CSF Leaks and Spontaneous Intracranial Hypotension

SerendipUpdate's picture

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

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.

Serendip Visitor's picture

I think I might have a CSF leak

I think that I might have a spontaneous CSF leak. Where do you recommend I go for help. A neurologist? Neurosurgeon? I live near Denver. Does anyone have a recommendation?
Shannon

Gail P's picture

CSF Leak Treatment - Denver

I have been treated very recently by Dr. Oro, a neurosurgeon, at the Neuosurgery Center of Colorado, 303-481-0035. He ordered a blood patch for me which was done two days ago at the Medical Center of Aurora. Still not sure if it worked, but hopeful.

shelly's picture

i received an epidural with

i received an epidural with my second child. it took the dr. 2 trys.. i instantly had a massive headache.. he took the needle out. 6 weeks after my daughter was born i had optic nuritis.. they thought i had ms, but through an mri of the brain, it came back negative, and said it was just a virus.. i have head the same head ache for almost 3 years.. i am eghausted with dr.s i am seeing a neurologist, who will eventually do a spinal tap to see if i am leaking csf. can anyone suggest to me if a mri of the spine is better than a spinal tap.. let me know.. i beileve in miricals, i am just so lost with this one.. would really like the headaches gone..

Serendip VisitorMaM's picture

Cerebrospinal fluid leak

Check this forum out it has helped me & others in contacting doctors that have experience in cerebrospinal fluid leak along with much needed support

http://braintalkcommunities.org/forums/forumdisplay.php?f=126

Denise's picture

MRI Spine

I know the MRI of the spine is Very long, I had to be drugged to get through it. It was several hours long. Spinal taps are dangerous and could cause more issues and be painful if they hit a nerve. I have had both and neither were plesant....

Denise

Kathy's picture

A spinal tap reavealed that

A spinal tap reavealed that the pressure was low suggesting a leak. MRI of the brain confirmed as my brain was 'slumping' by then. I would go for the tap first.
Good luck!

Kathy

Lonnie's picture

Spinal Leak

I just found this website and and thought I would tell my story. I had a spinal leak in 6/2000. Now knowing what happened, I look back and realize that I started having problems 6 months earlier. I just did not feel good, aching body (mostly legs). When it really hit me, I started vomiting, had a pain in my back and horrible headaches when I sat up. If I laid on my back, my headache went away. When I sat up, I felt like someone slammed my head against a brick wall, I lost all color and would start to pass out.

I was in & out of the hospital, 4 times in a month, due to dehydration and while they ran tests. They kept telling me I had migraines. It was finally suggested that I might need a blood patch. They did that and within a week my headaches did get better & I could sit up but they did not completely go away.

During this time I was trying to get into the Mayo Clinic but was unable to until a few weeks after the blood patch. The neurologist knew exactly what was wrong. He explained that during the time before my blood patch I had no fluid around the brain and my blood vessels expanded to take up some of the space and protect the brain. Now that I have fluid and expanded blood vessels, there is too much in the skull cavity. He perscribed me medicine to shrink down the blood vessels and I had no more problems.

My neurologist said it was very unusual for me to have a spinal leak due to not having a spinal tap or any surgeries to lead up to this. He invited me down to speak in his class. I told the class my symptoms and they had to guess my illness and tell how they would treat it.

Unfortunately, I fould this website because 10 years later, I am having symptoms of having another leak. I do not want to wait until I am flat on my back this time, I will be going back to the Mayo.

gin's picture

Just wondering, what kind of

Just wondering, what kind of meds did they prescribe to reduce the swollen blood vessels? I feel everything in my head is swollen and pressing on the nerves.

tori's picture

Lonnie, I just read your

Lonnie,
I just read your story. I, too, had/have a spontaneous leak in the t1-t4 region of my spine, back in April. We think it happened because of violent retching. I've had 3 blood patches, and am now feeling pretty much normal - up and about. A recent follow up MRI showed that my brain is back to normal, but there is still csf pooling at the site of the leak - but a distinct leak was not detected. That doesn't necessarily mean there isn't one. I'm paranoid that the torturous headaches will return, and I keep analyzing how I feel! I do have some "shadows" of a headache...
Tell me, since you wrote back in June, do you have another leak? What were your symptoms like? How are you doing now?
-Tori

Cassandra's picture

Spinal Headace

Thank you for telling your story. My daughter 22 years old gave birth to her 2nd child. Went back into the hospital 8 days later for ovary infection and bladder infection. She was admistered a drug for pain that caused her headace to start. She have had a ct scan, MRI, spinal tap. she was hospitalize 3 times in 3 weeks. I requested the MRI myself because i knew they were missing something. The MRI showed the leak and show pressure was low in her head. The did 2 blood patches, as long as she drink mello yello soda (caffein) keep lots of fluid in her she do good but if she slow down on drinking soda the headace try to creep back. How long will this process take, her neurology said it has to run it course. well what is the course are should we get another opinion,

Serendip Visitor's picture

Hi Lonnie. I read in your

Hi Lonnie. I read in your post that you were/are going to a neurologist at Mayo Clinic for your CSF leak. I was wondering which Mayo Clinic you are going to and to which doctor because I am having absolutely no luck getting what I firmly believe to be a CSF leak diagnosed (I'm starting to think misdiagnosis could be due to me being on State Insurance...scary!!) A name of a good neurologist at the Minnesota Mayo clinic would be very helpful. Thank you very much.

Serendip Visitor's picture

Dr. at Mayo, Rochester is Dr.

Dr. at Mayo, Rochester is Dr. Mokri. He is one of the leaders in CSF studies and has quite a bit of material published on the web.

Colleen's picture

CSF Leaks and Spontaneous Intracranial Hypotension

I would also like to hear about the fixed leak and still headaches. Chris, I have the same problem. It took 7 months before a second blood patch worked, but I am still having the ear pressure and ringing and headaches. Two days after the blood patch, I got vertigo real bad with naseau and couldn't keep anything down. Ended up in the ER and spent 2 days in the hospital. Then had an infection. Just went to the ENT doctor yesterday. They say my ears are normal and there is nothing they can do.

Janine Long's picture

Colleen: Just wondering if

Colleen:
Just wondering if you found any info on continued headaches after having a leak fixed. It has been a little over 2 months since my procedure and I still have constant headaches and extremely sensitive hearing with lots of dizziness. My doctors tell me that it is normal and I just have to give it more time. Would appreciate any info you have come across. Thanks

chris's picture

csf

hi they tried blood patch but told me cut in dura was to big my ears ring 24 hours a day they thought it was wax when i went to mayo clinic i think they have no idea how to stop headaches but don't give up this is 3 years and counting take 1 day at a time friends chris are you on facebook site

chris's picture

csf

In january 2007, I hurt my lower back. IN may they repaired herniated disk, but slashed dura. From may to november, I had three surgeries to fix dura. They fixed the tear, but the symptoms NEVER went away. Super bad headaches, ringing in ears. I have been to Mayo Clinic in Minnesota, Northwestern in chicago, and loyola in chicago. Due to my back problems and headaches, I have been declared permanently disabled. I have tried over 50 medications, there is NO painkiller that can stop the headaches, even tho the dura has been repaired. After walking, exercising, and different household tasks, the headaches start! I am now seeing Dr. Singla - one of the best in the US - he has been on many talk shows. There are cases where losing spinal fluid, the symptons never go away. I lost spinal fluid for six straight months. I would like to hear from other people or doctors.

Thanks, Chris

Steve Langlois's picture

CSF Leak

Hi Chris, I too have been on disability since june 2007. I have been getting these disabling headaches since March 2007. My symptoms are: One sided headache (right side), my eye will buldge, weak voice, almost like charlie horse pain in head.To get the pain to stop I need to lay flat and within minutes the pain will subside. I also get headaches that take over the whole top of my head that pulsate with my heart. I only will get these in the morning after waking up, several times a month. I have had several MRI's, Mylogram, cisternigram, xrays, etc.. THey cannot seem to find the leak, however, my pressure was only 30% (last year it was 60%) and I had to get into an odd position for them to even get any fluid out. I had 2 blood patches that were unsuccessful. Nerve blocks that were unsuccessful. I am taking Indomethacin 4x a day and have to keep my activity limited. Lately I have noticed that in warmer weather my activity has to be very limited. I now am getting these spells of passing out....no pain associted with it unil I finally lay down then I will feel pain in the lower right of the base of my scull that travels up to the front of my head above my right eye. I have had my blood sugar checked and all is perfect. Have you experienced any of this? I have been to a total of 9 Doctors and now I am being told that they are not going to do more testing on me for a while because I have had appox 10 spinal taps and the more they do, the higher the risks.

Serendip Visitor's picture

me too!

Oh my gosh, Steve, I thought I was alone with that pulsating of the prolapsed brain behind my ear in unison with the strange pulsation of the heart.
AND I also have problems with my eyes, like needles sticking into the eyeballs from behind, now after two years of that from the front as well.
The doctors think I am crazy as half of them have never even heard of a spontaneous dura defect.
I am constantly in the position of having to "prove" that I really have this. I have a thick full of false diagnoses, and another file full "proving" that I am NOT crazy and really DO have this rare problem.
Yes, lying flat takes the headaches and dizziness away. And in the morning things are really bad. It takes quite awhile to get going.
Unfortunately now I spend around 22 hrs. out of 24 in bed. I am on disability.
It seems that your leak is in the spinal column?
My defect is in the skull so I guess it will not be of much help to talk about which doctors to see.
Try the csf leakage site on Facebook, if you have not already. There are many postings as well and sometimes doctors or clinics are recommended.
Good luck to you and I wish you all the best.

Serendip Visitor's picture

csf leak

Of the 50 medications that they tried, have they ever tried steroids. Start at VERY low dose.... hydrocortisone 2.5mg 2-4x daily, and then if necessary work up to a physiologic dose. (total 20-25mg of hydrocortisone a day). And if you experience lots of highs and lows with hydrocortisone then using a very low dose of a long acting steroid, like 0.25 to 0.375 mg of dexamethasone once daily at night.

The problem with steroids is that doctors usually start them at too high a dose. It would need to be gradual, and you never want to be on more than a physiologic dose for an extended peroid of time. Also, it can make future scans appear more normal than they are.

Katrina Fontes's picture

Facebook Group

For all those who would benefit from information and support from fellow CSF leak sufferers, there is a facebook group entitled 'CSF Leaks (Cerebrospinal Fluid Leak) & Intracranial Hypotension'. It's comforting to know we are not alone!

Kathy's picture

CSF Leak

Cannot find Facebook page. Help. Suffered a CSF November and still having treatment.
Would oove to chat to others.

Katrina Fontes's picture

The facebook group is: CSF

The facebook group is:
CSF LEAKS (Cerebrospinal Fluid Leak) & Intracranial Hypotension

Maureen Sprohge's picture

CSF Leaks

I received the first comment today since I posted maybe two years ago. I re-read many of these and my heart goes out to everyone. One thought I had about my own leak, is that when I delivered my first baby in 1981, I was given a saddle block because I was crowning and the doctor never got out of bed to help me deliver - he thought since it was my first baby, it would be a while. The saddle block was a total disaster as was the whole experience. I sat up in bed (no one told me not to), and WHAM - I was flat on my back for weeks! With a new baby! All my fluid drained out. The scared ob/gyn told me to sue the anesthesiologist not him! Lawsuit! I was even't thinking about that. He said in case there was brain damage... Well, 28 years later, I think I figured out (on my own of course) what was causing my fluid to leak. First of all, the initial problem. I doubt that my body ever did build up enough fluid from that delivery. Secondly, I started getting the problems as I got older and my spine started deteriorating. I also have a hemotoma on my spine. I had a physical trainer who used to have me extend my legs up straight and then she would push them back as hard as she could - and I was 53! EAch time she did that, I noticed the headaches returning. After laying flat and allowing the fluid to build back up, I never allowed anyone and nor do I, stretch my back like that. I figure we can spring a leak just about anywhere from what I have read, but I think physical stress (sinus pressure - excess stretching of the spine - etc.) should be avoided. I will pray for each person and for the poor woman whose husband just posted. I am a firm believer in the healing power of God. I had a 100% brain blockage and three aneurysms which disappeared in front of about 24 neurologists during a Cerebral Angiogram -after given no hope for survivial. I am still here as the result of faith in the one who can heal all things and the united prayers of others. When all else fails - and even before - pray. Let us all pray for one another.

Helen 's picture

CSF Leak 4.5 weeks

My leak results from banging my head over a month ago. The ct scan revealed a small fracture in the sphenoid bone and I had a ct cisternogram last week. I have been confined to resting in bed, in a reclined position, for nearly 5 weeks now and am very frustrated. Csf pours down the back of my throat continuously making me cough and I have stomach pain and diarrhoeaa every morning as a result of it draining into my stomach. If I sit upright in a chair for long periods the pressure becomes too much and I have to lean forward to allow fluid to drain. If I try to get up and do anything at all fluid just pours from my nose. I cannot do anything. Does anyone have any advice or tips in how I could accelerate the healing process of my dura? The doctors I have seen so far have had a very casual approach to this, offering me no advice whatsoever, and after nearly 5 weeks don't seem to regard it as any kind of emergency, but I am depressed, I cannot keep lying in bed all day every day, I have an autistic son to care for etc. I get no useful answers from the hospital (what do they care if I am laid up in bed for the rest of my life?) and am desperate and will do anything it takes to get my life back.
Thank you for taking the time to read x

Serendip Visitor's picture

After reading your comment, I

After reading your comment, I realize how blessed I am. On September 11, 2009. I suffered a Head Trauma. Several days later, I begin to have this clear liquid leak from my noise.
I went back to the emergency room. In fear, they prescribed 875 mg of antibiotics for me to take. From there, it has been a nightmare. Finally, in March 2010 I had to fly to New Jersey. The altitude from the flight put additional pressure on my brain that caused me a severe headache and I ended up in the hospital at Princeton.

Dr. McLaughton at Princeton Bain Spine Care found the CSF Leak immediately. Please give him a call @ 609-921-9001. He is a hidden smart weapon that needs to be revealed.

My prayers will be with you! Tell him that you were recommended by a patient of his in Texas.

Serendip Visitor's picture

Thanks for your

Thanks for your information.
May I ask before I go through the long process of forwarding medical files, etc., the following questions:

1. Where was the dura defect positioned?
2. What procedure was used to repair the defect?
3. Are you now symptom-free, and if so, for how long?

Thanks. Your answers will be greatly appreciated.

Ann

Jim's picture

CSF

Mt wife has been suffering since July 2007 to now, May 24th 2010 with slow csf leaks. One test done that you need done is to see an ENT, eye, nose, throat specialist. He should order an MRI with contrast of your sinus cavities. Unfortunately this test did not reveal anything in my wifes case but you should not be having all the nasel drip and the sinus is the first place the ent will look to. In all the research we have done this is a common problem, clear fluid draining. In fact our ent gave us a cup to capture the fluid draining from the nose to be checked at a lab. The bad thing is you have to have a few cc's and get it to the lab within a day or so for it to be checked. Many people suffer with these CSF leaks, my wifes post surgical on her cervical spine. We have spent 5 weeks at Mayo in Minnesota, have had 6 blood patches now and she is currently in bed after this last one today. No one can seem to find the leak since her simptoms come on so slowly. We even went to Nashville to have a stand up MRI but they just locked her in the machine for 4 hours and would not allow her to postion herself in the poosition that creates the worst headaches. We are not giving up and are tempted to try Cedars in California next.

Serendip Visitor's picture

CFS LEAKS

After reading your comment, I realize how blessed I am. On September 11, 2009. I suffered a Head Trauma. Several days later, I begin to have this clear liquid leak from my noise.

I went back to the emergency room. In fear, they prescribed 875 mg of antibiotics for me to take. From there, it has been a nightmare. Finally in March 2010 I had to fly to New Jersey. The altitude from the flight put additional pressure on my brain that caused me a severe headache and I ended up in the hospital at Princeton.

Dr. McLaughton at Princeton Bain Spine Care found the CSF Leak immediately. Please give him a call @ 609-921-9001. He is a hidden smart weapon that needs to be revealed.

My prayers will be with you! Tell him that you were recommended by a patient of his in Texas.

Ann's picture

Testing of CSF

I would suggest doing what I did as after the second failed surgery, my surgeon was reluctant to do another fluid sample test. You go directly to the lab, explain the situation, hopefully to an understanding and intelligent doctor, produce your sample on the spot and have it examined immediately. The time frame is about 6 hours. If your sample has not been tested within that time, at least that is how it is here in Germany, you will end up with a false negative.

Ann's picture

Testing of CSF

Am commenting on my own entry....just wanted to add that after my second failed operation it was very strange indeed. The surgeon placed another ear tube and within a few days after the surgery I was losing CSF through that tube, but intensively at around the same time each day which happened to be between 4 and 5 p.m. The surgeon did not quite believe me and when I was asked in earlier in the day to "produce" the fluid, guess what....I could not because for some reason unknown to me it would flow like crazy in the later afternoon. That is why I ended up going directly to the lab at the hospital myself when I knew I would be able to produce enough of the CSF for testing and not when it was convenient for the doctor.
After the previous 10 years of falses diagnoses I have one big wish for effective change: I wish the medical profession would learn in general to take the patient more seriously and finally accept the fact that the patient, although not a doctor, does know best when something is really wrong.
My second big wish would be for members of the medical profession to pay attention in the History of Medicine class I am sure they all have because we do not yet know it all!!!!
As one might be able to feel reading this, I am very angry.
I also suffer from fibromyalgia and it was the same run around until I was finally taken seriously.
Back to the CSF.....it seems the Mayo clinic is a good place to start. Also, there are many more entries on the spinal leaks as opposed to the spontaneous leaks at the base of the skull.
Is there anyone out there who has something positive to report on getting treated for a now 2 centimer-in-size defect of the dura and bone at the base of the skull???
Has anyone reading this been successfully treated for a defect of that size?
Does anyone have experience with titanium implants to replace bone?
Does anyone have experience with grafts of one's own tissue?
Has anyone been successfully treated with the underlay technique only?
What I have read indicates that the underlay AND overlay technique are both required for having any chance of success.

Anonymous's picture

CSF leaks

Hi Jim,
All I can add is don't give up. I was finally diagnosed last June with a tear in the dura at T6. The tear was in the front of the spinal cord and the cord had herniated. I have since had an operation that was statistically risky but the leak is fixed. I have a sore back but that is nothing compared to the constant headaches etc. The Doctor who chased the leak specialises in neuro radiology exams, it was a myelogram but done in a different machine and they didn't move me. The scans were at 1/sec i think. Good luck.

Craig's picture

CSF Leak

Hello Sir...I went through this in 1996..I may be able to help you with your wife's problem. Write me at, craigvm at yahoo
Craig

Anonymous's picture

undetectable csf leak

Hello, my mother has had low csf pressure and a leak for about 3 years now. She has gone through just about every test in the book and they cannt figure out where her leak is. She has had 5 blood patches. Two of the 5 she got temporary relief but the symptoms soon came back within 1-2 weeks. She has had numerous MRI's and milograms (sp) as well. All of these have been performed at the Mayo Clinc in Scottsdale AZ. Has anyone else had a leak that couldnt be found??? I will add, that they done two of the glue injections into two 'suspect' areas and she got no relief from them either.

Ann's picture

spontaneous dura and basilary defect behind left ear + spreading

Have suffered for over 10 years with symptoms. Finally after years of being told I am crazy and actually having been urged, then later forced, to see a psychiatrist, finally various ENT specialists over the years decided to insert an ear tube. In total I had 3 ear tubes and not once did any specialist look into exactly what that clear watery fluid was which was flowing continuously out of my ear.
To make a long story short, had two failed mastoidectomies/minicraniotomies done by a reknowned ear specialist. The hospital had no idea, even after CT scans and MRI's what was wrong. But as the surgeon admitted after the surgery, he had never seen anything like it before and the patch job he attempted with artificial dura and fibrin glue did not hold so I was back in for emergency surgery four weeks later. This time the head of the ENT department was in the operating room too. Still no luck, that patch job did not hold either.

Was told I would make myself crazy if I even attempted to look for a specialist who would know how to repair the dura defect and the missing bone at the base of my skull.

I am really suffering, no longer able to work, am now living at poverty level (which, if you are not indepently wealthy,is where you end up if you cannot work for years) and still struggling to get the operation I need.

My eyesight is suffering, I see grey spots, and behind the eyeballs it feels like needles are being pricked into them. My eyes are so dry, it feels like I have suction cups on them. I think this has to do with the pressure changes in the brain.

I am asking for help.

Unfortunately I live in Germany.

Does anyone know to whom I can turn in the medical profession who will try to help me?
My life is completely ruined, on really bad days I cannot even get out of bed. I cannot do my own housework, cannot bend down, even walking short distances causes the csf to flow like crazy (now through the nose because last ear tube was not replaced). I am becoming less and less able to take care of myself in even the simplest of ways. Things like cooking are too much because once the pressure in the brain - or whatever the heck goes on in there - becomes too high, or the brain is prolapsing even worse, this time due to two failed surgeries and the subsequent larger holes, the dizziness, nausea, light-headedness, vomiting and changes in vision are immobilizing. I can only lie in bed for days on end waiting for "it" to pass.

Very few friends believe I truly have these symptoms. Because I do not look sick, to them I am exaggerating. So not only have I been ripped out of the work force due to this illness, my marriage is over and my formerly rich social life is now non-existent.

PLEASE, IF THERE IS ANYONE OUT THERE WHO CAN RECOMMEND A SURGEON TO ME - NO MATTER WHERE - PLEASE LET ME KNOW. I CANNOT LIVE LIKE THIS MUCH LONGER.

Over here in Germany with socialized medicine you are really out there on your own if you do not have connections and/or money. Doctors here do not network so if you have a rarely diagnosed condition, my experience has been they want nothing to do with it. My insurance company refers me to my GP for assistance, who then refers me back to the hospital where I had the two failed operations, which then refers me back to my GP, so I contact the insurance company, who then refers me back to the GP....all keep referring me back to the place that referred me to whomever I am speaking to at the moment.
I am going around in circles, only treading water, it is utterly unbearable.

Now my psychological health is truly suffering. I often feel I will go completely crazy because I know there is help out there, I just don't know what I need to do to get it.

If I had the strength, I would go public and expose all the malpractice I have experienced, but I cannot.

This is my first attempt through the Internet to try to find help.

Thanks to anyone who reads this.

Rob  Roberts's picture

csf leak

Try Wouter Schivink MD Cedar Sinai Hosp LA Calif

patty's picture

CSF Leaks

What a great website! Here's my story, and nobody out there is alone - I am so glad I am not! Three years ago, I was diagnosed with MS. I have had such horrible headaches since the diagnosis. I had an irregular gait at times, and was a little clumsy. Around Thanksgiving of last year, I began with a lot of imbalance. By January, I had such low blood pressure that the doctor was amazed I was still walking around. In February, I was told I was having an exacerbation of the MS. However, I have no lesions on my brain or spine. I was given steroids. I woke up with a shooting pain in my head one night, and woke with blood all over my pillow from my nose. After that, I became ataxic, had double vision, the fatigue was worsening, and so was my blood pressure. The headache was so bad that I could not stand up, and if I was sitting up, I had to rest my head against the wall. It felt like someone was standing on my head. Finally, I was admitted to the hospital for a million dollar workup. After tilt tests, lumbar punctures, EKGs, and other neurological exams, I was told I might have SIH. I was put on Midodrine, Fioricet, and Zofran for the headache, low blood pressure, and nausea. I could not even look at the light for two weeks. My blood pressure has gotten a little better, but I still suffer from headaches that are so severe that two Fioricet do not take them away. The only thing that does is lying down, and I am an ex-runner, and used to exercise daily, so this is killing me. I am still waiting for the results of the cisternogram that I had done last week. Whenever I bent over, I have horrible pain in my head, and I began dripping clear fluid from my nose like a faucet. The neurosurgeon thinks it is SIH, but if the results are negative, what else could this be? By the way, now the neurologists on my case are thinking that, after three years of treatment for MS, I might not even have it, it could be something else. I wonder what ever happened to doctors who knew stuff?

ann's picture

CFS leak (Again)

I'm just researching. I first had a splitting headache in 1997 when i had a lumber puncture, has a constant headache until 2005, spent most the time between 1997 - 2005 laying down and was told i had a psychatric illness and it was all in my head (it was but not in the way they meant)

I had a blood patch in 2005 which cured the headache but i was left paralysed from my waist down, there is a risk of your body reacting to blood where it shouldnt be and causing a lot of nerve damage. So i have been in a wheelchair since 2005

In 2007 my spine leaked again was fixed with a blood patch which had no effect and then i was give 500mg of IV caffine which did the job until 2008 when it happened again and i was given more caffine and now the last for days (2010) it decided to leak again. So i have had more caffine but its not an answer its just a tempory fix.

I got told that SIH only normally occurs once, I have now had 4 and yet the doctor wont talk to me about managing them. This time i went to my the ER and after 4 hours was sent home as the said they couldnt treat me as only a neurologist could prescribe the caffine and the neurologist refused to walk down two sets of stairs to see me. (how crap)
Then i went back to the hospital the next day and was treated in the medical assessment unit, it took them 3 days to get caffine into me which is so stupid as its a 4 hour infusion into my arm so I dont understand why they even need to admit me.

Ann's picture

Blood Patch

Hi ann,

Would you please tell me more about the blood patch?
What type of CSF leak was diagnosed?
What is the blood patch, how is it done?
Am wondering if that in any way applies to my situation (spontaneous leakage which presented itself as otorrhoe each time after placement of several ear tubes).
My goodness can things go wrong!
I seriously do not think I will give it a third try after hearing these hair-raising stories.
My experience has been, the surgical procedures do not have much of a prospect for success, and the problem gets only worse after surgical failures!
Sincerely,
Ann

S Russell's picture

CSF LEAKS

It has been very interesting to read the different people who have had CSF leaks. My husband acquired one in June of 2009. He started having unbearable headaches and noticed if he would lie down they would go away. he started going to the dr. and then the hospital with tests and blood patches. Nothing seemed to work. At first our local hospital treated it very casually. I kept insisting that he was much more sick than they were acting. I researched daily to try and find someone to help him. I finally ran across Dr. Wouter Schievink's name online. I contacted him but before I could get my husband's records to him he had to have two emergency surgeries and passed away on August 6,2009. The worse day of my life. Recently a young lady from my hometown had a csf leak and thank God the Dr.'s knew that they had no clue as what to do and told them they needed to take he somewhere else. Her parents took her to LA to Cedars Sinai where she had surgery and is doing good. Please if this reaches anyone who has this problem and your local Dr. doesn't seem to know what to do for you, then please seek help elsewhere. I cannot find in the history of CSF leaks of it being fatal to anyone other than my husband. If anyone knows of this happening please email me. There was one Dr. in my hometown that did the two emergency surgeries on my husband that I have confidence in, however I feel like he saw my husband when it was already to late. Drs. should not take terrible headaches so lightly. I feel like due to someone not caring enough on the beginning of my husband's illness that I do not have him by my side today. It has been a terrible loss to a lot of family and friends. He was only 45 yrs. old

Ann's picture

Fatality + CSF Leakage

Dear S Russell,

It is heartbreaking to read your entry.

The reason for my two "emergeny" operations, which, unfortunately both failed and only made the problem worse, was because the doctors told me it would only be a matter of time before I contracted meningitis and would die. I am now scheduled for neurosurgery on the 21st of this month and am seriously considering backing out of it as at present I can see, hear, walk and talk. All the risks involved with my upcoming surgery, as explained to me by the neurosurgeon, do not in my mind seem to balance the scale when it comes to any possible gain which may, but I fear most probably will not, come of this third surgery.

From a medical perspective the reason for operating (middle fossa craniotomy) is to close the holes in both my dura and base of the skull in order to rule out the 35% chance I have (due to the position of the defect which expressed itself as otorrhoe after placement of several ear tubes) statistically of dying of meningitis. The neurosurgeon would transplant fascia lata from my upper thigh (of course giving me potential for yet another health problem later on!).

My reason for wanting surgery, however, is to be rid of the headaches, nausea, dizziness and problems focusing due to a prolapsed brain which prevent me from leading an active, normal life. To have those holes successfully closed will not help me much if I come out of the operation blind, deaf, paralyzed in any way, or if the symptoms such as headache, etc. become worse.

The neurosurgeon I consulted agreed that a doctor
s definition of successful treatment is different from that of the patient's.

If you google spontaneous csf leakage you will come up with a couple of reports on this in which the fatality of non-treatment is mentioned.

However, after reading all the entries as to what can go wrong, even if the operation from the surgeon's point of view is a success, I think I am going to take my chances and live my life day by day, enjoying the fact that I have all my senses.

I bet it is no fun suffering from meningitis either, not to mention dying from it, but heck, two failed surgeries are not real motivation for going in for a third.

I wish doctors here would network. I would feel so much better about it all if, as I have read in the few medical reports on spontaneous csf leakage (otorrhoe), the procedure would be done by an interdisciplinary team which has successfully treated at least one person in the past.

There is a difference if your csf leakage is due to a spontaneous defect, left undetected for so long and quite large and at the base of the skull, as opposed to someone suffering from such a leak positioned elsewhere in the skull after, for example, removal of a brain tumor. The type of defect will be different and perhaps situated at a spot easier to repair.

That's all for now.

I am so very sorry about your loss.

Sincerely,

Ann

Anonymous's picture

My CSF started as a headache

My CSF started as a headache that was worse when sitting and standing. Came onvery suddenly.Sent to hospital for CT scan and MRI. Looking for bleed on brain. Nothing. Was lucky to have been referred to a neuroligist who diagnosed me immediately. Spent 2 weeks in hospital to then 2 wks at home to see if it healed itself. It didn't and I was MRI'd again where the brain stem was found to be slumping against the clivus and the condition worsening. A blood Patch was done which cured my leak but the pain was excruciating in my back as a result. 7 weeks on and I still have a burning pain in the base of my spine and a dragging type pain in my head.I tire easily and lack concentration.
Thankfully I had some brilliant care and can lead a relatively normal life now.

Paige's picture

Spinal tap

My husban just got a spinal tap done about a week and a half ago and now hes having terrible back pain and spazems and hes also throwing up blood. I was just wondering if you think this could have been caused from the fact that he might have a leakage from when they did the tap. Nobody can figure out whats going on, if you can think of anything please let me know. I can stand to see him like this. Its hard for him to even get to the bathroom with out falling down and screaming in pain>

Anonymous's picture

CSF Leak since giving birth

I've had a headache everyday for 13 months now. Since the morning I woke up from delivering my son the night before. I was given an epidural for the pain, and the doctor had to insert the needle 8+ times because he couldn't find the 'right' space. I was flat on my back for 8 days after, not able to lift my head without feeling like my brain would explode, and not being able to hold my new baby. I've had 2 epidural blood patches. The first one did alot for me. Made me able to stand up and get on with my life. Now I have a headache that is 'mild' and annoying. Relieved only when I lay down and gets worse when I am active. I have had a mri,ct scan, myleogram and seen a neurologist, neurosurgeon, and will be seeing a pain clinic soon. All my tests are showing normal (except for 'wear and tear on my back) and they cant find the leak. I also see the chiropractor every week which is helping me with my back because it is sooo weak from all the punctures. Please help, I want to be back to normal so I can get on with my life and take care of my baby on my own.

Serendip Visitor frances tittonis's picture

same thing has happened to my

same thing has happened to my daughter, 5 days ago, she is so afraid, she has had 1 blood patch, when she lays down shes fine but when she stands she has headache and lots of pressure on the brain, we dont know what to do, can anyone help

Anonymous's picture

Thoracic region

Hello, my mother has a CSF leak and the headaches are completely debilitating. Also, they keep her quite unpleasant so none of her friends want to have anything to do with her anymore. So now she has nothing but miserable free time, she can't do anything with it and no one to talk to.

My mother can't have the blood patch injected at the site of the leak because it is in the Thoracic region and they say it is too risky. They tried 2 blood patches in a different area (I dont remember where) they hoped it would move down and clot in the leak but it did not. She is not willing to try anything where a side effect is paralysis. Is there anything she can try? She is only 50 and the last 3 years of her life have been hell because of this. She has given up.

Jim's picture

They do not want to try a

They do not want to try a Thoracic Patch? My she needs a new doc. My wife just had a cervical one yesterday in hopes of plugging her 'leak'. She has had 6, 2 lumbar and 4 cervical. I would think thoracic would be easier than cervical, but who knows. Now our doc thinks my wifes headaches are caused more by position verses leak as she does fairly well until she raises her head to look straqight ahead, like at computer monitor, and then her pressure builds to where she is crying. She has suffered for almost 3 years now so don't give up.
Jim

Anonymous's picture

Thoracic CSF leak

I can whole heartedly relate to this. My 22 yr. old daughter has had on-going CSF leaks in the thoacic region. Our only real help came from DR. Wouter Schievenck. Our daughter has had multiple blood patches, some were temporarily effective, some not so much. She has also had the fibrin glue patches, same result. At Cedars the fibrin are done under general anesthesia with the guidance of active CAT scan. She finally did have surgery 7 weeks ago and has had a definite improvement.
I know the helplessness and frustration you are going thru, and your mother's as well. DO NOT GIVE UP!!! Try anything you can to get in touch w/ Dr. Schievenck, he really is THE expert.

Dr. Wouter Schievenck
Department of Neurology
8631 W Third Street Suite #800
Los Angeles, CA 90048 USA
Phone 310-423-7900
Fax 310-423-0777
website: www.cedars-sinai.edu/nsi

He is very busy,as are his assistants and staff. If you leave a message they will get back to you. Be patient yet persistant.
Develop a timeline: when did symptoms first occur? What steps were taken? What Dr.s were seen? Have dates, Dr's names, addresses, phone #s, their diagnoses and any medications prescribed and the results. Note any other conditions she has that are separate from the leaks, any meds she takes regularly, and her basic background medical history. Her primary care physician's office should be able to give you this info.
Write it all up on your computer, get CD-ROMs or copies of MRIs, CATs, etc. Get more than one copy and hang on to one set!! the more basic info you have in clear, concise, format the easier it will be to plow through the initial steps.

I will be praying for you and your mother. You are not alone, and I wish you all the best. After 2 years of watching my daughter suffer, Knowing what was wrong (she had a previous episode when she was 18 that healed spontaneously) and still not being able to help her effectively nearly drove her, her dad and me crazy. But even if this surgery has not been completely successful, we will not give up, and you and your mom better not either!

Do whatever you or other family members can do to distract her...during the first episode (lasting 8 months) I read over 40 books to my daughter. Told her everything I could remember about my childhood, her relatives, anything and everything to make the day go by.

May the Lord bless you and keep you, may he make his face to shine upon you and be gracious to you, may he lift up his countenance upon you and grant you his peace, now and always. Amen.

Anonymous's picture

I suppose I was fortunate to

I suppose I was fortunate to have found an Interventional Radiologist in Pittsburgh, PA who was able to locate and perform EBP on 5 leaks in the thoracic spine. I understand that not all doctors know how or are willing to treat this condition. I had 3 patches done over a 5 week period. The first was a high volume blood patch or EBP into the lumbar spine (73 cc), then another of the same with only 18 cc, the third time was the selective patches or targeted patches found in the thoracic spine. It seems like the neurosurgeons are familiar with this condition, but I have not seen a neurologist or rheumatologist who treats patients with this condition. Mine appears to be congenital (from birth) and is due to a weak dura and meningeal diverticuli. It has been 4 months since the last EBP. I have had symptoms that indicate that the leaks are still present, but I am functional. I am having another MRI in 3 weeks and assume that I will need to have another myelogram/CT and then either selective or blind EBP. Hopefully the leaks will stop and I will not experience this again.

Post new comment

The content of this field is kept private and will not be shown publicly.
randomness