CSF Leaks and Spontaneous Intracranial Hypotension

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Biology 202, Spring 2005
First Web Papers
On Serendip

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

stephanie1980's picture

I am also at U of M and see

I am also at U of M and see Dr. Wade Cooper. I highly recommend him. He is very attentive and compassionate. Have you gone through the cistnogram?

Serendip Visitor's picture

csf leak

i have a very bad diagnosed csf leak from my right nostril, it pours out. i end up dripping fluid on everything then at times it spurts so much i end up choking.this started in august 2011.apparently there is a hole just under my pituitary gland in my skull.i have had 2 brain scans now and given numerous samples of fluid.i have just been refered to another specialist that can repair it and am waiting for an appointment.i have terrible like sea sickness and headaches.i was on complete bedrest but have given up on that now, am slowly going insane.i have done nothing that could have caused this.whats this facebook group can't find it??.am in the uk
katie

Connie Paulak's picture

Katie, Try and find Mayo

Katie,

Try and find Mayo trained neurologist in your area, they are very good doctors. Wish you the best.

Connie

Serendip Visitor's picture

CSF LEAKS (Cerebrospinal Fluid Leak) & Intracranial Hypotension

CSF LEAKS (Cerebrospinal Fluid Leak) & Intracranial Hypotension

If that link does not take you right to the page, when you log onto Facebook, type in CSF Leaks and that forum is the first one which will pop up.

Good luck to you.

I have not had any good luck myself, except coming out of two surgeries with no paralysis. No one here can help me. And I have given up. A person can only run against a brick wall for so long, and then one day you simply stop in your tracks, realizing it is of no use. That is where I am at now.

My life is gone, I am sick every single day, and this is how the rest of my life is going to be, I fear.

But your story will have something different about it and maybe you will be lucky and get some information which will help you.

Others have been successfully treated. It's the unsuccessful stories which stay on the forums, normally. Those who have had successful treatment are getting on with their lives.

Again, good luck in your search.

Marie

Tali Danenberg's picture

Dear Katie - try to find the

Dear Katie - try to find the facebook group:
It is very helpful

Misty's picture

Pseudo tumor cerebri

I was diagnosed with PTC last year.. had a spinal tap with opening pressure of around 24 I think?? I was not overweight, I was 169 at 5"1 I guess that could be considered overwieght for height and weight. Since then I have lost weight and I am now 128 pounds.. I have had a HORRIBLE headache for almost 2 weeks now.. It seems to get better when I lay down and really that is all I want to do.. I do not want to go anywhere or do anything.. This has effected my life so much and much more than I can even tell people because they do not understand. I have become very depressed with this condition as well. I am not sure if you can have a spinal leak after a years time. I was feeling alright and then just a few weeks ago the headaches came on really bad. Somedays I just feel like I am going to die, or that I want to die. It gets so unbearable at time. If anyone has thse same conditions I would love to hear from you!

Connie Paulak's picture

CFS Leaks

Well it looks like we have to be our own doctors these days. What I have that I call (moments) is, head feels like it is in a vise from lower back of head over the ears through the temples to the frontal. If I move to fast with my head or step down hard it feels like my brain hits the frontal of my head. My hands and feet tingle and have numbness. My wrist and ankles (when having a bad moment) will spasm. My eyes can't focus, my abs feel like they are tight. I have to sit down to recover, can't look up. Every sound is louder in my head with my heart beat. When my feet fall asleep it takes longer for them to snap out of it. I been dealing with this for last 3 years now and have seen every doctor possible. Now I'm going back to a neurologist, for the second time. I see him at the end of the month and I've taking notes on everything my body does in these moments. I thought I had if figured out when I read the side efffects of the Genric's I take. I'm back to name brand on all except one, which I will get changed with my NEW doctor tomorrow. Do not be afraid to get a new doctor, most of them are so tapped out it's not even funny. I'll let you know what happenes when I see the neurologist. Thanks, Connie

Serendip VisitorBetty Bouchillon's picture

Hey Connie, please let us

Hey Connie, please let us know what your dr said about this. My husband is dealing with something know going on 5 months. They can't find anything. He is very fatigued at all times. He sleeps all night and gets up the next day very tired. Can't find anyone here to help us. Thanks for this info.

Connie Paulak's picture

Hello everyone, I want to

Hello everyone,

I want to update you on my visist to the neurologist today. I do Not have CSF leak, what a relief. The doctor said that I need more sodium in my diet and less water....that was kinda wierd?? The main thing I did was reach when I started to have my moments, that was the best thing I could have ever done. I believe my moments were contributed to taking Generic medications. I'm back to name brands and I feel great. I have lost 30 pounds and my cholesterol went down by 10 points. Yesterday I had my first day of No moments, today I had a small one and that was very mild, I couldn't look up. Please research all the life changes with meds, food, life style, it saved me. Best of luck to all of you, I will still research for people on hear that need help.

God Bless
Connie

Connie Paulak's picture

I will, thak you. How old is

I will, thak you. How old is your husband?

Connie

Connie Paulak's picture

Where are you located? Connie

Where are you located?

Connie

Emili-RO's picture

Advice-help-child

I'm from Romania. I have a girl three years and 10 months old.
Last year he had meningitis. Even before the meningitis runny from nose, right nostril a liquid like tears. Only 2 weeks back, I found out that fluid is cerebrospinal fluid. Currently about 3-5ml runny every day. If someone can tell how serious it is, what to do, if you can live without surgery, which is the best doctor costs? Thank you

Connie Paulak's picture

Advice-help-child

I live in USA not sure what your doctors in Romanis cost. You need to take your child to see a neurologist and geta MRI of his head and neck. He may have CSF, I would check with doctor first.

Wish you the best and your child too.

Connie

Emili-RO's picture

Thank you

Thank you very much! Your advice help us! Excuse my English language, because I am slovak from Roumania.

Connie Paulak's picture

You are welcome. You might

You are welcome. You might have Mayo Clinic trained neurologist in your area, they are very good Doctors. Have a great day.

Connie

Johnh's picture

CSF Leak Be Warned

I am no doctor or have any in depth medical knowledge but would like to tell others my experience of a CSF leaks. Following a (no risk???)sinus operation i began to feel unwell and complained to hospital staff, the surgeon and a GP, none of whom would take my complaints of not feeling well seriously. Five days after the operation i was admitted to ER with symptoms of servere headache, photophobia, nausea and vomiting. My glassgow rating was 3/15. The surgeon had perforated the orbital wall leading to a cerebrospinal fuild leak. This provided entry point for meningitis bacteria which is found in the throat of any health human being. The CSF leak lead to hydrocephalus(swelling on the brain). This swelling lead to the following secondary complications; bilateral third nerve palsy(blindness), inflammatory myelitis( C5 incomplete quadriplegia),deep vein thrombosis, pulmonary embolism(blood clot on lungs) and faecel and urinary incontinence. A CT scan performed at the time failed to detect a source for the meningitis.
All this could have been avoided if the ENT surgeon had have provided me with prop-lactic antibiotics. The initial entry point for the leak healed on its own accord a few weeks after the operation. Prior to operation i was very active 32 year old male who enjoyed the outdoors.

Cheryl's picture

I have been suffering for

I have been suffering for nearly 4 years, been to the ER 4 times, seen two different neurologists. Always diagnosed with migraines, but I am convinced that I have a CSF leak. I have all the symptoms, even numbness in my feet and hands at times and a metallic taste in my mouth, (was told I have neuropathy)I have been seeing my primary physician nearly twice a month for the past 3 years, getting several prescriptions for migraines, but none seem to work. I am in the Kansas City area. Does anyone know of a doctor close to here that has any experience treating CSF leaks with positive results? I have been turned down at Mayo.

Any help is greatly appreciated,
Cheryl

Tali Danenberg's picture

CSF leaks

In a CSF leak there's always a difference in the pain. once you lie down there's great relief since the leaks stops. If you had a lumbar puncture and the presuusre was low then there is a leak

Weary Wife's picture

support group

found this support group for leakers created by leakers, it looks like a good place to get information!

Andrea Fulcher's picture

CSF Leak

In January 2011 I woke up feeling quite unwell but put it down to the after math of Xmas Celebrations. 3 days into feeling ill after vomitting, my hearing going tinny and the most horrendous headache i had ever had, i took myself to our local GP walk in centre, to be told I had a severest of migraines and given migraleve. Next day not satisfied with the diagnosis I returned to be told by a different GP that I had a Sinus infection, and given more tablets to take home. That night I went to Local hospital and although they could see how much pain I was in as I couldnt lift my head up without screaming, they sent me home saying I had a migraine. I perseverred for another week at home until the pain was unbearable. Returned to the hospital and refused to go home until they gave me some kind of scan to find out what was going on in my head. I was admitted that day and endured 7 lumber punctures, each time failing to get any fluid from my spine until the last one which had blood in it. Afterwards I was sent for a CAT Scan on my head, but unbelievable to me it all came back clear. They discharged me with painkillers, and booked me for an MRI scan later that week. After the scan I was called to see my Consultant who informed me that the scan showed a collection of small bleeds to the back of my brain, but as they weren't bleeding anymore I was sent home with stronger painkillers and told they would scan me again after a month!!!! 3 days later the pain in my head was so agonising that I took myself to a different hospital and within an hour of being there and seeing a Neurologist I was admitted and told I have SIH causing the CSF leak. At this point I couldnt walk so how I was originally sent home is beyond me. 4 days later after complete bedrest I had an epidural blood patch. two hours later I was made to get up and the ripping in my head instantly attacked again. it hadnt worked. More MRI/CAT Scans later the Docs confirmed that the tear was in my neck. I was booked in for a Myleogram and Blood Patch. Unfortunately after the myleogram they couldnt see the hole under the CT guidance so the basic epidural blood patch was given again. After a month confined to my bed I was eventually released as it seemed to be a success, although I still have never experienced a time since when I was totally headache free. A month or so ago, I started with the same symptoms again, nausea, vomitting, headaches, burning sensation in my head, neck stiffness and pain - Once in contact with the hospital again I was fastracked straight to the neurology clinic and given another blood patch, but the symptons remained and gradually worsened, leading to a second blood patch the following week. To date, the symptoms are still there but just as at the beginning and building up, and I am waiting to be seen in clinic again to see what the next stage is - dont think my body could bear another epidural blood patch as the pain afterwards was horrendous, worse than childbirth..............praying for a solution soon, as I want my life back, I am only 39 and have years left in this old dog yet lol

pupp's picture

spontaneous csf pain relief

Been suffering from spontaneous csf leak since 1st april 2011. Kept being told it was tension headache or migraine but knew that it wasn't either of those as it was postural (when i was sitting up or standing)
Nothing shows on CT or MRI and I've had a caffeine infusion which didn't work either. Not keen to try blood patch as can't find site of leak(s) Seven months later and still the same.
However I have been prescribed Amatriptyline and now take 70mg per day. It doesn't take the pain away but makes it just bearable enough to get up and about for a little while every day... that and the fact i'm getting used to the constant pain.
Amatriptyline is the only pain killer which has made any difference to me.

Serendip Visitor's picture

Try the Blood Patch

I experienced a CSF Leak in January 2011. They did multiple MRI/CT and never found the hole. On February 9th they went ahead with the blood patch. It took a few days but my spine started filling up with fluid and 3 weeks later I was back to normal. I highly suggest you do the blood patch. You won't know until you try it. Good luck!

pupp's picture

blood patch

Both my neurologist and consultant anaesthetist (he'd do the patch) have said a blood patch within a few weeks of it starting would have beast chance of working and that if I had been diagnosed sooner then a blood patch would be a good idea. (It took 4 months and lots of fighting from me to confirm it was SIH and it's now 8 months since the day it started) Both say that it's not very likely to help due to 1: not finding site of leak(s) 2: it's now 8 months after it started. I've been told to increase my dose of amitriptyline from 70mg to 100mg per day but i haven't found any difference in pain felief so far.

I have been able to get back to work which has really helped me keep sane. However i have to work reduced hours and also take time off every few weeks. But it's very difficult and at the moment I'm really struggling because i'm exhausted, tearful and feel hopeless. Not to mention still being in constant pain.
I'm usually in bed around 8pm (staying up late tonight but i know i'll suffer for it during the next couple of days)

I have found that keeping well hydrated, eating small & often and lots & lots of coffee helps but lying out flat is definitely the best relief.

I hate the thought that I could be like this forever so I'm still fighting to resolve this.

Serendip Visitor's picture

Medical Support

How had those of you out there with relatively quick diagnoses been able to find a competent neurologist who would take an interest?

I suffered symptoms for 8 years until during an exploratory mastoidectomy my osteodura defect was discovered. As the doctor admittedly had not expected that (although you could see it on all the diagnostic pictures, if you ask me!), his repair job failed. Four weeks later I was in again for emergency surgery, repair job failed again.

Now I have to live with this. I am in bed 22, sometimes even 23 hrs. out of 24. Some days I push it to keep my sanity and do something upright which then causes that horrible pressure at the base of the skull behind the ear where the defect is and I get pains and a very strong pulling sensation behind my eyes. So much for the update on what my story is (have written the long version already ages ago on this site).

My problem is, despite the two failed surgeries (csf fluid leakage through the ear tube, now through the nose, confirmed by the lab, current mri and ct scans show the defects are still there, even larger than before the first surgery because during the two surgeries the edges of the holes were "smoothed over," I cannot get a doctor--anywhere here in Munich--to confirm that I indeed am suffering these symptoms! I am, by the most, still being told they know nothing about such defects, do not have time to "read up on it" and that what I am experiencing is most likely psychological.

I cried, kicked and screamed about that for a looooong time, now I can only say to myself "what jerks" they all are for treating me this way.

I need a doctor who will take me seriously, take the time to "look it up" and confirm that what I am going through on a daily basis is indeed the consequence of me having a 3 cm gaping hole in the dura and skull base. I also have a brain prolapse. During each surgery a part of the brain which inevitably falls through that hole was surgically removed, but as the hole is still there, the brain still shifts down through that hole (a 3 cm small part).

Even the surgeon who operated on me, and knows and confirmed in writing that the surgeries did not work refuses to give me any support concerning a confirmation of my symptoms resulting from that defect. He, too, said that he cannot rule out that my symptoms are not psychological. He told me in the presence of a friend that most likely what they see in the latest mri and ct scan images is the prolapsed brain, collection of csf, but that it cannot be said for sure. It could also be "inflamed mastoid cells."

Why are they acting like this? I need this diagnosis and the consequences thereof confirmed in writing in order to get the help I need on a daily basis. I am no longer aber to do things like bend over to clean a bathtub, do grocery shopping, change my bedding. I wait for help to stop by, friends whenever they can "fit me in" and I do not understand why in the U.S. so many of you with even smaller leaks which do not even show up on the images, were able to get diagnosed in under a year, and are being taken seriously.

Why are the doctors I have heard about so often here and on Facebook willing to "look it up," whereas here I have been told repeatedly by so many doctors I have consulted that they know nothing about the illness and have no time to be reading up on it, that I am simply out of luck?

Why am I not getting confirmation of this from the very surgeon who knows because he is the one who pulverized away parts of my skull go "get a good look" and did not replace that bone so now that ear is sunken into the skull on the side where a healthy person has the mastoid part of the skull to support the ear (the ear tube is squished flat causing me to be hard of hearing on that side)?

These are not rhetorical questions. I am trying to make sense of this without going mad. My guess is that doctors here in Germany are not held accountable for their actions. Under law they are allowed to misdiagnose and make mistakes. I have been told this. Also, I think that my surgeon who performed the two mastoidectomies is perhaps afraid to "got out on a limb" for me is afraid it will reflect negatively upon him?

The surgeon told me he has no way of knowing what I am going through, therefore he cannot confirm it. Also, there are not sufficient studies on this illness, he added.

This forum for me is about remaining sane. It is the only place where I can find people who know what I am going through symptom-wise which itself takes a load off. But the rest of my questions.....I cannot make any sense of it and I find it downright cruel.

Are there any members of the medical profession on this forum who might help me to be able to understand the treatment I am getting?

I thought initially, it must "be me." I have tried remaining stone-faced and matter-of-fact, I have tried the friendly approach, I have cried, have become hysterical even twice, I have tried everything, and no matter how I present my case, I get the same response. Two doctors actually told me never to come back.

I contacted the insurance company, who suggests the GP get things rolling, only to have the GP flip out completely and say (more or less, it was in German): "Am I the idiot around here? Oh, just come to Dr. _________, he's so stupid, he'll do anything."

The other GP said, it does not matter what you do, it will all be an experimenting around, and your symptoms are most likely psychological anyway.

Another GP said: "I am not even going to touch that subject! I know nothing about it and I wipe my hands of it. You must look for someone else."

I could go on and on because it has been years of this living hell, but now I must find peace and come to terms with the fact that I do not have access to any doctors "who get it" in the U.S. I live here and the system is not going to pay for me to go abroad to get an operation. I have been told this by the one neurologist I consulted who studied at Harvard and was able to explain what is going on in the brain (the pulling behind the eyes, etc.) that the German system is not going to send me to Timbuktu just because there is someone there who claims to be a miracle healer. He actually said that because I had mentioned a specialist, Dr. Schievink, in California.

And although this Harvard-educated neurologist was able to explain things about my illness, he refused to write the doctor's report required by the GP who sent me to him.

I must stop here as I doubt most have the time or energy to read through all of this.

But please, I am looking for answers as to why I am getting this treatment. I honestly do not understand and I am starting to cry again, so it is time to stop writing about it.

Any members of the medical profession with an insight, please write in.

Thanks and a good luck to everyone.

Marie

So

Serendip Visitor's picture

CSF Leak

HI Marie, I just read your article/posting...did you ever find relief? did you end up going to see Dr. Schievink? If so what happened?
My husband is currently going through a untraceable CSF leak and he is suffering.
Thank you and I look forward to hearing back from you
Kendra

Stephanie Fitton's picture

CSF leak

I came upon your post while doing research. My situation is very simular to yours. It started in February 2011 and I am still sick daily. I just turned 28 years old and there is no known cause for my CSF leak. I have undergone 5 blood patches at different locations in my spine, and none have worked. My leak is too small to be seen on a scan (it always has been) so the doctors are not sure what else to try. Im sick daily and spend alot of time just hoping I will wake up one day and it will be gone. I go for my 6th blood patch next month and just the thought of undergoing that pain yet again makes me feel more sick. It was good that I happened by your post because I really feel totally alone in all of this because my doctor said its very rare so there isnt even much research to go on, nevermind other people who understand what im going through. If you want to compare stories or just have someone to talk to who knows how you feel, send me and email at . Thanks, Stephanie

Andrea Fulcher's picture

CSF Leak

Hi Stephanie,

Just read your comments on here. Like you, there is no known reason what caused my CSF Leak, and after 4 blood patches now, I am waiting to see my Doctor again as the symptoms once again have reared their ugly head - burning headaches, horrendous neck stiffness - there's got to be more to life than feeling yukky like this all the time. I too have had another MRI scan on my neck and spine and this time they were unable to locate the leak on the scan - but i was told that sometimes the scan is not reliable in these instances as they can be so hard to detect - unless yr totally gushing when losing your fluid......i know exactly how you are feeling, about being alone - as its such a rare thing, when you talk to people about it, they dont understand, and sometimes wonder if they realise what a painful and awful thing it is to have to go through. I have today found the Facebook that has a forum on it, if you would like to join and we can compare notes on that, just put CSF Leak in the search engine and it will direct you to their page. Hope you are feeling better soon.

Tali Danenberg's picture

Hi Stephanie, I was diagnosed

Hi Stephanie,

I was diagnosed with this spontanous CSF leak since mid August. I still have pain but it seems to be of a differnet nature. I rest most of the day so I'm noit sure it's th esame pain or some other headache nerve pain. Do you rest / lie down all day?

Tali Danenberg's picture

would like to consult

Would be happy if you can send me you phone number including country and area code as I'm suffering from the same symptoms

Serendip Visitor's picture

do not know if you meant me but here it is

i have a flat rate for the us and for all of central europe so i can call you back for free, if i am the person you meant.

for some reason the facebook connection did not show up properly on the page as far as i could tell so here it is again:

once you get into facebook.com you have to type in csf leaks under groups. this will lead you to the forum within which are several different discussion subjects, all ending as one big one if you ask me.....not very helpful, but at least you will not be alone. i have not found any real answers there than can help me. i am very ill, with two failed mini-craniotomies under my belt am pretty negative these days. am angry at the world and especially at all the doctors who did not take me seriously, who gave me the psycho-stamp on my forhead instead of believing me. i am not angry for getting sick as there is no right to health. also i am not angry at not having been healed. i AM angry, very angry, for having been lied to, not taken seriously (THAT issue again), and having been left alone with this problem by the doctors. not one single doctor is willing to help me find competent treatment here in europe, let alone in the u.s. or anywhere else. alone i am getting nowhere and have given up for the time being. the issue has been put on the back burner where it is going to stay until i either croak, or somehow manage to muster up a new wave of energy to go at it again.

if things are so complicated, and the hurdles are so high, it is not worth it in the end. which is why--for now--i have given up.

hope you have a better journey.

Tali Danenberg's picture

thank you so much. I suceeded

thank you so much. I suceeded to enter the facebook forum

Traci Irving's picture

There are several docs who do

There are several docs who do get this if you can get to them..and travel..I know your dilemma...wouter schievik at cedars sinai in la...linda gray at duke unversity...jawad shah at iinn.com in michigan..they are the best so far we have a page on facebook for support and answers.. mayo clinic in arizona..minnesota...dr mokri...good luck

Tali Danenberg's picture

what is the facebook

what is the facebook connection? can't find it.

Serendip Visitor's picture

facebook csf forum

/

Serendip Visitor's picture

blood patches??

Hi, I suffer from spontaneous csf leakage, the meaning of which is clearly explained at the beginning of this forum: hole in the dura for no apparent reason, erosion of the bone at the skull base, brain prolapse and persistent liquorrhoe.

I request for all comments to be sent to me because I never know when maybe, just maybe there will be a tidbit of information which will help me. I have had two failed surgeries, a long history of false diagnoses and not being believed, being called lazy, it's "all in your head" (hey, but it really IS all in my head!), and even now that the surgeon saw for himself, something which he admitted he had never encountered before in his professional life (which might possibly be the reason why both surgeries failed???), he does not have anyone to compare me to and does not believe that even though all the above has been confirmed, what it feels like to have these problems with the accompanying symptoms everyone knows about (dizziness, pressure, pain, nausea, fatigue), he does not believe they stem from my problem. I am still after all I have been through being told it is psychological.

Well, now my psychological state after years of this, having lost my life, no longer able to work, cannot even keep up a normal social life because I have to lie down so often, I really am depressed and ask myself repeatedly, why DO I hang on to life in this state when there is basically nothing left except the bed I lie in almost 24/7. Surrounded by so many people ignorant of the illness, I have lost friends because they just don't get it and are not willing to truly get informed.

But to get to my point: Please, fellow sufferers, what is this with the blood patches? I still do not understand why they are used and what symptom they are supposed to alleviate. Do you also suffer from a hole in the dura and skull base? Or is your illness something completely different, but with the same symptoms associated with losing CSF?

I keep reading entries, those affected understand each other, but I have never heard of having a blood patch before entering this site with my problem as the title of the site is the description of my problem. But there are so many people who talk of the blood patches....

Would like to get informed as I wonder if this is a type of therapy? And if so, does it work? And for whom is it suited?

I have been told to my face here in Germany, I am out of luck. I need THE expert surgeon who has successfully performed the operation at least 25 times and I have been dealt a poor hand. It is my own tough luck. All the other doctors I have seen did not even take the time to look the illness up. I have been thrown out of doctors' offices with my problem. They shrug their shoulders, say they have never heard of such a thing, and I am on my own.

But I am not on my own as there quite obviously others who have had the same horrible experience. However, some have found healing. I do not have access to the experts in the U.S. for insurance reasons. I had sent all my records to Johns Hopkins and a year later was asked to come in for a visit! How on earth can I travel alone to the U.S. when I cannot even sit upright for longer than a few hours? And who is going to pay for it? I am penniless as I can no longer work. Life really is bleak now. And the worse part is, there is no end in sight. I could go on living like this for another 30 years. So I ask myself repeatedly, just what it is holding me back from taking the proper action to end it. I have no quality of life left.

I am very, very sad, and hopeless.

Serendip Visitor's picture

Don't give up!

I hope this message finds you well. I felt a stong need to reply to your post. I too have a csf leak and am in bed 24/7. Unable to do anything except eat, use the bathroom, and shower. There are options to fix it. Blood patches sometimes work. It's where they inject some of your own blood into the space surrounding the membrane that holds your spinal cord. If that doesn't work they can inject a glue into the location of the leak. I'm in the middle of determine the right corse of treatment. I know you are having a hard time getting the help and treatment you need but maybe you could get in touch with a dr in Germany or the us that will help you for free. I've found a doctor in San Francisco California that has agreed to look at my scans for free. His name is William Dillon. Dr Keith Black is a neurosurgeon at cedar senai in California that will look at your scans for $50. I bet if you call and tell them your situation he may look at your info for free. At least they could confirm it and relay the message to a doctor there in Germany. I know it's exhausting dealing with everything when it takes all you have just to sit up and eat, but even going through it all I still believe everything happens for a reason. This will make you stronger... Hang in there and bug doctors until someone agrees to help you. It's your life! Fight for it!

Traci Irving's picture

csf leak in head

blood patch will not work for leak in head..sorry...only surgery can repair...did they find leak location? I understand your saga..I really do..took years to find the answer..turned away so many times..told I was crazy..dye test no show leak...found new skull based nuero who finally got it...had bifrontal craniotomy to repair defect in cribriform plate with defect running into sphenoid sinus...test that discovered the leak was called intrthecal high pressure cisternagram (spell)..very invasive but no choice..had to repair anyway so why not find exact location to make sure it gets repaired correctly sure dont wanna do it again...such a very long complicated story..so I do understand your mental well being...I was THERE !!! ask anything you need..I am here to answer

Serendip Visitor's picture

Literally a hole in the head

Yes, my defects in the dura and in the bone of the skull base were detected during surgery, mastoidectomy, performed in 2008. I was admitted to the hospital being diagnosed as having a cholesteatoma (a type of tumor in or somewhere near the ear, don't know, because that's not what it was!). During surgery the surgeon found no cholesteatoma, nor a tumor of any kind, but a herniated brain staring at him from the hole in the dura. Then he looked further and told me where people normally have bone at the base of the skull, I do not and lots of CSF literally squirted out at him. Cannot really picture that, but after surgery he admitted he had never seen such a thing. He "closed" the hole, using only two layers of neodura and fibrin glue and placed another ear tube in the left eardrum, the side affected. Well, needless to say, I was REALLY sick after that, and 4 weeks later was in for emergency surgery, still not really understanding what type of illness/defect I have. I was so sick because the CSF was dripping through the ear tube 24/7. When I asked the surgeon if we would have better luck this second time around, he told me I was free to get a second opinion.

But I could not even stand up, let alone go and try to find a different doctor. So I was in for "emergency surgery" with him and the ENT department head.

After the operation the head of the ENT dept. told me I would have to keep my fingers crossed because it did not look promising. My heart sank. It was not until all of this was over and I did my own research that I found out neither of them had had any experience whatsoever in treating my problem.

I was lucky, though, no facial paralysis. But I do not know where to turn. The surgeon who performed the two surgeries told me he cannot do anything more for me, nor can he direct me to anyone competent.

I asked for an appointment at that hospital to see someone who specializes in skull-base surgery and the neurosurgeon I saw told me he would give it a try, but alone. No ENT involved. I asked him if he had ever successfully treated a case like mine before and the answer was no. So I chickened out and cancelled the surgery. There would be too many risks involved for something that most likely would not work out.

He was also going to try a two-layer closure using muscle from the upper thigh. A different neurosurgeon I saw at a different hospital said that would cause me more problems (the incision at the thigh) than anything else, and that there is no bone in the skull to attach the muscle tissue to. And the question was raised as to why the ENT who performed the first two surgeries would not be involved as he was THE expert in getting it right around the facial nerve which is difficult to operate around. That other neurosurgeon suggested I stay at the same hospital for surgery, but that it would have to be interdisciplinary (ENT and Neuro).

Back in 2006 I was in yet a different hospital for the aural fullness and "water" in the ear, and when I had asked what was causing that and if they would not be doing the recommended CT scan of the skull, I was brushed off and simply told "this happens sometimes."

After my two failed surgeries I went back to that hospital where I was in 2006 and they turned me away saying that they refuse to treat me as the patient/doctor relationship has irrevocably damaged (when I had the appt. in neurosurgery I had mentioned the stay in 2006 and how the ENT dept. did not perform the requested tests).

That last experience was so strange and upsetting because I was scheduled nevertheless for in-house diagnostics in neurosurgery and 3 days before my appt. I received a letter from the head of neurosurgery cancelling with those words above (that nonsense about the patient/doctor relationship being irrevocably destroyed).

There is more to that story, do not want to rehash everything as it upsets me each time.

Now I am financially so broke, I sometimes have no money for food because my disability pension is so low. So I have no means of getting anywhere else to look. I only have the 3 hospitals in Munich which I wrote briefly about above, those experiences actually took over a year. Three strikes and you're out. All three are a no-go for various, REAL reasons.

The surgeon who performed the first two surgeries confirmed (MRI and CT scan) that the problem is still unsolved and the fluid I am now losing through my nose (rhinoliquorrhoe) is the CSF which cannot flow through the eardrum anymore because the ear tube was removed so the path is only "detoured" so to speak.

What doctor/surgeon would voluntarily subject himself to having parts of the skull pulverized and opened by someone who has never treated that specific problem before??

All my other doctors told me I should have asked for the statistics first! But at the time I had no idea what I have. And those very doctors who lectured me on how one asks for the numbers first have told me they do not have the time or money to research the situation in Europe for me.

I am sure that somewhere in Europe there is a surgeon who has successfully repaired this type of defect. But I have no idea how to find that person. I have researched, and called all over the place. It usually does not work out because either a) they want money up front and I have to go there personally for a talk or b) the communication stops as soon as I ask "THE question: How many times has this surgery been successfully performed at your hospital?" Then I never hear back from them again.

That's all for now.

Thanks for writing.

I am tired and it's REALLY hot at my place. 104° / around 38° celsius and no AC.

Have a nice day and maybe someone will read this who has an idea or has heard of someone in Germany who can help.

Regards,
Marie

Connie Paulak's picture

Hello Marie, I called our

Hello Marie,

I called our Mayo Clininc in Minnesota, USA to see if they can help you. They said there are neurologist at these locations and not sure what they specalize in, but at least it's a start for you. There are 3 one in Berlin, Stralsund and Martins Reed (Not sure on the last ones spelling). You can also call the Mayo Clinic yourself and maybe that will be more helpful to you. You may want to look up on the internet if there is any Mayo Clinical trained neurosurgon in Germany.

Mayo Clinin Minnesota USA 1-807-284-2317

Hope this helps you,
Connie

Serendip Visitor's picture

Thank You

Connie, I would like you to know that by placing that phone call and trying to get that information you passed on is the first--and I mean the very first--effort in the right direction I have received over the years from anyone, including my large family, once large circle of friends who thought they knew it all better and that the problem would be so wonderfully easy to solve in this fantastic German medical system, and including every single doctor I have ever seen for this problem. And the number is high, including the surgeon who performed the first exploratory surgery on my, saw that he had never ever in his career been confronted with such a problem, which of course caused the repair to be a failure, who then performed the second surgery together with his department head--without consulting neurosurgery!--and that repair job failed again. After all that, for those doctors to have gone into that second surgery, pulverizing away large chunks of mastoid, which they did not replace, just to "have a go at it" is so unbelievable, they did not even consult neurosurgery in the hospital I was being operated on knowing full well that they had NO BLINKING IDEA what they were doing in terms of dura plastic....... I expected the least they could do is to network and help point me in the right direction.

Connie, to say there are neurologists in Berlin is like saying there are neurologists in NYC. Great. How do I know whom to consult? I have been to so many here, and the only one who was familiar with the illness told me: "You need THE expert who has performed this surgery--successfully--at least 25 times. Otherwise further surgeries will only make matters worse. You have been dealt a bad hand."

When I asked how we are going to find this specialist, the answer was, he had one person he could ask, and if they did not know, then I would be out of luck. I asked what about the rest of Europe, and the reply was, we are not paid for cases are rare as yours. The national healthcare system in Germany has no provision for cases like yours.

I, too, think there must be someone somewhere in Germany or Europe who has experience in dura plastic and skull base plastic, but how I find them/him/her?

I simply cannot face another dead-end shot in the dark, you know, simply opening the yellow pages and asking for help. I have been turned down every single time.

I don't know what it is like in the U.S., but over here doctors first and foremost are interested in earning money. They are not going to take on a case like mine which would require them to a) get informed (not too difficult, I got it pretty quickly and I have no medical training) and b) network to get me pointed in the right direction.

Any neurologist will not do. The last one I saw had never heard of the illness. And I will say it again, the problem here is that the doctor will tell you right to your face. No, they are not going to research the subject. They have enough to read, do, and they are not paid for it.

This is not a lie. What you do get out of them, if anything, is that the symptoms I am experiencing are most likely purely psychological. Which is when I request him or her to look into the matter and read about what other patients experience, that I am not alone, am not the only on this planet with the problem, and that NO, I do not need a shrink because I am a chronic csf leaker with a brain prolapse that REALLY HURTS when I am in the upright position for any length of time. I DO see a shrink once a month to help me deal with the insanity of this situation! Because alone I cannot take it. I will go over the edge with this kind of treatment.

I think when you called the hospital they assumed things are over here as they are in the U.S. (if you have $$$ or insurance coverage, otherwise over there you are pretty out of luck too. There was one really sick man on the Facebook forum who was so sick and had used all his money on the first treatments that did not work, when others told him where he could turn next, his despairing answer was, "How am I going to get there? I have no money." I cried when I read that. I knew he meant it, and it was not going to happen for him.

The world is a cruel, unfair place for many. Others have it even worse. No access to food or shelter. So I must remind myself all the time, Marie, you are getting a really good lesson on reality, what it is like for millions (or is it billions already) who have it even worse than you. Yeah, you kind of stop laughing and smiling once you've felt that realization in your own bones and body.

But I am sooo touched that you, without ever having met me, went through the trouble to place that call and pass the information on to me. I will look into it and I will place a call myself. And funny enough, what you understood as Martin's Reed is Martinsried, right near Munich where I live!

Thanks again and God bless!

Connie Paulak's picture

Your welcome Marie, I hope

Your welcome Marie, I hope that helps you and more. I also found a link for you to look at: http://www.neuro.mpg.de/english/junior/index.html Maybe this will help.

Connie

Traci Irving's picture

I am so sorry that you still

I am so sorry that you still cannot find an answer Marie...I pray every day for God to show these docs what this illness is and what it does...I do not know of anyone where you are at for I live in the states...have you been to facebook csf page? you might find a link to a doc there? I so wish there was something ANYTHING I could do to help everyone who suffers..heartbreaking this is..dont lose faith that you will find some help..I know you just want to scream NO at me but you have to keep pushing for an answer..LOVE

Mary M's picture

csf leak in head

Hi Traci,

I have had the MRI myelogram and CT of my head with contrast, which did not show the leak (even though I have been leaking from my left nostril for over two years). I have always believed I have a cranial leak. I recently had a epidural blood patch as my csf opening pressure was found to be less than one and I am very symptomatic. The blood patch did not work. I would really appreciate talking to you about the high pressure intrathecal cisternogram. Is this different from a regular intrathecal cisternogram? I also very curious as to your outcome after your surgery. Is there a way to communicate on this site besides the open forum? Thanks, Mary

Traci Irving's picture

I have an email address

I have an email address The test preformed was a cisto just after the dye was injected they infused me with artificial spinal fluid..that way it forced the dye to come out of the leak to be able to see it on the scan because pressure is usually so low thats why the dye has a hard time reaching the area of leak esp if its in the head or a very slow leak..its brilliant..I have spoken to so many people and they ask their docs and they say they either never heard of it or its to invasive? no different than reg cisto once again so I dont understand their reasoning? forcing it to leak can make it worse and it did for me..but has to be fixed anyway so why not find it and not go in blind to fix? blood patch will NOT work for leak in head..it will give you some relief cuz it will raise your pressure for awhile..but short lived..but another good clue that you have low pressure..hello? The ONLY reason that a person has low pressure is a LEAK..I read an article about emory in Atlanta they stated they DID not endorse this test either? I leaked from my nose also ALOT for years and even more in the end..was told there was no way it could come out my nose? My surgery was a success !!PRAISE GOD..!!! Still alot of things to overcome..bed ridden for 2 years..leaked for 10 years just the last year before leak found and surg it became chronic...took year to find doc..3 months flat on back somemore to heal..some setbacks so just since may been geting around more severe muscle atrophy..vision still blurry at times..tire easily..brain still can feel heavy at times..chest still aches but no pressure like before..gonna take time for brain to relearn to be well..trying to give you hope the best i can it is a terrible thing to endure and not an overnight thing to heal from if its fixed...LOVE AND HUGS

Francesca's picture

Hello Traci, I have been

Hello Traci,

I have been suffering for years with horrible headaches. I was diagnosed with pituitary tumor and migraines at Mayo Clinic 20 years ago.. I have been on many migraine medications over the years with really not much relief. I finally went to a neurologist after a particularly intense bout of headaches over this last Christmas. I went to Dr. James Chandler at Northwestern University Hospital. He had me do an MRI with contrast before I even saw him. When I came in for my appointment he told me that I had Intracranial Hypotension. I was floored. I started reading up on it since I had never heard of such a thing and was taken aback by the diagnosis. I had the classic symptoms of horrible headaches made worse by standing, severe nausea, vomiting, ear fullness. I was not being able to work out and always had to be careful not to over exert myself. He then had me do a spinal mri which showed an arachnoid cyst and several smaller cysts. I have had 2 blood patches and they have not worked. I had a bad headache the other day, 12 hours of excruciating pain and vomiting. My headaches usually subside by the next day. While I am certainly not 100 percent, I still go about my day as best I can. I feel lasting effects of my headaches for days like head fogginess, irritability and sound sensitivity. I wonder what all of this is doing to my brain long term. I have a husband, 3 kids, a job and house to take care of. I can't stop. I really do not want to do another blood patch. I have been reading about the cisto and wanted to hear what your experience has been with it. Was it painful during and after? Did you have a stuffy nose while having the headaches?

Serendip Visitor's picture

Open Forum

Hi Mary,

This is Marie who suffers from a hole in the dura, brain prolapse, and erosion of the skull base.

If you come up with anything that can help others with a problem similar to yours, please do post the results.

This is what the forum is actually for, to share information to help yourself, but also to help others.

I know my entries have probably not been any help to anyone except for someone else affected to know they are not crazy and not alone.

In turn it has been psychologically helpful for me to know I am not alone, although it is a hard cross to bear without access to competent treatment.

Any information I receive, such as a recent post with the names of around 6 places to turn, is helpful. I am--when I get a new gust of energy--going to contact all those places.

Johns Hopkins did not work out for me due to insurance matters.

Please post any headway you may make.

I wish you all the best.

Regards,
Marie

Katherine S. Baber's picture

reply

Your post hit home with me. My journey has been since 2007. I had to quit my professional job of 32 years b/c of this right-sided down my spine to my unbelievable pained tailbone mystery. My neurologist has not fought for me or with insurance b/c he has a personal grudge with the peer-to-peer doctor, NOT b/c my insurance is not good. I,too, am suffering and have suffered through the "crazy" times and labeling with my family and those around who see me still alive but are so limited that they think b/c it has not been diagnosed and identified/cured that I must be "crazy." not suffering. I could never express the HELL I have been through and my 4 children and spouses still continue to put me through. My daughter is a Nursing instructor and worked in Duke Neuro for 7 years before she got her masters. Sad to tears and beyond her intolerance and never an offer to help in this journey. I suppose she only saw and helped take care of the diagnosed ones, not the journeys before. Her Daddy and I raised her (and her siblings) better and with a christian foundation that should have (and presently) been shared. It's a hard journey of faith to continue every waking moment with insurmountable pressure and pain. I know you and others can SO identify. I want to write a book someday noting my horrific journey and I will name it "The Other Side of Crazy." I pray my Neurologist will call this afternoon with results of a lumbar puncture and 5 vials of spinal fluid (to test for everything imaginable ) that I had last Friday afternoon. I think my neurologist is finally validating me after 4 years of trying to make it a right-sided migraine. I have an appt. with another neurologist next Wednesday. Please say a prayer for some knowledge and diagnosis. Thanks for listening to me go on. Kathy

Connie Paulak's picture

Kathy, Sorry to hear about

Kathy,

Sorry to hear about you problems, both emotional and physical(SP). I hope you can forgive your Daughter, for she does not know what she does. To forgive may help you heal and feel better, the right side of the body present the future in my Native American Spirituality. Deal with the passed and forgive and move on to the future. Also it could be your doctor, do not be afraid to get a new one. Not sure where you are located, look for Mayo trained Neurologist. Hope that helps you, I'll pray for you.

Connie

Serendip Visitor's picture

Blood patches are when they

Blood patches are when they draw blood from your arm and then inject it into your spinal column with hopes that it will find the hole your fluid is leaking from and clot there. Usually it does take more than one for severe sufferers, but they usually work. I, myself have had three, with the third being a high volume blood patch. This is where they injected twice the amount of blood than they did the first two times, and then laid me flat on my back and tilted my head towards the ground so that the blood would "run up" my spinal column. This condition is very tricky and unfortunately it takes a few visits to a doctor to finally get you back on track, but if you can find the right neurologist, then you are in luck. My doctor was Dr. Daniel Yoshor at Baylor College of Medicine in Houston, TX. He is the head of the neurosurgery department there and I would recommend him over and over again. The doctor that did my procedures was Dr. John Nesbit at St. Luke's Hospital in Houston, TX and he was great as well. I wish you the best of luck and it will get better. I know you are down and depressed, but don't let this problem beat you, it can be cured.

Kane's picture

I understand your feeling of

I understand your feeling of desperation. I am fortunate enough to live in Atlanta, GA and have access to Emory Health which is one of the countries top medical schools.

To answer your question (remember, i am not a Dr.) The blood patch is used very commonly to heal CSF leaks caused by an epidural injection, usually from anesthesia. According to my Physician he see's these quite regulary. It is simply that the site of the injection does not heal and needs to be patched. However, spontaneous CSF leaks which is what most of us have on this site are not easily found because we have had no injections.

What a blood patch is and does matches it's name. They take your own blood and inject it into the spinal column. In most cases, again where they know exactly where the leak is they inject right at that site. For us they simply inject your own blood and hope that it travels through the column and locates and clots the leak wherever it may be.

I have had 2 of these. One in the lumbar and one cervical. I did get some relief but it was short lived. When the procedure does work the results are felt almost instantly so it is worth a try. One thing my neurosurgeon explained though was that the Blood Patch is done on the outside of the Dura not from inside. The reason i mention this is because when i had my first Myleogram i actually felt better and after my second i felt even better. When i discussed this with the doc he said the radioactive isotopes are injected inside the duraand the material is very, very thick and in many cases will seal the leak with scar tissue.

Hope this helps...

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