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.



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






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


Belinda's picture

CSF leak from nostril

Hi Sandra,

I know its some time since your post. I also had a nasal leak from my right nostril but mine was caused by a car accident. I've just had a right frontal-temporal craniotomy to repair both the hole in my cribriform plate and dura. I was wondering, with the nasal endoscopic repair do they actually locate the hole in the dura? Could this be why fluid is now coming from the other nostril. My hole was too large to have a nasal surgery.

LadyNRed1997's picture

I was wondering how your

I was wondering how your recovery was after your surgery? I've also had the surgery to fix a leak that was coming down the left nostril. They took tissue from behind my left ear and used that to fill in tear and also tissue glue. I had the surgery back on 4/18/08 and so far things are good except my nose still seems to be a little numb. He had to move my septum to get up there. I was just wondering what you experienced after your surgery. In the beginning I had no sense of smell, but it came back gradually. Not 100% but majority of it. I do get a burning sensation on the top of my had, but my GP says that's normal for the first 12-18 months after surgery. I get tingling sensations, AND now since October i have ringing in my ears, but not if it's from surgery or just because i'm a 40 year old female if you know what I mean.

Any input would be great!

J's picture


How did you get it fixed? I have been turned down for SSD and Medicare through my state, also can't get insurance because of pre-exisiting conditions.

Christa's picture

intracranial hypotension

I too have this diagnosis and have since August 2007. I had the massive headache and extreme neck pain, water sound in ears and double vision for 3 months. The doctor in the ER could not figure out why my one eye was not tracking until they did the lumber puncture and found I had no fluid and then they did an MRI and it was noticed that my brain had sagged down onto some of the nerves at the base of the skull, especially nerve # 6 which affects the eyes thus causing my double vision. After 3 months my vision returned but I was on complete bed rest, only up to the bathroom for many months. I thought things were getting better and I was hoping to go back to work in September 2008 but in August I started sneezing one day and caused the leak to start back up. I am up about 5 hours a day at a time now but then I need to lie down because my head will be killing me and my neck is sore. I still have a funny beating or pulsing sound in my right ear when I am laying down and at times notice that my eyes seem to leak a bit when I am laying down. I have never had any blood patches but my neurologist said bedrest, avoid anything that puts pressure in the head ( lifting, bending, crouching, running, push/pulling ) and I have had lots of coffee as that is what they recommend. I am now 14 months since the start of this and although it is not as severe as the beginning, it is still leaking and some days it is hard to go on. I am on long term disability right now so that helps a bit.

Anonymous's picture

I have been dealing with

I have been dealing with this too, what was the process to get on disability?

J's picture


I have been turned down for SSD. You will have to go to their website. http://www.socialsecurity.gov/ It took 6 hrs to complete if you have extensive medical history. You will need to get an attorney after you get declined.

Christa's picture

Disability question

I live in Canada so I had to finish off my banked sick days, then I was about the go on Medical Employment Insurance for 15 weeks then I had to have my doctor fill out the application for Long Term Disability and have my Insurance Carrier decide on whether they would cover this. They did but have been right on top of everything pushing me to get back to work.

I hope this helps anyone.....Christa

BLAINE's picture


I to am suffering from headaches, for 8 weeks now. All I want to do is sleep.Symptoms were worse earlier on, but now once waking up in the morning i don't feel to bad, but all the symtoms come back after approximtly one hour later after being in a upright position. I've been in and out of ER for 8 weeks now seen my doctor several times, but no diagnouses as of yet. My symtoms are of coarse headaches,lightheadiness, stiff and sore neck area, pain in around my eyes and behind them, tinnitis,loss of hearing, some vision problems, some confusion phone#s names etc. I am now off work because of these symtoms and am desperately awaiting some kind of answers from someone. My eyes also are glazed over the bottom of my eye lids are slowen and it seems one eye is open more than the other. Is there anyone out there that has similiar systoms?

Jennifer's picture

Follow up

I was wondering if you found a solution? Your post sounds just like my recent experience. I'm not sure what to do at this point. Did you find relief? Please conact me at jenniferjo.young@yahoo.com.

Anonymous's picture


Yes, I posted above you a couple posts. I have all of these and have been going through this for over 8 yrs. You need to see a Neurologist and will end up getting some MRI's of your spine to see if you have a leaking spinal chord or dura tear I think its called. But this is a horrible condition. You can't do anything physical because it triggers these horrible headaches. I currently have a headache 24/7 and then I get the big ones and sit in a dark room with no noise with ice packs puking. I have seen around 4 Neurologists, 1 Neurosurgeon, 2 chiropractors, 1 physical therapist and general practitioners are no help. Don't waste your time with one if he isn't familiar with this condition, you will be waisting your time and money like I have. Make sure you have health insurance job or no job, because you will need it. O I have got injections too that didn't help.

Jesse's picture

CSF Leak Spinal Chord/Cyst

I have had these headaches starting back in 2000. Seen many Neurologists that have not been able to treat me. I am in AZ now and have seen 2 Neurologists here that were no help and won't even give me pain killers for these horrible headaches. After the many useless CT scans and MRI's (with contrast) I have seen a Neurosurgeon finally who told me I have a cyst and my spinal chord is leaking fluid throughout my Cervical and Thoracic spine. I cannot do anything physical for it will trigger intercranial hypotension and I will be in bed for a minimum 6 hrs vomiting, otherwise its the tension headache pulling dreary feeling 24/7. Found this page searching for information on this condition, since it seems NEUROLOGISTS HAVE NOT A CLUE! Since I have no insurance and nobody will sell me any, I cannot get the recommended spinal tap and blood patches which seem to have failed numbers of people. Being 31 and living with this for 10 years, talk about being depressed. Also I have had the hearing and vision issues, dizziness, confusion, numbness, tingling sensations, irritability to say the least and the many other side effects this shitty condition brings along with it. I have no faith in this countries health care system, the Dr's I have seen should be stripped from their credentials.

Lynne Agacy's picture

You poor thing Jesse. I do

You poor thing Jesse. I do not know where AZ is? Could your friends and family do some fundraising to pay for the spinal tap/epidural patches for you? Maybe have a fun run or sponsored walk? Good luck. x

Anonymous's picture



Lynne Agacy's picture


I have recently been diagnosed with SIH after 2.5 years of taking more painkillers than I can remember!

I started with head pains in Jan 2006, and as I had never really suffered from headaches before, thought it was strange. I had had a car crash in December 2005, and never thought it might be related to that, as the head pains came on gradually over time. By Summer 2006 I found that if I went out to a town centre pub, I would get really intense head pains and start to feel sick. One time I was actually sick, just making it to the loo! I was so embarrassed, and told no-one. Since then, I more or less stopped going out, unless it was to friends for dinner or to a restaurant. If I do go out, I now take a pair of soft earplugs with me, and these help immensely. I also used to go to a fair few gigs, but I'm scared to do this now, as I get so ill afterwards. I went to see the Smashing Pumpkins in Manchester in February this year, I felt fine whilst there, but when I got in the car to drive home, I started to feel ill. I started vomitting, and it took me 2.5 hours to drive home, as I could barely see and I was being sick every few minutes - I live in South Yorkshire, so quite a long time! My GP had prescribed Migraleve a couple of days before, so I thought it was more a reaction to those tablets. Now I know it is a combination of the noise and lights that affects me, which is why I cannot go to town centre pubs anymore. I could barely walk down my drive when I got home - I was swerving and would have looked drunk to any onlookers! Had the police stopped me that night, I would have been charged with wreckless driving, I bet!

By May this year, my head pains were at their worst, and I had 2 separate days off work - I just couldn't move my head. Luckily, I sit down all day at work, so I think I have been able to cope with work due to being sat down all the time. By early June, my head was so bad, I ended up being off for 8 weeks. I couldn't stand for long periods of time - I thought I was going mad! I knew this was not classic migraine, as my GP suggested, but couldn't find nothing else that it could be. I got told it was stress, depression, the onset of the menopause - all sorts! My GP has prescribed me Migraleve, Amytriptaline, Cocodamol, Epilepsy tablets - all sorts! I have spent more money on drugs this past 3 years!

I eventually rang NHS Direct and spoke to a wonderful nurse who was so kind, that I started to cry, which is not like me. She also racked her brain, trying to think what could be wrong, and couldn't suggest anything. She told me to go to A & E. I felt so bad, that my husband took me straight away. When I checked in, I told the receptionist I had a severe headache. She said they couldn't see me for this, but could for head pains, so I told her to put that then - they were head pains to me - it felt like I had a metal skull cap fixed tight around my head! When I saw a doctor, HE told me I had a sinus problem, and to inhale steam 3 to 4 times a day! I told him I had been crying, which is why my cheeks and nose were a little tender, and there was nothing wrong with my sinuses - but off he sent me!

The very next day, I was going to see a rheumatologist for a follow up appointment. I told her I was well apart from my back aching and my head pains. I told her about the doctor at A & E saying I had sinus problems, she pressed my nose, cheeks and forehead, and said there was nothing wrong with them, as I had told him. She also told me I had nothing seriously wrong with my back, and that the joint pains I were suffering were probably due to my having been so flexible in my youth (I'm 42 now!), and the fact that I was laying down so much now - this being due to HAVING to lay down, because of the head pains! She told me to tell my GP to refer me to a Neurologist, as they were the only one's who could help me. So off I trotted to my GP - again! He still wasn't happy about me asking to be referred to a Neuro, so I offered to go private - bingo! £130 and I saw the fabulous Dr A Gibson at Parkhill private clinic, based in Doncaster Royal Infirmary grounds. I typed up a list of all my problems, symptoms, etc, so he could keep it with my file. He got me booked in for an MRI and when I saw him a few weeks ago, he told me I had SIH! Now, I had never heard of this, so would never have found it on the 'net, but now I have, particularly your site here, it's like looking through crystal!

I have another MRI at the end of this month, to see if the dura is healing, as I can now bend down again, as long as I am slow and careful. I still sit on the floor to empty and fill the washer, dishwasher, cooker, etc, I still wear my ear plugs when I need to, and I just generally take more time with just moving! I don't shout anymore (my 5 year old is pleased!), I don't take any more painkillers (they don't work for me!) and I'm looking forward to a full recovery (touch wood). At least I know that for me, if I get bad, I just have to lay down for maybe 30 minutes, and I feel lots better.

Dr Gibson thinks it may not be necessary for me to have a blood epidural, but had I seen him in May, instead of July, he would have kept me in there and then, and got on with it! All I can say is that I am quite untrusting of GP's now, and will be more forceful in future, as I have spent all this time and money, when one MRI would have diagnosed me straight away! I bet if you add up all the time for GP appointments, going to see a Rheumotologist, prescriptions, not to even think about time off work that it has cost my employer, it comes to thousands, instead of the £500 or so it costs for one MRI!

Thank you to everyone who posts on here, and for those of you who are suffering, or know someone who is, do post - someone may have a helpful comment for you! I have read and re-read all the posts, and they have helped me enormously.

C L H's picture

CSF my story

April 09
It all started after helping to lift some boxes (very lightweight boxes at that). For days afterwards I had a niggling pain in between my shoulder blades. I never thought anything of it. (It was like mild tooth ache but in the back).

40 yers old female

Monday morning (10 days after pain started) arrived at work with a slight headache (put it down to my sinuses) but after 15 minutes of sitting at my desk, the headache felt different more severe. My boss said that I turned drip white and sent me home. By the time I drove home, felt sick and thought that I’d got flu. By lunch time I was bed ridden and my head felt like it was going to burst. The doctor was called three times but didn’t take me seriously. I am a hardly ever ill so knew that what ever was going on wasn’t normal. I was in tears constantly.
Enough was enough; my husband piled me in the car and took me to the doctors. I literally crawl into the surgery I had major thirst and excruciating pain in my neck, shoulder blades and head when sitting and standing. The doctor took one look at me and booked me into the local hospital.

On explaining my symptoms the consultant he didn’t have a clue but kindly came to see me the next morning to say that he had been looking on the internet and thought I had a spinal leak. A spinal tap was performed and I was told that I had low fluid levels.
I was given pain killers and extra fluids to see it the tear would heal and sent home to have plenty of rest.

Symptoms at this stage:

Pressure pain in my neck
Popping ears
Strange cold feeling in my nose.

After four weeks symptoms manageable (plenty of caffeine and pain killers) but certainly not cured

I was placed under a neurologist and after 4 MRI scans it was eventually confirmed (October 09) that I have a tear in spinal thoracic region.

November 09 – booked in for a bloodpatch
Not a very nice experience, thought it would be similar to spinal tap/lumbar puncture unfortunately if wasn’t and knowing that it has been unsuccessful I am dreading having to have another. (I’m hoping they will give me another MRI before contemplating another bloodpatch)
For a week after the bloodpatch I had extreme pressure in the base of my neck and middle of my back and a very stiff neck. My headache seems better although still hurts when bending over but the pressure has moved from my head to my shoulder blades. I had a good day yesterday but not today.

Have written to my consultant and await response.
After reading this website it seems more common than first thought.

Lou Safonte's picture

Spinal Fluid Leakage

Did anyone expirience smelling issues related to this illness?
I sometimes find that I smell burning rubber, but no one around me can smell it?

Sandra's picture

OMG!! Yes I smell the

OMG!! Yes I smell the burning all the time. I run around like crazy making sure my house is not on fire. It makes you think you are crazy when everyone in the room is like NO we don't smell anything burning.

Lynne Agacy's picture

Not personally Lou, maybe

Not personally Lou, maybe your CSF is affecting your ear, nose and throat more. Hopefully it will start to improve as you get better. Good luck. Lynne x

Adrian - 34 - UK's picture

CFS leak?

Hi all,

I just wanted to tell you my situation in case anyone has any comments / advice.

Just over 3 weeks I got a mild headache, I didn't take any medication and even exercised when I got home, lifting weights. During my "shrugs" I felt a tear which felt like it was behind my left shoulder. I went to bed and when I woke my headache was worse so I took a painkiller on arrival at work which didn't seem to help much.
The next day the headache was even worse and I felt sick when sitting or standing up. As soon as I got to the office I felt I had to lay down and found a disabled toilet I could lay down in. This was crazy so I went home where I vomitted and then went to bed.
The next morning I vomited many times and felt terrible when sitting or standing and went to see my Doctor.
He sent me to hospital for 24 hours when I had a CT scan (nothing found) and it was thought I may have viral meningitis. I was given some painkillers and because I felt fairly ok when lying down i was discharged, without doing a lumber puncture.

The next 10 days were hell however as I couldn't do anything but lay down which in turn gave me a sore back and neck. Everytime I tried to get up my head would feel worse and I would feel sick.

My doctor then gave me some anti-sickness tablets which stopped the nausea but the headaches remained and I felt constantly tired.

Eventually I managed to get an appointment with a neurologist who mentioned a cfs leak but because I now feel better (have a mild headache at the back of my head, and my chest hurts when I sneeze, and I've had the odd visual problem such as waking up to find my right eye blurred, which clears with a few blinks and some blurryness at the top of my left eye) he thought it was a migraine.

As well as the above sometime I get sproadic intense pains in various locations of my head only lasting about a second each time.

My sickness has now gone and I'm on no medication.

I have visited a Osteopath twice for my sore neck and back and the first time it seemed to help when he "cricked" my neck but the second time it seemed to make my headache a little worse. By reading the above on cfs leaks I don't think having my neck "cricked" may have been a good idea

I'm drinking lots of water taking vitamins and also drinking a soft sparkling drink containing some caffine (Lucozade). I think the rest has helped a lot. As well as the above symptoms my head now generally feels quite tender and fragile.

As I seem to be getting better I guess there is no point in having any more tests such as the MRI scan which has been mentioned many times above.

Does anyone have any advice? It's annoying when no Diagnisis can be easily found.

Also does anyone think it could be a cfs leak even though I'm starting to recover after 3 weeks?

I feel really sorry for anyone having this horrible thing as one of the main problems is no-one around you understanding, often thinking it's just "stress". It's also made me feel very anxious, especially at night when I have nothing else to think about except this thing.

One last question. My experience was that the headache started badly in the front of my head but after 10 days or so it seemed to move across the top of my head, to the back of my head, down my neck and now it's my chest that's sore when I cough. Has this happened to anyone?

All the Best

Christine's picture

Hey Adrian, It could very

Hey Adrian,
It could very well be a CSF leak. I noticed that when I coughed or sneezed the pain in my head would intensify. Just because the pain is going away doesn't mean it isn't. I had good days and bad days for years. I'd talk with your doctor about the possibility. Just by looking at and MRI film of your spine and checking the spinal pressure through a spinal tap they can tell. It's worth not having to deal with the pain anymore.
Hope this helps and you feel better.


Bindu's picture

Intracranial hypotension - thanks

Dear Jill and Elissa,

I was glad to read the positive stories and suggestions for what to do. I have had postural headaches since the end of July. They have now been diagnosed as being due to low CSF, but MRI has not confirmed the site of a leak. I am waiting for an epidural blood patch...... but am off to buy myself a neck cuff!

Thanks again - will make sure to post again if I improve.


rosie's picture

intercranial hypotension

Does anyone out there have any experience of trauma causing intracranial hypotension some weeks later? I got ill 4 weeks after hitting my head badly on a glass door and have been ill for months. Could that have caused it? I just want to know why! Like many of you I was misdiagnosed as suffering from migraines and paid for a scan myself in the end.


Kim's picture

WOW and I thought I was all alone

I have had 3 blood patches in the last year non of them helped at all.....I suffer from CSF leaks...As I sit here reading these posts I can not tell you that its good to know that I am not alone in my misery...I am gong to see a surfeon in a couple weeks they dont know what else to do with me..I wish you all the best of luck....

Anonymous's picture

Spontanious csf leaks

Diagnosed at Mayo with multipule csf leaks in the dura. My Husband had headaches for years and was told it was everything from tension to migrains.He would have good months then the headaches would come again. We now know it was what ever activity he was involved in that wpold lead to the next headache. the year 2006 was one long #4-5 on the pain scale headache. We again tried all the Doctors with no real answer. Then in Febuary when it hit a 10 and stayed there he had to be flight for life to the nearest big hospital there again it was missed diagnosed as a migrain but when he got even worse, I demanded a trip to Mayo he was sent flight for life to St marys, part of Mayo, and finally found a Dr.(DR Garza) who knew what was wrong and better what to do. We now have to go back for a second patch this fall but just knowing whatit is helps you not feel like your going nuts. I know it is mostly women ..he is a man...1 in 50,000 need to lay down for some help... Noah has to sit up. He is atypical. He can sleep about 3-4 hours before he wakes up with at least a #4 then he sleeps sitting up. I tease him he can't even get a rare headache normally.

LeakyLee's picture

2+ years of leaking CSF and not yet properly diagnosed or tested

I had revision discectomy surgery in May 2006. I knew that there was a risk of 'dural tear' but I anticipated that my surgeon would recognize and repair the puncture before closing me up. He didn't and I was sent home the following day believing that the surgery had been successful. A district nurse checked on me at home and changed my dressing, saying that there was no sign of 'leaking fluid' from the wound. All good I again thought until I awoke in the early hours with a pain from hell (is the only way I can describe it) raging in my head. Actually, I honestly believed that someone had hit me over the head and split my skull in two with an axe or ice-pick, and I can remember even putting my hands up to the top of my head and feeling for the blood. I had been treated very poorly during my hospital stay and thus refused my husband asking if I wanted him to call an ambulance so I could be transported there for treatment. My husband and I had also agreed by this stage that I had a 'dural tear' headache and since he had previously done quite a bit of (i.net) reading on this subject, and had read that lying flat was the best treatment, this is what I decided to do. I had a second similar episode and when the third hit me I pleaded to be transported by ambulance to hospital. I spent about 11 hours at the A & E. Very little was done for me. My notes are disgraceful and reflect that a doctor attended to me on a single occasion. I was also sent to an isolation area later in the day because this was apparently "hospital policy". There even less was done for me (out of sight out of mind). My husband collected my vomit, mopped up my urine (he says I was incontinent but nurses ignored him telling them this so he found and put 'nappies' on me) and wiped my forehead and face. He insists that I had some form of seizure, perhaps even a stroke as he says he saw my face dropping downwards on the left side. He also says that I stopped breathing on at least two occasions and that he shook and slapped me back to life. I remember very little about this episode but can recall feeling a sense of surrealness and detachment, as if vacuumed in a bubble, and cut off from the world and everything going on around me. My hearing was very affected and I felt as if I was under water but every sound seemed louder and amplified somehow. I therefore begged for silence whenever my husband tried to speak to me. Concentrating took determined effort and made me vomit. I seemed to lapse in and out of consciousness as I have only "islands" of memory. Disgusted by the lack of care and tired of fighting to try and get me seen to, my husband suggested that I would likely be more comfortable at home than in the isolation room (which was actually a pre-fabricated box at the end of the kids observation area of the A & E). I agreed, my husband told the nurse what we were going to do and why, and then I got up and left. I had no further head pain episodes and thought the 'dural tear' had healed. I then had to return to hospital for treatment to an inflamed hip bursa and whilst there I went to the toilet, strained hard because I was badly constipated (sorry about the personal detail), and when I arose the pain hit me once more. 2+ years on and I am still experiencing head pain after any form of stretching, straining, standing or walking for long periods (usually my limit is about 3 hours). Thankfully though the pain is far less intense than the initial episodes, however, I am a changed person as I have a very poor memory, I suffer from constant fatigue (sleep for an extraordinary number of hours but never feel refreshed), I have bad nightmares often that make me cry in my sleep sometimes, I sometimes feel that a feather is being brushed across and down my left cheek (the same side that my husband said he saw drooping), I get mood swings and anxiety or panics attacks, I get tearful whenever I speak about my head pain and/or hospital experiences, and I am withdrawn and don't want to speak much to my family members. Although a single doctor at the hospital later stuck his neck out (so to speak) and went against what his peers said (that I don't have a 'dural tear') by confirming a 'dural tear' in a written report to my GP, I have not been properly diagnosed or tested 2+ years on. It was also a real shock to read my hospital notes and see that it had been suggested I see a Psychiatrist if my condition did not improve. Such is the way we 'dural tear' cases are viewed and treated.

Maureen's picture

Self Diagnosed

After many years of tinnitus and other health problems, I have learned to use the internet to self diagnose. I hit the problem right on each time. Doctors don't usually like this, but I have helped more than one doctor to learn something new. Now this. Same thing as most - bad headache until I lay down. I mentioned I have had tinnitus most of my life and clear my ears often as they are always 'clogged.' I also began working out again after many years of other health problems finally resolving. I am wonderint if anyone has noticed an increase in the headaches from certain types of workouts? Also, I am being stretched out by a personal trainer and the two times I have had the headaches - noticed a pinching feeling in my lower back, followed within an hour by the headache. I am going to 'self cure' again. I stay still and on my back as much as possible, drinking plenty of water. I figure it is better than going through an insane number of doctors and expensive testing only to find out what I have I already know. These stories fit me to a tee, but I am concerned that this is the second time it has happened. Also very concerned about any tinntius worsening or hearing loss. I was told at the Cleveland Clinic, that it is most likely cochlear mennieres? Also, thinking the pressure in the ear could cause the leaks? Any thoughts on these 'self' diagnosis theories. I have learned my instincts are almost always correct. I would think, for those concerned about the tinnitus and hearing loss, that if the fluid levels are brought back to normal in the brain/spin areas, as well as the ear, that the ringing and dizziness and hearing loss would certainly improve. Hear is praying that more reserch is done so we can be less guinea pigs and more pro-active patients helping our doctors to help us.

Mary's picture

wanting to contact Elissa


I posted briefly what has happened to me after a spinal anesthesia. I am very much interested in knowing what kind remedies did the naturopath you saw thought would help mend your dura, and if possible if I can have he's info. I am willing to try anything until I can get these doctors to help me out here. Who knows maybe if I help myself in anyway I can my body will heal on its own before they decide to finally help me.

Mandy Of chch, N.Z's picture


I have had this on going problem SIH, stemming years, always diagnosed as severe migraine headaches, ON 1 Oct 07 i suffered a severe pain and on set migraine which got progressively worse over an hour, i went to hospital ER, where they pumped me full of migraine medication and fluids and anti vomit medication, i got worse, after being there for 30 hours, i was told to go back to my GP, i was worse when i left the hospital, i had to be wheeled out, when i walked in., as there was nothing more they could do for a typical headache.I told them that i felt like someone had bashed me with a 4x2 and the pressure i felt in my head. still the sent me out. It took me 4 days to be able to hold my head up long enough to be able to get to the car and handle the motion of movement with little sea sickness feeling. 5 weeks go by and i am finally able to get an MRI with the help of my GP< with out his help i would probably still be in huge severe pain, after i had the MRI, nothing after that for 3 weeks when i received a letter from the neurologist, who gave me a prescription for antidepressants, saying they do more than work on depression, as i was crying and he thought i was depressed. I was crying because he told me there was nothing more he could do, 1 month later, i am admitted to hospital for another MRI and bloodpatch, 3 months later i had a follow up MRI, which showed a slight improvement, that they are now leaving me for 9 months, AND the headaches i will just have to tolerate. This is not good enough. he is happy to leave me on antidepressants x4 and my GPs regular regime of pills i take, pain x2, headache x2, anti inflammatory x2, anti nausea x1,sleep x2. I have no faith in the medical institutions here in N.Z and i am seeking other medical professionals to take up the challenge of curing me.I am dealing with the head neurologist in Christchurch and don't know where to go next, as all second opinions go through his office. I have also made an official complaint to the health and disabilities commissioner's office. I feel like i am the only person in the world, getting a bum deal from our medical professionals. I feel there is no one out there who can help me, and that i am alone. One excuse we were given in the hospital was that the specialists were still reading and they would have some answers for me... Nothing.

Anonymous's picture


Hi! I to suffer from spontaneous CSF leaks. I have had 12 blood patches, 2 fibrin glue injections, 4 cyst repairs and laminectomies. I wanted you to know the name of the Dr. I have complete faith in...Dr. Wouter Schievink @ Cedar Sinai Hospital in Los Angeles. My last surgery out there was just 3 weeks ago, and I can honestly say I feel like MYSELF again. I have had this CSF history for 8 years now. But, with the suffering of this disorder, you always have the fear that it can reoccur at any time. I hope you will contact this wonderful physician---he is a God sent...remember Dr.'s treat, God Heals.

Anonymous's picture

csf leak

I am so thrilled to have found this site! I am a 50 year old female. About 15+ years ago I went in to my family doctor with a severe headache, neck pain, sensitivity to light. My eyes felt sunk in my head and I could only describe the pain as incredible pressure. I also had severe pain and pressure in the base of my spine. My family doctor told me he believed I had meningitis and they sent me home. That in and of itself seemed strange to me. I had had years of lower back pain and difficulty sitting but had broken my tail bone when I was 16 and assumed that was the cause. I had never went to the doctor and felt something must have healed wrong. About 12 years ago I was going on a girls weekend with friends from high school and was getting into my SUV and told my girlfriend I got an instant headache. It continued to get worse and worse as the weekend went on. When I got home I went to my family doctor and was told I had a migraine. I knew I didn't and someone suggested I see a back doctor. I did and he sent me over to the ER immediately as he suspected a subarachnoidal hemorrage. I had a CT scan and spinal tap. I told them that by sitting I could make the pain worse and that while on the golf cart and bouncing, I thought I was going to die or at least I wanted to. Nothing was found and I was sent home. Two days later I went to see the neurologist I saw in the ER and couldn't even stand in the lobby of his office. I told them if they didn't get me to a room I would have to lay on the floor of the lobby. After my neurologist saw me he ordered a bed and had me admitted to the hospital right away. A week worth of tests and finally an MRI which showed a sacral cyst/tumor. Was then referred to the U of M to a neurosurgeon who did a myelogram CT scan. He determined that there was a spinal leak due to the thinning dura wall where the cyst was. I had a blood patch and found immediate relief. Pressure was still there but I could walk again without having to lay down. My neurosurgeon at the U of M was the only doctor I had ever talked to who even knew anything about what I had. Shortly after I saw him he retired. I have had one other blood patch which helped. I still live with lower back pain at the base of my spine everyday and constant pressure in my neck and head. I too feel that sometimes my brain is trying to separate itself from whatever is holding it in my head and push it's way down my neck. At times my eyes feel as if they want to follow and just seem to sink back in my head. My lower back pain is always worse when the pressure headaches are worse. Nothing compares however to when I know I have a substantial leak which I have had 3 times.

My neurologist was unfamiliar with this situation but I was appreciative at his persistence and willingness to bring in other doctors to help find what was wrong.

Thanks to all of you for sharing your stories and allowing me to share mine. I am so sorry for your pain but am so thrilled that after all these years of feeling so isolated and misunderstood that there are people who understand how I feel. Thank you for sharing your stories!

Larry's picture

SIH Diagnosis

My severe head pain started late February 2008. At the time I had a sinus infection that my General Practioner (GP) treated with antibiotics. After antibiotic treatment my severe head pain remained but sinus infection went away. I was sent to ENT to see if I was a candidate for sinus surgery. ENT after several visits and CT scan of sinus said my head pain was likely not sinus related. I was sent to neurologist who performed a sleep study and said I had sleep apnea. I also was searching the internet for severe head pain and all web sites were about migrains, tension headaches etc. but no reference to SIH. This was all I could take because my head pain was severe and so bad on some days I had to miss work (I do a great deal of traveling by air). I insisted my GP do a spinal tap to see if I had a brain infection. He also ordered an MRI without contrast of my head and neck. All tests were negative. I then insisted my GP refer me to Mayo. I arrived at Mayo on June 4th and they did an MRI with contrast and found the problem (SIH). It only took 2 days. My brain was sinking in my skull and I had two areas of fluid accumulation on the top of my brain. Next Mayo ordered a meylogram (dye injected into spinal cord with CT scan) to find location of leak. They said once it is found, they could do a blood patch or use fibrin glue or surgery as last resort. Meylogram showed no leak in visible part of spinal cord but there was a suspicious area in the part of the spinal cord inside the brain. I met with a neurosurgeon at Mayo to review meylogram results and he said they cannot do a blood patch or surgery in that part of my spinal cord as risks outweigh gain. I go back to Mayo on July 28th for a cisternogram with pledgets. If the leak is indeed in the brain, Mayo will try a general blood patch (however they indicate it generally is not successful unless blood can be injected at the site of the leak) but it is worth a try. In the meantime I was ordered to seek bed rest for the next 6 weeks to see if it heals on its own. The last two days I have developed nausea, and numbness in my left arm and leg. The severe head pain, sore neck, sore eyes and loss of hearing remain even when lying down. My heart goes out to all of you currently suffering from SIH and for those who have suffered and recovered. It finally felt good to get a diagnosis but I am still searching for my own recovery and I hope it comes soon as I cannot continue to live this way. Has anyone been given medication for pain and nausea that has worked? My pain killers are ineffictive.

Anonymous's picture

Please update me on your

Please update me on your condiion. My condition is similar to yours.

PML 's picture

CSF Leak

My husband has a similar situation as you, but still no diagnoises. Started with headaches, then dizzyness, then to the hospital and within a 3 week period it got worse and worse. He had MRI, CT, Spinal MRI, Then meylogram dye injected, he got worse. So they did a Blood Patch at site of Meylogram puncture. The blood patch worked for 2 hours. Then back to terrible pain He went back to the hospital stayed a week another MRI of the brain, then an MRI of the neck. They found no leak. Then they did a nuclear test. Nothing. He is in so much pain, especially in his ears, neck, and just started with the eyes. We are finding the Doctors do not know what to do with him. The Blood Patch doctor said you have to wait 3 to 4 weeks between blood patches?? Did you have this experience? Do you know if this problem requires long term bedrest. The doctors told my husband to go home too, it might heal on its own, but how long??? My husband is going crazy.. Do we seek another doctor and if so, a neurosurgeon or a neurologist. Not sure what to do and will he get worse by doing nothing? Sorry for all those in pain, it seems like the worst ever. Just looking for some answers, doctors. we are in California. When my husband was in the hospital they did have a medication for nausea. not sure of the name.

Bob's picture


Larry, I am at month 18 with the condition. One thing that has worked for me was a bilateral Cryofreeze of the Optical Nerves. It cut back the severity and number of headaches I have. The Mayo sounds great...at first do no harm. A couple of the tests you have had I am unfamiliar with, I may have to try them out. I have a thickening of the dura matter in my brain, no leak has been found after 5 MRIs with contrast. Neck is an issue too, I now wear a soft cervical collar about 4-5 hours a day. I also go to a Chiropractor. Some memory issues and cognitive issues, but no leg or arm pain. Have not exercised in those 18 months.

Anonymous's picture

Spontaneous CSF Leak

I have a Spontaneous csf leak that started in march of 08. I woke with what i thought was a runny nose,but have since found out that it is a csf leak coming out my nose.I didnt have what you call a bad head ache untill they started tests to find were in my head the leak was coming from now i have head aches,havent got answers yet hope to on monday. Has any one else started with a csf leak this way?

Sandra's picture

Hey, I was reading over your


I was reading over your comment. I had a spontaneous CSF leak back in 2006 that came from my nose (left side). As of last week I noticed the same drip as before sure enough I have another leak from the right side of my nose. The last time I had surgery for this I have not been given an answer as to why this keeps happening. Have you had a repair for your CSF leak. I don't know if I want to have the surgery again. This is really strange hope you have success in getting help.

Susan's picture

Recurring CSF Leak

Sandra, I had three craniotomies and one transphenoidal between April and May 2008 for a spontaneous CSF Leak. When I was finally discharged from the hospital after one month I was out of work for 13 weeks and basically allowed to do nothing. When I returned to work it was for PT only. Eventually I made it back to FT but kept having excrutiating headaches not relieved by anything. Long story short they finally figured out I had intracranial hypertension which caused the leak and they placed a shunt in Novemeber 2008. Headaches are getting better but two days ago I started leaking some clear fluid from the left nostril. That is where my previous leak was. It is not constant like it was before but a couple of times a day for the last two days. It scares me to think that I could be repeating this nightmare. I, like you, would love to hear from anyone who may have experienced it happening again after surgery.

Anonymous's picture


This occured to me in 2002 at age 45. I woke up one morning with a very severe headache and what seemed a very sore neck. The Dr assumed it was a muscular strain in the neck and had me do neck excercises which only made things worse.

I tried to work but after a week of severe pain I developed double vision and ended up in the hospital where I had a CAT scan which revealed nothing. My wife insisted that I go see my opthomologist who referred me to a nuero-opthomologist. He immediately diagnoised the problem and after MRI w/ contrast was able to confirm the leak. Six weeks of bed rest and I returned to work. After a few months the double vision went away and I was good as new.

I see many of you have had far worse experiences than I and I feel extremely lucky to have had it diagnosed in 2 weeks time as opposed to some of the above ordeals. Best of luck to all.

Bill's picture

Working on a 3rd patch

My wife went in for surgery on her back. Long story short, she is on her 3 CFS leak. The last was only a week ago and she woke up the next morning after her 2nd patch with another leak. Her nourosurgeon has never even tried a blood patch. Is it something I should bring up to her doctor or is his feeble attempts to derm patch fixes the only option? Pls respond soon. TY and best reguards to all of you suffering from this and similar situations. God bless you all and thanks once again.

Mary's picture

Re: Working on a 3rd patch

you'll find very helpful information on http:brain.hastypastry.net/forums/showthread.php?t=34819

I hope your wife's situation will resolve soon.


Gary's picture

Spontaneous CSF Leak

3 weeks ago today, my wife was taking a shower and had an instantaneous, extreme headache come on. She is a tough one and continued with her regular schedule for the next 3 or 4 days. The headache was classic for this condition we are discussing...goes away when spending time horizontal (sleeping, etc) and would return with varying severeness once she got up and about. As with most others on this thread, she had no previous history of headaches other than a periodic one that could be knocked down with some OTC meds.
On the 4th day of the headache I had her go to the Doc. He checked her out and sent her to the ER for a CT and to check for menengitis (sp?). Both were negative and we went through the next weekend praying for some relief. After a couple more days, we went back to the GP who sent her down for an MRI of the head and neck area...nothing. The GP then got her set up with a neurologist the next day (Can you believe it?) The neuro immediately diagnosed her with the low CSF condition and ordered another MRI and put her on strict bedrest. 3 days bedrest and no headaches, the doc told her to try a "normal" day...headache returned.
They scheduled her for a "broad area" Epidural Blood Patch 3 days ago...the headaches seem to be gone although she has suffered EXTREME back pain since--it now seems to be subsiding.
Many of the stories have made me quite sad to read...it seems the docs are only now really getting a good handle on diagnosing and treating this condition. We have been truely blessed to have had to deal with this for "only" 3 weeks.
Our best to all...

Sophie's picture

Hi Gary, I had my blood

Hi Gary,

I had my blood patch done in January 2008. The doctors (neurologist & anesthesiologist) said I would be back on my feet within 48 hours. Well, the tenderness and rigidity in the back lasted a month- car rides were difficult as every jolt would jar me. Even though an April 2008 MRI declared me as "resolved" I still continue to have the neck pains, movement headaches (i.e. every time I got out of a car or bent down it would take a few seconds to stabilize) and severe headaches still.

My doctor doesn't know what to do with me as I am his first case.

Is your wife better now. I am learning to live with the new normal but am still figuring it out.

Anonymous's picture

I too suffer from head pressure

How's your wife doing? I too suffer from head pressure and soon will be seeing a neurologist. Is she headache free? Where there any consequences?
I pray to God your wife and I soon find relief.

Derick's picture

Headache in the back of my head

Yeah i have been sick the last couple of days, and i was in the bathroom vomiting and all of a sudden i had a really sharp pain in the back of my head, like somting bursted in the back of my head. I dont know what the problem was. I ended up trying to sleep it off. I woke up and it only hurt a little bit. I can still feel it right now. I was wondering if anyone knows what the could of been, And to see if i am safe. Thank you

Denise's picture

Spontaneous CSF Leak

I was in Iraq in 2006 when I woke up to most unimaginable headache. I thought I got shot in the head. After a week in a combat support hospital, a CT scan and spinal tap, I was shipped to Germany. MRI in Germany, but still no diagnosis. The pain upon standing was still severe and vomiting. Then I was shipped to WOMACK Army Hosptial and more MRIs. After weeks of hospitalization and not being able to stand or bearly sit up I begged to go to a civilian hosptial. After only 20 hours in UNC I was diagnosed with a CSF Leak and given a blood patch. Not sure if it was the patch or 40 days in bed, but it gradually subsided enough for me to leave the hospital.
Two years later I still have headaches but nothing like the intial onset of the CSF Leak. Neuro doctors are trying some meds but no relief yet.

Sophie's picture

spontaneous CSF leak

I was diagnosed with having a spontaneous CSF leak and received an epidural blood patch in January, 2008. I suffered from excruciating headaches and nausea for 2 months prior to being properly diagnosed. I did not previously have a lumbar puncture or trauma (except for car accident 14 years ago) which lead to the leak. MRI's determined there was a leak but could not determine the location of the leak.

I continue to be plagued by headaches (exertional - i.e. bending down, getting out of a car, as well as severe headaches) which lead me to investigate further on the internet. My last bad headache was just last week, a doosy lasting 6 days - I almost ended back in the hospital due to the intensity of the pain. Tylenol #3 helped take the edge off. I am learning to live with the "new normal" - my memory and stamina is not what it used to be.

I am my neurologist's first case of spontaneous CSF leak and he had declared my case resolved due to my latest MRI in April, 2008, although I am not 100% back on my feet, I am functioning and back at work full-time. I don't think my doctor knows what else to do with me.

I had enquired whether I could be part of a study group, to which my doctor answered negatively, saying there wasn't enough patients like me. I wonder if I could be of any interest if you are aware of any study groups so that perhaps my case may help others, and vice versa.


Sandi's picture

I too have had a csf leak

I too have had a csf leak which occured after I hit my head in January this year. It took over 3 weeks to diagnose they initially said I had whiplash. When I finally got an mri I had no csf around my brain, and major pooling outside the spinal column. 3 blood patches later and after my last MRI in may I too have had my neurosurgeon declare me resolved. The problem is I am not 100% and am back at work although on a graded program. I kept being told time would cure it and hopefully it will but after 7 months it becomes a little frustrating. There has only been 5 or 6 diagnosed people like me in Brisbane so I guess it is rare but the 2 neurosurgeons I saw didn't mention any research that was currently being done into the ongoing symptomology. Ihave a residual headache and get very tired quite easily, my memory has been effected but is improving and my hearing was originally effected but seems to have resolved. Sites like this one actually help you realise that you are not alone, which is very different to how it feels most of the time.

Kellisha's picture

Our csf

I am a 41 year old lady who has been out of the hospital now for under a week.Unable to sit up or stand up I was initially misdiagnosed with spinal menningittis! I have been in the hospital for over a month!! They finally realized I had a huge tear im my thoratic region wich is in my neck!!I had no spinal fluid in my brain or spinal cord!! I have had 4 blood patches in the past month and I am now able to sit and stand...but I am so scared!! I have been getting headaches everyday which appears treatable as long as I live off migrane pills..at least I can function..my vision appears to have been affected and I am easily drained!I am a single mom and wonder when I can go back to work as as a CNA. I have been a ballroom dancer all of my life..Is this over for me?Doctors here know zero about this condition.How long does the real healing process take and under what limitations??I just miss being me..Please share with me what your doctors might have shared with you.

weezie's picture

"your pituitary tumor is not causing your headaches"

In Dec 2007, I started with a bad chest cold and sporadic tiredness. Family GP threw meds at me and after the prozac and xanax treatment, i switched to Internal Med. 2 days before the appt with my new doc, I felt an explosion in the back of my neck. about that time, I had a VERY sore neck and then the postural headaches started. she checked me out and ordered a CT, which found a pituitary tumor. Then I went for an MRI to size-up the tumor (10-12mm). Labs were run and the mass "was not affecting me chemically." i have seen an endocrinologist, a neuro-opthomologist and 3 neuro surgeons. luckily the 3rd neuro surgeon figured out that I must have a CSF leak. He ordered a brain MRI (lying down) and a lumbar puncture (opening pressure 16 - should be between 12 and 20?). I am trying a neurologist and just had a cisternogram (over 3 days), which showed nothing, even though I cried when I had to sit up for hours before the scan, to aggrevate the leak. The neurologist has put me on prednisone, amitriptyline and celebrex. he encourages bed rest and well, he's just not sure. i am 35 with a 5 and 7 year old. i have been home from work 3-1/2 months now. is the leak related to the tumor? will this heal by itself? will it happen again??

Paula's picture

Intracranial Hypotension

In March of 2007 I had a hip replacement at a very well known hospital
in Illinois. I am a nurse in a family practice office in Indiana so I
felt very fortunate that my insurance would cover my surgery at this
facility. Three days afyer the surgery, which went very well I developed
this horrible pain in my head at about 11 on a 1/10/scale. I was discharged
and ended up hospitalized locally in Indiana. I had two blood patches with
no relief so my doctor felt I should see a neurologist. He ordered several
tests and they discovered a small aneurysm in my head on a MRA scan. I was
again referred to another hospital in Illinois. That was in May of 2007 and
my life has been a nightmare ever since the hip surgery. I spent all spring
& summer having angiograms,cat scans, mylegrams and being bounced from one
Dr. to another with no answers. Some of the Dr's felt it was the aneurysm
and some did not. After trying numerous meds with no relief it is now 15 months
later and I have not had a day without pain. I had just about given up when my
boss who is also my family Dr. suggested I see another neurosurgeon locally.
I did not want to see any more Dr's especially since some of the Dr's I have
seen made me feel like I was crazy. I am not critizing the Dr's in Chicago
but it is so ironic that a local Dr. seems to figured out the problem. I hope.
He is sending me to a neurosurgeon at Mayo's. He said immediately that he felt
it was intracranial hypotension caused by my epidural. I am so tired of being
in constant pain, this has totally changed my life. I cannot do any of the
things I used to do and work is becoming more & more difficult. Until he told
me about this condition I didnt know there are other people suffering with this.
I am praying this trip to Mayo's will solve my problem.


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