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

Serendip Visitor's picture

I had this about 3 months

I had this about 3 months ago. It started very suddenly and without reason.
It went on for days and I went to the hospital 3 times and they just keep sending me home with pain killers and told me it was a headache and that’s it!
3 years prior to this, I had Bacterial Meningitis and was in hospital for 3 months. I was misdiagnosed then too.

While I was having these headaches, I started vomiting as well. I could head anything because it was to painful to put my head up, and even when I did eat, it would come straight back up.
It was at the stage that my mother decided it was time for the hospital and we weren’t taking no for an answer.

I was in so much pain and the doctors decided to do a Lumber Puncher as they thought it might have been the meningitis. The test came back saying that there was a problem with my white cells, but it wasn’t meningitis.

My doctor booked me in for a MRI and CT scan. The MRI showed that I had a lot of fluid at the bottom of my spine, but none at the top. After 4 days of being at the hospital, my doctor discovered that I had Intracranial Hypotension.

We left it for another 4 days because he thought that it would heal itself.
When it hadn’t, he decided that we would have to do epidural blood patch.
About ½ hour after the procedure was done, I could feel it working!

I had back pain for about 2 straight months after the procedure and it is only now starting to subside. I’m still getting very intense, sharp pains in my head when I bend over and my head is down. I now need to go for another MRI scan to see if something is wrong.

The doctor thinks that it might be from when I had the IHT and my body created more CSF fluid to compensate for the fluid I lost, and now its trapped there.

Can anyone advise me on what they think might be the problem.

Thanks,

Sydney Australia.

Maureen Sprohge's picture

Answer to Sydney Australia and R2D2

I posted a long time ago, but I still get replies and am thankful to answer if I think I can help in any way at all. Like R2D2, I always felt mine was from the original botch job of a 'saddle block' in 1981 during the birth of my first child. They only did the saddle block because the doctor was still at home and my baby was crowning. You know a lot of them don't want to be bothered to go to the hospital until it is literally time to catch the baby. I went through the entire labor without anything (not what I wanted - but they said it was too early - than it was too late). Like R2D2 no one told me to lay down afterward. He punctured my spine numerous times, and it never did work! Only a hole in my spine. The ob told me to sue the anesthesiologist not him. I wasn't even thinking of a lawsuit! He said 'in case of any brain damage.' He is whispering this to me in my ear when I can't even think from the pain. My mom was the only one who told me to lay down as all the ladies 'back in the day' had saddle blocks for labor. She was shocked I was still sitting up when she arrived at the hospital, and it was too late - WHAM - the headache knocked me backward. I was a mess for weeks and my poor baby had colic and needed my walking her. By the grace of God, and being only 25-years old, I recovered and didn't have the headache again until my 50's. It happened spontaneously as they say - when I had a physical trainer pushing my legs straight back over my head while I was on my back after working out. An 'after workout' stretch that is normal for trainers. It was the exact same headache, and it happened within 24 hours of that stretch. I was in my 50's - "don't overstretch people my age - please trainers". My comment is to Sydney Australia, as for "too much fluid" - I will get a similar headache if I take a blood pressure pill with a diuretic. Any form of dehydration or diuretic medicine will do it. I always figured I never recouped enough of the spinal fluid from the original loss. Just yesterday, I had a 'similar' headache because of accidentally taking a blood pressure pill with diuretic of my huband's and losing water all night long if you know what I mean. I am not a doctor, but I can't imagine your body made 'too much' fluid. Of course, that is totally subjective. If it is true, try taking a diruetic and see if that relieves the pain. If I get the headache from having too low of fluid - and diuretics make it worse, my layman's logic is that if you truly have too much fluid, a diuretic will decrease the fluid. It is worth a try. I think we have to help each other. I've learned that about medicine a long time ago. Thank God for this site. I'm praying for all of you.

R2D2 in my ear's picture

Spinal Block during c-section

Six weeks ago I had a beautiful, 10 lb baby boy.  It was a scheduled section, since my first child was a section.  The doctor explained that the would do a spinal block instead of an epidural this time, as that is the typical procedure.  However, he did not disclose the risks involved...

The anesthesiologist tried several times to administer the spinal block (ouch) & my doctor seemed very irriated at her.  He even said it should be easy for her because I was not overweight and my spine was prominent.  I ended up having a general anesthetic.  No big deal- at least it was over with...or so I thought.

The first 24 hours i felt fantastic!  A scheduled section was a breeze compared to 18 hours of labor followed by a c-section!!  The second day after delivery was a different story all together.  I developed an excruciating headache at the base of my skull through the middle of my back.  People's voices sounded mechanical and every noise I heard was accompanied with what sounded like R2D2 translating to me in one ear.  I had a metallic taste in my mouth and could not sit up to hold or feed my baby.  I kept telling the nurses, but they dismissed my complaints.  None of the pain meds helped at all.  The only relief I got was when I was flat on my back.  Finally, the shift change brought on whom I consider a God-send of a nurse who listened to me and immediately stated I was having symptoms of a spinal leak.  About twelve hours later, a different anesthesiologist came to my room and performed a blood patch.  He was very apologetic and told me he was not charging me for this service.  I remember thinking someone must have really screwed up if a doctor isn't charging my insurance.  He said if the patch did not work, they would not do another one.  The leak would have to heal itself.  I had immediate relief of the ringing/noise in my ears, but the headaches continued.  I spent the next 12 hours laying flat, trying to nurse my baby, and praying for some sort of relief.  They tried to discharge me, but I insisted on staying in the hospital another day.   How was I supposed to  function at home with a newborn and a three year old when I couldn't even sit up?  I was still having headaches when they dischared me from the hospital.  Both my OBGYN and anesthesiologist assurred me that the leak would heal on it's own in 5-7 days.  They told me there was nothing more they could do for me and I should tough it out and go home...so I did.  I figured I could live with it a few more days and then it would all be over.  Just another child birth "war story".  Six weeks later, I am still having headaches off and on and today, R2D2 came back for a visit.  It has been 12 hours of beeping and ringing, instead of my daughter's laughter and my son's cooing.  I started working out 3 days ago (after being cleared by my doctor) to try to get back in shape and I have a feeling this is making it worse.  (Those of you who have more experience with these probelms, please let me know if you agree.).  My doctor insists that my headaches unrelated to the spinal leak because it healed itself within a week of my surgery- I am scoffing at this statement even as I type it.  I know I have NEVER had this problem before and all other headaches, including the TMJ, stress headaches, & migranes I've experienced in the past, pale in comparison.  I do not see how they can try to say my current problem is unrelated!  I started doing some research of my own and found this site.  Thank you for helping confirm what doctors want to deny.                 

I had never even heard of a spinal headache before I experienced one.  It is unlike any other pain I have felt in my life.  The thing that really gets me is that no one bothered to warn me of the risks in having my spinal column punctured.  It could have been avoided!  If my doctor had said, "there is a chance that you will not be able to stand for long periods of time, pick up your children, exercise, etc. for the rest of your life without getting severe headaches and ringing in your ears", I think I would have just opted for the general anesthetic to begin with!!  I am extremely sympathetic to those who have endured this for so long, especially those that had no idea what was wrong.  It must be very frustrating and i will pray for you all.  I am praying that this is temporary for me and that my quality of life will be restored.  I don't know whether or not I should see a neurologist, since it has not been very long and it isn't constant.  I am going back to work in two weeks and dread having to sit at a desk for 8 hours a day.  A side note- my back still feels like I have a 8-10 inch diameter gaping bruise around the spot the needles were inserted into my spine.  If you have experienced this, you know why I use the word gaping.  My sister is a chiropractor and said that 4 out of 5 of her female patients that had an epidural or spinal block complain of this chronic pain.  I had no idea about this either and this was my second time to have one.  Maybe the doctors should start disclosing this information.  

Thank you all for sharing your stories. It really helps those who are unsure as to what is going on with their body and can't seem to find answers from professionals.  Hang in there and continue to share as you find help!
        

MaryM's picture

Hi R2D2, thank you for

Hi R2D2,

thank you for sharing your story, however so sad to hear of another person out there that had their life ruined by something has "innocent" as a spinal puncture. I especially feel for you as you were robbed from being able to truly enjoy the birth of your baby. It is such a horrible experience to have to go through. The physical pain is unbearable, and then we are forced to deal with the shame and humiliation of being labeled as a chronic complainer, and in many situations, even a psych case.

My advice to you, and EVERYONE is to quickly move on from any neurologist that is not willing listen to you, or gives you the sense that you are somehow making up or exaggerating your symptoms. They are a menace to your health! Not only do they prolong your much needed treatment, in many cases they set the foundation for future doctors that are willing to view your case. You are unknowingly taking on a very damaging, and lasting label by continuing to let these kind of doctors "care" for you. This site has lined out a few very good physicians and has offered lots of helpful information. It is so important that we continue to share our good experiences (along with the bad), and our knowledge with each other. I continually wonder how many other suffering individuals are out there and have no idea that they have spinal fluid leaking out. They are being told that there is nothing wrong with them...even though they may be overwhelmed and/or disabled with pain and headaches, visual disturbances, balance & depth perception problems, hearing problems, partial seizures, and delclining cognitive function. I really feel for them, because it is a scary and depressing place to be.

Steve K's picture

CSF

To all of you - GOD BLESS. I had a microdischetemy July 4th. Terrible headaches 6 dyas later. I had 2 blood patches that did not work. I had a second surgery July 26th and then a third August 4th. Both of the follow up surgeries were to repair holes from epidurals and /or the blood patches.

My experiences have been no different than all listed. I have been clear for 2 months and I now have head pressures when I walk for any duration. I might have reinjured something becuase I shoveled some dirt over the weekend - and now I am paying the price.

I do no thave headaches per say but really hard pressure and if I bend over it feels like my head is in a vice. I strongly believe I have opened up something - but this one is on me for not being careful.

So my conclusion - you are not alone out there. Athough looking at the ceiling day after day - is extremely lonely - we can get some relief by knowing there are others out there who care and share. GOD is always there to listen.

GOD BLESS all of you.

Carolyn's picture

csf

You can definately re-open the leak after a blood patch. My neurosurgeon warned me after my 6th blood patch that was finally successful, not to bend, lift or carry anything, exercise or do anything for months after. He said the blood patch is like a scab on a cut. It takes a long time to heal. My advice is if you know where the leak is, have a blood patch to the exact location, then lay down for weeks, have someone take care of you, do not get up....let it clot. That is how if finally worked for me. If you do not know the exact location of the leak, have a mylogram done by an excellent neuroradiologist. Good luck to you.

Katrina Fontes's picture

Thank you for you post,

Thank you for you post, Steve! I mostly have head pressure, too, and it gets very frustrating! Verapimil might help..it's a calcium channel blocker for the heart, but it seems to help some people who have head pressure. Best wishes, and God bless you, too!

Serendip Visitor's picture

IH with csf leak IS HERITERDARY!

I am a 51 year old female with spontenaous csf leaks and pressure in my head and in my spine that is terrible. I can actually feel when the pressure gets really high and then leaks because my head will start to feel better and my back or my head will start to feel "wet". I leak from my nose, ears and eyes. My eyes feel like they are "floating in water". My left eye twitches all the time. I have naseau a lot and neurological symtoms as well.
I had a laminectomy decompression/discectomy in 07. It was ever since then that I just got worse and worse not knowing what was wrong. I have been complaining about headaches for over 10 years now and pressure in my head, ears and eyes the same time. It is now in my spine. Always told it was my sinus'es. Never had a sinus infection though~! UGHH!!!
There is NOT enough research on this disease~! All four of my boys, who are adults now are all showing the same symtoms as I had and they are now needing work up for the same thing.
I believe it is heriterdary. Sorry about the spelling here. I have also lost a lot when it comes to thinking and remembering. I also believe that is part of this disease from the pressure on the head.
Any comments are very welcome to;

I would love to know more about this disease and what my children can expect for their future.

Carolyn's picture

Curing a CSF leak

Have you had blood patches to the exact site of the leak and then complete bedrest? If you are not better then please go to Dr. Ken Vives and Dr. Michelle Johnson at Yale in New Haven CT who cured me. It took 6 blood patches and enormous rest but it finally worked. Hopefully you found the location of the leak. If not, you need a CT Mylogram to find it. Dr. Michelle Johnson is an excellent neuroradiologist who performed it and found it. Then, you need to be hospitalized, have the blood patch performed to the site, stay in the hospital without moving for days (have them put a cathedar in...no getting upt) let that patch completely seal the leak. Then have a family member take care of you while you lay down at home for a few weeks to let the patch seal completley. Don't live with this. You don't have to. Good luck to you.

Serendip Visitor's picture

Spontaneous Spinal Fluid Leak

Last year(2009), when I was 14, around Christmas time I began to get excruciating migraines in the front of my head from the left temple to the right. I had started staying home from school more and more often and my mom believe I was "overreacting." I had multiple blood tests and MRI's done until my neurologist ran a specific MRI that he KNEW would find the leak I had and knew I had a leak just by my symptoms. This test was not run that often and he had to put in a special request for it (I cannot recall the name of the MRI at this time but if I remember I would definitely recommend it). Anyway, that had found the leak and I was scheduled for my first blood patch. That went okay other than the fact it is extremely hard to get blood from my arm when my veins kept collapsing, but other than that, the blood patch went well.
A little while later, I had started getting headaches again and we went to see my neurologist, but he figured the first patch wouldn't take. My leak is located up on my back near my left kidney and that is a hard spot to fix with just one blood patch, so I ended up having another, but we had no success there. My mom took me to rush hospital in Chicago to have a consultation and then later - a pre-surgery MRI. When they did my MRI, they gave me a spinal tap without our knowing. That ended up giving me a second leak.
I had gotten the spinal tap on a Thursday and then my mother rushed me to the local ER with a migraine off the charts and just throwing up nothing. I was in the hospital for a week, but I ended up getting two more blood patches, so that's 4 in total. I was put on bed rest that whole week, and for being 14, that was really hard for me to do. The two blood patches and the bed rest got rid of the spinal fluid leak caused by the spinal tap, but I do still have my original spontaneous leak. All of that took course within a total of 4 months of hell and back. I still get somewhat bad headaches everyday, but I'm 15 now and I can somewhat live a normal life and do daily activities (to an extent).
I had to share my story with others who had felt the way I do and I know it's very rare that a 14 year old would get a spontaneous spinal fluid leak. I've been told I should play the lottery. :)

Carolyn's picture

My CSF Leak was cured

You should not go about your life living with this. Do not give up. Go to Dr. Ken Vives and Dr. Michelle Johnson at Yale in New Haven Ct. I had 6 blood patches and it finally worked. You found the location, that is the hardest part. Now, you have to have a blood patch done at the site of the leak, and they need to hospitalize you for a few days without moving and then home for a few weeks without moving...that is what will seal the leak. The blood has to clot the leak and the movement prevents it. Not many people know this. We figured it out together at Yale when I wasn't getting better. Call them and good luck to you.

Rich's picture

CSF LEAK

My leak happened from an edipdural injection which I was receiving for constant inflamation in my L-spine and legs from a pain management doctor. I have had three bloodpatches so far which have not worked and currently waiting on approval for an mri of my spine. I still suffer from those horrible headaches, dizzyness, neck pain, back pain, and general vertigo type symptoms. The medications just lessen the symptoms but the best relief is laying down and not doing anything. The neurologist wants a fourth bloodpatch done by a different doctor than the doctor who performed the first three patches. I'm finding a lot of doctors in my area believe the bloodpatch is the only answer to this problem. However, I can see from this most helpful website, that there are other alternative treatments. Does anyone have a name of a doctor in the New York City area who specializes in the treatment for a CSF leak in the spine or any other suggestions?
Thanks, Rich

Carolyn's picture

I had 5 blood patches which

I had 5 blood patches which didn't work. The 6th one worked. This is my advice to you. Find an excellent neuroradiologist in a big hospital that is reputable. Then have the md do the CT Mylogram so that you can find the exact location of the leak, then have that same neuroradiologist or a team member of his that specializes in blood patches, do a blood patch to the exact site of the leak. When you just have random blood patches in the lower part of your spine, they are just guessing. Those never worked for me. Then, after the blood patch to the exact site of the leak, ask them to hospitalize you for a few days with a cathedar, complete bed rest laying flat which gives the blood a chance to clot, then go home stop working for a few weeks and don't move. Lay down completely and have a very loving family member take care of you, eat all meals laying down, only get up to use the bathroom and do that very infrequently. I did this exactly, and it took 6 blood patches, 3 week-long hospitalizations and then finally...it' worked! They considered me very difficult to treat at Yale, and then they cured me. Try Dr. Ken Vives and Dr. Michelle JOhnson at Yale Medical Hospital in New Haven CT. They are brilliant. Good luck!

Rich's picture

Thanks for your reply Carolyn

Thanks for your reply Carolyn and congrats on your success story! Awesome news!!!
I have had one ct mylogram which could not find a leak but my neurologist said my pressure was a little low so he still suspects a small leak. I have read from many people with this condition that some have had numerous ct mylograms and then they finally find the leak. One suggestion from my neuro was to get some type of radioactive marker mylogram test which would leave the marker in my system longer and maybe detect a slow leak. The neurosurgeon I saw wants to do surgery where he would patch and glue the area where I had the epidural injection that caused the leak but im not sure about this option either. Another doctor believes that after one failed mylogram I do not have a leak and now suffer from chronic migraines caused by the spinal puncture and should see a headache specialist. I have no previous history of migraines so I don't know about this suggestion. Well try finding one headache specialist that takes workers comp.... Also when I lay down many times my eyes tear and leak down my face but never when I stand or sit up. Is it possible to leak csf from my eyes? The neurologist says not possible but im not so sure. Does anyone out there have the same issue? Anyway I'm so confused on what to do but I'm unable to work and have been suffering since august 2010 and this has to stop. I would appreciate any feedback and suggestions. God Bless everyone out there suffering from this condition.

Becky Harrison's picture

The guru is Dr. Bahraim Mokri

The guru is Dr. Bahraim Mokri at Mayo Clinic in Rochester Minnesota. He is the only one that actually has answers.

Rich's picture

Thank you Becky. I will look

Thank you Becky. I will look up Dr. Mokri.

phillip's picture

csf Leak?

Hope someone can help?

My sister in law is experiencing severe headaches, we believe it is csf but do not have a diagnosis because the pain does not go away or diminish in a horizontal position. She experiences some ear ringing, nausea, and loss of balance. She has had 3 blood patches and do work temporarily (4 days the last time. I have read every post on this website and realize there is no quick fix for csf in most cases. I guess I am hoping her diagnosis is something other than csf. Again she gets no relief in a horizontal position. Please help

Thank You,
Phillip

Carolyn's picture

I had a CSF leak which was

I had a CSF leak which was very difficult to treat. I'm sure if she is not getting relief in a horizontal positiion it is probably not a CSF leak. Unless she has other issues that would cause a headache. I hope she has seen several neurologists and neurosurgeons to get a proper diagnosis. If it is a CSF leak, my first 5 blood patches didn't work, the 6th one worked and it's only because they gave me a blood patch at the exact site of the leak and then I layed down after without moving at all for weeks to help it clot. Then I was cured. My advice is that she gets a CT Mylogram done to see if they can actually locate the site of the leak and then do another blood patch where she is hospitalized w/0 moving for days to allow it to clot. It's interesting that she gets a little relief after each patch, that would make me think she does have a CSF leak, very confusing. She has to have an excellent neuroradiologist do a mylogram then the patch at the site. Hope that helps.

david's picture

csf intercranial pressure and leaks

I had a fall in dec 2008 herniating several discs in my neck and back.I landed upside down hitting my head neck and shoulder.After a while blood started to flow from my nose and great pressure in my head.eyes and neck. the pressure and pain drove me nuts.Eventually i started vomiting and getting severe headaches generating from my neck into my head pulsing and increasing in pressure.Eventually the nosebleeds started to subside and began a clear liquid blood combination,giving way to clear liquid loss only.Any increase in anger, extreme pain, during or after even little exercise i could do, included vomiting.I guess any increase in blood pressure also started this process of clear fluid leaks.Even when given a spinal epidural especially with steroids for pain would start the leak on cue.Alas it has been diagnosed as migraines which i do feel play a part but more so by, and or involving a leak.Its been almost three years now and the leak now is much less but refuses to stop and still headaches. nausea, vomiting ,pain .

yagyas's picture

csf leakage

hello.
My father is 67yrs old has got operation of spine (decompression & fixation) on 9/08/2010. After operation liquid is coming out from stitches till now. I discussed with Dr. He says it's not a csf leakage because my father is not feel headach, but after MRI's report Dr. Advised to operate again to stoped this leakage. What should we have to do. Is it right decision or not i'm confused. Please help

Colleen's picture

CSF leaks and Spontaneous Intracranial Hypotension

Reply to Janine:
I had a 2nd blood patch on Apr 28. On Apr 30, I started feeling better in the AM. After lunch, I didn't feel well and lay down. When I turned my head to the right, the room started to spin. By that evening, I was so dizzy and feeling nauseous. As long as I lay still, I was OK. My husband called the radiology group that did the procedure. They said it wasn't related to the blood patch and said the only option was the ER, but that they would only make me comfortable. Later, I started to throw up. After trying to call the Neurosurgeon, ended up in the ER on Friday afternoon, dehydrated and had a bad headache. They said it was vertigo, caused by a virus. My Potassium level was low, so stayed for 2 nights.
Went to neurosurgeon for follow up on May 11, still having headaches and not feeling well. He doesn’t know what to do, schedules spinal tap and MRI. Went to GP to follow up on low Potassium, my left ear was red, given antibiotic.
Go back to neurosurgeon on May 25, MRI is fine, LBP produces fluid and tests fine, myleogram and CT scan shows only leak is from a bulging disc (didn’t know I had one), can’t do anything about it. May 26, go to GP for bad headache. He says my ear is really red. If not better in 5 days, call ENT (Ear Nose Throat) dr. Still having pressure on ears and pulsating tinnitus. ENT dr does audio test, says there is no infection, hearing is fine, can’t do anything about the tinnitus, maybe I should see a neurologist (have seen 3 & a neurosurgeon). By now, they are all treating me like there is nothing wrong, I am just crazy.
I looked to see what was in migraine medicine-aspirin, Tylenol and caffeine. So I started taking 1 aspirin, 1 extra strength Tylenol and having my regular cup of tea. I also have allergy and sinus problems, so I was taking a Claritin. That combination seemed to help. When I found out my leak was fixed, I stayed out of bed all day. I started staying up and taking walks and I eventually felt better. By mid June I stopped having the headaches. I still have the ear pressure and tinnitus at times. It seems, the more active I am, the better I feel.
The dr’s didn’t really tell me anything, but it did seem to gradually get better after the 2nd blood patch and got rid of the red ear. (They never did call it an ear infection.)

Terry's picture

Bad Pressure Headaches since Birth 3 yrs ago

I have had these pressure headaches for three yrs since birth of my baby. I have had a blood patch, brain scans, seen the neurosurgeon, homeopaths, dentists, ENT no one can help me. I live with constant pain and cannot function normally. I am desperate to get well as I would like another child but not when I feel like this.

Serendip Visitor's picture

my mom going thru this, so worried about her

My mom is going through all these tests to see where the leak is. She has to lie down most of the day because her head really hurts her. She had a 3 hour MRI today and we are waiting for the results. I just hope she gets better soon- I'm so worried about her:((

Lauryn's picture

Don't worry about anything!

Don't worry about anything! Your mom will be perfectly fine with the proper time and care of a good neurologist and staff beside her. :) I'm 15 and was diagnosed with a spontaneous spinal fluid leak last year around January. It is not life threatening, just make sure to be considerate and tell her everything will be fine in time. -Lauryn

Terrie's picture

I know exactly where your mom

I know exactly where your mom is right now. Last Tuesday I had the 3 hour MRI and Wednesday had a spinal tap and Myleogram. They found my leak and are going to do a blood patch next week to try to seal it.

I can only tell you what your mom needs right now. I know my kids love me, but they have not been there for me. I feel in the way and was told to "stop having a pity party". Believe me....there is no pity party here. I lay in the bed all day feeling totally unproductive and terrified of the diagnosis as well as the treatment. At this point it is easier to not communicate with my kids because it makes me cry and crying intensifies the headache greatly. I wake up in the morning resiting "I am not going to cry...I AM NOT GOING TO CRY".

I will pray for your mom and for you as you walk through this journey together.

Serendip Visitor's picture

I am so sorry to hear about

I am so sorry to hear about people around you being so inconsiderate and considering your having a pity party!
I know all about then, been there, experienced exactly that.
Well, it seems to be like that in life. No one really knows anything at all about another person until they have walked in their shoes.
I hate it. Have lost a few friends because they insist I go out, get out of my so-called depression....am so tired of being thrown into the psycho category.
But at least now after over 10 years of suffering, which only got worse and worse, I finally got my diagnosis. And two failed surgeries later, which only made the problem worse, I am VERY afraid about going into it again.
I am holding on the the words posted on the Johns Hopkins Medical Center website. I think I read it was in the Dept. of Neurosurgery that I read about absolutely, positively having to have an expert treat you. And to get second opinions, be willing to travel to get that treatment, but most of all, make sure you have a social network of some kind set up for you for the time you will be recuperating at home after the operation.
That too was a disappointing experience after my first two operations when everyone around me told me not to pretend so much.
Even my surgeon told me that the pain I was experiencing could not possibly be a result of the surgery.
Well, it was, and now two years later that pain at least has finally subsided. Actually, it did awhile ago, about 12 months after the surgery.
What I am learning through all of this is that one knows better than anyone else, including the doctor, when something is wrong with the body. After all, it is YOUR body, and not theirs!
Keep your spirits up, even though that is so tough. But maybe it helps to read that others have experienced the same inconsideration and simply non-acceptance of the truth.
Take care

MaryM's picture

I Feel Your Pain

The years of not knowing what is wrong can be the lonliest and most frustrating existence ever. I totally sympathize with all of you that have been treated like you are a psych case, when the horrible ramifications of having a CSF leak are so painful, frightening, and debilitating. Some us are forced to endure this for years, and become so beaten down by what medical professionals, family, and friends label us as. I wonder so many times how many other people out there are over loaded on psych meds (especially the youth) when there is something very physically wrong with them. My personal belief is that there is NO SUCH THING as mental illness. I believe every condition that puts our body/mind/spirit into a negative altered state is caused by a physiological imbalance in our bodies. Everything that goes on within the body, including depression, anxiety, and even auditory and visual hallucinations, are all results of a malfunctions of our pysiological states. This is a proven fact, yet certain types of these altered states are named "mental illness." It is such stigma in our society; a terrible "branding" of people that goes back hundreds of years. It is the result of medical professionals not being able to find answers or solutions to certain patients ailments, especially ongoing ailments. Unfortunately, this "branding" of sorts still takes place in our society, and many of us on this site have endured this at one time or another in our lives. Some of us may have lost the respect of our friends,family, and/or collegues, but we know we have to keep going on; we have to believe in ourselves, and we have to trust in the those around us who really do care. There are some excellent medical professionals out there. We should not be wasting our time (our lives) on the ones who aren't listening or truly caring.

Serendip Visitor's picture

Thank you

Thank you, Thank you, Thank you! You hit the nail on the head on this one! The frustration, shame, people not believing you, thinking your crazy, the doctors telling you, you are crazy. You really start to doubt yourself and everything about your disease and that maybe it really is all in your head.
THANK HEAVENS I have finally got a Doctor who listens to ME, Who believes me when I tell him, I am leaking on my spine and in my head as well as all the other symtoms. I can now finally after 4 years get the help I really have needed for so long and for the first time in my life I don't feel like I'm crazy!
Just to let everyone out there know, there are Dr's that will listen. It took me to go thru SO MANY of them to finally find the right one and now start my treatment. YOU WILL TOO! HAVE FAITH! YOU ARE NOT CRAZY! Do not doubt yourself if you know something is wrong. Plant your feet firmly on the ground, do your own research (like I had to for so long) and find that right Doctor that WILL listen to you!
YOU ARE THE ONLY ONE THAT HAS CONTROL OF YOUR OWN BODY! You know what is wrong.
To the one who wrote this post....I can't thank you enough for saying it just like it is!
Finally...I just want to personally thank my family who has put up with SO much and stuck by me thru all of it. What a happy day it was last week when I finally got my diagnosis!

Mike about to die's picture

please help

I have just read through almost all of the stories here, and mabey my story can help me get some kind of answers..

3 years ago i was on a sitting chest press @ the gym, i kinda cheated on the last rep and arched my back..

i passed out collapsed on spot, woke up 2 minutes later with this headache that felt like the back of my skull was on fire and bruised.
my neck felt swollen and stiff, so did almost all of my upper back muscles shoulder muscles and whole head at that.

But the worst part is the headaches... crippling headaches... that i can not live with anymore... it feels like my brain is trailing behind my head... but in an extremely painfull way, where bending over or jogging or any kind of fast movement like turning to check blind spots while driving.. would give me this eye squinting breattaking heartstopping pain in the middle of my head.

6 months after , with no proper diagonis or treatment everything went away... like a miricle.

just last august 09. 1 year before today.... everything came back x10 for no reason ...

ive been to doctors chiro's all types of specialist healers and now im seeing a neurologist.
No medication has given me releif and even 15,000$ of treatment has done nothing for me.

ive done catscan,ultrasound,mrix4,x rays, bloodtests... all showing that im normal 100%....(sigh)

A special NUCCA chiro dignosed me with a c1-atlas unalignment of 3 degrees... and soft neck tissue damage. but her treatments do nothing..

i now am at the point where i can not even walk, i cant keep my head up by myself, neck pain and head pain is just way to severe, and death looks to be my only way out of this pain.

I just had a spinal tap done, to show "low pressure"
then got a blood patch done... which only increase my pain dramatically for the next 2 days.

and my neurologist is on vacation now... so death is looking to be the better choice right now...

I know for a fact theres somthing seriously wrong with my neck, if i have a leak in the c-1 to c-7 area what can i do ???? they say they cant blood patch there cuz its too risky... what kind of surgery do i need? and where can i go to get help ???

i live in toronto,ON

if anyone can help in anyway i would greatly appreciate it.

-mike

betty-Lu's picture

csf leak

Mike

I have just read your story about csf leaks. I had a spontaneous csf leak in April,2010 and am still suffering from headaches even though I had a blood patch. I was wondering if you found a good doctor in toronto.I live in Brampton

Jennifer's picture

Bless your heart Mike. I

Bless your heart Mike. I suffered from spontaneous intracranial hypertension for a month.
It was the most horrible pain ever. There is a doctor at Cedar Sinai (Schievk) He publishes alot on this disease. Get ahold of him. Also it doesn't matter where they do the blood patch, it doesn't have to be at the level of the leak. Research shows the patches are effective anywhere along the spinal process. Also there is a spontaneous intracranial hypotension page on facebook. The people on there can direct you where to get help. Wishing you the best. Jen

Serendip Visitor's picture

Bless your heart Mike

We have taken our daughter who has suffered from CSF leaks caused by benign cysts to Dr. Wouter Schievink at Cedars Sinai. DO EVERYTHING POSSIBLE TO GET TO HIM!!! He is a wonderful skillful doctor. Our daughter is 23 and has had many days where she has wished to die. We know what you are going through. BTW, Continental Airlines has the best service for wheelchair passengers, and the Crowne Plaza Beverly Hills (Part of the Holiday Inn Hotel group) is quite close to Cedars Sinai, and hae a "quiet" floor for patients. Our prayers are with you. DON'T GIVE UP!

Sabrina's picture

Reply to comment-Mike

Mike-
Just read your post and I'm wondering how your presently feeling and if you made it to Cali to see Dr.Schievink? I had 2 blood patches, the first didn't work. A confident physician felt he could perform a blood patch up high(note:this was the first one he did that high), needless to say it didn't go well, I ended up coding on the table and they called a code blue for me. After being releeased from the hospital I was sent to Philadelphia Pa at which point they told me there was nothing they could do for me and that I would have to live with this pain, I was devistated and had no hope. I made the decision right then and there that I couldn't live my life with that pain.When I got back home I recieved a call from the Jeffeson headache center in Phily referring me to the well known Dr. Wouter Schievink at Cedars Sinai. I was flown (via air ambulance) from Pa to Cedar Sinai 4 times for them to perform blood patches on me. My tears were bilaterally at multi-levels C5-T2. I overdosed trying to end my life after the 6th blood patch was not permanently successful, they were all only temporary fixes. I completely understand what you're going through. After the overdose, they flew me right out to LA at which point they did repeat scans and finally did the surgey. I do not have the positional headache anymore, but I continue to have other symptoms and at times it is frustrating to deal with. I really had to learn how to alter my lifestyle to my disease. I will never be active like I once was and that is very hurtful and down right depressing at times but I thank god that I'm not pushing daises, instead I smell them and look for the positive in every new day and know that I can walk and talk as well as be somewhat sufficient,it could be worse. Schievink is a phenominal surgeon, an angel. My case worker was terrific as well, she jumped through hoops to make sure everything was authorized and that she recieved all letters of medical neccesity in a timely mannor to try and facilitate getting me taken care of. I pray you have a support system,family,friends,caseworkers,ministry etc to help you. it is soooo very important! I coded 3 times from 2005 to present and am still here, I wasen't sure why until yesterday when I came upon this site. Perhaps it's to share my story,and help others like yourself. I see the date you wrote the post and hope that from then to the present you have found help. If I can be of some help please don't hesitate ask. Take care of yourself
Sabrina

Mark's picture

20% cfs fluid on the back of my brain

I'm 37 y.o. and since April have had 2 surgeries for chiari malformation. After my second surgery in June I was down sick for a Month and lost 53Lbs the doctor then did a Mri and found I had fluid on the back of my brain and put me in the hospital for 9 days to drain it down and see if the leak would stop. I'm still having headaches and have pressure on the back of my head. The Dr did another Mri and found 20% fluid on the back of my head and told me thats good and there is nothing more he can do for me. I'm thinking about going to another Dr to see what they say, I know I can't live with these headaches and pain, and there should be something that can be done.

Does anyone have the answer for my problem, is this fluid dangerous to have fluid on the brain know matter how much is there?

ty
Mark

Dee 's picture

chiari malformation

Hi Mark. I had surgery for chiari malformation too. I had a leak and then surgery to find the leak. Leak was not found. My mri shows alittle fluid back there too. Funny,after 2 neurosurgeons, they said the same thing, nothing else for me to do. Its debilitating to say the least. I am in so much pain. Out of work. Even laying down is still painful. So much pain in my ears, head, eyes, neck, shoulders. I am looking for help as well and do not know where to go. Im at my ends. Ive been through 13 doctors in the last year. What's your thought on Chiari Institute on New York? I'm on a waiting list for Mayo, but have read so many good and bad stories. Im scared. Life has just been tugged from us. Praying, and talking to as many people as you can I guess. We're all trying to help each other. Some people don't understand. They think we're exagerating. 2 brains are better than one?

Serendip Visitor's picture

HELP HAS BEEN PROVIDED

I read your story. Please give Princeton Brain & Spine Care
a call. www.princetonbrainandspine.com

Dr. McLaughton is the best! He is a hidden weapon.

Donald Wisniewski's picture

spinal fluid leak

Ido not know if I have the same problem as you my ent says Ihave a tear in the tube that carries spinal fluid in my head. It has been leaking a couple years. the ent says Ineed surgery he cuts ahole in my head above the ear. Lifts the brain finds the leak puts a patch on it. he said sucess rate is about 90%

ann's picture

Please let us know the results

Donald, if you find a good surgeon, and the repair job works, would you be so kind as to post his or her contact details?
Thanks
ann

Craig Mims's picture

Spinal Fluid Leak ...Donald Wisniewski

Don...do you have a brother named Gene in Caldwell ? I had the same procedure as you describe in 96. give me a shout to discuss. Craig

Donald Wisniewski's picture

cfs leak

Craig I am in Illinois no relatives in Caldwell. What can you tell me about your procedure?

Craig Mims's picture

CSF Leak

Hey Don, sorry for the delay writing this..been a bit busy. I had spinal fluid running out my nose in 95, ..send me your email address and will go over it with you there...reach me at, and you will like this email address...it is a good address by the way...craig @ craniumjuice.com

Serendip Visitor's picture

Healthy Functioning

Dear Mike,
The problem is in our society one has to function. No provision is made for unexpected illness. It is especially annihilating when you run from doctor to doctor expecting answers and do not receive them.

In my own personal experience I found that friends and family expect I will get better. They also convey sublimally there is a right to be healthy.

I have found that my csf leakage problem (bilateral dura defects and bony defect of the skull base) may never be solved. I have to learn to live with it which is so much easier said than done. But the pressure from family and friends to find the cure or the treatment which will work puts me under such great pressure.

I will get to the point: I agree with the person who suggested anti-depressants. You have been given a difficult hand to deal with and it is no wonder you are depressed, in pain and at the point of not wanting to live any longer if the situation continues.

However, with proper pain medication perhaps your situation can become more bearable??? I don't know.....

But please do look into getting some support through anti-depressants. I think it is worth a shot. You are suffering enough. You do not need to bear the weight of the depression, too.

Sometimes you have to try a few different meds before finding the one that will work for you.

Please give it try.

Sincerely,
Marie

p.s. On facebook there is also a CSF blog....you can find some support there as well

Serendip Visitor's picture

facebook blog

Can someone share the facebook link with me. Newly diagnosed and I thought I was the only one out there. I have been looking for months for ppl like me.

Serendip Visitor's picture

Mike, You need to contact Dr.

Mike,

You need to contact Dr. Wouter Schievink at Cedars Sinai Hospital in Los Angeles, California. He is the world expert on csf leaks ("low-pressure headaches") and he can help you. If you can send your records to him, he will call you back with a phone consult.

Also, there is a support/information board for csf leaks called "Brain Talk Communities" where you will get extremely valuable information.

Serendip Visitor's picture

World Expert

I did not realize that a world expert exists!! Yipee!!!

I will be contacting him.

Mike, I know where you are coming from with the finances. If you cannot afford to earn your living, and were not born with a silver spoon in your mouth things get pretty grim being out of work. It turns into a downward spiral and gets worse and worse.

The good news is: you can send the documents to the doctor and wait to hear what he has to say.

I know even that can be insurmountable, simply getting the files together and getting to the post office.

Is there anyone you can ask to do you a favor?

I know I spread my request for favors around, make a point not to ask the same person for too many things.

Healthy people not confronted with debilitating illness often simply cannot imagine what it is like. And on top of things, healthy people are busy with their normal lives working, raising families, etc.

Good luck to you.

Marie

Mike 's picture

i wouldnt be able to afford

i wouldnt be able to afford to get there.. or anywhere really, im on my own, 24 and im so crippled i cant even get my self outside.

I have a neurologist helping me , but she went on vaca for a month. I dont know how good she is compared to this guy. But ill try to get my info to him anyway, is there any specialty clinic in ontario?

i was gunna be a firefighter, i was almost there at the 2nd interview stage... but these headaches andthis neck pain ruined everything for me.

Is there any kind of help avaliable to people like me, technically the only thing proven wrong with me is a atlas misalignment and low sinal fliud pressure, no leak has been ofund .. but im sure if tere is one, it has to be in the spot i hurt myself in, thats the only thing that makes sense.
would i be able to get a blood/glu patch done in the upper cervical area without going through the radiology?

i was forcing myself to work with this for almost a year but its way to painfull now to do anything at all..scince i stopped working ,i cant even afford to get myself to any treatments i used to do, i dont know if they can even help but... if i cant even do that, how am i gunna get myself to LA? .. :(

angela clayton nc's picture

understanding

mike
email me i have seizures with mine it sucks also migrianes that make me want to slpit my friggin head open and i would also like to talk to someone for support feel just like you. i have a facebook page angela clayton in roxboro nc

Serendip Visitor's picture

CSF Leak help for Mike

Mike,

I'm not sure how you got my email but my daughter in law has been suffering for a while with a spontaneous CSF leak. She has tried countless doctors and we are still looking to find a way to make her well again. My son, her husband, and I know that she will be well again someday, (hopefully soon). She also suffers from severe depression and has been on an antidepressant which helps her anxiety and depression. If you are not on one, hopefully that will be a starting point!

PLEASE NOTE ALL THE INFO I AM GIVING YOU IS MY OWN PERSONAL OPINION THAT I HAVE ABOUT TREATMENTS/AND OR DOCTORS THROUGH MY OWN RESEARCH!

If your chiropractor said you are misaligned, I would go to the Chiro's that developed the process with the machine that taps your spine back into place. I think they are in Atlanta.

I also assume you have been thoroughly checked for a Chiari Malformation. The best place to go for that is the Chiari Institute in New York. (near West Hempstead?).

The best neurologists in the country are at Mayo Clinic in Rochester, Minn. They lead in nation in Neurology for the last 17 yrs. The best CSF Leak specialists are Dr. B. Mokri at the Rochester, Minn. Mayo Clinic and Dr. W. Schievink at Cedars Sinai, in L.A. Calif. The best Sinus doctor is David Kennedy in Phila at the Univ of Penn. The best surgeons for sinus/sephnoid issues are in Pittsburgh, they engineered the tools to do endoscopic surgeries. If you think it is a nerve issue there are some good specialists at John Hopkins University in Md.

I had a severe headache the other day and new it wasn't 100th of the pain my daughter in law and/or you and many others like you....suffer every single day. I can't tell you how much I admire all of you for sticking it out and going forward. There are answers to every single problem in the world. It could be as easy as changing the home you are living in because either the home or environment is toxic to you or changing the elevation you are living at since all this is tied to Barometric pressure too. Don't give up! Lie down when you can for some relief. Your answer is out there!

There really is hope and help! Never stop praying and believing that you will be healed. Listen to "The Secret". That's how I have always lived my life and was surprised it was A Secret. You have to believe in something and know it with all your heart that it is going to happen. You don't need to question whether you will be healed but work toward being healed and let it happen. It may not happen as quickly as you would like but you most believe with your heart and soul that you will be healed. The more anyone puts doubt and/or negative energy towards anything, they will achieve less "good results".

I truly hope this message gives you some hope. God Bless You!

Rene

Maureen Sprohge's picture

To Mike and all who have

To Mike and all who have replied to him. I must have viewed this site a couple of years ago when I had my leak. Recently, I started getting e-mail like crazy. Thank goodness someone started this website going again. I know from personsl experience that going round and round and round to different doctors for other problems I have had - that many (most) times I get the answers on the internet. For me, I have found the internet to be my best source of information and self diagnosis. Rene and others have said, "I will pray for you." I do hope that we all pray for one another. I had a very bad saddle block back in the day (1981) delivering my first baby. The entire delivery was a nightmare - the doctor assumed since it was my first, that he could stay in bed all night while I wasa told the baby was crowning. A saddle block - actually a needle in my spine one after another - as the first one didn't 'take' - and forceps and the whole bit. No one told me to lay flat, and the fluid leaked out - and WHAM - the headache. Trying to take care of a newborn with a spinal headache at home for weeks was not what I expected with my little baby. For years I never had it again, until about two years ago. I found this site and several others and knew without a doubt that is what was going on. But how I wondered? For me, and for what it is worth, I was going to a personal trainer at a health club. Let's face it - how much do they really know about each individual. Live and learn. She would have me lay down at the end of the work out and literally force my legs back over my head. I am 55 and things just don't work like they used to. Well, I guess I 'sprang a leak' from all that pressure on my spine - I'm guessing in the same spot as when I was younger. I pray literally about everything and especially for anyone asking for my prayers and those who suffer these odd maladies, as I had a brain blockage that took nine months of running to dozens of doctors to get an answer - and by the time the Cleveland Clninic discovered what was wrong, I was told I would die within hours or days. Long story short - the prayers of hundreds of people healed the blockage in my brain (in front of about 24 neurologists during a cerebral angiogram), as well as two of three cerebral aneurysms. That is another story. My point is like Rene's. Pray. Ask God to lead you to answers. Let us all pray for one another. I woudln't be writing now if it wasn't for the prayer of many people all praying as one for the same thing. Let us all pray for one another and storm heaven for each other to heal. Each of us has a story. There are numerous causes and treatments and thank God for this website - literally thank God. I never allow anyone to manipulate me - and never chiropractic - although, for some people - fine. I told the trainer to stop doing those things to me, and sure enough, the leak stopped afer laying flat for a while. I believe we are all intuitive and may have a 'hunch' about what is causing it. Go with it. I am praying for all of you. Please, let us all pray for each other. Maureen Sprohge

Elissa's picture

Oh Mike, I'm so sorry you

Oh Mike, I'm so sorry you feel terrible. I know how terrifying it is to have that type of pain and to not have answers from doctors.

I too believe that my dural leak was in the cervical area, even though no imaging was able to pinpoint a leak. Even the radioactive leak test. Anyway, I decided that since I was in bed anyway 24/7, that I'd stabilize my neck with a foam neck cuff. I wore it for three weeks and also too some extra vitamins/supplements that a naturopath suggested might aid in healing the dura. One day I just woke up and it was better. Crushing headache gone.

I pray you find this kind of quick cure. I'll be thinking of you.

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