baby. I cannot afford (emotionally, physically, mentally, etc) to have another surprise paralysis episode occur while I am driving my baby out to the grocery store or while walking/carrying her up the stairs, or playing outside...I have to be responsible.

If ANYONE CAN HELP; that would be very important for me...and MUCH APPRECIATED. Thank you all so much for taking the time to read this. I know its lengthy; but I truly feel blessed that strangers can take the time to care about other people. The odd part about this whole thing is; just days before my paralysis attacks, I began working officially for St Jude Medical as a patient ambassador so that I could help other people out...those who are suffering from pain like me and worse.

Thanks to all.

Dave

MaryM's picture

Hi Dave, it was so very sad

Hi Dave,

it was so very sad to read your letter. I know what it feels like to try to take care of a family when you are in pain and feeling completely debilitated. I'm just wondering if your CSF pressure has ever been monitored or if you have ever had a CT myelogram or MRI myelogram? These are noted to be very effective in detecting CSF leaks. With the constant pain and positional headaches, it certainly sounds as if you could be experiencing a CSF leak as well. If you are in fact leaking, it could greatly be adding to your misery. I can not stress enough how important it is to get a second opinion by a specialist in the area of your complaint. I don't really know your case or the area that you live in, but I do know that many of us, myself included, are limited to seeking a specialists outside of our health insurance network. You can always put in a request to go outside of your network and get the help you need. I would think in your case, your insurance and/or disability would almost have to grant you this. You may have to put a fight, but if we are not our own advocates, we are greatly risking our health and well being.

I wish you the best of luck!

Mary M

Serendip Visitor's picture

Amen!

Amen, Mary, on that last sentence of support and truth.
ann

Serendip Visitor's picture

CSF Leak

I have suffered for just about all of 2010 with what my doctors finally concluded was Spontaneous Intercranial Hypotension. I too went through a stream of doctors diagnosing me with sinusitus and migraines. They were very quick to load me up on all kinds of medications for pain, none of which worked. I finally ended up at Baylor College of Medicine in Houston, TX and met my neurosurgeon, Dr. Danial Yoshor. As soon as he walked in the room and took one look at me, he knew what my problem was. I had a blood patch done at St. Luke's in Houston by Dr. Nesbit, only to return two months later for a high volume blood patch. This one seemed to do the trick. It made an amazing difference and I am praying that it "sticks"! I feel for all of you that are suffering and know the pain and frustration you are going through, not to mention the toll it takes on your mental status. It suxs, plain and simple. I wish you all the best.

Colleen Murray's picture

CSF leaks and Spontaneous Intracranial Hypotension

just posting to change my email

admin's picture

@Colleen

I've updated your notifications; thanks for keeping in touch. Ann
Colleen Murray's picture

email address change

The last post I received (1/6/2011) was still at my old email address @verizon.net. The company is no longer forwarding the emails to my new address. Have not received any since.

admin's picture

@Colleen

It should be fixed now. Please let me know if not. Ann
Colleen Murray's picture

email address change

I would like to know how to change my email address so I can continue to receive updates. I posted with the new email, but am only receiving them at the old email address. It will expire soon.

gwennie's picture

Thanks Craig

I didn't want to get myself worried and then find out that my symptoms didn't match. I will def be looking into seeing a neuro. The headaches are out of control and everytime I feel one coming on I actually get scared because I know the pain I am in for. Glad to hear you have been freed from this for 15 years. Thats great. Thanks again for responding

gwennie's picture

Confused

If someone could please just read my post and let me know what you think. I have always had headaches. In may of this year I had my precious daughter. I had an epi. About a month or so ago the headaches have gotten to be severe. I wake up with a dull headache and throughout the day it becomes severe. I get dizzy, nauseated, sometimes disoriented, fluid just leaks out of my nose like water, and it always feels like my neck is so stiff. I have even tried massaging my neck thinking that this was my problem. The headaches make me feel like my head will explode. But when I lay down after awhile I think oh I am feeling much better until I stand and start to do stuff again. A day here or there I might just have a small headache all day that doesn't get to the really bad point but most days I feel like I am dying. It is so hard because I work and have a 7 month old baby. I am not the type to let pain get in my way. But I have had to leave work already and ask my fiance to watch my daughter just so I could lay down for a bit. I normally push right thru them if I am at work but once I get home I become pretty much sedentary. I just don't know what to think anymore. I started to kind of feel like I was going crazy because I have been taking antibiotics because we thought it was a sinus infection (I work at a DR office) and I have also tried migraine medicine and pain killers and nothing seems to relieve my headache fully. Could someone please let me know if you think I could have a leak and should get checked by neuro. I understand we are not dr's here but I always feel if someone has gone through something like this then sometimes they are even better than dr's. Thank you all.

Craig's picture

Re: Confused

I had the same fluid you did running out of my nose like a water faucet too...literally ! YOU need to see a neurologist as SOON as you can and get tested. Mine required major surgery. 15 years ago and leak free since. Best of luck too you. Craig

Colleen Patterson's picture

Confused

I just had my 4th surgery in less than a year.
In April '10 started with two trans-nasal surgery, followed by a front lobal crainatomny by the end of May.
Started leaking again and had just had another surgery 4 weeks ago. in through the side of my head, reopened the same area he did the first time.
guess what?
leaking something again!
How major was your surgery?

ann's picture

What type of leak and where was surgery done?

Hi Craig, did you have a dura defect or was the leak coming from somewhere else?

I have a dura defect and need skull-base repair of the bone as well and do not have access to treatment here in Germany.

Who performed your surgery?

And you have been sympom-free ever since?

I am not giving up hope. I will keep trying to gain access to proper medical care.

My herniated brain, etc., has already been diagnosed. Had two failed surgeries by team of surgeons who wanted to try to repair the defects. As they had no experience, it did not work.

Am suffering, unable to work, want to get back into life if possible.

Your answer will be greatly appreciated.

Kathy's picture

Sounds like you have many

Sounds like you have many symptoms of a leak. Which Country are you in. I can reccomend a very good neurologist here in the UK. I suffered a leak a year ago, and stull see him every 3-4 mths so he can check on me.

ann's picture

UK

If you have the name of a good doctor in the UK, please post it on the csf leakage site on facebook. There is a woman on that site who cannot find a specialist who will take her seriously and she lives in the UK

Kathy's picture

UK Doctor

Mr Brown at Addenbrooks in Cambridgeshire is brilliant. When I suffered a year ago from a serious CSF leak he was the one that knew exactly what was wrong. His care was brilliant, and after care second to none. I still have check ups with him today. So go check him out.

Serendip Visitor's picture

what type of leakage?

Hi Kathy, what type of csf leak did you have?

I live in Germany and here there are no known specialists. Had two failed surgeries and am looking for competent surgeons with experience in treating spontaneous dura defects and skull-base defects.

Thanks

ann

gwennie's picture

I'm not sure who this was to.

I'm not sure who this was to. But if it was to me I am in the US. And last week was the first time I even considered that this is what this could be. But I am glad to see that there are people on here that are willing to help others. Wanted to say thanks. I think I really do need to see neuro especially after reading what others have posted. And this pain in my neck is being unbearable and it seems the worse that gets then my headaches get worse. I have a 7 month old baby and the headaches are really starting to take it's toll.

Mary's picture

Kathy, thank you for the your

Kathy,

thank you for the your help and information. However, I am in the US. My main problem is that I am on an HMO that will not allow me to seek medical attention out of my network. I am sure there are many of us out there that are faced with this dilemma. I would really like to take this opportunity to stress to everyone on this site, the importance of choosing a good insurance plan; one that does cover out of network and seeing specialists when you need to. You don't realize how important this is, until you are at a point in your life when you are faced with an illness outside of the norm. Having these monitored and structered plans can cause years of unnecessary pain and suffering. Not to mention, the depression and cognitive decline that goes along with being undiagnosed or misdiagnosed.

ann's picture

Depression and Cognitive Decline

Mary, referring in particular to your last sentence, just wanted to say you could not have said it better. Being mis- and undiagnosed over a period of 10 years is positively unbearable. I like your wording. I have been diagnosed as being severely depressed. Duh, is all I can say to that. I told my doctor given my situation I would like to see him do a better job of things.

Dito on the cognitive decline.

Thanks for sharing. I too do not have access to the treatment which is out there, but my insurance does not cover it.

So I am simply plugging along, bearing the headaches and constant pulsating of the herniated brain behind my ear. Due to orthostatic headaches, I am assuming, do not know for sure, some kind of pressure is happening in the brain and I suddenly for no apparent reason get out of breath and my heart beats out of my chest, right while the prolapsed brain seems to be pulsating out of my skull.

No, these are not panick attacks. I can discern between those and this very different thing going on. I have never been wrong before concerning my body, and I would like to have a medical explanation for what is going on, even if I cannot get the treatment I need. It is my body and understanding helps.

Does anyone have something to share on this?

Serendip Visitor's picture

22yr old suffering symptoms alike...but still undiagnosed...

Over a month ago i started having excrucitaing back pains, i went to the doctors who informed me its back spasms. gave my diclafenic. A week later i had ended up in A&E unable to move in so much pain. they gave me diclafenic, codydramol and diazepam.A week later again i attended A&E i woke up with excruitiating back, neck and head pains! I couldnt move, i had to sit in the dark,i couldnt sit upright because id vomit and my head felt like itll split in half from growing pressure.They admitted me to hospital for tests: CT and MRI etc. Found nothing. The neurologist mentioned this spinal leak a possibility but advised it was getting better on its own to go home and come back if it worsened. A possible lumbar punch and other surgerys were mentioned also.I was on tremodol at hospital,the symptoms seemed to ease up but were made constant. The day i left they gave me paracetamol....A weekend later the symptoms have worsened. What now?

Katrina Fontes's picture

I believe you need a

I believe you need a myelogram with contrast, but only when you are displaying symptoms. If you are well by the time of testing, your results will obviously be normal.
Have you had a lumbar puncture in the past? Were you on long term antibiotics?
Your situation sounds difficult, but keep pressing the doctors until you get answers and the appropriate treatment. You are your own best advocate! Best wishes for a speedy recovery!

Serendip Visitor's picture

Dural tear 5 year+ headaches

I had L5/S1 revision surgery in mid 2006 and wasn't told about a CSF leak that the surgeons were obviously very well aware of at the time of closing (4/almost 5 hours after going into surgery). I accept that it was a difficult operation - mostly due to adhesions from previous c'up surgery - but remain furious that I was left with an extremely serious problem. I'm also cross with myself 'cause I should have known something was wrong when one of the senior hospital team members involved in my care called me up at home on day 4 to find out how I was doing! Why didn't I think; what government hospital employee would do such a caring thing? Instead I thought, oh how nice of him, and what a lovely person he is. Wow, but, what a headache I had developed upon getting up on day 2, and I had told him this when he called me, and was ignored, kind of in a surprised but not way, like "oh really", followed by no suggestion as to what could have caused the headache. Called again a few days later again too, amazing thinking back on this course of events. Next time I saw him I was vomiting my guts out in the A&E and unable to say anything as any noise would cause my head additional pain!!!

I call it a "headache". No-one who has had a dural tear would surely agree that the pain falls into the category of a "headache". Even the worst migraine doesn't come close to what a real dural tear "headache" is all about. 24/36 hours flat on my back is what it took each time to clear my head so allowing me to string thoughts together and verbalize a sentence. During these - what I now refer to as - "brainstorm" periods, I learnt that if I got up at all the agony would immediately hit me like a sledgehammer once again and I would start the vomiting, eye, ear and head noise sensations all over again. Thus I lay in bed, not eating, not drinking, not talking, just wishing I could die right there, time passing in agonizingly slow seconds, eyeballs aching, every sound amplified, zzzzussshing and popping noises occassionally going off in my brain. And then there was my forehead that felt as hot as hell but the rest of my body felt cold. (Hubby was in fact putting damp facecloths on my forehead in the A&E while I shivered under the blanket). Meanwhile my B.P. climbed well over 200 but after 8 hours nothing more was done for me by the A&E doctor attending to me other than the cup of coffee I had been given to drink plus a myriad of injections and tablets I had been given for pain - none of which had done a damn thing to ease the initially diagnosed "sinus headache" and subsequently diagnosed "migraine". Hubby therefore suggested taking me home and I readily agreed. Subseqauently, the hospital remained in denial about our claims viz-a-viz a dural tear but a senior staff member in their neurology department later "broke ranks" and agreed to consult with me. By this stage I knew I had PTSD and had been receiving counselling privately for this condition. So it was that the neurologist independently and quickly recognized the latter and confirmed too that I had in fact suffered a dural tear. He subsequently put both in writing to my GP and I copied this letter to NZ's ACC but they accepted my claim for the dural tear - "treatment injury" - but rejected my choice of treatment provider for the PTSD. Therefore they haven't accepted cover for this condition and I have not been formally treated for same although I did see my choice of provider for a few months but couldn't continue because of the cost not being covered by ACC.

I have come a very long way in my healing - both physically and mentally, and am proud of myself in that I have done much of it on my own (getting back to work without any outside support was a real biggie for me!) - but, even today, I have to be careful in what loads I lift as anything too heavy will bring on a headache albeit nothing like what I experienced in years gone by (the sorry truth is that they've diminished over time but have never truly gone away completely, and I don't believe now that they ever will). Funny thing too is that I also find that other things which can set off a headache are lifting my arms for too long a time (wiping down walls and ceilings, etc., when cleaning) and walking around/being on my feet for long periods of time in any type of heeled shoe.

I am still taking medications prescribed for PTSD sufferers but want to try and get off these in 2011.

ann's picture

Blaming One's Self

Strange, isn't is, how it seems lots of patients blame themselves for what has happened to them. I, too, belong in that category. I could kick myself a zillion times for not having been more perserverent than I was when symptoms began back in 2000. I went from doctor to doctor, staying with each one for awhile in "therapy" which obviously did not work due to misdiagnoses and not being taken seriously as a patient.

Am curious, are you in New Zealand?

I also went to several ENT's while visitig there in 2005 when my symptoms were really becoming unbearable. Each time I was told I would need an ear tube due to fluid build-up behind the ear. No one thought to ask themselves the question, except for me, what that fluid was and where is was coming from and why.

Would you please explain a few abbreviations you used? What is PTSD and what is L5 S1?

Thanks

B's picture

A (hopefully) brighter story

My spinal headaches started in full effect on October 23rd of this year. On Sunday, the 24th, my doctor diagnosed likely sinusitis and prescribed vicodin and antibiotics over the phone. On the 25th, I was brought in to see him, but after vomiting a)from the effort of getting dressed, b) the effort of getting downstairs, c)the effort of walking to the elevator from the car, the receptionist insisted I go to the E/R, where I was treated with IV fluids, anti-nausea meds, and more painkillers. That Wednesday, day five, I went in to see the ENT. All of this time, I was miserable in any position but lying down--no matter how filthy the surface I had to lie on. The ENT ruled out sinusitis and sent me to a neurologist, Charles Fiore, here in New Orleans. Dr. Fiore immediately identified the SIH. He scheduled a blood patch procedure for the following Monday, but explained that if I wanted to get the procedure sooner, I could go through the E/R the next day. I tried this, but Dr. Fiore was off that day, and my regular doctor and the attending neurologist decided to set aside his written diagnosis and treat me for sinusitis and/or migraines. I was admitted and given more IV fluids, ct scans and an MRI, and antibiotics. The rest and fluids did the trck. I was markedly better within a few days and released.

The headaches are mostly gone--I still get them when I go from lying down or bending over to standing or when I strain myself, but I fear, based on what I've read here, that they may come back. The biggest lasting problem is double-vision, somthing that struck just after I left the hospital and has persevered for three weeks and counting. If anyone has had experience with this, I'd love to hear it.

Meanwhile, Fiore and my ENT, the two doctors I trust after all of this, continue to run tests and do follow up. I had a spinal tap last week, but it yielded no new information except some possible spinal stenosis.I suffered no significant new headaches after the tap, even though it took them a couple of tries to get sufficient fluid.

Alisa's picture

CSF Leak - Facebook Group

Hi Everyone,

My dad was diagnosed with a CSF Leak about a year and a half ago. It has been a roller coaster ride ever since. We spent a year at Barrow's Neurological and then a month and a half at the Mayo Clinic. They diagnosed the ICH at Barrow's and treated my dad with over 6 blood patches. They would help for awhile and then he'd be back at square one. We went to Mayo for second opinion and the neurologist there disputed whether my dad still had ICH and told us the more likely culprit was Parkinson's/Lewy Body Dementia (this was because my dad had fluctuating states of mental alertness, tremors, etc). The Dr's at Barrow's and Mayo both claimed that his symptoms had NOTHING to do with CSF leak (despite my sister and I researching on our own and finding where some people did have mental status changes and even Parkinsonism's with CSF leaks). My dad's health continued to deteriorate and we attributed it to the suspected Dementia and thought our Dad was gone. He had swallowing issues and eventually ended up in ER with aspirational pneumonia. He almost died. The only blessing was he was taken to regional hospital and we had to discuss his history with new Dr's and Neurologist. The new DR spent a lot of time with me and reviewed my "book" of medical records, films, etc. He told me without a doubt my dad had serious leak issue (NOT DEMENTIA) and he needed treatment ASAP or he would continue to dwindle and we would lose him. That was last month. I did more research and heard about Dr. Wouter Schievink at Cedar's Sinai in LA. We are driving there tomorrow for a week of tests, etc. I am hoping and praying this will be the answer and we can finally get our dad back.

I just wanted to let all of you know about a Facebook group of CSF Leak sufferers/family members. I stumbled on it about six months ago and they have been a great support and a wealth of information. If you are familiar with Facebook, you just search for CSF Leak and it will come up. You would be amazed at how many similiar stories are on there. Especially with how frustrating it is to find a Dr to help and give relief. This has really PISSED me off (excuse my language) but it is ridiculous that more people aren't getting help that are dealing with this. I'm on a mission to get the word out there and will keep fighting for my dad and everyone touched by this frustrating disease. Please feel free to email me or hopefully you will check out the Facebook group. I will keep you all in my thoughts and prayers! Alisa

email -

Sabrina's picture

Supporting CSF sufferers

Alisa-
I have been suffering since 2005 with multi-level spontaneous CSF leaks/dural tears C5-T2. I Have a very extensive story to tell regarding my expeiences. I am currently writing a book about my experiences, what encouraged me to share my story was family and friends but most of all...every individual in the world that is experiencing these symptoms or an affirmative diagnosis. I was fortunate that I worked in the medical field(in ICU) and had medical knowledge as well as an association with the physicians. I feel this helped me a bit, but one bit of advice I would give to anyone would be to keep a file of ALL medical records,tests,and films!In addition to knowing your medical history in and out you need to keep up with your insurance company. Be sure to keep record of all bills paid,EOB's,procedures and tests that were pre-authorized. One little slip and you are in massive debt...take it from someone who unfortunately learned the hard way. This day in age the pysicians don't have the time to spend on your case therefore you MUST be an advocate for your own healthcare. It's very sad that our healthcare has come to this, but it doesn't help that this specific diagnosis is difficult to diagnose and apparently has many symptoms that may persist after procedures are performed. Dr. Schievink ended up doing my surgical repair in 2007. I am unable to work on disability,lost my insurance and had to go on the state inurance given to you when disabled. This has been aweful, I am unable to see the physicians that I was being treated by in the beginning of the diagnosis and treatment, and do not have the finances to fly to LA to Dr. Schievink. Originally when I was flown out there the first 4 times it was via air ambulance from Pa to La, and insurance paid in full. Losing the insurance has been aweful, I fully understand and sympathize with you all out there who are suffering in pain,undiagnosed,financially strapped and unable to find an educated/skilled,competant physician/surgeon and anesthesiologist.
I have been wanting to get a support group together for quite sometime now, I am so ellated to hear FB has a site. I look forward to chatting with other people like myself, and I pray my experiences both good and bad...mostly bad, will be of some help to others. You know, they do a walk for Chiari Malformation, A goal of mine is to develop groups around the world and raise money to fund research regarding CSF leaks, as well as an organization to raise funds for sick individuals unable to attain propper procedures due to lack of finances.
I would greatly appreciate any input you may have, and if you or anyone else may know of any other sites to read about others experiences, please post them for me. I thank goodness I found this site tonight, it has given me a new hope and a spark under my butt to make my dreams a reality. What I want more than anything is for others to not have to suffer like me. God Bless You all!
Sabrina

Serendip Visitor's picture

ICH and Meds

Does anyone know what are the "best" pain meds to take with ICH? I have been told that my hydro's are just causing more issues with it? You cannot just take nothing when everyone knows what pain you go thru so was wondering if anyone knew of anything else that might help?
Thank you

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