CSF Leaks and Spontaneous Intracranial Hypotension

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Biology 202, Spring 2005
First Web Papers
On Serendip

CSF Leaks and Spontaneous Intracranial Hypotension

F Michaels

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

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

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

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

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

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

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

 

References

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

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

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

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

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

 

 

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


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

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


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

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


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

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

Pam Bryan

 

Additional comments made prior to 2007

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

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

 

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

 

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

 

 

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

 

 

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

Comments

Serendip Visitor's picture

Myelogram Blood Patch - Intercrainal Hypotension

Well I Just read through some of the posts and wanted to tell you all about my experience - In June 2011 last year my ears went fuzzy, like on a plane and I could not clear them. Got told it was Ear Infection, then the vomitting started, Emergency room, Ear Infection sent home, 4 days later again - emergency room - CT/MRI - found Brain Bleed, hospital for 3 days and sent home, 7 days later - here we go again, emergency room and emergency burr holes and brain drain. Home after 5 days - on Steriods, made me feel like a drunk - No one could tell me why, also got weird headaches, food no taste and other weird feelings, tired all the time, thought I was in a deep depression. However they had also found a benign Meningioma and sent me to Duke Univeristy Hospital to see a specailist there. I did not go to Duke until Dec 20th - so had been fighting this weird feelings for 6 months - after talk to the Dr for just a few moments, he mentioned Intercranial Pressure. To cut a long story short, I went back on February 16th 2012 and had a MYLOGRAM BLOOD PATCH 6 - 8 leaks were found and with in hours felt like my old self, almost felt they took my head and gave me back my old one. I was amazed and everyone I have spoken to and seen can't believe the difference in me. My outlook on life has changed back to the old me and I feel like me befor I got sick - 9 months ago. Thank you Dr Linda Gray at Duke.

kim goodrich's picture

my symptoms after a head injury

My symptoms have just been described! I received a closed head injury in march '11 from a car accident. I've never been the same. My neurologist claims its either from the car wreck or from stress but has no positive answer. I now have something I can present him with and we can discuss it.!!! Im so thrilled to hear that this could very well be something and that I can do something about it.

Hugh's picture

CSF leakage due to surgery

Hi there, I had surgery to remove a cyst from my right Sphenoid Sinus last Feb (2011) Also the ENT Surgeon was to perform a Treffine on my left Frontal Sinus to investigate a large Ostioma tumour , which showed up on a CT Scan. While performing this he not only drilled straight through the tumour, but carried on through the sinus and into and through the Dura. I had emergency surgery to repair the hole. The Surgeon informed me it was repaired using bone wax and tissue. Hence my enquiry to anyone that can reply. Can I still fly or is the cabin pressure in an aircraft going to affect the repair as to it opening up again.
Regarding headaches' I've had severe occiptal (back of head) pain going on 3 years'. After numerous scans' 8 x MRI / 6xCT two with contrast which shows compression of the Spinal Cord at C3-4, C4-5 and C5-6. The Drs' and Neurologist think this is causing the headaches'. I'm on a low dose of Amitryptilene 20 mg which helps greatly.

Serendip Visitor's picture

CSF due to surgery

Hi there,

Please get a new ENT Doctor. Be careful with the Amitryptilene.

Thanks, Connie

Serendip Visitor's picture

low pressure headaches

I am struggling to come to terms with what has happened to me and was in tears when i cam upon this site. just to know that i was not alone...i thought i was going insane - everyone was telling me i had stress and low mood I knew it was more than that. Even giving the doctor all my symtomsshe still treated me for stress and i had antidepresants etc to cut a long story short . eventually i had bilateral burrhole surgery for subdural hematomait - it is thought the leak caused the bleeds. and they never did find the site of the lek. I am just thankful all the nasty headaches and other stuff such as hearing strange noises has gone. Now struggling to get over it all and worried that it may all happen again.

Serendip Visitor's picture

Low Pressure Headaches

All the stress I am going through right now makes me feel frightened. The question I have is this - - - - Could longterm stress (ie 4 years +) cause a spontaneous CSF leak? And - what are the chances of a leak happening again? Once a leak has occurred does this make the area more prone to it happening again? The doctors all say i am cured with the burr hole surgery to evacuate the bleeding - MRI scan did not show where the leak occurred. My doctor thinks I am overreacting - but this is very real to me.

thanks for listening!

Serendip Visitor's picture

MRIs

MRI scans often do not show CSF leaks. I've been through three of them, best and brightest and they don't often show up on MRIs. You need a dynamic CT myelogram and Dr. Gray is the expert on these!

Serendip Visitor's picture

CSF Leaks

It's a difficult condition, and we have a medical foundation in the making at

Serendip Visitor's picture

medical foundation for CSF leaks

Where is the foundation?

Serendip Visitor's picture

i am into my leave my man

i am into my leave my man alone kit/dual casting with Dr.(), and today he emailed me out of the blue. this is on the 5th day of the 1st spell and he is already contacting me. wow, i was starting to think i was beating a dead horse since i have heard from him in 1 month. thank you so much, i can not wait to start the love me again dual casting. the incense and oils smell very good. thank you for helping me. i am going to recommend your service to my friends. thank you again and thank you Dr Gboco!!!!!!!

Serendip Visitor's picture

CSF Leak

I have recently been diagnosed with spontaneous CSF Leak. I guess I am fortunate as I was first diagnosed with Migraines (never before had them) but after a few days I KNEW something was not right and did research on my symptoms and found info on CSF leaks and I matched it to the tee. I emailed my doctor about this info and made an appt. She stated she read my email and did some research and she concurred with me and promptly sent me to a neuralogist. Just had an MRI without contrast (not sure why). He has also talked about a blood patch. Reading all these comments really freaks me out. Has ANYONE recovered completely?? When I asked what to do to heal this (without patch) he stated don't do anything to strenuous. REALLY??? Being on my feet for 15 minutes wipes me out. I will say that the pain is not SCREAMING anymore but it still is painful plus my ears feel very pressurized along with the ringing and sometimes "engine sounds" Tomorrow I have to go back to work, not sure how I will do this, just know I will have to take alot of breaks to lay down. It has been 7 days and I can not imagine months or years of this. Some encouraging news from people who have recovered completely would be nice.....are you out there??

Betsy

Pocket Rocket's picture

Hi Betsy how are you now?

I am resting at the moment at home. But as I am on my own I do need to do reduced domestic stuff means cant be totally bed rest. I tried to go to work and failed many time.

I am desperate to get to back to work but to get back to Neuro Professor seems so far away which will be very bad if this rest is not going to heal me.

Anyone here knows any specialist in Wales or in UK who could help me?

Thank you.

B. Presnell's picture

Damage from enduring this condition?

I, too, would be interested in anyone who thinks they have recovered completely. Are they sympton free including hearing, tinnitus, and "swishing" noises? Also, what exercise do they take. Also, anyone with any permanent neurological damage---memory, confusion, lack of concentration, etc. ?????

jill's picture

Damage from enduring this condition?

I consider myself now fully recovered from my spontaneous leak - my dura ripped with extreme coughing but not diagnosed for more than six months - had blood patch which didn't work and eventually just resorted to staying horizontal - which worked eventually.
I had uncomfortable feelings when standing up for about two years post recovery - whooshing sounds and dragging feelings at the base of my skull. These never materialised into any problems - I just felt that nerves etc were still bruised and taking time to recover (purely my opinion - no medical base for this).
I completely avoided doing any excercise which needed me to use my core muscles (any heavy lifting) - in fact I still never lift anything which I have to really strain to lift - just not worth it. I avoided dancing for some time - I was extremely wary of doing spins. I started jogging again as soon as I felt like it. I have, and will continue to avoid any fair ground rides/theme parks - just doesn't seem worth taking the risk to me.
Life is now back to normal (although I would never have believed that would be possible when I was so poorly for so long). Even if it were to happen again, at least now would recognise the symptoms and immediately rest - which I think would help the leak to heal so much quicker.
Hope that this is helpful.

B. Presnell's picture

Reply and question

Did you ever have a blood patch---how are you now?

Serendip Visitor's picture

I had a blood patch done 2

I had a blood patch done 2 1/2 yrs ago after spending weeks flat on the bed. It took some time, but it worked. I am more or less symptom free now, but I take extra care and do not overdo things, especially lifting.

Serendip Visitor's picture

CSF Leak

I had a Myelogram Blood Patch done in February and I am now 95% back to normal, so I can't waterski anymore but at almost 60 years old so what. My mental state and attitude to life is so more like me. Its had been a long 8 months but now I just get tired and tend to fall asleep in the evenings, but hey I am back.- I had no trauma just brain bleeds, and had emergency sugery in July last year to drain the blood. then months of not feeling right until I saw a doctor at Duke University Hospital who diagnosed Intercranial Pressure problem and now all is well. I still have a meningioma to deal with but I am back.
Maggie

Serendip Visitor's picture

You are lucky to have that doctor

You were lucky to have a doctor who took you seriously and actually was willing to look something up!

I did hear on Facebook (the CSF forum there) from a woman who wrote in stating that, as in most cases, she was healed so her life went on. Then she realized she "owed" it to the forum to at least check in with her positive progress report.

If you do not have a giant gaping hole in your head, as I unfortunately do, I have heard success stories. This is just to encourage you a bit, all is not lost. There are a lot more people on the Facebook forum. Just go to Facebook and search for "CSF" and it will pop up. There are lots of people on there with actual names of doctors, places they've been for treatment. The problem is, we humans are basically different. No two people have the exact same leak! And doctors are fallible. And there are no guarantees in life and no right to health. We all have our turn at some point in dealing with illness and death. It just seems to come as a shock whenever it hits YOU (and everyone else I have ever know faced with illness and ultimately death). At least, that is how it was with me. Unexpected to no end, and years of not being taken seriously.

Even after the confirmation, two failed surgeries, one neurologist had the NERVE to tell me I had migraines, when I also had never had them before. It was a load of baloney and, well, I will stop here. Only wanted to say something encouraging for a change and it is turning now, so good luck, and check out Facebook.

Jillikins's picture

CSF Leak

Dear Betsy
Just a short note to confirm that there are people out there who have recovered from this - me, for one.

I must admit that I was ill for a long time before I was diagnosed (about seven months), by which time I was convinced I had a brain tumour, or similar, and would die. Obviously not the case. But still scary to be diagnosed with a condition that most medics have never even heard of.

I did have a blood patch - it didn't work for me. In the end, I think I cured myself by remaining horizontal for as much time as possible. I kept trying to work through the pain but realised that this just kept the leak going.

I had my spontaneous leak in 2005 and it took about eighteen months before I had recovered to such a level as I could get on with my life - I think if I had been diagnosed earlier and had rested at the beginning, I am sure I would have recovered much quicker.

I still feel vulnerable in my head at times and there are still things which I wouldn't do - really heavy lifting for example. Occasionally I still get that dragging feeling at the back of my head and pulling on my eyes - but I think that some nerves were slightly damaged in the process and they have not fully recovered - only my guess though.

Anyway good luck. Please take it easy for as long as possible and stay horizontal when you can - it will help the leak heal.

B. Presnell's picture

Similar experience

I would like to have an email or verbal contact with you. I have just been diagnosed and really would like to discuss this with someone. I was having a baseline MRI with no active problems and the neurologist found this condition. (I had only had mild headaches and lack of concentration issues). I am not sure how this comment section works, but would love to talk to you as quick as possible as I am going to get a 2nd blood patch---Please reply to my email address---I am a very healthy, active female.

Serendip Visitor's picture

CSF Leaks - Myelogram Blood Patch

You can during the day Monday - Friday 8am - 5pm on my work # If I do not answer leave me a message and I will call you back, - My name is Maggie Ebersold and I would be happy to talk to you about this.

Kane's picture

Following Up

Not sure if you wanted to speak directly with me, but if so please feel free to contact me at

I travel a lot so please be patient as it may take me a few days to respond.

Thanks,

Kane

Mary Powell's picture

contacting you

Kane,

Your contact info did not post. Can you e-mail me at ?

Serendip Visitor's picture

Kane's phone number

Kane,

Can I call you to discuss CSF issues? If so, please e-mail me your number at

Thanks!

Do you or does anyone know of cardio exercise that is ok to do after the BP when you are still having irritated head symptoms or would you just not do anything?

Thanks,

Mary

Serendip Visitor's picture

Mary, I wouldn't do any

Mary,

I wouldn't do any cardio yet. I had my last BP at the end of March and only started doing cardio recently.
I have had residual symptoms and they were intensified when I tried to move too quickly or exercise.
Good luck
Denise

Mary Powell's picture

Your cardio comment Denise

Denise,

Can you e-mail me at ? I would like to speak to you more about this condition as I believe it would help me cope. Perhaps we can exchange phone numbers?

Serendip Visitor's picture

my email address

Mary,

email me directly and then I can give you my phone number and we can talk. I think it would help us both.

Denise

Serendip Visitor's picture

What is your e-mail address?

I will e-mail you but need your e-mail address. please send it to

Mary Powell's picture

Denise on cardio with CSF leaks

Denise,

I tried swimming today and feel better than I have in awhile. Have you tried swimming? Can you let me know how you did if so? I doggy paddled for 30 minutes or so and my head has felt great so far. Please contact me or reply to this on the blog.

Thanks!

Mary Powell

Serendip Visitor's picture

Mary, Sorry I have been

Mary,

Sorry I have been waiting to here from you. I didn't realize I left my w
Email out. It is
I think swimming is the best. My neurologist suggested starting with that early on. I even swam when I was suffering pretty bad.
I have to tell you I've been symptom free for two weeks now! I that I would never get better. There is hope! Email soon.
Denise

Serendip Visitor's picture

CSF

Jillikins,

Was your leak ever found or did you have low pressure only? My leak was not found so I was wondering if I am producing too little of fluid, something my doctors mentioned.

Do you suggest any supplements to take to improve pressure?

Thanks,

Mary

Serendip Visitor's picture

Accupuncture for Possible Solution

I had a blood patch in February 2011 which sealed my CSF Leak. However, I thought I would share what I learned today. I saw a Taiwanese accupunturist for a different reason today. As she was asking my medical history I happened to mention my Spontaneous CSF Leak experience. She got pretty excited and said how important it was that I shared this with her. She had a male patient that had suffered since he was in his late teens and even had the fluid leaking out of his ears. Nothing he had tried had worked. The Accupunturist was able to completely solve his issue and he is still headache free today. In our session, she worked to support my spine and my balance in my body in the effort to prevent another CSF Leak in the future. She also said there was still residual issues linked to this even though I had no symptoms such as the headache.

I share this in the hopes that maybe some of you will find an Accupunturist who is knowledgeable or willing to explore how they might bring you a solution that mainstream medicine is not able to provide you. As I learned in my own journey, we have to take responsibility for our health and for the treatment program as no one else is looking our for our best interest. The truth is, very few medical professionals understand or even acknowledge the CSF Leak is an issue. I did see it mentioned in two episodes of Grays Anatomy so maybe it will become more commonly known in the future.

Good luck and try accupunture... What do you have to loose?

Ruth Toops's picture

acupuncture works

Our 13 years old grandson has had a headache since the evening of Jan. 17, 2012. That day he took an inconsequential fall off his bike. He did not hit his head and didn't even mention the fall until several days later when he still had the headache.

We have suspected from the beginning that he had a dura leak; it seemed to match the symptoms, except it did not get better when he was lying down.

The doctors have done MRI, CT scan, EEG, and lumbar puncture, all normal.

On our own (not insurance paid) we went to an acupuncturist who helped him become pain free for several hours. Since then, two treatments a week, average, he is now pain free for 26 hours following each treatment.

The doctors are treating him for migraine, just increasing and increasing the meds which do nothing for him. Children's Hospital, in Los Angeles, basically wrote him off. The neurologist says live with it. He is not able to go to school, be out of bed, or function, except after acupuncture.

That do we do next?

Thank you.

Serendip Visitor's picture

My dural hole is 3 cm long

Possibly acupuncture could work in terms of feeling better, but it certainly will not repair a hole of that size. The osteo defect is even larger. And the herniated brain tissue will not "go back into place."

Acupuncture here costs a lot and without having been able to work now for so many years, I have nothing left. I am eligible for the free food handouts which are comprised of whatever the local grocers are ready to throw out. I have other health issues for which I require medicines not covered by the insurance and cannot afford those. I cannot afford to get my dental work done.

It is all due to the two failed operations which made the defects larger and due to the missing mastoid they pulverized away to get a "good view" and never wasted a moment's thought as to what this woman is going to do afterwards without that part of her skull! At least before the operations and the ear tubes I was able to work! I felt like crap all of the time, but I was still able to function! That has been taken away from me completely.

I am sorry, right before the holiday season, I have nothing, absolutely nothing positive to say about this. There are no alternatives out there accessible to me.

As long as I can stand (which is not very long and not very often) and talk, I need to focus on how to make the voices heard of countless numbers of patients who have been misdiagnosed, not taken seriously and were subject to malpractice.

That is what I need to hear on this forum and anyone out there who has an inkling of where I can direct that energy, please write in.

I no longer believe I will gain access to competent surgeons who can repair that defect.

Toni's picture

I found the following link

I found the following link great! I suggested to my doctor after still not finding my leak creating all of my low pressure headaches to put me on medication that will increase the pressure to balance me out. She let me know that she had discussed my case with a headache specialist and he made the same recommendation. Please check out this link if you are having headaches that go away when you lay down and they happen daily and the pain increases when standing up. I was having sinus pressure and pain, headaches that increased when I was not lying down and no medications over the counter would work. Excedrin extra strength did help take some of the edge off. check it out

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Serendip Visitor's picture

Headaches

Most of this summer I have been having really bad headaches. Started with sinus infection that I left untreated for weeks I eventually got medicine and cleared it up. I continued getting headaches daily and then my hearing started to go in my left ear. So I went back to the Dr. They told me that maybe the sinus infection didn't go away so they doubled me up on medications and gave me Prednisone for my ear pain/plugged feeling. While I was on Prednisone I felt amazing. Once I was done with the treatment I started right back up with daily headaches. As soon as I stood up in the morning it would hit me. Sometimes the pain was so severe I was crying on the couch laying down when I should have been getting ready for work. After trying everything I could think of to treat it with no success I finally went to the dr again. The doctor thought that I had sinusitis and ordered a CT scan of my sinuses. When the test came back normal the response was since it was not what was expected she didn't know what to do. I called the Dr. a few days later because they were going to hope I would fall through the cracks. I tried to do my own research and come up with different things that could be wrong. I scheduled an appointment with an allergist, I went to the Chiropractor for an adjustment, and I did research online every night. Going to the Chiropractor was the worst thing I could have done, it brought on the most severe pain I have ever had! I was calling the doctor everyday sometimes in tears. The women at the front would make comments like "your are still in pain". Finally I had to yell at one of the nurses and explained that I am trying to do what the right thing is and threaten to go to the ER daily if they didn't do something and switch doctors. Finally, I was able to see a Dr. that did motor tests and looked in my eyes. When she looked in my eyes she said something was not right. She was able to see where there was pressure or something pressing on the back of my eyes. She got me in for a rush MRI where the outcome was that I have low intracranial pressure. Since I didn't have any injury or trauma they were concerned. It has now been since at least 3 months of daily pain. I still have not received a blood patch and bed rest is killing me.

I guess all I have to say is fight! If you know something is wrong and the doctors just are not helping call them every day and make them do their job!! I finally was able to stop calling daily and for a change they call me. Don't let yourself fall through the cracks.

Serendip Visitor's picture

THANK YOU SO MUCH FOR THAT GET UP AND FIGHT 'EM ATTITUDE!

You have no idea what strength reading these lines has given me!

This is exactly the medicine I need(!): Others who have had to fight, will ADMIT that it IS a battle, that so many doctors are NOT doing their jobs must share to spread hope, and ENERGY TO CONTINUE THE BATTLE.

I honestly do not want to hear about all the "nice" stories which worked out.

I suffer from four serious illnesses: skin cancer, fibromyalgia, spontaneous osteo-dura defect and hernias on both sides.

I write "serious" because they are all potentially life-threatening, including, though indirectly, yes, the fibromyalgia. But I will not go into that here. This forum is for another purpose.

In all four cases I had to search for YEARS to get my diagnoses confirmed. I went running from specialist to specialist, ....oh, you know what, I cannot even bear to repeat it.

What I need to help ME, which is why I am on this forum, also to encourage others who keep hearing it's "all in their head" (yes, it really IS in your head, you have a leak or some other problem!) is to hear from other "fighters" out there who did not give up and got results. I am not talking about healing. I am talking: results! We need to encourage each other not to give up.

To listen to how others are lucky to have such wonderful doctors does not help me one iota here in Munich! I am stuck in this horrible situation and I need to be in contact with and hear stories from people who have gone through the same hell I have.

Thanks so much for lighting the fire within me.....the flame was threatening to go out forever.

Patients are in a weak position. What if patients, except for the emergency and IU cases, simply boycotted doctors and hospital for awhile.

It has gotten to the point where I dread going to see a doctor of any kind. I feel like a mistreated dog, cowering in the corner with its tail between its legs. How could I have let it come to this? Lack of hearing words like yours.

I will keep them in mind when I call again tomorrow.

Sincerely,
Marie

Serendip Visitor's picture

Thank you. You have to fight

Thank you. You have to fight for the treatment you deserve now a days and it is mind-blowing how much they get paid for patients having to do all the work. My neurologist says things like "So what do you want to do" my answer always is whatever you recommend I do. ?? Good luck with your fight!

Serendip Visitor's picture

And I thought it was only like that here.....

So this is quite interesting. Patients ALL OVER are getting the same arrogant, inconsiderate treatment.....I honestly thought it was a German thing, or a national insurance problem. (I am writing this fully aware of the fact that NO INSURANCE does not get you anywhere either.....so all those out there against a national insurance plan due to poor treatment they fear they will be subject to, well, even though they have a point there, it does not look like those with the private insurance coverage are getting much better treatment!)

Hey, at least your doctor was nice enough to ASK you what you would like to do as opposed to throwing you out of the office as has happened to me on numerous occasions. Four times I was asked to leave. The other times the doctors simply brushed me off by saying, "you have been dealt a bad hand" and "do not even think for a minute that our insurance system is going to pay for you to go seek the help of some miracle healer in Timbuktu" (this was in response to a question the doctor asked ME. He wanted to know if I had heard of any specialists and I said, yes. When he asked where, I mentioned Dr. Schievink in the U.S. That's when I got the lecture on miracle healers in Timbuktu!

One might say, gee, Marie, maybe it's your attitude....at this point you're d***** right it is! After what I have been through, I have developed a very low opinion of doctors in general and to even hear the word mentioned sets me off. So I had a 9-month time out, WITH therapy to try to make sense of it all. The conclusion is that it makes no sense whatsoever, but to be in a constant state of rage is not helping the situation any. I have an operation of a different nature coming up and in all fairness must say that in this case I know I am in good hands. But it has nothing to do with the CSF problems so this is not the place.

Yes, you CAN get lucky and receive competent medical care by a physician who is in it because he or she has a calling. But those people are far and few between.

Thanks again and should I not hear from you, enjoy the holidays.

Kind regards,
Marie

Serendip Visitor's picture

The Psycho Diagnosis

Can someone, anyone, out there give me a plausible explanation as to why doctors will say symptoms one experiences are the result of a psychological illness if they do not have a test yet to prove something?

A person wrote recently about the strange taste and fluid loss, and was told it is all psychological. Hello! The person had brain surgery and it is VERY LIKELY that he/she truly DOES have a CSF leak!

I have gone through hell due to this not-being-believed by members of the medical profession, and not just for one illness.

And in each case, four in all, it turned out, once the illness had progressed to a certain degree, that I was right! Getting the medical documentation to "prove" I was not imagining things after all does not make up for all that agony of not having been taken seriously.

For some strange reason, if the doctors can find nothing, family and friends tend to also jump on the psycho wagon along with the doctors.

I am an intelligent (at least semi-intelligent) person, once functioning, living life to the fullest. Why on earth would I begin to suddenly start imagining things?

I am honest about this, I would truly like to hear an explanation that will help me be able to forgive all those diagnosticians who cannot simply say, "Gee, I hear you, but I cannot find anything. But with your description of things, it sure does sound like ......(fill in the blank)," not only in my case, but in everyone else's who has gone through the same torture. Yes, it is torture being told you are imagining things when they are, indeed, real. And everytime I read those words "I was told it is psychological" written by someone else, I become so livid. Something needs to be done about this as it is unacceptable.

Are there any lobbies out there for patients??!?

Serendip Visitor Kate's picture

I agree ! Doctors should 'believe ' patients with CSF symptoms

I couldn't agree more! I too, have had a CSF leak post sinus surgery, but AGAIN (it seems) I had to research and self-diagnose etc. and suffer for longer than was needed - but I shall not complain as mine was relatively quick after reading this forum .
It seems as though 'headaches' have such a bad stigma attached to them too!? Why is that?

Thankfully for me, I moved states in Australia and (after 4 x Emergency visits being told I'm stressed / fine /migraines etc. mind you!)
I finally got diagnosed as having an 'intermittent CSF cranial leak' by a neurologist who had 'seen it a few times before'. I mentioned I had thought that all along too! He didn't think I was mad, thankfully! Good bloke!

I find it extraordinary that Doctors would 'assume' first that patients 'fabricate' symptoms etc. I will definitely be advocating on behalf of all people with CSF leaks - (and any other debilitating illnesses) and as much as possible - educate.

I am a health professional myself so I hope I can achieve something!!? It seems that without RESEARCH no doctors will listen, but I will try! ;-)

Keep up believing your selves everyone
Take care and be positive.

I am still not 'fixed' 100% but it will be complex, I am resting more, and may take time... and fingers crossed not more sinus surgery.

THANK YOU for this forum.

Good luck to all,
Kate

Lin's picture

Blood Patch

Hello to everyone, sorry to hear of your suffering and I don't want to throw more complications at you but.
I have read quite a few of the comments and I have not come across anything that warns of the DANGER OF BLOOD PATCHES.
They are a primary cause of ARACHNOIDITIS.
We don't always get to choose "good or bad" sometimes it's "bad or worse" but to make the right choices for you, you need all the facts. Do a search - Blood Patch Arachnoiditis - and look for yourselves.

Lin

stephanie1980's picture

Blood Patch

Long story short, I have been suffering from daily excruating headaches for 7 months now. One day I just woke up in excruating pain. I ended up at Er to Er for a period of 4 weeks. I was told I was having migraines to "it is all in my head" when they finally could not take it any longer and drove longer to another ER. after several tests they gave me a presumative diagnois at U of M ann arbor, mi of spontanous csf low volume headache. they said my MRI showed "sublte patch dural enhancement". During this time, I have had 2 blood patches and now 7 months later I just had my third two days ago. I have so much more to tell and add but since I am in so much pain and I can barley type. After EVERY blood patch my pain has INCREASED?!? the doctors are baffeled and said they have never heard of this. Has anyone had this problem? The pressure in the front of my head is sooo bad and the back of my neck is stiff. Its awful. yesterday I went to my doctor and he gave me 4 sets of injections in my head. I cant take this much longer. I empathized with anyone with a headache.

Ashgraff's picture

So I am suffering from low

So I am suffering from low csf headaches. As a patient at u of m Ann arbor wonder who you see and what treatments. I have hone thru 2 patches. Now trying one more medication then a cistnogram to find the leak. My doc figured out I had pressure headaches in about 3 months but nothing works. The patches only lasr a week. Partly because of work I am sure. So any thoughts on what helps???

stephanie1980's picture

I am also at U of M and see

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

Serendip Visitor's picture

csf leak

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

Connie Paulak's picture

Katie, Try and find Mayo

Katie,

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

Connie

Serendip Visitor's picture

CSF LEAKS (Cerebrospinal Fluid Leak) & Intracranial Hypotension

CSF LEAKS (Cerebrospinal Fluid Leak) & Intracranial Hypotension

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

Good luck to you.

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

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

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

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

Again, good luck in your search.

Marie

Tali Danenberg's picture

Dear Katie - try to find the

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

Misty's picture

Pseudo tumor cerebri

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

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