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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.....

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 intense pulling 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


Mary Smith's picture

Laminectomy and CSF Leaks

January3, 2017,went in hospital for laminectomy of L3-4, and bone removal at L5. Surgery was a success, left hospital the next day no problems. Around the 12th started getting severe headaches, did not put back surgery and headaches together. Til I couldn't stand the pain and nausea contacted doctor, ordered an immediate MRI with blood work, met with him for results CSF leak. Went in for repair next day he placed one stitch and closed me, kept me still for two days then started lifting bed one hour at a time, started getting headaches. Assistant came in room, knowing I am under medication, my sister at my side and said we are going back in on Sunday to repair top and bottom still leaking and we will use glue. three surgeries in 26 days, there anesthesias. I was suppose to have a 2 inch incision laparoscopic turned into 5 1/2 inches and 22 staples. After the third surgery immediate pressure in my head, as I lay down my head is swimming, I can actually feel fluid moving in my head after March 20th I was sent for a second opinion. his advise was give it time i have been through a lot. My major question was how much spinal fluid can the human body afford to lose. I understand it is constantly replacing itself but if you leaked for10 days wouldn't that be a lot of fluid. My last three MRI's show a pocket of fluid can't rule out spinal fluid but no one seems to be worried accept me. Now I am being told to give it a year, at times the pressure in my head at the end of a day is too much for me to handle. Total exhaustion, I walk 3/4 mile each morning, the back pain is about the same level it was before surgery. Was given sleeping pills because i could not sleep. What is happening to mr. Friends are recommending The Mayo Clinic. the answers I get here are I am suffering from complications from surgery, not back surgery, CSF leak surgeries. I should feel better in about a year. Any recommendations

Serendip Visitor's picture

CSF Leak Resources

I recommend learning as much as you can about CSF leaks because they are so rare and so few specialists are available. Try to find a real expert and ask about their experience level. The most published expert seems to be Dr. Schievink at Cedars-Sinai Medical Center in LA. .

Read his Q&A here

I don't know specifics but you may find experienced doctors at John Hopkins, Duke, Cleveland Clinic, Mayo Clinic. I have not had treatment so cannot make a recommendation.

CSF leaks are associated with connective tissue disorders, which effect the strength of the dura. They can sometimes heal on their own -- bed rest or very low activity - do not strain, caffeine may reduce the pain and increase the fluid to help offset the Intracranial Hypotension... I wouldn't take any diuretics. If your head hurts lie down. Eat whole foods, drink lots of water. This may take 4-6 weeks. There is no quick fix, even after a patch or surgery you must rest. Trust your body.

If the headache lessens or goes away when you lie down, it is likely due to a CSF leak. At the very least try to get a diagnosis. Refer friends and family to online documentation so they can support you.

eg. Look at the document titled "Upright Headache" I gave some online documentation to my doctor and she was grateful (young and willing to learn)

Tests don't always show if there is a leak or where it is. Sometimes invasive tests can cause more problems. Again, I encourage you to learn as much as you can. An experienced / advanced Cranio-sacral Therapist may help to balance the fluid and alleviate the pressure.

Have Faith - This too shall pass. Hopefully sooner rather than later.

Gary's picture

CSF Leak?

I've just been reading this first page about other people's problems and I think this is what is going on with me also.
I have clear fluid that runs out my right nostril when I'm leaning forward usually or go outside where the air is colder.
I have had this going on for a long time now and can't find any help.
I saw one reviewer mention the name of Dr Tredway here in WA State and I have met him once but was denied in surgery for my spine by the Dept of L&I but I've seen his work on a friend and he is a great man, but then left UW and went to practice with Richard Wohens, a real Ah*** if you ask me and I watch Dr Tredway go down hill,
Anyhow, I don't know what to do, I am at St Joes for my primary care provider with my medicare plan and for 10 yrs now they have not helped me with one issue and now this leak stuff and the fact I've now lost most of my hearing since 2009 when I first tried to get help I've got nothing except a ENT last year who claimed he knew what was wrong with my a Dr Sorensen, well he's quit the idiot and left me worse than I was.
I can tell you this, when things are so bad that you start thinking about hanging it up for good well then I just don't know anything except we have a serious health care problem in this country, regardless of what they say about being the best, I am now recluse and just suffer everyday and all I have going for me is 2 cats, if it weren't for them I'd probably be dead.
I am so tired of everything, there just seems to be no hope here in Tacoma WA, St Josephs hospital is not so great but I do have to admit that after one of their so called specialist or ENT butchered up my sinuses last March 2016 in what he said was just a simple day surgery, well I ended up having to go to the ER at St Joes after his surgery to spend the rest of the day and night and I guess they saved me from bleeding out and suffocating on my own darn blood, so I give them their credit but it was sort of one of those obvious type situations like maybe having a bone sticking out of your head, but if you have something like completely clear fluid running out of your one nostril or after a surgery where the idiot put tubes in my ears and I was able to blow some goop out of my right ear through his tiny tube and after telling them since 2009 that I felt as if I had something in my ear, then take pics of it and show it to that ENT and STILL Nothing,
I am just going insane with this stuff, what does it take?
Hopeless, good luck friends, I know what your saying for sure..

Pam's picture

CSI leak

4 brain surgeries and nine months of hospital stays .... Spontaneous CSf leak. Repaired successfully at UCLA after other hospitals gave up. Dr V. Lee. Head and neck surgeon.

Gary's picture


Dear Pam

I didn't know if anyone followed this thread anymore and forgot I even signed up here and then I got an email this morning telling of your victory and I just wanted to say how happy I am for you,
This is just a guess but I think you have just been blessed, or at the very least, you know a very good doctor who actually cares.

I still have fluid coming out the right nostril and fills like fluid in my right ear and I am fairly deaf now.
No doctors seem to take this seriously and I've had one surgery for something that I don't even know what they did because I can barely hear. The doctors I see just run in the room and blah blah and back out the room, they can't go over the 15 min. only rule I guess.
All the clown doctors surgery did was make matters worse and me completely broke...
Oh well, I keep on trying and someday I hope to have your same blessings.

I am so sincerely happy for you, no doubt you have been through hell with 4 surgeries and extended stay, those surgeries don't happen back to back, so you have been at this for a long time, not forgetting how long it must have taken just for someone to have accurately diagnosed what was wrong with you in the first place.

Well God Bless and best wishes for you, it is really is great to hear of someone who came out the other end standing UP...!!



Tamara N. Wilson's picture


I occasionally see new emails to this is too difficult to respond or help others at this site because it does not have any order to the dates posted. So the most recent is nearly impossible to find through years of posts. The most recent active sites for answers is to search Groups in Facebook. There is an Intracranial Research Foundation page on Google as research, but hasn't been active for a while. With cranial leaks, it's back to Facebook..good luck!

5 years suffering's picture

13yo intracranial hypotension/POTS/EDS/Chiari

My son is nonfunctional. He is 13 yo & is approx 5 months post his 2nd Chiari decompression surgery. He first got sick when he was 8yo. He suffers with a headache 24/7,neck pain, tinnitus, extreme sensitivity to sound & stands up & his legs mottle & he gets burning pain. He hasn't been able to go to school due to symptoms & has recently had ct myelogram indicating intracranial hypotension. The neurosurgeon said his spine looked good on myelogram & is 99.9% sure he doesn't have a leak. Unfortunately the decompression did not relieve his headache. He now gets twitching in his face on/off which is very troubling to him.

The NS thinks my son is not producing enough CSF. His opening pressure was 1 & prior to his recent surgery it was close to zero.
The NS wants to possibly treat with Midodrine & salt tablets. My concerns are possible electrolyte imbalance or developing hypertension if we do this? He said his sympathetic tone is low & we have to try to find way to increase the tone. He is consulting with his team for a plan.
Has anyone been thru similar or have any knowledge on this? I am so scared for my son. He is only 13 & has been thru so much. Remarkably he has no neuro deficits from this condition. I just want to get him well & functional. Thanks in advance for any suggestions or help. My heart goes out to everyone suffering from this condition.

Serendip Visitor's picture

My son is 14 years old and he might have SIH as well

My son has been have a positional headache since August, 2016. I check online a lot. I think you might need to get a second opinion
in case misdiagonosis if you have a good insurance. You can check online to find good clinic for this disease. My son quitted the school because attending school made his symptom more serious and the doctor still suggests him to go to school. If it is SIH or Fluid leak, the patient needs a lot of bedrest . My son is still non-functional, but he looks normal and he just couldn't use his brain to think, sensitive to sound and light. I think my son's situation is a little better than yours. We are still waiting for doing blind blood patch.
Best wishes!


Serendip Visitor's picture

SIH-- Maybe not??

Hi. Since my last post a lot has happened. We went to Duke in NC for an evaluation. My son has been misdiagnosed. He actually has intracranial hypertension. The 1st 2 lp readings we believe were wrong. His opening pressure is high at 25.8.. it's all very complicated. If you know for sure-100% your boy has a leak I would try a blind bloodpatch. If there is doubt I wouldn't do it... He will get worse.. The symptoms of both conditions can mimic each other. I would make sure the lp was done under fluoroscopy so you know for sure the needle was put in the correct seems hard to believe but told by Duke that many NS do not how to get accurate reading which can lead to misdiagnosis of low & pressure may actually be high.
I wish you the best! I know how very difficult it is to have a sick child. We are trying different combo of meds to treat my son's condition. It continues to be difficult & a daily struggle. He has now been diagnosed with occipital neuralgia which is result of his surgeries. It's all very difficult. We just have to maintain hope & pray that as they grow their bodies can correct & overcome some of this. We have an IEP meeting at the school tomorrow & need to come up with a good plan to attempt to get our son an education. Like you said, hard to function & concentrate if brain not working right.
Take care.

Robbie555's picture

CSF help site on FB This will be very helpfull for you to join

Robbie555's picture

Spinal complications

Hello sufferer.
I had an epidural of kenalog to treat herniated disk in 2011 and have had a few of the same symptoms- tinnitus,episodes of high sensitivity to sound,many sensations in head,face pain and twitching to name just a few. There seems to be little working medical help exsisting for these things among other battles like just having some sort of accurate diagnosis . Please google and read the advice and story's given at this website-- kenalogneveragain - it could contain useful info and other links for research and help. I'm so sorry your son is suffering and pray he finds relief and normality.

Cheryl Mohat's picture

Spnatnious cerebral leak

Hi - I woke up on June 11 2016 with severe headache. I am 56 yrs old and have suffered with migraines all my life - but this one was different. When I laid down the pain subsided quite a bit.

After 5 weeks of being pumped up with pain killers and no relief mergency room doctor finally said she wanted to know what was going on. She refferred me to a neurologist. He knew right way what my problem was - I cried with the diagnosis.

I am here in Canada and so I think the doctors see this problem even less than in the USA...becaue of our smaller population.

I have had 4 blood pathes done with no relief. The issue is that they don't know exactly where the leak is .
I went yesterday ( at Royal Jubilee in Victoria) and had more imaging done.

It was DIGITAL SUBTRACTION MYLEGRAPHY. From this imaging they finally have found the leaks - or tears and I am not sure what the next step is...another blood patch ( #5) or surgery?

It has been along journey and I amhoping to finally get relief! Cheryl M. from Canada

Geert Margodt's picture

I live in Belgium and had to

I live in Belgium and had to wait for 8 months until I got my diagnosis. Today is exactly 1 year since I became a leaker. I'll get my scans (to determine the location of the leak) half May.

I'm keeping my fingers crossed for you.

Greetings from Belgium :)

tina's picture


That's something, glad you finally got help

Geert Margodt's picture

I got my scans last week and

I got my scans last week and they didn't find the leak. I'm going back to the hospital in 2 weeks

terry gray's picture

cerebral leak

my wife Susan suffered from a cerebral at the leak at the skull base its very hard for me to write about this i am not very clever especially with writing or explanation its very complex and my spelling is not that good so i hope you will bare with me i will not finish tonight but will endeavour to write up what happened to MY Wife Susan ;During the late 1980s Susan was very ill with deliberating headaches neck pains unfortunately this was not diagnosed properly she consulted with our doctor but who was completely ignorant as are many doctors he gave Susan neck brace but this was useless Susan was still very ill and he suggested that Susan should an optician Susan went to the optician he found a bulge in her eye he sent Susan back to doctors who sent Susan to hospital they kept Susan in overnight transferring Susan to the Shooters Hill hospital were she she remained for several weeks we or Susan was not told what was wrong with her only she had cranial hypertension to the both of us that meant nothing we were not told what was wrong with Susan. Susan was not told any thing nor was i remember a doctor being very rude to me and never explained what was wrong with Susan ,we knew that Susan had cranial hypertension but it meant nothing to us unless you are conversant with it you are completely in the dark ,i thought tension was pressure not loss of pressure through a leak this was in 1989 it went on till 2005 sorry not to finish but its very complex the out come is worth following Terry Gray,

Serendip Visitor's picture

Post on 2/14/2015

Someone just posted to this, but the site doesn't connect to that post. I can't find it in pages and pages of posts. I want to respond. Where are you?

Serendip Visitor's picture

Cognitive issues

Have anyone experienced cognitive issues after a long term spinal fluid leak with brain sag even after the leak has been resolved?

gonfin's picture

Cognitive issues

I am currently experiencing cognitive issues following a diagnosed CSF leak. It all started 2 months ago.
I have gone through headaches (gone after 10 days), diplopia (gone right now), pressure in the head (still there).
I have not been treated yet, and I feel my mind is slower that it used to, it takes more time to process all information.

I am scared about this and considering a blood patch to resolve the situation although my neurologist recommends bed rest (wait and see approach).

Is there any insight on recovery from these cognitive issues after succesful patching? How long does it take?

Tracy's picture

cognitive issues

I had a blood patch done last month and now I am experiencing cognitive issues too. I don't have the spinal headache but, I do have the muscle spasms, ringing in the ear, facial pain, and sinus pressure. How are you and are you well? Praying for a full recovery.

tina's picture

cognitive issues

Hi Tracy,never had a patch,but started drinking coffee with cinnamon in it helps my pressure in the back of my head.god bless

Tracy's picture

cognitive issues

I am also having cognitive issues from a fail blood patch. Did you ever find out why? I hope you are well.

Serendip Visitor's picture

Sorry am so late getting back to you

My name is Marie Ann, sometimes I posted simply as Ann, or as Marie, or as guest.
I was asked if I was ever treated successfully for a spontaneous dura defect.
The answer is no.

Dr. S. was supposed to get back to me but never did. I live abroad and I had mailed my diagnostics and reports to him for consultation. No response. He did call me, but when I broke down into tears, that was it!

I had two failed surgeries, repair attempts using the overlay technique by an otolarynologist (sp??). My hospital will not do the inter-disciplinary surgery. It is either the specialist ENT or the neurosurgeon. So after failed surgeries twice I opted for cutting my losses right now and to continue living, albeit no longer able to work, etc., the best I can. I will be 57 this year and the entire matter has been going on since the year 2001.

It's sad but true. There is not healing for everyone. Unfortunately.

Kind regards,
Marie Ann

Das 's picture

Post blood patch

I had a hip replaced in July & developed a leak after a couple days , went back to hospital & same anistiaoligst that did surgery came to do blood patch . The problem is he never read my chart to see I was given heprin before he did it . I am now on week 7 and am still having some issues, ear& neck pain along with my hands shaking randomly. I see ENT & neurosurgeon. next week . I hope someone can fix me. , as I feel alone .I have had CT &MRI done that show nothing is wrong , but my body says different!

Serendip Visitor's picture


I sure hope you bring action against this person who caused this. There is a statute of limitations so check on it.

Serendip Visitor's picture

csf leak

hi im 28 years old being suffering with csf leak for over 4 years now I keep going blind and having visual disturbances followed by extreme shooting pains from the front of my head and shooting to the centre of my back, I go very weak and sometimes slur my speech and also get ringing in my ears and balance problems ive been to a+e and gp and they both said that I had nothing wrong with my eyes and that its just a migraine, asked to be refurd for a scan and hospital said docs have to refer me and docs said that its over a year waiting time just to see a neurologist and that he wont send me for a scan as they cost too much money and its just a migraine. I cant even walk properly most of the time im on atenolol and migraine tablets but they just seem to be increasing the problem and started getting problems with my heart since starting atenolol over 2 years ago. I cant even play with my kids properly anymore or take them on rides or anything I lost my job due to this and the doctors as they just put it down to migraine so no one believes me when I go blind and start collapsing and stuff. I just wish I could just get this problem sorted and just carry on with life so I can make a proper future for my kids and my partner and not feel so useless and pathetic.

Serendip Visitor's picture

So sorry to hear your story!

So sorry to hear your story! Awful but so many are in same situation! Please check the link here ....

Also face book if you type on search CSF leak you will find closed groups where you can get peer support and maybe advice what would be good hospital to visit.

Don't give up! X

Serendip Visitor's picture

Spontaneous intracranial hypotension headache

Hi there,
I found your website and after reading others experiences I thought I should add my own. I am a 45 yr old female and I live in N.Ireland but the condition is as uncommon here so I imagine I've been lucky in my treatment so far. Initially I felt that my sinuses were running and becoming infected for two or three days prior to developing my first headache. It was an occipital headache that felt like a steadily increasing pressure. My head felt as if it was too heavy for my neck to support and I developed neck stiffness. However, almost as soon as I lay down the pressure and neck stiffness subsided. Every time I sat or stood up the pressure headache return so I stayed in bed. The following morning the headache was worse than the previous day and I vomited, my GP sent me to hospital were a CT scan was done to rule out a subarachnoid bleed. It was clear. I was admitted for a Lumbar Puncture were it took 5 insertions of the needle in 2 separate intervertebral spaces before csf was found. The pressure was a little low but all other findings were normal. Next day I was discharged with diagnosis of atypical migraine.
The pressure headache return three days later and was identical to the pre-lumbar puncture headache. Back to hospital and this time a neuro consult was sought. Preliminary diagnosis was low pressure headache. Treatment was 48 hrs strict bed rest, IV fluids and caffeine. However, medical consultant came round 24hrs later and disagreed with diagnosis, stopped treatment and reverted back to diagnosis of migraine, treatment with paracetamol(acetaminophen) and anti inflammatories. Discharged myself and went to a different hospital that had neurology and was once again admitted for low pressure headaches. Bed rest, IV fluids and caffeine until MRI confirmed a decreased level of csf around brain. MRI was done with and with out contrast. I have been allowed home for bed rest and high intake of oral fluids and caffeine. Time scale is now 14 days post spontaneous headache and 13 days post LP. If not improvement in another 7 days they will consider a blood patch. Initial headache had no obvious cause of leak. No head or spinal trauma. I hope this helpsypur forum and I will update you as I improve or have further treatment. :-)

Rodney's picture

Csf leak

I have been one of the lucky ones to have csf leak not once but twice now. The first one came in 2011 when I noticed a strange feeling in my nasal cavity. I began to get dizzy and I sneezed causing enormous pressure in my head. After hours of tests and hours of excruciating pain they discovered I had a spontaneous csf leak and surgically repaired it by cutting off my face and patching the hole. When I woke up from my very long evasive surgery I had no more pain. Immediately I was relieved that the pain was finally gone. I lived pain free all the way through until now. Just last week I noticed that same feeling again and went into panick mode. Sure enough, I went to my neurologist and there is another spontaneous csf leak. The tests have been ran and now I wait for the doctor to come up with a plan to fix it. Most likely they will be cutting off my face again and repairing the damage. Once again this all started after I sneezed. I'm scared to death and my wife thinks it's no big deal. The pain is so unbearable that I can only lay flat for it to subside. I'm glad I'm not the only one who's had this, but how many of you out there have had it more than once like me???

Serendip Visitor's picture


I've got a couple questions about a year ago I started developing these symptoms extreme migranes,nausea,vomiting,body aches. I thought it was bc my wisdom teeth were coming in. I started having pain so bad I was grinding my teeth all night and day,and still currently having the same problem. It also caused my ears to start leaking,I've been to 2 after cares,3 E.R.'s,and 2 dentist. Bc I'm thinking this is t.m.j. I also developed and infection running a fever and back pain so I went to an after care crying and in pain he ordered me to go to the e.r. And have a spinal tab to test for meningitis so I went and they denied it I started screaming crying and begged the nurses/ docters to do it(bc I knew/ know there's something wrong). They denied it and diagnosed me with migranes and referred me to and e.n.t. By the time I got to the e.n.t. The next day my lympnodes were swollen up like a golf ball under my right ear. They said it was an infection but he didn't know what kind and for me to come back I told the Ent all my symptoms and since I could hardly open my mouth that day he said it was def. Tmj and referred me to a dentist so I went. All night I was throwing up running a fever with a migrane and body aches. So by the time I got there that afternoon the my episode was over. And he said I didn't have tmj,so I just cried and cried! But he offered me a night guard my question is in my head why would you offer me a night guard if I didn't have tmj. So anyways I went to Walmart and bought me one. And a couple years later my symptoms have gotten worse and my ears constantly leak while I'm laying down sleeping while I'm awake I'm in constant extreme pain with my head sometimes the slightest pressure it causes extreme pain! I don't know what to do where to turn too. All I do is sleep so I want be in pain! I don't know what to do anymore I can't work I feel so sick

Serendip Visitor's picture


Hi. Sorry you feel so unwell. Perhaps try a spinal Centre in case it's cervical ( neck) vertebra that's the issue...alternatively a head and neck surgeon. CT scan or MRI also? Ask GP for a referral but first find very best hospital that deals with a major teaching hospital with both those areas of expertise. Google, read Dr profiles, ask around and then make appt as urgent.
My son has Klippel Feil syndrome with 8 joined vertebra,3 are in his neck, a sprengel shoulder, 3 joined ribs, rudimentary gallbladder, his aortic arch on the right instead of left and the left subclavian artery going wrong way, around neck causing narrowing of oesophagi a and trachea by 50 percent . Also has vocal cord dysfunction as a result..oh and a 2 cm aneurysm pressing up against trachea!! . He is only 19 and can't breathe...can't get a deep breathe more than 3 times a day, past few years or even vomit without difficulty... It took me 2 years and 8 specialists to find out cause. I am from a medical family background and am a nurse and nobody believed me..said it was probably just anxiety and he was in the too hard basket was one Drs words to his face..not even my own med family thought I should delve into it-'just send him to uni unwell. He gets dizzy and finds it hard to talk and was getting bloating and nausea and fuzzy brain since he was little plus a sensation something stuck in throat since age 6. One paediatrician offered nothing but ADD tablet and seemed to think he was suffering anxiety only coz he wasnt talking much..they thought he was just bottled up and anxious. Well yes coz he had a bloody artery around his throat! I'd be anxious too!! He has just had a laryngoscopy after me insisting and they found the narrowed area..since Op been suffering from excruciating frontal headache a day later as if head going to boil and he has 3 congenital joined vertebra in neck and was a risk for anaesthesia I am suspecting a possible csf leak or something to do with nerves in neck as he has high grade narrowing in area where nerves go from brain. ( foramen stenosis). I fear for him and worry about surgery even too.he may need repair of aneurysm etc but I worry re risks. No quality of life as he is. He can't even walk easily. It's so complicated to deal with and he has cut himself off from friends even now and feels exhausted and depressed as he finds it hard to explain it all and to talk so now has stopped seeing friends even. He is on a special diet too on top of it as he developed reflux from the narrowing in neck and subsequently IBS and gluten sensitivity. I think his problem may be a chromosome deletion as it fits with the description
I feel for you all. Good luck. Keep smiling
Keep perservering for yourselves and insist on best care

Serendip Visitor's picture

CSF leaks & tinnitus

All of my problems began back in the late 1980's - I suffered from massive headaches and vertigo for 20 years. The physician told me I have fluid in my ears and that was triggering the vertigo. The headaches subsided after about 3 months and the vertigo stopped after I had my first blood patch in 2009.

In 2009 I went to the hospital and subsequently had a CT scan and 2 MRI's of my brain, neck and spine. All of the MRIs were inconclusive and no tears were detected. The CT scan detected that my cerebral spinal fluid had leaked out of my head. My symptoms included massive headaches in an upright position, blinding white light, memory loss and fatigue. The doctor on duty in the emergency room literally told me that " my brain was sagging ". Since then I had 3 blood patches in 2009 and one in 2010 when my symptoms returned. Just in case you've never been told - don't sneeze for about 2 weeks after a blood patch, it pops internally.

Today as I am writing this I have tinnitus (ringing in my ears), a stiff neck and fatigue. After reading a boat load of articles on the subject I've come to the conclusion that the fluid in leaking through my middle ear... So I'm heading back to the neurologist in less than a week and hopeful that we can come up with a solution.

Serendip Visitor's picture

Hypotension and tinnitus

I would be very interested to know if anyone has had any help with ear problems following a leak. I had 6 months of terrible headaches 18 months ago before the tear presumably healed over. The problem is I continue to have hypotension although not sufficient to cause the blinding headaches. I had tinnitus prior to the leak but it's worse now and I very often feel my ears are blocked. My hearing has suffered and I get distorted sounds.

Jayme brunet's picture


I had an onset of tinnitus about 3 months ago. Always felt a pressure in my head as well. Yesterday, I had CSF begin pouring out my right nostril, every time I bent over or put my head down! Still haven't seen a Dr. (No insurance) I've had severe automobile wrecks in my past. They resulted in whiplash. Xrays revealed bone spurs in my neck...20 years ago. More recent zrays show the bone spurs are much worse. I was told that this could be the cause of my CSF leak. I've had many symptoms for quite some time now...but the leak is new! Bright orange fluid pouring out my nostril?!?! And NO..I do not have sinus problems.

Julia's picture

I feel that we never fully

I feel that we never fully recover form a leak, we will have reminders from time to time that the cranial pressure is not 100% after 7 months, I no longer have the migraines, tinnitus, stabbing neck pain, and blurry vision...among many other symptoms. But, just when I think everything is o.k, I will get an episode of blocked ears, ringing, eye socket pain. The only difference is that it is temporary.One time last week I bent over to retrieve an item off the floor, and the pain in my head knocked my breath away. It was very intense, and I was surprised at the intensity after all of this time, yet my recovery was quicker. This is why I seriously doubt that the cerebral spinal fluid ever replenishes itself at 100%.

Jenny 's picture

Julia, how long do your

Julia, how long do your episodes last? I think that is happening to me right now. I had a leak one year ago, it took several months to recover. My nausea, ringing ears, and weirdness in my head has returned. We are leaving on a cruise with our 3 boys in 2 days. I don't know what to do. It's so depressing.

Thanks, Jenny

Louise's picture

Dural leak

My problems started in July 2014 I was rushed into hospital following a collapse due to severe back pain, I lost all use of my left side, I had numerous injections without success and in my fourth week of being in hospital they decided to remove the bulging disk that had squashed all of the nerves to my left side. I came out of hospital having had an L2/3 discectomy. I began hydrotherapy and made a slow recovery, about six weeks post op I began to get excruciating headaches, I thought it was stree as I had returned to work and was feeling the pressure. I put up with it for three days, on the third day I began to lose vision and had to pull my car over, the pain was unbelievable. I went to bed as laying relieved it slightly although I couldn't bear to move in bed. The following morning I had a large orange shaped swelling over my scar on the spine. I rushed to hospital where they drained off 40ml of CSF fluid and then had an MRI. This showed they had left a bony spike when they shave the disk this had punctured through the dura causing the leak. They operated to fix the leak and whilst doing so the spine became unstable so they carried out an instrumentation on the spine, I was in hospital for another 14 days recovering. I came home and three days later the headaches began again. I was taken back to hospital and was told they were unable to get to the leak so they dropped some glue onto it and hoped that would fix it!! I was kept in hospital on complete bed rest for a further two weeks and then discharged myself and rested at home. I see my surgeon weekly, I have his personal number and can contact him, this all came about following the headache coming back this last time. I am recovering, however, I am unable to bend forward to pick things up or clean my teeth etc, when I do my headache is immediate and extreme along with this I lose sensation in my right foot over my toes. Today I bent to get the washing out of the machine it happened again and also my hand and arm began to jerk uncontrollably. I spoke to my surgeon yesterday he has said he can operate along with a nurosergeon, the odds of being better are 40% with 60% being worse than I am! Not great. Also he said he will need to remove all the metal work from my spine to get to the leak, they will then put a drain in and patch the leak. At the moment it has formed a pseudomeningocele and he concerned that the operation will make this worse. I am very distressed as for the last eight months I have been in hospital having operations or recovering from them and now have been left unable to live as I did. If anyone else is going through the same thing I would love to talk, it is very scary thinking that this is it and I will always have the pain and not be able to do the things I used to.

Serendip Visitor's picture

Hey! I suffered a csf leak

Hey! I suffered a csf leak following a L4/5 discectomy, to cut a long story short I was confined to bed for 4 days then advised to start mobilising headaches continued along with stiff neck tinnitus & nausea I was discharged after almost 3 weeks in hospital and 2 days later I noticed a large orange size lump over my incision site I got to see the surgeon who decided to leave it for a further 4 weeks to see if it would disperse, after a following 3 weeks it reduced in size but it is still there & not sure if it's putting pressure on my sciatic nerve as I'm having pain! I'm due to see him next week again to see if he is gonna drain it! Have you been doing any exercise? I'm not sure if it will maker it worse or cause the tear to get bigger!

Milena's picture

CSF leak

I have an Spontaneous intracranial hypotension.
I have several unsuccessful blood patch and one unsuccessful surgery.
Nothing covered my leak( C10-C11)unfortunately.
Now i nave even worse symptoms( headaches and bachpain)
Can sombody tell me if blood patch procedures can demage my nerves. Why I have sach terrible pain.

Serendip Viamysitor's picture

spina nerve pain

Yes I understand pain is because leak puts pressure on nerves nerves tell muscles to spas etc you will typicly feel burning or when leaking Then stab then cramping. Then headache

Serendip Visitor's picture

CSF leak...needing treatment


I have a friend in the NYC area that has been suffering from this for at least a year now. She just had an MRI and knows she has leaks, but is still struggling to find a doctor that will take a true interest in her long-term improvement, and has the knowledge to really help her get better. Can anyone refer a good doctor in NYC for a blood-patch, or some other proven treatment to close her current leaks/help her with long-term treatment ???

Thank you, Patrick

Bri's picture

Spontaneous Spinal Headache was my diagnosis

I was diagnosed in Oct 2011.
It started with a lower back pain on Friday evening. It was an uncomfortable pain, that I tried sitting, walking, and even stretching my lower back and nothing seemed to work. I went to bed early Friday night. I woke up the following morning, and maybe 10 mins after I was up I had an excruciating headache that felt like my head was going to rupture from the inside. I went to lay back in bed and noticed the headache had gone away. As soon as I tried getting up again that headache came back. I had never experience this type of headache, and I knew right away that this wasn’t normal.
I was taken to the ER and they run so many test and did a spinal tab and everything came back normal. I was sent home with pain meds. I was back and forth from my primary doctor to the ER for about two months, all I was given was pain meds and was misdiagnosed several times. Migraine headaches, muscle spasms, even thought I had bacterial meningitis. Morphine was being given to me every time I would go to the ER to relieve the pain.
Finally after several misdiagnosis, I was finally able to speak to a Neurologist, friend of the family. My family seeked out to him for a second opinion bc I wasn’t getting any better and were worried, since I was losing a lot of weight, vomiting, and day and night in bed (since this was pain free).
He diagnosed me with Spontaneous Spinal Headache which happens to 1 in every 100,000 people.
He told me to drink a lot of caffeine and that the caffeine would patch that leakage that I had. I had to be strictly on bed rest for 4 days while taking caffeine and laying only on my back.
I took Excedrin pills (contains caffeine) along with black Starbucks coffee for 4 days and would only get up to use the restroom. Other than that I was laying straight on my back (since this was the only way I could lay in bed per Doctors instructions.)
I did this and it worked!!! After the 4th day I got up and the headache was completely gone!!! It had worked and surgery wasn’t needed for me.
Thank GOD for the Angel sent, bc I seriously thought I was probably going to die without ever being properly diagnosed since I was sick for 2 straight months.
I was 25 years of age when this happened to me.

I hope by sharing this, it could help someone.

Serendip Visitor   C.J.'s picture


Hi... I came across your comment regarding your experience with a spinal fluid leak. I was so grateful to hear of your success story of being able to treat it and successfully having relieved you PAIN. I thank God for that also for your sake. I have been dealing with excruciatingly painful spinal fluid headaches for 22 years now and just wanted to hear from you to find out if the blood patches have continued to hold and if you are still headache free.

I would love to know how you are doing in regards to the caffeine treatment for spinal fluid leak at this point.


Bri's picture

Hi, Putting me on caffeine


Putting me on caffeine and bed rest did it for me. I have not experienced this headache again. Has never came back because the caffeine patched my leakage. I never found out how many I had and where. The doctor told me that putting me in bed rest and drinking caffeine would seal the patch. Luckily it worked for me and didn't need to take any other tests or have surgery done.

julia's picture

worst pain ever endured

It began with a thunderclap migrain and stiff, painful neck. Actually, more like someone stabbing butcher knives into the nape of my neck. Then, the most miraculaous feeling was to have the pain completely vanish after laying on my back. The pain would hit me in the early afternoon. Then the intense pressure in the ears, accompanied by nausia. I was very lucky to be diagnosed with SCSFL on my second trip to the ER. I have been on my back, drinking caffiene, and lots of liquids for a week now. Today is the first day that I am sitting at a computer, pain free, nausia free, and no pressure in my ears. But, I've lost a good part of my vision. The blurry vision started about three days ago, and it feels like it's here to stay. I just got a new percription 3 months ago, and my vision is already very poor. I really hope that my vision comes back, or at least does not get worse. I am scheduled for an MRI in 4 days. Being a mother of three, and working full time, this condition has robbed me of my sanity. The pain was out of this world, and now I live in fear that I will experience this again in the future.

Serendip Visitor   C.J.'s picture


ARE YOU DOING ANY BETTER... Ive been going through exactly some of the same things that you described and was very touched when reading your experience and comment regarding your spinal fluid headache experience. Has your vision gotten any better I hope?

I would love to hear how you are doing.


Julia's picture

my progress since relapse

So wonderful of you to ask. I had my MRI and the doctor did not detect any hole. Of course...why would things be any easier? I am doing a lot better, although 6 months later. As long as I do not scream, or laugh too hard, do not bend over to pick up anything, do not exercise, do not dance for more than 2 minutes, and do not lift heavy objects, I'm fine. So I live a limited kind of life. I don't know how long this will last, the doctors don't know either. My recovery time is a guessing game. My chances of re-lapsing is also a guessing game. I am tired of resting, and really tired of experiencing the pain in my nape when ever I do something absolutely preposterous such as tickling my children and lifting them up during play fights. Right now the pain is more emotional and mental than it is physical. I am angry that it is taking so long, and I am in constant fear that the pain will come back. It truely was the worst pain imaginable. This site has helped me tremendously in understanding what I am going through, and I am happy if my experience helps others even in the smallest way.

Serendip Visitor's picture


Just an update on my condition. It is now close to 5 months since my diagnosis. I had two relapses and no MRI. The doctors keep on telling to rest and drink liquids, it does help, but I always relapse. Now I only suffer from eye socket pain when ever I use my peripheral vision. I also feel like my ears are blocked, and a numb pain in the nape of my neck. Sometimes laying down makes things worse, and I've read that this is experienced by other sufferers as well. If I am up all day it is best if I just keep going even if I am pain, because if I lay down and let myself recover, the pain is 10 times worse when I get myself up again. This summer I discovered that being in a pool is absolutely awesome. Being suspended in the water alleviates the pain since there is no pressure on the spinal cord!!! I highly suggest it! I am Canadian, and the Medicare system is ineffective. I need to wait 12 months for an MRI. Thankfully my sister in law works at a hospital, and she squeezed me in for an MRI for September. I am crossing my fingers and toes that the doctor is able to see the hole and get a blood patch because I cannot live a normal life anymore. I would also like to add that my relapses happen just before I menstruate, and the doctor believes that it is due to hormonal fluctuations, has any one else experienced this?

Serendip Visitor's picture


I totally understand what you're going through. Please consult Dr. Stil Kountakis at Georgia Regents University Hospital formerly Medical College of Georgia. I didn't know what was wrong with me until I developed meningitis. I was told that this illness is not common and like the doctors who treated me - most are clueless when it comes to diagnosing CSF leaks. Luckily for me the infectious disease doctor treating my meningitis was persistent in testing my spinal leak which was draining from my nose like a faucet. Even if you don't live in Georgia he could guide you in the right direction. He specializes in diagnosing this illness.
I also have a love for water now...I was surprised to see you mention this cause I thought it was just me. Water is my therapeutic escape. I can't stand loud noises and my vision is not the same. I am grateful for the support that I received from my doctor because it was scary. He did explain that it could come back in 3- 5 years if I did not lose weight and control my blood pressure. I had my cranium repair -blood patch over 2 years ago. Life is not the same and my peripheral vision is affected by the pressure on my cranium.

Don't give up.

Serendip Visitor's picture

csf leak

thank you all for your comments and suggested doctors I do have surgery scheduled for June 11th with Dr Schwartz in Denver Colorado my fingers are crossed that this will work I have hope and faith that one day I will be pain free