CSF Leaks and Spontaneous Intracranial Hypotension

SerendipUpdate's picture

Biology 202, Spring 2005
First Web Papers
On Serendip

CSF Leaks and Spontaneous Intracranial Hypotension

F Michaels

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

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

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

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

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

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

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

 

References

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

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

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

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

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

 

 

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


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

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


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

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


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

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

Pam Bryan

 

Additional comments made prior to 2007

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

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

 

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

 

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

 

 

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

 

 

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

Comments

Caity's picture

So I'm not crazy?

For the last year or so I've been experiencing migraines, just once a month immediately following my menstrual cycle. A few months ago, things changed and I started having daily migraines. They would start out low grade every morning and increase in intensity as the day progressed. By evening, I could barely function. I was also starting to have other female problems right around the same time (I'm 40) so they chalked it all up to perimenopause, but the doctor sent me to a neurologist just to be sure.

My first neurologist ordered an MRI and put me on Topamax and Midrin. The Midrin had no effect at all, and the Topamax could've anesthetized a horse. I was in a constant stupor. Also, his whole attitude about my situation left much to be desired. He treated me like I was nuts. After six weeks of getting absolutely nowhere and still feeling like crap, I found another neurologist on my own.

The new neurologist looked at my MRI and found a small amount of clear fluid in one of my sinuses--not an infection and not enough to cause the awful headaches, but something to monitor. (She even sent me to an ENT just to rule out anything else, and everything was fine.) Also, she immediately took me off the Topamax and Midrin and put me on Depakote with Relpax as a backup medication.

For a few weeks, I got some relief but now the headaches are coming back. Again, they're low grade in the morning and worsen as the day goes on. Also, I'm experiencing nausea (which I've always had with migraines) but also pulse-synchronous tinnitus (whooshing sounds in sync with pulse rate and ringing in the ears) and I'm starting to have problems with my vision. The one other symptom that finally clued me in is that when I lean forward and strain to lift something heavy (Dandy maneuver), clear fluid leaks from my nose. I'm not congested or suffering from allergies. This is the only time I experience this.

After all my research and seeing all the posts here on this blog, I feel like I have a pretty solid case to present to my neurologist. I'm scheduled to see her in a week. Wish me luck!

Linda's picture

To "So I'm not Crazy"

I also have a CSF leak and a lot of my symptoms are quite like the ones you describe. The leak started about 1.5 months ago, and it took over two weeks to receive a correct diagnosis. I did the caffeine drip in the hospital, followed by a blood patch, but neither worked. I have nausea, the pulse-synchronous tinnitus you mentioned (thank you for putting a name to what I have been trying to describe to people) and my vision is definately "off" from where it was before this started. It goes without saying that I have the headache you described, too! I tried topamax and just started taking depakote. I really hope the depakote works; I need to get back to my life, as I have been bedridden for over 6 weeks.

I hope your headache is going away and that you are seeing results from your neurologist. After three trips to the hospital and seeing numerous doctors I have lost faith in our medical community. I like my new neurologist; he is trying to help me avoid having more spinal taps, but that may be necessary if I don't get better soon (spinal taps to locate the leak and apply another blood patch).

Hope you are feeling better and if you can provide further insights, please let me know!

Jill Jerdee's picture

Have you tried Prednisone?

I was put on a very high dosage of Prednisone for a week and then 'weaned' off of it to 'cure' my spinal fluid headache. It worked and I went right back to normal life...except for these annoying residual effects that seem to haunt me. My original headache occurred in 2005. Today I still have lots of headaches (none to the extreme of 2005), neck and shoulder stiffness, "pulse-synchronous tinnitus", (my son claims I'm going deaf!), painful sinus pressure at times, vertigo and an overall feeling of 'aloofedness' - can't concentrate and can't find words sometimes). I don't feel like myself and almost feel like I'm losing my mind. This has all happened since my spinal fluid leak and I find the symptoms go away when I take Excedrin Migraine (full of caffeine). I've debated going back to the neurologist, however I haven't taken the time. Anyone else experiencing 'left-over' effects from their spinal headache?

Anonymous's picture

CSF Leak Help

WOW I am overwhelmed with everyone's stories. I had a CSF leak caused by a surgery for Laminectomy/Discectomy L4/L5. It was 7 days after surgery, I woke up with a migraine worse then any other. Every time I sat up I threw up, you all know what the headache felt like. Went all day like that, my mom called my surgeon that evening and he said "It has nothing to do with what I did; she has a bug call her primary." Next day I had to go to his ofc to see his nurse as I had 22 staples in my back because he started cutting me in the wrong spot! Of course in tote with my bucket to throw up in every 2 minutes or so because I was standing up. She told me to go see a neurologist for my migraines and that she couldn't see me in my current state. SO I went to St. Joes in Tacoma, WA spent 9 hours there. They ran NO TESTS but told me there was nothing medically wrong with me and set me home with percocet and phenagran. They treated me like someone who just wanted a narcotic fix. Next day I went to Valley Medical Center in Renton, WA they admitted me. Because I had a very large incision on my back they couldn't do the spinal tap in the ER. So within a couple of hours of my getting a room a neurologist came in and told me I have CSF leak they just need to prove it. So they came up with some radioactive test where they give you this radioactive stuff intravenously, do a spinal tap, take a little bit of spinal fluid out to test and then they add more of the radioactive stuff in at that site. You cook (lay down pretty still for an hour to hour and half) and then you have to stay very still in on this bed where this camera works its way around you and for 55 min and takes a streaming video so they can see the leak. I managed to skate by with 30 days of bed rest in hospitals and nursing homes as they put a cathader in and made me lay down 24/7. After my stay in the nursing home they sent me back to Valley via ambulance to re-test. Still leaking. They sent me to the University of Washington Hospital where there is a surgeon Dr. Trent Tredway who surgically repairs CSF Leaks. I know he has had people fly in from other states for this surgery. I love him! I had a spell yesterday and some lingering issues today fearful of still leaking but hopefully just a fluke as it was my first migraine after all this. I hopefully have been leak freak and vertical for 1 month and 2 days! I wish you all the best and if anyone is in WA. Valley Medical Center has a test to prove and UW has a way to fix if it is surgically fixable.

Anonymous's picture

CSF Leaks and Spontaneous Intracranial Hypotension

I am looking for information on this sunject, my boyfriend had a condition that the doctor's can not diagnose. He has spinal fluid that leaks out of the bottom of his back and creates a patch of blisters. He was tested for herpes which it is not/ he has had MRI's and cat scans and the fluid tested...which came up as spinal fluid. What could this be any ideas? He claims the doctors do not know...we need a lead thank you!

Lucia's picture

CSF headaches ie. 'Brain Drain'

I, too, have a history of CSF headaches. I started feeling tension in my neck and a light headache in early 2001. After three weeks of I awoke one day with a monumental headache...unlike anything I had ever felt. Went to ER and was told I was tense (DUH!) and needed tranquelizers and to change lifestyle.. Well, lifestyle was already calm and unstressful but I took the meds anyway, went home and went to bed. Two days later it hit again but much worse. Got to ER and when they told me to stay in the wheelchair until I was checked in and I couldn't do it...had to lay down on the floor. That got their attention!
Had classic symptoms: headache (which eased when I was laying flat), nausea,
vomiting, tinnitus and fatigue. Next day they ambulanced me to Stanford University Hospital, where I spent a week undergoing painful tests and was finally given a caffeine IV and sent home. The MD's there were almost useless and did not listen to me. They said (after MRI's, Cat scans, nose plugs and barium injections, etc) that they couldn't find the leak. I told them about the 5 inch diameter lump between my shoulder blades and they said it was just edema from lying on my back. ...And where did the extra fluid come from??? They didn't care and said it was irrelevant. Well...any change like that is NOT irrelevant.

I finally figured it out on my own.
My leak is between my shoulder blades and I can feel it when it leaks. If I stress out that area with heavy lifting, Yoga shoulder stands, driving on really curvy roads, or sometimes just coughing I can feel the leak start.
I can slow down the leak by immediately stopping the stressful activity and getting quiet and still (if possible flat on my back).
What helps? Painkillers NO! They don't touch it.
Alcohol NO! The dehydration makes it worse.
Massage NO! The massage relaxed me but pulled on the muscles and caused the leak to get worse.
What really helps? Caffeine, lots of water, bedrest, avoiding stressing the area, and moderate gentle exercise.
I am interested in the naturopathic doctor's ideas. I don't think modern medicine has a clue on this illness. I have not had any remedies from them and am fortunate that the killer headaches went away on their own. However, I do still have the 24/7 (very light) headache, hearing sensitivity, inability to focus on detail work on computer for more than a few minutes, and the fear that another Brain Drain could happen at any moment.
PS: I really appreciate this chance to communicate with other people who have had this illness. The MD's kept saying is was 'all in my head'...maybe so but that doesn't mean I am crazy...it means that I am in pain!
Hearing other peoples symptoms has been helpful. I am not alone!

Colleen's picture

SIH

It may be all in your head, but not in your mind. I have had the tinnitis and generally feeling lousy at times for over 2 months. I finally completed a spinal tap and had a radiology dr that knew about my situation. He couldn't get any fluid becase my pressure was so low. The first time another dr tried, my blood pressure dropped and they aborted. This one knew what the problem was and injected the radio istope and completed that part of the test. He also told me what to google for and I found this website. Now I'm waiting for the next step from my neurologist. I'm really glad I don't have the terrible headaches everyone else does.

Rebekka's picture

SIH

Dear Lucia, i am so happy to see that i am not alone and i would like to get in touch with you all that have had this terrible condition. I have had this since jan 17 2009, was diagnosed in Malaysia and i am still having symptoms as you describe it and i am getting so tired and want to get my life back on track. Nobody understands you and just looks at you and asks are you really sick??? I was very healthy before and active and now i am not able to do much to keep myself in shape.
Rebekka

Anonymous's picture

Spontaneous Intracranial Hypotension

I was diagnosed with SIH in March of 2007. Two and a half years later, I am not the same. I was also very active and worked for United Parcel Service lifting heavy packages sometimes above my head for three and half to five hours a day five days a week. I also had sinus surgery and I had several spinal adjustments from three different chiropractors. I mention these things because I am wondering if they are possible causes. I used to hike and backpack frequently and I would hit the gym at least three to five times a week. It took four internists before the fourth told me she thought my symptoms might be neurological. I was sent to a neurologist who at first thought I was nuts and malingering, but I had taken notes describing my symptoms in sequence and after I had read my notes to him, he ordered MRI's of my brain and spinal cord with and without contrast. The MRI's showed severe indications of a cerebral spinal fluid leak. My neurological exam was normal and remains normal to this day. The neurologist also performed emg tests and they were normal as well, however, I am not the same and although, a fourth series of MRI's showed spontaneous resolution, I still have symptoms. I was sent to a neurosurgeon at UCLA who told me my condition was very serious and that I should'nt sneeze, cough or lift anything over 15 lbs. He did not want to perform any surgical procedures because of the severity of the leak. My leak seemed to be precipitated by a bout of sneezing and clear fluid running profusely from my nose, but he told me he didn't think it was physically possible to have a leak from the cribriform plate, yet, I have read and heard otherwise. He told me that he thought the leak was most likely due to an intrinsic weakness in my dura. I was very sick for about seven months. I never want to feel like that again!!

David Hollies's picture

DO a search on Dr. Wouter

DO a search on Dr. Wouter Schievink at Cedars Sinai in LA. HE can consult with your local doctor and help you determine if you leak and the best approach. Many consider him to be the world's foremost expert on CSF leaks.

Anonymous's picture

Spontaneous Intracranial Hypotension

I went to see him. He told me he thought my leak was in the thoracic section of my spine, yet, he wouldn't show me where on the MRI cd of the thoracic section of my spine the leak was. In fact, he lost the MRI cd of that section of my spine when I asked for it back. He was a third opinion. Everybody states he is the expert, but I have experienced otherwise!

Anonymous's picture

sphenoid sinusitis

last year I had epidermal injections for my lower back. a few months later i had this overwhelming terrible taste of salt in my mouth. the more I brushed my teeth to try and get rid of the taste it made it worse. I did not put it together at that time. since I was reading some of these posts. I usally suffer headaches as a norm for me. I had gone to my general doctor for the salt taste but I felt they thought I was crazy. So did i feel i was going crazy. its so nice to know Im not alone. this year I was just diagnoised with sphenoid sinusitis about 8 months after the salt taste. my lining of my nose was swollen Iam unable to get any mucus out. I have had this for about 5 weeks now. I only went to the emergency room when my head was about to explode. when I stand up the pressure is very intense laying down seems to releive the pressure. I was given antibiotics and pain killers. a couple of days on the antibiotics I broke out in large red spots on my hips, buttocks and inner thighs. a few on my forehead as well. but they were not raised or itchy. I was told this was a reaction to the antibiotics I was changed antibiotics. Ive been allergic to penicillin for years. the new antibiotics i was given made my stomach in very much pain. I have an appoinment with otolaryngology in a few days. I so hope I can have this problem fixed cause I would never want to have to suffer the pain in my head again it was unimaginable. I think when someone is complaning about something as silly as a salt taste in their mouth it should be looked at with more seriousness then they do. at least direct them to the right kind of doctor that can help them. its been 8 months at least now and Im finally coming to a conclusion of what it might be. Thank God!!!!!

Barbara's picture

SIH

I am a 56 year old "Young" woman. This is my story: Traveled home from a weeks vacation at the beach on Friday 8/2/08. Had a great time. Then life changed as I knew it. The next day I woke up with what I thought was a migraine headache. By the 4th I went to the emergency room. They said I have a migraine and sent me home after giving me a shot. On Monday, the 5th I called my previous neurologist. Because I hadn't been there for a few years they stated that they could not help me and that I would have to go to my family Doctor for a referral. I couldn't believe it. I called my family Doctor and they would not give me a referral until I had come in for an appointment. I was given an appointment on Tuesday of that week. I was in so much pain I was taking pain medicine I had at home and nothing worked. I could not move, if I did I vomited immediatley. After seeing my family doctor he prescribed a different migraine medicine that was new to the market. He stated that if it didn't work call him back in a few days. Well it didn't do anything and I called him the very next day. He set up an appointment with a new Neurologist and they took me in on Thursday as an emergency. When I arrived a the office I had to lay down immediatley. The Doctor thought it was also a migraine. She gave me two shots in the back of my neck to numb my head so I would get relief immediately. Well I didn't. The medicine she gave me didn't work and she had told me that if I did not feel relief by Sunday to go to emergency room on Monday and request an IV of Depakote (which is what I always took for my migraines). Well of course nothing worked but I was not able to get to the hospital until Tuesday. I also was experiencing double vision by this time. As soon as I was looked at in the ER, I was taken for an MRI. With the double vision and pain I was experiencing and the MRI showing mennigies(SP?)as well as the Lumbar puncture, I was immediatley placed in isolation as they thought I had spinal menningitas and told I could die!!! As those tests came back they removed me from isolation the next day and placed me in a hospital room where I stayed for 7 days. I was given shots of morphine every 4 hours and shots of phenigrin (SP)for nausea every 6 hours. I was in heaven. I had a total of 3 MRI'S and 3 spinal taps (lumbar puncture) and continued with the double vision. After 7 days of not coming up with anything or trying any other medicine to help the problem they transferred me to HERSHey Medical Center where I stayed for 4 more days and received 3 different MRI's and 1 more spinal tap as well as made to wear an eye patch for the palsey. They sent me home stating that the results of the tests they took showed I most likely had MS. Well I wouldn't hear anything for another week and was scared to death. I was sent home with NO pain medicine after being on it for 11 days. I was in such excruciating pain I kept calling the hospitals medical service. They finally called an RX in that helped somewhat relieve the pain. When I went back for my results a week later they stated that I did not have MS or any type of illness like that . They tested me for AIDS, Syphallis, Lyme Disease, etc. You name it I was tested for it. I couldn't stand the pain any longer so I called my Neurologist and she set up an appointment within two days for me to have a Blood patch. After reviewing all my tests from both hospitals it was plan to her that my spinal fluid level pressure was very low. She was amazed that all the doctors that had seen me did not notice the low pressure and treat it properly. I still had the double vision which was actually called 6th Nerve Palsey. Once I had the blood patch it took approximately 2 days and I was pain free. After two months of HELL I was finally cured. It took 1 more month for the nerve to reattach in my eye and then my vision was back to normal and I was able to stop wearing the eye patch. Thank God for my neurologist. She stated to me that she was in contact with some of the Doctors at the hospitals and kept telling then to read the pressure level. Anyway I am on one pill a day, amytriptolin (/), to help keep my normal headaches away. I would not wish this pain on my worst enemy. At one point I just prayed to die. During this my scalp even hurt that I was not able to touch it to comb my hair. I am so thankful that this was resolved and also that I have a clean bill of health from all the tests that were taken. It took me a while to find this site. Thank you to F. Micheals at Bryn Mawr college for writing this paper.

Emma's picture

SIH

Your symptoms sound exactly like mine. I live in England, so I am currently being treated on our national health service. Its been a nightmare, I simply woke up one day with a headache and neck pain and its been all downhill from there!! Its been a month now and I'm finally getting the neurologist to agree that my symptoms are a CSF leak. It took the eye doctor (who had a background in neurology) to confirm this, I explained my headaches to him and my double vision (6th nerve palsy, he said) and explained that the neurologist had mentioned a leak but then dimissed me with some migraine medication (I've NEVER had a migraine in my life, I'm 34). He was shocked and referred me back to her. Anyway,I am waiting for the results of my MRI, which will hopefully show this and I can get some treatment. I have to say that I was feeling some relief from the headaches last week, but they have come back with a vengance this week as well as the original neck pain I had. I feel I had to reply to you, as you have given me a bit of hope that with treatment the headaches can go away and I can go back to living a normal life. Its my eye that's been troubling me more and some tinnitus, but having read that yours has disappeared it has given me a lot of hope!! I am alone in the house tonight as my partner is away on business, and as usual have worked myself up all day worrying about the results and the treatment and the pain I'm in, so reading your story has calmed me down!! Thanks, hope you are still well, and I am away now to drink a boatload of coffee (seems to help with the pain!!)..xx PS I am also on amatryptaline for the pain, 3 a night, hope to get myself weaned off them so I can have a nice glass of wine sometime!!....

Serendip Visitor's picture

Intercranial Hypotension

are you still suffering? I am English but live in the USA, and had 2 lots of blood Patches, and seem to be much better except for some neck pain when laying half down on 3 pillows.

Kate's picture

CSF with IH

Okay. So this is me...I was sitting at my desk at work 3 weeks ago. I sneezed. Hard. Right after that my headache started and has not gone since. I've had all of the MRI's and CT's, medications and even the blood patch. I just had that done yesterday so I'm still waiting for it to kick in. I havent't taken any percocets in the last 24 hours which seemed to take the edge off of my pain. Glad to hopefully be off pain medication. The problem is that they can't find a leak. They are treating me as though I have a leak along with what they call intracranial hypotention. The hypotension suggests that my crainal (fluid) pressure is low but when they did a spinal tap it showed up in the high range of normal. When they did a follow-up MRI they saw that the fluid around my brain has decreased. This is what convinced them that I might have a CSF and to do the blood patch. I've had all of the symptoms,severs headache, loss of hearing, tinnitus, vertigo, nausea, and even vomiting. I know not every case is typical but I wondered if anyone else showed "normal" test results but was treated for CFS and IH with any positive results. I am a 45 year old female and live in CT for anyone that might be interested in the Doctor's that I've seen. They are great. My anesthesiologist that performed the blood patch procedure is excellent. Even my neurologist has been extremely attentive.

Serendip Visitor's picture

Help

Could you please let me know who is your doctor?
Thank You!

regina's picture

csf doctors

My husband, 50, has been diagnosed with a CSF leak. they want him to go to Philadelphia for treatment. I would like to know if there is anyone in NJ that performs the blood Patch. We are in northern NJ. Thanks in advance

mary's picture

Regina, how did your husband

Regina, how did your husband get diagnosed. I am in N.J. went to Pa and 2 years later still have no diagnoses with clear liquid running out of my nose daily. What test did they do. Thanks

Dave B's picture

Help!

Hi,

I have been struggling to find the cause (even the diagnosis) of my headaches since July 20, 2004 when over a 2-3 day period I had an incredibly painful headache out of the blue. I had a spinal tap and CT scans which resulted in a diagnosis of viral meningitis. The headache persist today, 24/7. I have had MRIs which indicate I'm normal. I've had about every test in the world done and it says I'm a healthy 29 y/o male. Yet I have a pulsing, foggy-head, dull pain that will not stop. I wanted to know:

Is it possible to have a leak and it not show up on an MRI? If that's the case, what is the next step? I may have a condition called New Daily Persistent Heachace (NDPH), but I was so healthy I can't help but feel there is a cause to the problem. I've tried numerous meds that do not help. I have noticed that I do not have any positional symptoms, meaning the pain is the same regardless of my position. Anyone have some advice? Thanks.

-David

Anonymous's picture

YES, it is possible to have

YES, it is possible to have a leak that doesn't show up on an MRI! It is actually COMMON! If you'd like to hear many, many stories of people experiencing this, go to Brain Talk Communities website forum...

http://brain.hastypastry.net/forums/forumdisplay.php?f=126&daysprune=-1&order=desc&sort=lastpost

So sorry you're experiencing this!!! Wishing you all the best!

Christine's picture

There is help

I'm 19 years old and fortunately for me, i've been headache free for about 5 months now. 4 years ago I woke up one day and just had this terrible headache. I figured it had to be due to stree, school, or head cold. I A few days later and my headache had not subsided, in fact it got worse. When I would stand up a sudden rush would leave me feeling faint and seeing black spots for a few moments. My mom and I finally decided to go see a neurologist about it after weeks of pain. They ordered so many tests for me, CT, MRI, Xrays, blood work, everything. To this day I don't think my neurologist looked at my scans because his cure for everything was meds. For most of my high school career I was doped up on some form of med that wouldn't get rid of my headache but just cover it up for awhile. When medicine became too much for me and I knew it had to stop. My neurologist then told me I probably had lymes disease and sent me to another doctor. The infectious disease guy thought I was crazy because there was no indication of lymes disease. I then went to a physical therapist for a few months because he thought it was a pinched nerve, turned out it wasn't. Going back to my neurologist he ordered a spinal tap for me which also indicated no abnormalities. Although for two weeks after my spinal tap I could barely lift my head off the pillow because of the pain. Finally I just gave up. No one was giving me any help so I just learned to deal with them. For two years I didn't take any medication or go to any doctors. When the pain became too much to deal with I decided to start over from scratch. I met with a brain and spind doctor at Princeton Medical Center in NJ. Mark McLaughlin took an hour with me reviewing all my films and medical work. He noticed two diverticula off my spine and ordered another spinal tap with MRI to confirm. When the results came back it showed that I did indeed have two spinal leaks. He reffered me out to Cedar Cinai Hospital to Wouter Shievink who was leading the research on this. He performed another spinal tap with MRI to confirm this and the following day I went in for a high epidural blood patch. The one negative thing about the blood patch is that I have to be extremely careful in everything I do not to tear it open. I had to give up playing lacrosse and working out just in fear of it coming back. I know that if the blood patch doesn't work they use a glue to close off the diverticula and if that doesn't work they perform surgery. My advive to everyone is not to let this go. I fought for years with my doctors who all thought I was making it up. They thought I was crazy for seeing black spots in my eyes. I feel amazing now, being able to stand up and not feel faint or have sever pains in my head. It's actually really nice now getting a normal headache and knowing tylenol will take it away for me. Talk to your doctor about it and make sure they are actually looking at the films and not just reading the reports. It's something that can be fixed. It's nice to know i'm not the only one out there. For awhile I thought I was an unusual kid with this random issue. Good Luck to everyone!

Sarah's picture

me too!

I could not believe what I just read. I was starting to question my sanity. I have suffered from a leak of CSF ever since I woke up over 3 monthes ago. I woke up early on a regular day to run errands and by 10 am I was suffering from severe neck stiffness, pain and this undescribable pain in my head. I never suffered from previous headaches let alone migraines. I went home and self medicated with advil and sleep. For the following week I woke up with the same symptoms. I was disabled and couldn't do anything but lay on my sofa. I couldn't work or take care of my 10 month old daughter. The pain would completely disipate when I layed flat. But when I stood up gradually the pain would grow to be so intense I would scream and cry. I finally went to a local neurologist and I was misdiagnosed with fibromialgia, posturial headaches and chronic migraines. I took the medication prescribed for 3 weeks with no relief. Meanwhile I visited the ER twice and continued to miss work. I felt no one understood or thought I was lying. My neurologist sent me for an MRI. The MRI showed little shadowing in my left temporal lobe and my meninges were inflamed. This meant really nothing solid he said so he had me check into the hospital. I stayed for 6 days being treated for an "intense headache". Then something weird happened. I had no pain level when they put me on a caffeine drip. It was the first relief I ever had. I spoke with a anestisiologist in the hospital who said I had all the symptoms of a spinal headache minus the time line. I had received an epidural when I had my daughter 10 monthes earlier from the onset of my headaches. I was discharged from the hospital and was told to go seek second opinions. I brought all my records to a Headache Center in Philadelphia. The specialist looked at my MRI pictures and told me they were consistent with someone that was leaking spinal fluid. She said that during my epidural the person who performed it could have caused a fistular before sending it straight in. This sistular would have weakened my dura membrane and it would have been just a matter of time before it ruptured. Possibly lifting and carrying my 20 pound child around. So I was instructed to have a blood patch done. I had the patch done the night before Thanksgiving. I have not had complete relief but some. At times I feel it stronger than other times. It no longer is positional either. I also have chronic pain in my lower back where the blood patch was done. I suffer from light headedness 24/7 and also dizzy spells. Recently I have felt them intensifying. Although I am functioning again I am still not 100%. I just hope this ends one day. It inhibits me from enjoying time with my toddler. I live in constant fear of it returning! I feel alone and frustrated. Good luck to all that also have had to experience this too!

42inHK's picture

CSF Leak - Suffering at th Moment

Hi Carol,
I've read about your condition regarding your CSF leak. The only way to find out about location of your leak is through lumbar puncture and a series of MRI scans. These procedures are essential before they can decide whether a blood patch is crucial or not.

In my case, they are unable to perform blood patch on my CSF leak because the source is located at the C1 of my spine (the top of my neck) and they do not want to perform it bec it will be a blind spot for them to do blood patch. Very dangerous procedure and may cause paralysis if ever wrong. So they did a surgery on the back of my neck.

In your case, if blood patch is recommended would be good but there are chances that you may have to do it again if you get recurrent headaches (symptoms that your condition is going back to where it was before).

As for me, since after my surgery on Sept 18 & 19, I never had any headaches or migraines. I was able to stand up after 5 days and had complete bedrest for a month (bec of 2 surgeries). I am back to work after a month and back to gym after 1-1/2 month. If blood patch, I am sure it will be a week or less as they would just perform injection on your spine to cover the leak. You can also check with your neurologist.

You may need to take care more though bec in some cases, the tear that makes the CSF could come back depending on how straineous or stressful your activities are. I would say you may need to watch it for a year minimum. But of course, it is better not to worry much about it.

Lyla's picture

where have you read? I have

where have you read? I have been searching for info with little luck. Most info has come from this site and others. Have you read anything on the glue procedure? cant remember what it is exactly called. thank you!

Carol Bradbury's picture

CSF Leak - Suffering at the moment

It really helps to read accounts from others. My severe headaches came on suddenly one day and I have currently been in hospital for 5 weeks, on bedrest, fluids and a cocktail of tablets. I feel very fortunate that my doctor has diagosed this so early on. As yet they have not found the location of the leak.

I have not had any blood patches yet, is this esential for the leak to be cured? How long until I can go back to work?

I am 33, I love sport and I am a PE Teacher I really would appreciate any advise on how long it will be before I am back to normal - if ever!! Once it is fixed is that it or do I always need to worry that it might happen again?

Look forward to any replies or any one who just wants to share their experiences.

Lyla's picture

CSF LEAK

Mine too came on suddenly. I was sitting at my computer at work and felt a burning pain in the right temporal area. It knocked me to my knees. I suffered for two years prior to a diagnosis. I actually took matter into my own hands and researched all symptoms as I was getting no where seeing doctors. I am not nuts nor am I drug seeking. I spent two years lying flat as that was how I was most comfortable. Thank the lord I had a job that allowed me to lay down two to three times a day just to get relief. I have had two blood patches which have been a huge relief however I am currently working on getting an appointment with Dr. Mokri at the Mayo in minnesota. After searching many blogs his name came up often with good results. I am able to walk with out pain most of the time but do feel some pain coming back so want to head that off before it gets worse. I too was very active and a VB coach but had to quit because I could not stand for very long and the pain was excruciating. I have not been hospitalized but have been given many drugs/pescriptions which I did not even fill. I wish you luck and hope you get back on your feet. In my ordeal the best thing I could do was to take matters into my own hands-you will get relief faster. I would start with a blood patch. Immediate relief! Good luck!

Lyla's picture

CSF LEAKS.....greatful for any information!

wondering if anyone is suffering from pressure/pain when coughing, sneezing, straining or bending over? Is there anything i can do to resolve or lesson these? I have had two blood patches and these are residual symptoms. it did take two years for a diagnosis. Just like the all of us, I WANT MY LIFE BACK! please, give me any and all information you have. I feel like I am alone in the medical field and am tired of being treated like I am nuts! Thank you!

Serendip Visitor's picture

CSF leaks

Hello Lyla you can contact me at rebekkaros@hotmail.com i have same symptoms
hope you get this
best regards
Rebekka

melissa brown's picture

CSF Leak

I'm 28 years old. Had Surgery on my ovary to remove a mass, and some lesions. A couple weeks after surgery I started having these severe headaches, dizziness, throwing up, and was so so sick. Was in and out of the ER. Had a CAT scan, they wanted to do a spinal on me, but I was like, no I'm just dehydrated from throwing up, just give me some med's and bag of fluid and I will be okay.

Then even IV of med's no relief of headache. Headache would not go away. Called OB GYN and all he and his staff would say oh you are going throug a change of life, or you are having a migraine, do you want some nause medication?

I got very frustrated, two weeks went by and still had a headache, was not getting any where with the OB GYN, and I KEPT telling HIM and his staff, I know my body, there is something wrong! Please, help me! I am not having a Migraine, this is much worse, I feel like my head was going to explode out of ears.

So I went and seen my primary doctor. After several weeks of having the headache, the headache had taken over my body. I was becoming dehydrated, dizzy, fatigue, and having muscle aches in my legs, arms, neck. I started having signs of MS. (Mulitple Scloresis) My primary doctor was very more concerned then what my OB GYN was and he sent me to a Neurologist.

Between the primary doctor and my neurologist they had me do MRI in which didn't show anything other then I had white flakes on my brain? Then the neurologist was like well you are having migraine. I was like I don't think I having Migraine, this is something much worse, I can't stand light, sound, dizzy. He gave me Topamax, and replax. These things seemed to help me control the headache a little better, but it didn't got away. I kept calling the DR's everyday and trying to explain to them. This is a headache that is 24-7 it doesn't go away for a second. I get woke up at night with pain!

So Lets get the timeline going. Surgery in September 9th, first headache October 5th, started seeing Neurologist November 4th. Still no relief from my headache.

November 17th, my Neurologist says I can go back to work. I'm like do what, how with this headache. So I'm like okay, I will try, and maybe with getting out the house maybe things could get better. So I get back to work. I get worse, WORSE, not any better. Two days before Thanksgiving I pass out at work. Day before Thanksgiving my Neurologist says No you can't work until we get to the bottom of what is going on.

Then the monday following Thanksgiving I have an appointment with my neurologist and he says well lets do a EEG and see if you are having seizures. I'm like what is headaches and seizures linked? So I go along with it. Test come back normal of course. Then he calls me and says well lets try some other meds. He puts me on more meds, this time this meds has me in the ER with chest pain, Left arm numb and pain.

At ER, they drug me, and the DR's there and stumped that all the drugs they are giving me is not knocking me out, and that I still have a headache. So I'm like do you see, I'm not crazy, I have this headache that is every second of my life like white on rice and it will not go away.

So then after my ER trip, me and my neurologist get into it. Because I feel he isn't trying to help me. That he keeps sending me in circles of tests that just make me sicker or don't get us any closer to helping me.

Then my neurologist calls me and says we are going to do some extensive testing ***DEC 8th, he sends me for scan of my neck to make sure I have no blockage and that the circulation to my head was okay. They also did a lumbar puncture and checked the opening and pressure of my brain. (LUMBAR CAME BACK NORMAL) (SCAN CAME BACK NORMAL OTHER THEN THEY FOUND A TUMOR ON MY THYROID)
***DEC 9th, he sends me for a sleep deprived eeg test. To see if i have seizures while sleep deprived. (TEST WAS NORMAL) This test of course made me real sick I was throwing up, had such a severe headache, because I had to stay up all night.
*** DEC 10th, he sent me for a tilt table cardio test. This was (NEGATIVE)
(But during the test the cardio doctor noticed and had me notice that when he had me lay flat on that table my headache was gone, but as soon as he stood me up or layed me down I had a headache.)

So then on Thursday Dec 11th, I get a call from my Neurologist that he believes that I have a CSF, that he is going to schedule me for a BLOOD PATCH. I was like okay.

Had my Blood patch on Thursday, and INSTANTLY had no headache. I was in SHOCK at first when the doctor asked me do you still have a headache, I was like um, I don't know. He said, it's either you do or don't. I said well no, it's gone for now, but how long will it last. HE said hopefully it will last forever.

So far my blood patch has worked. But, after living with that INTENSE headache for TWO months almost three months, I have neck pain, my jaw hurt for the first 48 hours, then my head just feels sore, it doesn't hurt it is just sore. My ears have been popping like I have been in higher altitude. My whole body is real sore. My back, is VERY sore, BUT I can live with it being sore as long as that headache don't come back.

My headache at the end got so bad that it effected my balance, walking, speech, and the clarity of my mind.

I feel so sorry for all the people that have had this for years. Hopefully my blood patch will work and I won't have to repeat anything. Now I just got to get over the mental suffering I have had from all the medical staff looking at me like I was crazy, and sometimes treating me like I was faking, or wanting med's.

I have called everyone, I have seen and misdiagnosed me or told me other and said do you remember me, the lady with the headache. Well I have CSF leak, that is the cause of my headache.

GOD BLESS you all! Hopefully more doctors will quickly diagnoise this then not.

For my CSF leak, it was cause my OB GYN during my surgery! I was actually having signs while in the hospital and they ignored me when I said my ears where ringing and itching.

Lyla's picture

CSF leak,

could you tell me about your neck and jaw pain? I too have upper neck pain daily. Do believe my constant state of tension causes muscle tightening as well but I am concerned if I need to look elsewhere. Pain meds do help. Pain is not related to lying down or standing any longer which is a godsend. any info would be helpful. I posted a note a while ago with no response. Just looking at all options, ideas as the medical field is not much help!!!! thank you and take care! Lyla

42inHK's picture

Subdural Hematoma & CSF Sufferer in HK

Hi there, I have been reading this site and could not resist sharing my own experience just recently took place in Sept and hope that it could bring some enlightenment at some point to my fellow sufferers. I had been diagnosed with Subdural Hematoma due to Intracranial Hypotension caused by Spontaneous spinal Cerebrospinal Fluid Leakage (CFS). I have been suffering from dizziness, pounding headaches, migraines and nausea for more than 5 years. One of the doctors during the earlier consultations suspected of a brain tumor but did not do any further tests. I went to see other doctors but I was given only pain killers for headaches and migraines which was frustrating. 1 doctor did looked deeper in the problem and refered me to physiotherapy which gave me better results for the next 2-3 years.

However, my condition did deteriorated from July 2008, my headaches came back and this time they were postural headaches in addition to its pounding pain accompanied by nausea and vertigo. My work is disrupted, stayed in bed and unable to stand up for long periods. My headaches will go when I stay in bed and comes back whenever I stay up for over an hour.

It went on for a few weeks until I had suffered stiff necks and spasms I was unable to move my neck and shoulders for a few days. My new GP had asked me to have a CT Scan of my brain late Aug since I kept coming back to her. In early Sept I did had the scan and the clinic did not want to release me anymore since they found acute subdural hematoma on the results and I need to be rushed to the hospital.

I was under observation for a week by a Neurologist. I lay down in the hospital bed with my head lower than my feet for several days as part of the test. They did further CT scans a week after. Upon finding out that my condition had deteriorated further, I went under the knife on Sept 18 for 3.5 hours to get the hematoma out. The next day, I underwent several tests of Lumbar puncture and MRI scans for another 3 hours of torturing, injecting contrasts to various parts of my spine. In the afternoon, the result came back and found that the CSF leakage was located on the C1 of my spine so the talk of blood patch was out of the process and needed to have laminectomy the night of Sept 19 for another 3 hours which left a surgical wound of more than 7" on the back of my neck. It was a total pain but it's worth it!

I was in hospital for 3 weeks. The first 3 days I was immobilized completely and struggling to move my body doing log-roll when feeding myself and doing other daily routines. After 5 days of 2 major surgeries, I was able to get up eventually discharged from the hospital in Hong Kong. I was resting at home for a month.

The doctor was very professional, precise and accurate. He did a very good job at analysing my symptoms, my condition and my pains. The equipments in this HK hospital are very accurate and high tech. By end of November I went for my first CT scan after my surgery and the result was satisfactory. I never have any headaches or migraines up to this moment and I was back to work in November and back to the gym on mid Nov doing cardio and light exercises.

Mark's picture

CSF leak

This site has been so helpful. Knowing that there are more people going through this and it is not some make believe thing. I am trying to get a blood patch.

My headaches started when I went over some very rough railroad tracks in my car. It felt like the inside of my head jolted forward while everything else stayed still. I went to a doctor a few days later cause the headache did not go away and it was much worse when I was up moving and much less when I was laying down. The doctor thought maybe a concussion and gave me some medicine. The medicine didn't work at all and I went back. They set me up so see a neurologist. I went and gave him all my symptoms and he knew what I had. I had never heard of anything like this before.

I had MRIs done of my head and neck and they didn't find anything. I am so tired of the headaches and my vision sometimes shifting. Now I am at the point where I am trying to get a blood patch, but we have to get the hospital to see that I need it.

Here's hoping that it all works out.

Beverly's picture

Triple Threat Diagnosis

I have spent the last 3 hrs scouring this site and besides being edcational, I also feel relieved and hopeful. Remember the old TV shows where the announcer would state at the beginning "The story is the same,only the names have been changed"? We all have the same story of symptoms,the same frustrations, and the same HOPES (to be headache free and "real" human beings again) How grateful I feel right now to see I am not alone,that I am not crazed,just LEAKY.
I was diagnosed 5 yrs ago with Intracranial HYPERtension, then after various treatments that failed my NSG installed a LP shunt. Other then the occasional pressure headache 1 to 3 times per week, I was able to maintain, meaning working F/T, traveled extensively (biz & pleasure) all over the country, and most important was able to play with my 6 Grandchildren as they came along. They all range age 5months to 6 yrs old and they are the JOY in my life. With that said, when my Shunt became disconnected Apr '08 and quality of life started to quickly fade, I was anxious to get it repaired and get back to LIFE. Sounds reasonable,RIGHT?!
It took until July 28th to get the revision surg. and from that day to this I have not been able to be out of bed for more then 3-4 hrs before the pain becomes unbearable and the nausea/vomiting doesn't even let me keep water down. The tubing in the shunt is now freeflowing and due to the fact they have done a few lumber punctures I am guessing that I have a leak in the column as I have before,plus it kind of boils down to "ya know when ya know" that something is wrong. Also to add to the mix, Oct '08 it has been discovered via MRI,CINE MRI, that I have Chiari I Malformation. The only thing I don't know yet is whether I have a syrinx as I had on;y Brain,not spine MRI. In addition to all this I also have insane pain throughout my belly area that sometimes radiates down through my groin and around to my side and lower back. Even though my now "EX" surgeon insisted nothing was wrong in my gut, I insisted on tests, and during a evaluation with a Gen. Surg., it was discovered via CT scan that the shunt tubing is wrapped around areas of my intestine..plus..when they replaced the tubing in July they left the old tubing inside me to float around. So for now I wait for the NSG and Gen Surg to coordinate schedules so that I can have surg. again to add a valve to my shunt, take out and replace the tubing and do a in surg blood patch to fill the leaks.I truly do not know how anyone,anywhere could go through what we do without a sustaining Faith that we are all in God's hand! That is my prayer for each of you and I am asking to be remembered in your prayers as well.
In addition to prayer, I have also found a few natural aides that can help ease some of the symptoms. I still have to take my collection of meds for B/P,anxiety, and pain,,.. but try chewing 3-4 papaya pills a few times a day (works wonders for upset stomach) Ginger Root suplements for nausea 2x a day(zofran is the best nausea drug) also try B-complex,tons of fiber (to stay reg as pain meds can mess ya up) probably 2 pots a day of coffee (to help stave off headache) and most important WATER-WATER-WATER. Also because I throw up so much each day I stick to softer foods like pastas,soups etc and hot cereals for breakfast. I truly believe the bottom line is to educate myself, whether you have only 1 disorder or multiple like me. That and having a strong support team keeps my sanity. I have discovered alot of new food for thought in reading what has been going on with all of you, I hope by what I have shared, it will be encouraging to some of you.
God Bless each of you!
Beverly
48yrs in Oregon

Dana's picture

surgery with Dr.Schievink ?

I have had a csf leak for 8 years , saw Dr. Schievink for two glue patches - that failed and he says surgery is the next option. I was wondering if any one has ever had csf leak surgery with this doctor and how it turned out.

Anonymous's picture

I'm drinking lots of water

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. Im also taking a lot of rest during the day, well im doing handmade jewelry and that relaxes me.

Anonymous jim's picture

Help

I have had headaches for thirty years. Now they are daily. Mostly the pain is moderate to severe. there is a burning in my neck and it feels like acid burning on the top of my head. If i take enough percoset and fiorinal it will take it away. Laying down sometimes helps, but not much.I do have ringing in my ear but it started after I was neer a loud explosion about twelve years ago. My Doctor said I don't have a spinal leak becouse its not severe enough. My shoulders are always up and I am cringing from pain. Should I persue this as a possible cause.

Thanks Jim age 45

Lyla's picture

Looking for answers and/or guidance

I went misdiagnosed for two years. Excruciating two years! Have spent a small fortune! I have been treated with two blood patches which were successful however, I now feel the pain slowing increasing. not only that but when I drink more than one glass of liquid I get knee dropping pain, (as if my head is going to blow) on the top of my head. does anyone have these symptoms or do I need to look another direction. It took me researching my symptoms which all leaded to a chiari malformation before I was diagnosed. The pain was unbearable. there is not much of a life with this!!! any suggestions will be helpful!! thanks much!

Serendip Visitor's picture

did you find out what was causing pain from drinking liquid?

I got pressure in the head off and on but no pain
(dizzying and accomanying neurological problems ..numbness/weakness here and there)

but yEAH when I drink Water the pressure goes uP!

if you can can you email me at c40179@aol.com

chris

btw.. i ThinK MILK makes my pressure go down though ..whole milk with the fat.
(I was originally drinking alot of that because the other porblems I got are all involving getting overexposed to chemicals so i was hoping maybe it'd help grab toxins ...now i'm just thinking it's maybe thickening the blood??
(really fragile now with chemical sensitivity)
(milk and eating pretty consistantly has helped)

Julie Bartlett's picture

CSF Residual Ear Symptoms

Wondering if anyone has continual ear symptoms as a result of a CSF leak? Ears constantly have a vibration and underwater feeling after a year from the initial leak. Get headaches everyday, not as severe as the first headaches diagnosed as a CSF leak. Thanks for any feedback!

Serendip Visitor's picture

Ear Leakage

Hi there,
Just to let you know, I get ear leakage all the time because I let it get out of hand. Well, I didn't my doctor told me I had migraines for years and had a "bad back". For years I had this. Also always have fluid behind my ears and my eyes. Sometimes I leak from every orphus of my body! I also have csf leak in my head and in my spine. The hardest part is getting the doctors to believe this. Wet sensations down my spine and in my head. My only issue now is I had back surgery in 07 (don't do it with this disease) I cannot stress that enough, I got SO much worse after the surgery, I felt great at first but few months later. Forget it! It all went down hill after that. I now have csf leaks that are above and below my scar where they took the bone out and you want to talk about pain! I am finally at a doctor who FINALLY believes me after 3 1/2 years and is now setting me in the right direction. I am 51 and I have been suffering with this for 20 years and I am just now going where I need to go! You talk about long overdue! If any of this sounds familar to anyone please post me back to stay in contact. Forgot that I also have vertigo, ringing in my head 24/7 (learned to block it out) constant pain, vision problems, leaks everywhere, I now have neurological problems due to this disease and you would have thought the TWO neuro's I saw would have found this!
I DO NOT have much faith in Doctors anymore but I gave it one last shot and I think I am on the right trac. Keep going...Keep pushing forward and you will get somewhere also! Last but not least...if you have children....watch your kids for symtoms....mine are showing the same symtoms and they are also under work up.
Good luck
God Bless

Jill J's picture

Residual Effects of SIH

I, too, seem to have residual effects from the SIH. My ears often feel 'plugged' and I occasionally get headaches that pound or 'whoosh' in my ears. I'm guessing it's all related to the SIH but really don't want to go through more tests. A couple of months ago my pounding headaches got worse with my ears feeling extremely plugged and my stomach upset and I was dizzy. The pain is not the same as the headache I had originally when I couldn't stand up, so I don't know for sure if it's related. Excedrin Migraine has become my friend...probably because of the shot of caffeine. Anyone else finding residual effects like this?

ashley's picture

Postdural headaches??

Hi,
My name is Ashley. I am 25 years of age. I have had three lumber injections in the L-4 L=5. My last injection went wrong. I guess the third ones the charm. Yeah right. Well for some reason this injection took much longer than any of the others. He nicked something cause right after that my legs and back were tingling and hurting very very badly. So bad I started crying and he gave me another dose of lidocain to help numb it up. So he continued and hit something again. I have no idea what he could've done, but it hurt so bad! He had to give another dose of lidocain again! Well finally i couldn't feel much but was still in pain and was holding my breathe for the longest time cause I was so scared what would happen next. Finally it was over. Well, when i got home bout 30 min later I had the worst headache ever! I am not one for headaches or migrians but I couldn't do much of anything but try and get some rest, but I couldn't really sleep either. Well I took a hydrocodone to help with the pain in my back and head, but no help. Now this has been going on now for almost three weeks now. I have been out of work and have used up my sick days and vacation days. The doctor didn't want to give me a blood patch cause my headache didn't go away all the way when I laid down. So now I am seeing a neurologist and waiting now for 1 1/2 weeks for a mri on my neck and head. I don't know what else to do. Sometimes it starts feeling better and I think I can do things like wash clothes or dishes and then suddenly it comes back. I just don't want this for the rest of my life. Any solutions or opinions?

Thanks, Ash

Eliza's picture

CFS Leak

I am so glad i found this site. I to have had a CFS Leak for many years. Yes it was leaking through my nose and into my throat. I couldnt lie flat as it would drip into my throat. My life has been turned upside down. 2 years ago after complaining to the medical profession about my dripping nose which i had for such a long time, i finally collapsed and was rushed to hospital. I remember my head being so sore, i couldnt stand the light and couldnt stop vomitting. I was diagnosed with a CFS Leak and on top of it Acute bacterial meningitus. They told my husband i was going to die as bugs had got in through the hole in my nose( CFS leak) and was attacking my brain. I servived that and was in hospital for 2 weeks and then sent home to recover there for 3 weeks. As the leak had stopped the doctors assumed the leak had healed it self. Finally i went back to work, still getting headaces and also i had no sense of smell. Then 10 months down the track my leak appeared and again i came crashing down with CFS leak and acute bacterial meningitus, and back into hospital. My life changed so much, do to my ill health i lost my job and almost lost my husband. It has been 1 year to the day that i had the leak fixed. It feels like i have being living a nightmare and its great to know that i am not alone suffering.I dont understand how I got a CFS Leak. What sort of job do you have to do to get this. Can someone please help me undestand how this has happened. Is there anywhere or place i can read more about this CFS Leak. I would be so greatful to any information i can get.

Sandra's picture

Hi, I had a CSF leak in 2006

Hi,

I had a CSF leak in 2006 that drip from my left nostril. I went to see an ear nose and throat doctor that sent me to see an Otolaryngology to repair my leak. I had the surgery where he went thru the nose to patch up the leak. This was a spontaneous leak I have never had a head trauma or surgeries. After the surgery I was sent to see a neurology doctor to check the pressure in my Dura. I was told I tested negative for extra pressure.
I do have headaches quite often in which I thought was related to high blood pressure since it seems like my vision was blurry also.

The weekend of Thanksgiving of this year after shopping on a Saturday I had a really bad headache in which I lied down to relive the pressure on my head. I noticed a stream of fluid coming from my right nostril. It has been running at night every since that weekend. My mind told me to go back and see the Otolaryngology and sure enough it was spinal fluid coming from my nose again. This is the 2nd time that I have had a spontaneous CSF leak from the nose. It’s hard to deal with this cause no one seems to know why or how to prevent this from happening. It’s clear this a very rare condition I’m not happy to see other in the same boat as myself I just would like to know any information that someone can share with me that my help me in my situation. I have never had a blood patch of anything for that matter with the neurologist. I don’t remember any kind of blood work with my neurologist. My primary care doctor thru this whole ordeal has been the Otolaryngology. I’m thinking before I go back to surgery I need to visit with a neurologist. Is there anyone that can identify with my illness coming from the nose? I pray that God will reveal a treatment of this illness. I think the scariest part of all this is not knowing

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.
Best
Belinda

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

CSF

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?

Post new comment

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