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CSF Leaks and Spontaneous Intracranial Hypotension

Submitted by SerendipUpdate on Thu, 01/03/2008 - 1:26pm

Biology 202

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

F Michaels

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

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

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

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

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

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

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

References

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

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

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

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

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

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

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

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

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

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

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

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

Pam Bryan

Additional comments made prior to 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Comments

CSF Leak

Submitted by Michael Kane (guest) on Thu, 07/21/2011 - 12:07pm.

I first started symptoms 6 weeks ago and went to an orthopedic because i thought i had a herniated disk. Did xray and MRI with negative results. He sent me to Neurologist and during my discussion of the symptoms with him he halfway mentioned that he thought it might be a CSF leak. With that in hand we decided to try the blood patch approach. i had a cervical and Lumbar blood patch, either of which worked. The neurologist then sent me for another MRI with contrast to look for low pressure and this came back negative as well. I am in the fortunate position of having a dear friend who is a Doctor and in chatting with him he said i needed a CT Myelogram.

When i went in for this test the radiologist said as he was doing the puncture that he had never seen anyone in 25 yeears with such low spinal pressure. He actually had to try 4 times before he could pierce the dura to inject the dye. Needless to say after 90 minutes i had the CT and he came back in and said that i had a huge leak and all of the tracer had leaked out! He also said they could not locate the leak either but could see it from the base of my skull to the small of my back.

Anyway, i guess i just want to say that if you think you have a CSF leak the CT Myleogram is the one and only test to look for leaks.

blood patch

Submitted by Serendip Visitor (guest) on Thu, 07/21/2011 - 9:27pm.

Can someone please inform me what kind of leaks those of you who mention having had blood patches are talking about???

My csf leakage is due to a hole in the dura, the membrane which surrounds the brain. An erosion process is going on, no one knows why, and it has extended into the bone at the base of the skull (right near the hole in the dura). Through this hole I have a piece of my brain hanging through.

Two failed surgeries by incompetent doctors....no one over here has experience in treating this illness.

I leak csf through my nose, or through the ear when I had had ear tubes placed (because the doctors did not know what they were doing to put it bluntly in plain English).

On this site so many people are writing about having had blood patches and this CT Myleogram....

I really would like to know what types of leakage/defects this test is used for....are they spinal leaks?? You know, losing csf through some hole in the spinal column??

This gets to be very confusing because although both groups of patients are suffering, we are in two completely separate categories as far as I am informed.

If this CT Myleogram and the blood patches are something I could be doing for further treatment, no doctor here in Germany has ever mentioned that. They simply shrug their shoulders and say I require brain surgery again, a vain attempt on their part to have a go at it again.

I refuse to have further surgeries unless the team of specialists claims to have successfully treated several cases similar to mine in the past. To date, 3 yrs. after those two failed surgeries I have yet to find such a specialist or team of specialists here in Europe!

So please, if anyone can tell me....what are you all referring to with the blood patches and above-mentioned CT exam??

Am I correct in assuming we are talking about two completely different problems??

csf leaks

Submitted by tina (guest) on Wed, 09/04/2013 - 3:44pm.

Hi There, I know this is an old message, i just stumbled across but I saw under SIH a doctor that did a report on a young girl who had unnecssary surgery and he found this condition that cured her. It was in italy. i can try and get you more info, my email is

Csf leak too

Submitted by Venusny (guest) on Mon, 08/08/2011 - 7:40pm.

I have to share my story. I have been loosing my hearing for 5 years. All the docs told me it was allergies. I went to the net to see about a hearing aide. They didn't see fluid in my ears but the tests showed it. The dr did a myringotomy and the fluid ran out like a faucet. I ended up a week later with an emergency surgery to put in a vp shunt. Then a few months later a right side middle crania repair. This to repair the temporal bone defect and the dura. A few weeks later the left side was repaired. It's been 7 weeks since that surgery and now the low pressure headaches are back and dripping from my nose. Not sure were this is heading now but it's not looking like it's over. My only saving grace is that I have the best dr ever.

Csf contiued

Submitted by Venusny (guest) on Fri, 10/21/2011 - 10:16am.

Well as it turned out, I sprung another leak. Headaches put me in bed for several weeks and finally an MRI showed another leak on my left side. My mastoid was full of fluid and an net surgeron was called in to assist the neurosurgeon and do a mastoidectomy along with the dura repair. After the surgery I still had low presure headaches. The leaking seems to be continuing from the left side as well. My vp shunt has been disconnected for now to at least make it a little more tolerable and slow down the fluid leaking. Go back to the dr on Monday and the headaches and blurry vision continues. I have yet to read about someone who has been completely cured. I saw a show on a woman with this kind of leak who after 17 surgeries still was not cured.

I have the same history

Submitted by Serendip Visitor (guest) on Tue, 07/19/2011 - 9:18am.

Hi Tricia,

My spontaneous dura defect, brain prolapse and csf leakage was not detected until 8 yrs. after symptoms first appeared.
My symptoms were like yours, whereby I want to emphasize your symptoms could very well be caused by something else.

I have the pain, the blockage "in the ear," the build-up of fluid. Went from ENT to ENT and was always told your ears look fine, was given all kinds of meds to dry up sinuses, was told the fluid build-up was caused by a problem in the sinuses, a cold, all kinds of diffuse reasons.

Eight yrs. later was in for exploratory surgery. Yet another ENT with yet another false diagnosis, cholesteatoma (a type of tumor), transferred me to the hospital for an operation. The doctors could not find any real signs indicating a tumor as such. However, they gave up and scheduled me for surgery.

Unfortunately the surgeon--told me in his own words after the operation--had never in his entire career seen anything like it. I have a hole in the dura, and in the bone at the base of the skull (looking at it from the inside...the bone there has eroded away considerably).

Needless to say, surgery did not work. Four weeks later was in for emergency surgery to try to close the defect.

Again, unfortunately, the entry to the skull was made larger. Considerable amounts of mastoid bone were pulverized away and not replaced. And this repair job did not hold either.

Ever since then I have been looking for access to a team of specialists with experience in repairing defects of this nature. Again, for the third time, unfortunately I live in Germany and there are no experts here. There are several in the U.S.

But I do not have insurance coverage.

That is my story.

I would suggest you keep looking because if your symptoms do not go away, and you do not have a history of sinus problems, then something else is up.

I have learned to trust what my body is telling me. All throughout those 8 yrs. until diagnosis I knew it was not as the doctors kept telling me. I never got any real answers that made any sense to me.

An MRI of the skull will help. And a CT-scan will show the bony structure. But a specialist will have to ask for those tests.

Keep us posted with your experience. It is important to everyone affected.

Also, try contacting the CSF leakage site on Facebook. There you will find many entries with names of specialists.

All affected have had the same long track record of running from doctor to doctor, all to no avail, until they got lucky.

Or it is the nature of such forums that only those with problems share their story.

Take care and above all, good luck.

Marie

spontaneous csf leak

Submitted by Serendip Visitor (guest) on Fri, 07/15/2011 - 5:32am.

Experienced excruciating neck & head pain Oct 2010 , muffled hearing, visual changes undiagnosed Csf leak, diagnosed initially as migraine and neck spasms, Doctors advice after emergency visit at hospital pain relief med, physio. Deteriorated severely next three weeks, when i requested for neck & head MRI. MRI showed fluid leak had two blood patches within three weeks improved dramatically,
last three weeks have had some symptoms return pressure back of head right side, tender scalp, occasional drainage from right nostril
bending forward, could I still be suffering from intermittent CSF leak, do I need another blood patch although postitonal headache no where near as excruciating will it get worse.

head heavyness

Submitted by mahendran (guest) on Wed, 06/15/2011 - 7:23pm.

when i lie down if i turn my head right side i am getting heavyness in my head why?

Fluid Leak

Submitted by Serendip Visitor (guest) on Sun, 06/12/2011 - 9:06am.

I had surgery for Chiari Malformation. Surgery went well and I was starting to feel better, but about 5 weeks afterwards I developed chemical menigitis and they did a scan to find I had a fluid leak. I'm only 7 weeks post surgery now and they have me on steroids, muscle relaxers and pain killers and they want to see if my body will absorb the fluid before trying to drain it or go back in surgically to repair it. They said it might be a pocket of fluid instead of an actual leak. I have had severe pain in my left hip that went down my left leg but didn't last for more than a day and last night I couldn't sleep due to pain in BOTH of my knees which is still hurting now. I wanted to know if the leak would have anything to do with the pain? I have been craving sweets and normally I don't eat them but every so often. I have been eating more bananas and I don't even care for them. I can't walk around long, go to the movies (due to the noise), or even get very comfortable when I go to bed b/c of my neck. My biggest concern is the pain I'm getting in my legs. I just want to know if one has anything to do with the other. I'm still waiting on my appt with my dr next week to see what we are going to do next about the fluid. My dr has been wonderful about sending me for scans and to do what is the least advasive procedure, especially since I'm only 7 weeks out from the surgery. I just hate the cravings and emotional rollercoaster I have been on. I want to be normal again.

Confusing symptoms

Submitted by Debi (guest) on Sat, 04/30/2011 - 10:00am.

Hello! I was diagnosed with a spontaneous CSF leak prior to my second surgery for Chiari Malformation in 2008. The neurosurgeon was hopeful that the surgery for ACM would cause the CSF leak to resolve itself. His thinking was that because there was significant blockage of CSF at the base of my skull, it caused pressure to build up and create a CSF leak. He hoped that making room for the CSF to flow more freely would allow the pressure to ease up and the leak would heal on its own. A follow-up MRI 6 months after surgery showed that the collection of CSF in the spinal area had acutally increased, indicating the leak is still there. Due to "life" circumstances (moved acrossed the country, no medical insurance for over a year, etc.), I have never followed up with the Neurosurgeon on these results to see what I should do next. I have just suffered for the past several years with confusing headaches.

Sometimes I get what I call "normal" headaches...my head just plain hurts. Then there are the "my head is about to explode" headache. This type causes severe pressure that affects my vision and hearing, stabbing pain behind the eyes, pain when I turn my head, extreme increase in pressure and pain when I stand up from a seated position, dizziness, nausea and sometimes vomitting. Sometimes this headache comes out of nowhere. Most of the time, it comes after excercising or other strenuous activities, repeated coughing/sneezing/bending over, or singing for a long period of time (I am a church music director). The only thing I can do to relieve this type is to sit on the couch lengthwise, with my head gently resting to the side on the back of the couch...and hope to eventually fall asleep and let it wear off. Laying down makes the pain/pressure worse, as does standing up. Pain meds don't really help with the pressure, but I usually drink something caffeinated and take a good amount of Exedrin Migraine because it has caffiene and I read that caffiene helps with CSF related headaches. These symptoms sound like typical intracranial hypotension headaches to me.

What confuses me is that sometimes I get a headache that seems to fit with intracranial HYPERtension...too much CSF build up. For instance today...went to bed with a headache that did NOT get worse upon standing, but DID feel worse while laying down. I forced myself to keep laying there and eventually fell asleep, only to wake up after three hours with the pain being much worse. I got up to get a drink and by the time I got to the kitchen, the pain was dramatically BETTER. Tried laying back down and could not take the pain. There is some pressure feeling and the same "swooshing" sound in my ears...and incredible pain behind my eyes.

The confusing part is this...how can I have sypmtoms for both intrcranial hyper- AND hypotension headaches? I know there is a spinal fluid leak there...so that would make the HYPO type headache more understandable. Or does intracranial HYPOtension cause some of the same symptoms as HYPERtension?

I suppose I need to find a neurologist because these symptoms are getting out of hand. I am trying to lose weight and exercising definitely increases the headaches. This is very frustrating because I really NEED to get this weight off...so I just keep exercising, knowing I will have a horrible evening of head pain/pressure.

Anyhow - I didn't intend for this to be so long. I am just hoping someone can shed some light on this for me...let me know if I'm missing something or share your experience. Thank you..have a blessed day!!

intracranial HYPERtension...too much CSF

Submitted by pen (guest) on Sat, 02/04/2012 - 9:29am.

Debi,

Did you ever get the HPERTENSION too much CSF resolved. I too am dealing with the same thing. Large Dura leak at L4, had surgery and now I have the headache in the morning and while laying down. Also have the upright headache. I can define the two headaches now and i have tried to explain this to my Neurologist who claims he has never seen a patient in 26 yrs whith too much CSF. Tried taking the Acetazolamide to reduce csf and feel worse. Headache better, but nausea, dizziness, fatigue, weakness, burning in feet are as bad as the headache. Hoping you are doing better.

Pen

PLEASE HELP...regarding intracranial pressure!!!

Submitted by c.j. (guest) on Sat, 07/23/2011 - 10:13pm.

Have you found anything out regarding your headaches of experiencing both hyper and hypo tension headache symptoms? I have experienced this too. And I have had the decompression surgery for Chiari Malformation in 2008 at The university of Missouri hospital. I am heading back to Duke university in N.C. soon to have further testing to locate csf leaks within my head. Your the first person that I have come across who like me, has experienced symptoms from both types of headache. Im just really curious if you have found anything out regarding your headaches.

THANKS SO MUCH. My email address is Sincerely, C.J.

Nothing left, I csn think of.

Submitted by Jesus Kid (guest) on Wed, 04/27/2011 - 2:55pm.

Hello. I have been suffering from on going head pressure for a total of nine months and it is 24/7. I never get a break! My doctor told me I have eaustacian tube dysfunction as well for the past nine months. My ears always feeled pressured, and they tend to shake from the inside quite often. Its weird, let alone annoying. If I plug my nose and try and breath out my ears, while closing my mouth, my whole ear closes, and sounds like air is shooting out. I also hear quite a bit of ringing in my ears as well, and feel fluid draining. but that comes and goes. I dont really get headaches, just a lot of pressure and tinging ofn the head. Its sooooo strange :/
I've been to a neurologist, he did an mri of my head and an EEG and said they were both negative.
I have sinus problems quite often, but the sinus issues have started happened ever since I was diagnosed with IBS.

one day I had a really bad sinus headache and I took medicine for it but the pressure never went away. Im so agitated. The pressure is getting worse and worse onver time.. First it started on the left side of my head then just spread allover the front of my head. My memory is much. I ccant remeber what someone said past two seconds, tinging in arms legs fac. Radiating pain from base of the skull to the back of the head.............
could it be a csf leak?

Result??

Submitted by Lorrie (guest) on Sun, 04/07/2013 - 9:57am.

Did you ever find out answers? I have these symptoms after blood patch!

Nine year old daughter

Submitted by Kristin G. (guest) on Mon, 04/25/2011 - 8:46pm.

My nine year old daughter had a 24 hour a day headache for four months, with intermittent blurry vision, dizziness, nausea, stomach pains, double vision, sore neck and so on. Just weeks ago, we found out that she could stop her headache by bending her head backwards, and trigger the headache by leaning forward. We are on our second neuro. We have run numerous MRI's. The doctor told me I was crazy to think she could have a csf leak. How is this crazy? They are telling me she has migraines; but at the same time they tell me you cannot stop a migraine like that. Any advice on how to convince a doctor to do a spinal tap?

my 12 yr old daughter also....

Submitted by al (guest) on Thu, 05/26/2011 - 2:03am.

has constant head pain for almost a year now. in the beginning she had neck pain as well as head pain she rated 8 out of 10. other symptoms would be seeing stars and sometimes tingling in the fingers. We used to see a PT and one thing he noticed is when he put pressure on her arms(ie. pulling downward) it would increase her head pain. Running would make it worse so she stopped all physical activity. we've seen neurologist, orthopeadists and did mri's, ct scans and they can't find anything wrong. they've ruled out migraines and I'd like to ask them if sih is a possibility.
Wanted to know if your daughter had any treatments/improvements and what dr. are you seeing. we're out in hawaii with very limited resources and traveling to see other dr's is a possibility. we got to get some answers. thank you.

Hello Kristin, the symptoms

Submitted by Penny (guest) on Tue, 04/26/2011 - 12:15pm.

Hello Kristin, the symptoms are very similar to CSF hypotension which is what my husband has had for 2 years. He was hospitalized for 2 weeks with all the symptoms you have listed for your daughter. They thought he had spinal meningitis, etc. I am not sure if age has anything to do with this condition. It could strike any age at any time. My husband did not have any trauma to the head or neck before symptoms. There is a doctor in Los Angeles at Cedars-Sinai Medical Center who specializes in this condition and my husband has been operated on by him twice now. His name is Dr. Wouter Schievink, MD 310-423-0814. You might be able to ask their advice and they might know someone in your area you can go to first. My prayers go out to you and your daughter as I would never want to see anyone let alone a child go through this.....Penny

CSF Leak? or not?

Submitted by Rene Miller (guest) on Tue, 04/26/2011 - 10:53am.

Try to limit the amount of spinal taps sometimes they create a new problem. For the CSF Leak
guru's go to either Dr. Mokri at the Mayo Clinic in Rochester Minn or Dr Schievink at Cedars
Sinai in Calif. Don't rule out a Chiari Malformation which can happen at birth and show up later.
Does she have a large head? The Chiari experts are at the Chiari Institute in Hempstead, NY. Hope you have a PPO so you can get help out of your own area. If not, then mention the area (St you live near and others may be able to give you a medical recommendation. God Bless you and your daughter and I wish you renewed strength to endure the days ahead till she is well again! Stay positive, THERE IS A SOLUTION TO EVERY PROBLEM IN THE WORLD!

my wifes epederal shot the nurse gave, punchured the spinalcord

Submitted by Gary Wilson (guest) on Tue, 03/29/2011 - 3:06pm.

the doctors just found this out (three weeks after the fact), the nurse denied that she could have done that and treated my wife for a common migrane 3 days after her epederal shot. 3 weeks later we saw an ortho surgon, he was almost positive that it was spinal and not nerve... at the time i was thankfull, but now im not sure. im wondering if this is life threatening, for i dont feel anyone wants to take responsibility for this, and im not looking for any thing but for my wife to be ok... shes resting and good for now, but yesterday she hadnt ate or drank in 24 hrs so i took her to the doctors (where they confirmed the idea they have no idea what to do) they rehyderated her and shes seemingly ok, but im again very concerned. any info sent would be a blessing, thanks.

Not Taking Responsibility

Submitted by Serendip Visitor (guest) on Thu, 03/31/2011 - 3:14pm.

It has been my experience, too, that no doctors want to have anything at all to do with my illness, let alone take any kind of responsibility for the mess-ups.

A CT-scan was urgently recommended back in 2006 and I was denied it by the hospital I had been transferred because the doctor felt it "was not necessary."

Huh! Not necessary! In 2008 major csf leakage symptoms, two failed surgeries, can no longer lead a halfway normal life. I am livid but I am not alone.

No, if it is not a routine procedure, no doctor wants to have anything at all to do with cases which only use up his or her time and are difficult to solve.

So much for going into the profession as a calling.

Regards,
Marie

Question 2 for Sabrina

Submitted by Serendip Visitor (guest) on Wed, 03/23/2011 - 3:58pm.

Hi Sabrina,

May I ask, now that you are on the state insurance (Medicaid or is it Medicare??), does this mean you no longer have coverage to see the experts (i.e., Dr. Schievink & co.)?

Marie

Question for Sabrina

Submitted by Serendip Visitor (guest) on Wed, 03/23/2011 - 3:55pm.

Dear Sabrina,

I am an American citizen, but am living and am insured in Germany.

May I ask, how are you insured?
My family in the U.S. seems to think if I simply show up at one of the renowned hospitals I will get the treatment I need.

That is not what I know about the health system in the U.S.

Therefore I am asking the question regarding the insurance coverage.

I sent all records to Johns Hopkins requesting treatment recommendation and a cost estimate for my insurance company here, but they want to see me in person.

That is simply out of the question. Not only am I too sick to travel like that, but who will pay for it? Certainly not my insurance company for a consultation.

I provided all imaging, all previous reports on the failed defect repair attempts....

I have yet to get my records to Dr. Schievink. It is all so cumbersome and hard without support.

My husband left me. It was too much for him to bear. And one of my sisters told me all of my illnesses were too much for her to handle. I have lost friends.

But I now know who is a true friend, and I have--believe it or not!--gained new friends! Even in this condition! So there you have it. There really is a silver lining somewhere in every cloud, although to be perfectly honest, I could do without this experience.

Marie

Head heaviness & Swaying sensation

Submitted by Swaying 13 (guest) on Fri, 03/18/2011 - 1:00am.

Head heaviness plus ear pressures and ”swaying about” sensation
I am a single lady, age 60 & I developed a sensitive (mild ethmoid & maxillary Sinusitis) nose since 2002. In Oct 2006 I went to China for holiday and for 2 weeks in Nov I had a very bad flu, running nose with lots of green mucus coming out of the nose. In Jan 2007 one night, I felt a “snap” feeling on a spot on the top Right side of my head. The next day I got up, I felt my head very heavy with pressure and I felt like a drunk person “swaying about” plus heaviness (force) cascading down from back of head “area between 2 ears” and at times top of head passed by both inner ears, both cheeks of face, jaws to neck & body. Since then inner ears feel tight & full with a gentle pressure, especially more intense in the Right inner ear. At the same time I feel & hear gentle beating of my heart & nerves around my ears/cheeks/jaws. Muscles back of my neck are very tense & tight. Sept 2008 , 3 Thornwaldt cysts with heavy growth of Staphylococcus aureus bacteria were removed by endoscopic operation from my nose.

Also, I always feel a strong heavy force that is always pushing me to the back or to the front or to the sides. When I sit upright , I feel the same force instantly pushing me back towards the chair/sofa back (during watch TV, type emails, eating daily meals) When I bend down to pick up a thing from a table located below my waist, I feel this same force instantly pulling me down to the table or pulling me to roll over when I about to lie down . I find myself swaying about whenever I do any simple physical activity or movement plus a sore feeling on the head, around the area where I felt the “snap”.
Swaying plus heaviness become worse when I stand upright or sit upright, even for a second, followed by gentle beating of my heart & nerves around ears/cheeks/jaws. Any exerting of strength or stretching of limbs will aggravate my condition. The only exercise I can do daily is just to walk slowly and I use a walking stick , which inexplicably lessens a little bit the impact of the heaviness/swaying. There is really no life for me anymore!

Strangely, when I lie down, all my heaviness on my head, ear pressures and my “swaying” slowly diminish.

One ENT Specialist suspected that 1 of the 3 little bones that controls balance in my Right ear is damaged, another Neurologist suspected a flu virus has damaged a tiny brain nerve.

Could my head heaviness be due to SIH and the leak is in the head where the “snap” was? Also could my swaying sensation (imbalance) be caused by the CSF affecting my inner ear mechanism, which controls balance? I would be very grateful, if someone could tell me something about my strange sickness (imbalance). By the way, I live in a country where SIH is unheard of.

Heavy head, neck pain & dull headache

Submitted by Oyster67 (guest) on Fri, 11/25/2011 - 5:11pm.

Your post relates to exactly some of my issues. I was born with a cavernous malformation on my brainstem. March 2011 I had an aneyurism from it and since then a very heavy head especially right side, walking more to left (use cane), constant ringing in my right ear, dull headache when sitting/standing up, very painfully stiff neck, imbalance issues, blurry vision, etc. Two weeks later had crainoctemy to repair the malformation & developed soft protrusion in neck. Result was hydrocephalus and had lp shunt fitted 5 months later & the protrusion was gone with then excruciating pain that felt like my brains were. Ring sucked through my neck. He adjusted the shunt with some relief.
I told my neurosurgeon that I had all the symptoms of a csf leak, including watery/metallic tasting fluid coming out of nose at times and all the mentioned symptoms. He deemed it psychological & said 2 ct scans didn't show leak. I'm 3 months out of the shunt surgery & still have same issues, few days I have energy to do anything. I'm persistently ill, can no longer work and dismissed from driving because of my vision. It's very frustrating but I don't feel as alone when I read your post.

Same symptoms.

Submitted by Serendip Visitor (guest) on Sun, 09/25/2011 - 9:45pm.

I have the same symptoms as you and have also been diagnosed with 3 degenerated disks in my neck... curious

CSF Leaks and Spontaneous Intracranial Hypotension

Submitted by RHS-TOO (guest) on Wed, 04/13/2011 - 11:32pm.

These symptoms are mirrored by most people who have suffered from Zoster Virus (shingles) and Ramsay Hunt Syndrome. The Neurotology Clinic at Duke University in Durham, NC is seeing many of these people lately, and doing on-going research to find answers for them. Spinal fluid problems seem to hold some answers!
RamsayHunt.org
http://www.dukehealth.org/locations/duke_otolaryngology_head_neck_ent

Feeling Helpless, Know the Feeling of the Force

Submitted by Serendip Visitor (guest) on Wed, 03/23/2011 - 3:10pm.

Hi,

As I wrote in subject line, am feeling very helpless because my symptoms are getting worse over time.

A new symptom which cropped up about 2 weeks is exactly what you described in your contribution: Upon waking when I get out of bed to try and walk, I feel a wall of some kind of force pushing me from the left side and I have to really struggle with the right side of my body to walk and stand straight. That subsides after awhile.

I am seeing my neurologist again to inform him of this new symptom.

However, my helpless feeling stems from the fact that I have been told by countless doctors here in Germany, including my neurologist, that I cannot expect any help from any of my doctors. What I need--and these were his exact words--is a friend who happens to be a doctor who would be willing to look for a specialist for me. It is too much to ask. The existing health system robs the doctors of any capacity to treat anything out of the normal course of business.

Can you imagine this?

Well, I surely can now after having been confronted with this terrible defect and the resulting impact it has had on my life. My life has been taken away from me but yet I am not actually dying anytime soon as far as I know. So it is life, but with the quality taken from it.

So now the challenge is to find peace with the current situation. Not an easy task, especially when you spend most of your time lying in bed staring at the ceiling because you are incapable of doing anything else standing or sitting due to symptoms of defect.

Sorry I am not of more help, but your contribution has helped me. Reading the description by someone else of what I am going through, feeling totally like a freak, gives me the feeling of not being alone and that in itself is comforting.

Take care and I wish you all the best.

Marie

Head heaviness,ear pressures,swaying sensation

Submitted by Swaying 13 (guest) on Fri, 03/11/2011 - 5:16am.

I am a single lady, age 60 & I developed a sensitive (mild ethmoid & maxillary Sinusitis) nose since 2002. In Oct 2006 I went to China for holiday and for 2 weeks in Nov I had a very bad flu, running nose with lots of green mucus coming out of the nose. In Jan 2007 one night, I felt a “snap” feeling on a spot on the top Right side of my head. The next day I got up, I felt my head very heavy with pressure and I felt like a drunk person “swaying about” plus heaviness (force) cascading down from back of head “area between 2 ears” and at times top of head passed by both inner ears, both cheeks of face, jaws to neck & body. Since then inner ears feel tight & full with a gentle pressure, especially more intense in the Right inner ear. At the same time I feel & hear gentle beating of my heart & nerves around my ears/cheeks/jaws. Muscles back of my neck are very tense & tight. Sept 2008 , 3 Thornwaldt cysts with heavy growth of Staphylococcus aureus bacteria were removed by endoscopic operation from my nose.

Strangely, when I lie down, all my heaviness on my head, ear pressures and my “swaying” slowly diminish.

One ENT Specialist suspected that 1 of the 3 little bones that controls balance in my Right ear is damaged, another Neurologist suspected a flu virus has damaged a tiny brain nerve.

Post Blood Patch Symptoms

Submitted by Serendip Visitor (guest) on Tue, 03/01/2011 - 2:13am.

My unbelievably painful headaches began January 12th (the day after my 49th birthday). I just thought I had a severe case of the flu. My doctor just thought I had a migrane headache, injected me with magnesium and sent me home even though I was in agony. Finally on January 29th Overlake Emergency Physcian diagnosed it as a spontaneous CSF Leak. They performed a blood patch on February 9th even though we never found the exact location of the leak. It took 5 days for my spinal fluid to refill, but I was finally headache free after 5+ weeks in bed. I the last two weeks I had two more headache episodes which were both severe and sent me back to bed. I have also had 5-6 weird experiences where I feel pressure in my brain like the blood vessels in my head are expanding, my ears sound muffled and I get really scared. I also have a lot of pain and stiffness in my neck which will not go away. Now today the pressure feeling has been happening almost constantly for the last 8 hours. My left ear is tender in the ear canal.

Has anyone else felt this after their blood patch? The best way I know how to describe it is it feels as though I have been hanging upside down and the blood has gone to my head giving the feeling of pressure and muffling my hearing like I put my hands over my ears. I called the neurologist today and they are supposed to call me in the morning. Could it be Tinnitus?

post blood patch symptoms

Submitted by Serendip Visitor (guest) on Fri, 07/22/2011 - 8:41pm.

Hi,

I have the same symptoms as you! I had a lumbar puncture the beginning of April, a blood patch 12 days after this. It relieved the very bad headache. The I started to get dizziness, severe pressure, base of skull pain and burning as well as neck shoulder pain and burning. These symtoms lasted for 6 weeks at which time I finally had another blood patch which didnt do anything to relieve these symptoms. The headache specilist dr is suggesting that it is now migraine caused by this brain trauma.
Do you still have symptoms?
What did your dr say?

Post Blood Patch Symptoms

Submitted by BJ (guest) on Fri, 04/29/2011 - 6:03pm.

My short answer is...Yes, I have a feeling exactly like you describe. Before my blood patch(es), I had a very positional headache that, upon rising, would begin like a normal headrush but end with a searing pain along the inside of my entire skull. Then as I remained errect, my neck would painfully constrict, and I had pain at the base of my skull and behind my eyes.

After my last patch, this positional phenomenon is gone, but I have a constant ache. Your description like having been upside down is good, but I'd also add that mine feels like dull pins and needles surrounding my entire brain. I have no throbbing or pulsing, but rather a constant pain. I also sense a pressure behind my eyes & nose and it simply feels weird if I move my eyes fast or open them wider.

You said they didn't identify the exact location of the leak, but may I ask where your blood patch was delivered? My leak is C6/C7 anterior, so my injections were in my neck and I laid on my stomach/side in the hours after to guide the blood to the leak site. I've wondered if the neck vs lumbar delivery of the patch has added to pressure/pain issues.

Pressure in head area and ears

Submitted by ann (guest) on Wed, 03/02/2011 - 2:57pm.

I felt compelled to simply let you know, that even though I will not be much help because I have a spontaneous dura defect and osseous defect of the skull base with brain prolapse and persistent liquorrhoe, I DO have that sensation you are describing and in my case it is due to the brain prolapse, build-up of brain fluid behind the ear, pressure changes when I lose too much CSF or am in an upright or stiff position for too long.

I am a bit confused as due to the fact that my defect is in the dura and skull, I do not know much about people getting blood patches or even what it is like to have the defect in the spinal area.

However, you had asked has anyone experienced these symptoms....and yes, I repeatedly do. The reason I wanted to post this is because so many doctors I see for other reasons, even though I have two unsuccessful surgeries for this problem, when it comes to this part of my medical history and current symptoms I am simply not believed.

That is unheard of and an outrage, but this is what patients of rare, rarely diagnosed or hardly researched illnesses always go through. A course on the history of medicine which every medical doctor attends is enough to let them know that just because they cannot explain something does not mean it does not exist, that the patient is making it up or hysterical!!

But that is beside the point right now.

Wanted to tell you to certainly consult your doctors about that and look up Dr. Wouter Schievink's works if you can. He has written a lot on the subject.

Response from my MD

Submitted by Bellevue WA CSF Patient (guest) on Wed, 03/02/2011 - 3:25am.

Neurologist feels that I still have a small leak which is causing my occasional headaches and the weird brain episodes. He suggested another caffeine infusion and then a second blood patch if symptoms continue. He did feel that the body has an amazing ability to heal itself so to keep a positive attitude, eat properly and be mellow for the next 30 days while my body continues to heal. I look forward to being 100% every day.

Like a Concussion, Really

Submitted by Serendip Visitor (guest) on Sat, 02/12/2011 - 2:21pm.

I updated this because in my article below entitled "The Real Cause of the Symptoms of CSF Leaks", I stated that a person with CSF hypovolemia was receiving repeated mini-concussions. I am passing on the symptoms of concussion, albeit from a national Canadian magazine about concussions in sport, not a medical journal, but it is readable.
One or more of the following:
1) Loss of consciousness
2) Seizure or convulsion
3) Amnesia
4) Headache
5) Pressure in head
6) Neck pain
7) Nausea or vomiting
8) Dizziness
9) Blurred vision
10) Balance problems
11) Sensitivity to light
12) Sensitivity to noise
13) Feeling slowed down
14) Feeling in a fog
15) Difficulty concentrating
16) Difficulty remembering
17) Fatigue or low energy
18) Confusion
19) More emotional
20) Irritability
21) Sadness (depression)
22) Nervous or anxious

Does this seem familiar? Of course it does. The time required to recover from a concussion is affected by activities. The prescription for concussion is cognitive rest and physical rest, as absolute as possible. This is carried out until the person is absolutely symptom-free. The more the person does, the longer the effects last. So, even if you have had an operation which sealed the leak, you probably still have some effects, and they will take a long time to go away, and as well there is the problem of reopening the leak or background minimal leakage caused by activities, so therefore, at the risk of sounding like a parent yelling at bad children, I am like a parent yelling at bad children, because in your innocence you have no idea what you are dealing with, and what happens if it becomes chronic. I read about people wanting their lives back, and even wondering if life is worth it if one suffers from these symptoms, so the first principle is that you limit your activities, and the second is that you read and follow the suggestions in my article several submissions below. Whenever we have a medical condition, we all want it to go away, but trust me, this may never go away entirely, you may have to manage it, you may have to sacrifice all sorts of things that you want to do right now, but you have to treat this with the seriousness of a vision-threatening, consciousness-threatening, life-threatening condition. I was refraining from saying anything, but people are mentioning this, so I will confirm it. Most physicians don't have any idea what they are doing on this condition. I read an article from the New York Times explaining a case of a physician who hit his head on his car, and suddenly began having blinding headaches. Although the eventual diagnosis (how long it took I don't know) was CSF leak, four months into the time line of the article, he had received 5 CT scans, they had found an unexplained pool of fluid in his forehead with the first CT scan, and he was at that point consulting with eminent brain surgeons who were professors at a nearby university, and still no one had a clue. I couldn't read any more. I found an article on CSF leaks into the sinuses which stated that this was first discovered by someone named Galen in the Second Century BC, and the first operations in the US were done to try to correct the condition 80 years ago. Yet today, specialists and radiologists will state that such a leak is impossible, and that it is impossible to have a CSF leak without having meningitis, and other such categorical pronouncements, and will refuse to do tests or scans. It is incomprehensible to me. If any doctors read this, please consider reading Wikipedia. It is all there, as well as in peer-reviewed articles all over the Internet. Just search "CSF hypovolemia".

Again...Thank you..for more

Submitted by Serendip Visitor (guest) on Sun, 02/13/2011 - 4:49pm.

Again...Thank you..for more info....I also wonder about it seeping thru the patch...my own skin was used along with fibrin glue and bone wax...I still feel the same ups and downs before the surg and i guess i see why more now..just frustrated beyond...you help give peace into this...That was one of the first article I read also..no doctors will ever read your stuff or ours..if they did more of them would get it...another problem is detection of leak..BIG PROBLEM...I had a test called intrathecal high pressure cisternagram...no one from any discussion board other than me have had it..they ask their docs sbout it they say ????? or very few who did know said it was to invasive?? it is...but had to do it..they never worried about all the other cistos and mylo and dyes all the pokes in my back and a blood patch (BLIND) and the leak was in head so ebp not work for head anyways so that was very invasive? ya think..uggg again just to crazy..how come one doc uses it and others know nothing about it? finding the leak is the first step...afetr that you just wait to see where you go next..then the next...etc... I use dr. mercolla or dr. williams for reaearch into supplement and feeding your body to health...thought you might be interested in whatt they say..good stuff....THANKS

My difficult to treat CSF leak was cured

Submitted by Carolyn (guest) on Sat, 02/05/2011 - 11:15pm.

I suffered from a CSF leak in 2010 due to a Ballroom Dancing very deep dip. I was in agony for 4 months with severe head pain and fluid in my ears, nose, and head. I had 3 blood patches outpatient which were unsuccessful, mostly b/c the area of the leak wasn't located and the anestheseologists didn't recommend that I lay flat to let the blood patch seal the leak. I decided to go to a very reputable and well-known hospital Yale in CT so that I could get excellent treatment. I located a brilliant neuro-surgeon Dr. Ken Vives, who recommended a CT Mylogram which is a painful test which sends a tracer through the spine and brain to locate the leak. Once the area of the leak was determined by my neuroradiologist who performed the mylogram, Dr. Michelle Johnson who is sharp and thinks outside the box, the two of them decided to do a series of blood patches to the exact site of the leak. They were an excellent team. They decided to hospitalize me laying down (with a cathedar, without moving) for 48 hours and then discharged me home with my family staying with me so that I would not get up and just lay flat, and caring for me round-the clock so that the blood patch would clot the area of the leak. This inpatient procedure was done 3 times, and finally it worked! My advice to you is don't give up hope. Go to an excellent neuro-surgeon, find the leak, do several blood patches to that exact location and then lay flat for weeks if you have to. It was a miracle becase Christmas Eve I was finally able to stand up for an hour, I was improving but the headache came back so I decided to lay flat without moving another week and all of a sudden I was able to slowly practice getting up a little each day (my body had become weak, my legs had atrophed by laying down for 4 months) but I finally started testing it to see if it worked and it did. I was cured. I got my life back and I believe you can too. If you are suffering with a CSF leak have an excellent neuroradiologist do a mylogram to find the location of the leak, have blood patches done at the site not just guess work, then lay flat for weeks. It worked for me. This is a painful and depressing illness, I know. But you don't have to live with it. Mine was considered the most difficult to treat that Yale had ever seen but due to the persistance of my neuro team, I am recovering. Good luck to you and God bless you.

I too had a spontaneous leak,

Submitted by Serendip Visitor (guest) on Wed, 02/09/2011 - 2:52pm.

I too had a spontaneous leak, sealed 4 weeks ago, after fighting it for 6 weeks. I was treated by a Greenwich, CT neurologist who was actually in contact with both of the Yale docs you mention about my case. I am an athlete also and was wondering what excercise restrictions / time frame you were given?

Who operated on you at Yale?

Submitted by Serendip Visitor (guest) on Tue, 05/10/2011 - 1:45pm.

Where was your spontaneous defect located?

CSF/subdural hematoma/meningitis

Submitted by Kitty Kat (guest) on Sat, 02/05/2011 - 12:41am.

Greetings- I am a 32 yr old (was very active till this) female.

In May of 2009 I was at a 3 day bachelorette party and heavy drinking was involved. Day 2-in the morning I woke up in the hotel throwing up and severe headaches. Everyone made fun of me all day long cause they said I was hungover. I have been hungover before, but NOTHING like this. I knew something was very wrong. As the day went by, I could not function. The headaches were more painful. Day 3 on the 3.5 hour car ride home I had to lay flat in the mini van to get rid of the headache. If I raised up I would vomit. My neck was stiff.

I had recently moved away (for dream job)from friends and family to a rural area that was 2 hours away. I drove myself to the ER just for no scans to be done. They released me telling me I was having "muscle spasms" in my neck. The following day I woke up screaming as I tried to raise out of bed. I had to lay flat on my back and scoot down the stairs. I could not move my neck up/down or side/side. My frontal right lobe I thought was going to burst. I was running a fever. I headed back to the ER. The ER nurse at check in remembered me from day before. I was in constant tears and screaming w/ pain. She said she was afraid I had meningitis. 8 days in hospital the doctors couldn't really find anything. High protein from spinal tap and 2 ruptured disc in c5/6 6/7 was the conclusion. Sent me home. I still had the "killer" headaches.

I quickly learned pain meds didn't help. Laying flat gave instant relief and I became dependant on excedrin migraine. I was taking 3-4 at a time atleast 4 times a day for about 4 weeks. I was buying a new bottle every other day.

4 weeks after the hospital I went to the lake for 4th of July. I was ontop of a bridge about 25-30ft from water when I went over the guardrail of bridge and flipped 1.25 times (on accident) into the water. It left me unconscious and thank God I had life jacket on. I was with a nurse and refused to go to ER since I had such a bad experience. The headaches were back, loss of smell and taste added to the list, along with a tingle sensation that started in my head and went down entire left side of body. I saw the neuro doc within 10 hours and he didn't scan me. Said I had "reinjured" my neck and sent me to PT. During a visit at the PT- I felt my heart was going to pound out of my chest. The tingle started in my head and crawled through the entire left side of body. I couldn't move my arm or leg. My resting heart rate was 200. My BP normal avg around 106/68 and it was 150/90. Saw a doctor that sent me straight to a neurologist. That person gave me a script for Topamax- tapped me on the leg and told me all I was having was a "little migraine".

6 weeks later I thought I was going to lose my dream job. I drove 2 hours to go back home to my family doctor. He was very upset a scan wasn't done. Had MRI w/wo contrast. Findings showed a small focal subdural hematoma, and secondary meningitis that was likely from the fall causing a subarachnoid hemorrhage. Another week stay this time in a metro hospital. Spinal tap showed protein at 109, angiogram did not show a bleed but twisted vein. The doctor told me he thought I had SIH which he said was very rare but possible. The headaches that brought me to the FIRST hospital were the same and the spinal tap did not cause the CSF leak. I lost my sense of taste and smell for about 3 months. I had episodes of the tingle and high resting heart rate for about a month.

I don't know how serious a SIH headache could be- but I pray everyday that I will NEVER have them agian. After reading this site, it made sense to me why laying flat and the excedrin migraine (has caffeine) would provide relief. Headaches have diminshed but problems with my neck have grown. I am just wondering is it possible to get the low pressure headaches again? I pray for those who have them. I have NEVER felt that kind of pain before.

Hi, Just reading your story

Submitted by Andrea Fulcher (guest) on Mon, 08/22/2011 - 7:29am.

Hi,

Just reading your story and it sounds so like mine its unbelieveable. I put my illness down to Xmas Celebrations but after the third day I knew there was no way I could still have a hangover. After many mis-diagnosis of migraines, sinus infections, CAT scans, MRI scans my SIH and CSF leak was found. A month in hospital, 2 epidural blood patches later i was released. But my symptoms have arose again 6 months later, I have had another 2 epidural blood patches, but still have the symptoms, just starting again, and waiting to hear from my neurologist about what they are going to do next..........they say generally they dont know why it happens, and if it will ever happen again, well my 2nd episode, 4 patches later I still have it.....waiting for that miracle headache cure.

csf/leak

Submitted by Serendip Visitor (guest) on Thu, 06/02/2011 - 11:44am.

hey kitty kat wat was the cause of the high resting heart rate?? was it the csf leak?? how did u get over it??

CSF Leaks

Submitted by Wally (guest) on Thu, 02/03/2011 - 2:18pm.

I undergone a Myelogram in November 2008. Followed by two blood patches. The first two months were Hell! I've went months without having anymore headaches but they always pop up when I do something strenuous. I've had fusion sugeries and a Spinal COrd Stimulator Implant. Up until three weeks ago, I went about seven months with no spinal headaches. I use a Life FItness Recumbent Bike 3 times a week and I've been doing this for a year and a half with no problems. Two months ago I bought a Total Gym to do simple resistance type of workouts. I did four or five weeks of workouts (twice weekly) without trouble. Three weeks ago I over did it and now, once again, I'm plagued by these headaches. I'm seeing another nerologist in a few hours. I'm not sure how knowlegable he will be. I'm very disappointed. It's bad emough my lubmar spine is a mess along with my hips and naturally pain in my legs but these headaches are too much. Its been 26 months ago since this thing started. It's not worth living with this type of problem. If I can't at least do some activity daily, what's the use in living? I'm only 34 years old.

Hi Wally, have things gotten

Submitted by Serendip Visitor (guest) on Tue, 05/17/2011 - 3:28pm.

Hi Wally, have things gotten any better?

I feel the same way....I have been lying down 22 hrs. out of 24 since 2008.

Before that, ever since the beginning of 2000, I have been suffering the symptoms of the--at that time--still undetected spontaneous csf defect/leak in the dura/skull base.

Unfortunately two failed surgeries in 2008 made the symptoms worse.

Ever since then I have been struggling on a daily basis to find a reason to carry on.

I am older than you, 52 yrs. of age. Nevertheless when all you can do is lie flat on your back, life looks pretty glim.

I do a lot of reading. Am trying to find a specialist with a promising idea of how to repair the defect.

Depression certainly is an issue in this situation and I am quite surprised by the fact that it did not really set in this heavily until the beginning of 2010. I have a very strong will. But am finding where my limits are.

Take care and keep us posted on anything new.

Marie/Ann

Your headaches

Submitted by Serendip Visitor (guest) on Sun, 02/06/2011 - 11:58am.

Everything that you are experiencing is explained just below in my article about the Real Cause of the symptoms from CSF leaks. In the meantime, stop working out and stop doing strenuous things. You have a serious medical condition.

I had a csf leak that began

Submitted by Serendip Visitor (guest) on Tue, 02/01/2011 - 9:11pm.

I had a csf leak that began in July of 2009. I had been misdiagnosed with a migraine and referred to a neurologist who told me it was probably hormonal and they didn't see a reason to order an mri. After another month of so of being on what I thought was my death bed, I begged my family Dr. to order an MRI. It showed that I had almost NO csf in my brain. I was referred to a Neurosurgeon who started with a blood patch, didn't work so then had a cervical myelogram, did not see a leak, then had a cysternogram with nuclear medicine, still could not find the leak, over the next few months I had 4 more blood patches the last seemed to work. I could finally sit up, walk, and make it past 3pm without feeling excruciating pressure.
A few months after the last blood patch I told my Dr. that I just didn't feel 100%. I felt like every now and then my hearing was extremely sensitive, my neck always feels "tired" or stiff, I feel like my brain weighs 20lbs and is pressing on my spinal cord.
He said to give it some time. So I've been giving it time, and it still feels the same.
I gained 40lbs while I had the leak from craving nothing but sugar and eating cupcakes, ice cream, chocolate shakes, mountain dew, chocolate cake, bag after bags of hersheys candy bar miniatures, I was extremely active before I fell ill and when I started back to the gym, I felt like crap! I cannot even lose a pound. I am so tired when I get done at the gym that I have no energy for the remainder of the day.
My fam. Dr. put me on phentermine (for weigh loss) and I actually gained 1/2 a lb. a month for 4 months. She was baffled. I had a blood test done to check my thyroid and she said the results were low but didn't feel that they were low enough to put me on medication for it.
So I continued to work out, then started back to school, still no weight loss, I have been off of birth control since the illness, my husband and I have been trying to have a baby and nothing! We went to a specialist and we are both healthy as far as reproduction goes. I was on clomid for 4 months and I was not ovulating AT ALL. I have 2 children and no issues getting pregnate with them.
I am more angry than I have ever been, I can cry over anything, my husband said that he feels like I have mental issues! I simply don't feel like myself and I don't know what else to do!

I want ME back!!

So now I work out, get done and feel like I'm going to pass out, I feel "off", a little disorientated, get a muffled hearing, kind of like I've dove into a deep pool of water, but the sound of like metal, keys, high pitched noises, dog barking, drives me up the wall, I feel like I have bubbles in my spinal cord, like I need to have my back popped and this awful pinching/straining pain in my left shoulder blade. I am tired all of the time! I have tried vitamins, nutritional food, nothing works.

I contacted my neurologist a few weeks ago and told them all of this AGAIN and they told me that they didn't feel like any of these symptoms were related to a csf leak because I would feel awful ALL of the time, not just sometimes and after certain activities. They said that they would refer me to a neurologist but they didn't see any reason to see me.

So I went back to my family Dr. and she feels strongly that due to the amount of time that my brain was lacking the csf that there is damage to my pituitary and she has referred me to an Endocrinologist.
I guess in the meantime I'm going to go ahead and take the referral to the Neurologist as well and ask them to please order an MRI because they never did an MRI after the 5th blood patch. They just based me being "healed" on the information that I gave them by saying "I feel alot better".

I am not 100% though and I should be and I want my body and health back!

Amy -Peoria IL>

wow

Submitted by PK (guest) on Tue, 10/08/2013 - 10:42pm.

YOUR SYMPTOMS ARE MY SYMPTOMS. wish a doctor within acceptable driving distance would take ky insurance AND appear to care, I think id be fully prepared thanks to you all.

best of God's blessings to you all!!

I know you wrote in awhile

Submitted by Serendip Visitor (guest) on Tue, 05/17/2011 - 3:35pm.

I know you wrote in awhile ago, but I do not have the Internet at home and am penniless due to being out of work and on low disability payments for so many years due to my csf leak.

After reading your entry, I can only say that yes, indeed, you WILL feel the way you do. It is NOT true that if you were leaking you would feel sick 24/7.

I have a long story I will not bore you with as it is posted elsewhere on this site.

However, I must say that I, too, have had to deal with the "mental" issues. But my goodness, who would not get them at some point (the depression, anger and rage at a situation no one around you understands due to the fact that it is so rarely diagnosed and that most doctors have never heard of it).

I know I had to break off friendships because it was impossible to bear. They would not look really into the illness, yet they would judge me and try to say it is only a matter of being strong-willed, or that I am lazy, or that I am ONLY suffering from depression. Yet the depression is surely caused from lying in bed 22 hrs. out of 24. My illness has progressed over the past 11 years.

After two failed surgeries I am not letting anyone else open my skull who cannot claim to have successfully repaired defects similar to mine at least 25 times or more!

Just letting you know you are not alone.

That was important for me, although it does not change your situation.

Please keep us posted on this site if you make any positive progress in the way of finding adequate treatment, etc.

I wish you all the best.

Marie/Ann

Call the following doctor....

Submitted by Penny (guest) on Thu, 04/07/2011 - 11:40pm.

Dear Amy,

I truly feel for all the people that have posted on this site. I do not suffer from this condition but have seen my husband suffer over 2 years ago and just recently. His story is very similar to the ones listed on this webiste and I would encourage you to call the following doctor who specializes in CSF...Dr. Wouter Schievink, MD. He works at Cedar Sinai Medical Center in Beverly Hills, CA. We were lucky enough to find him and he operated on my husband 2 year ago for this condition. My husband was doing well and then needed a second surgery. It is amazing the people I have met there who have this conditon and Dr. SChievink is a master at what he does. People from all over the country go to see him and his number is 310-423-0814. Please let me know if you need anything else as I would be happy to assist. I truly feel for all of you who are going though this as it has been a very long road for my husband.

Sincerely,
Penny

CSF leak/your husband/dr. schievink

Submitted by Serendip Visitor (guest) on Fri, 05/13/2011 - 11:42am.

Hi Penny-
I have been suffering for about 2 1/2 years. I have had 4 blood patches and 2 myelograms. They know I am leaking, but can't find the leak. What surgery did your husband have? I am very interested.
Thanks!
Kristi

Hello Kristi, The surgery my

Submitted by Penny (guest) on Tue, 05/17/2011 - 8:38pm.

Hello Kristi,
The surgery my husband had was a laminectomy and spinal fusion at T1,2,3,4. He is doing great even though he is still healing. This is the same area where the digital myelogram showed the fluid pooling in his spine. He had the surgery 2 years ago and he was great for 2 years then the headaches came back. I know it usually takes a year for the dura to heal. I am currently researching with some of my best friends who are doctors to see why this is happening with the weekness of the dura. I am looking at what I can do for him to strengthen the dura so this will not happen again. If I find anything out I will let you know. Please let me know if you have any other questions.

Sincerely,

Penny

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