CSF Leaks and Spontaneous Intracranial Hypotension
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Biology 202, Spring 2005
First Web Papers
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CSF Leaks and Spontaneous Intracranial Hypotension
F Michaels
Spontaneous Intracranial Hypotension (SIH) is a condition where a patient gets postural headaches due to a leak of the Cerebrospinal Fluid (CSF) in the spinal membrane. (1) What happens is that the leak causes low CSF pressure within the nervous system, and thus causes a constant string of headaches to the patient. The problem with SIH is that it is very hard to diagnose and there is not a great deal of information on why it occurs. In 1995, a study showed that only one in fifty-thousand people in Minnesota had SIH. It also showed that SIH was more common in women than in men, and that the condition usually developed while the patient was between 40 and 60 years old. (5) When first researching this condition, my two main questions were: Why does it develop and can it be cured? In order to answer these questions, one must first examine how CSF runs through the body and the specific symptoms of SIH.
Cerebrospinal Fluid is formed in ventricles of the brain. It moves through the ventricles and leaves the brain at the base, underneath the cerebellum.(2) Then, the fluid moves into the spinal cord and the nerves, and finally returns to the brain. Throughout this time, the CSF is moving through a membrane, called the dura that surrounds the brain and spinal cord. The condition of Intracranial Hypotension (IH) develops when a rupture occurs in the membrane. Thus, the CSF leaks out of the dura, causing a dislocation of the brain downward and "pressure on pain-sensitive structures."(5) IH can develop as a result of brain surgery, spinal surgery, or any major trauma to the head. (3) However, as in the case of SIH, the rupture can sometimes occur spontaneously. In other words, there is no known cause for the rip in the dura. Some doctors speculate that the spontaneous tear is due to the initial weakness of the dura, or a traumatic event that went undetected; however there is not a great deal of information on this subject.(5)
The principal symptom of Spontaneous CSF leaks is headaches. The headaches only occur when the patient is upright, and gradually disappear when the patient is lying down. In most cases, the headaches gradually increase from the moment the patient wakes up in the morning. However, in other cases the headaches are quick and severe. The acuteness of the headaches varies in each case, which affects how quickly the condition is diagnosed. Some of the related symptoms of SIH are a loss of hearing, tinnitus, vertigo, stiffness of the neck, nausea, and even vomiting.(5)
Since the primary symptom of SIH is constant and severe headaches, it is often misdiagnosed. Unfortunately, misdiagnosis can increase the painful treatment for other conditions that imitate SIH (such as Chiari malformation) as well as the possibility for early treatment. In a study done by Dr. Wouter I. Schievink between 2001 and 2002, he found that 94% of patients who had SIH were initially misdiagnosed when they visited a doctor about their symptoms.(4) Some of the common treatments due to misdiagnosis included craniotomies (surgical incisions in the skull) and cerebral arteriographies (a procedure that uses an injection of dye and x-ray images to examine arteries in the brain). More than half the number of cases of SIH has been reported in the last decade.(5) Therefore, because SIH is so often misdiagnosed, it is not likely that there has been a drastic increase of the condition, but rather that more cases of it are being correctly diagnosed.
In some cases of SIH, the condition disappears as spontaneously as it appeared. Mild cases can be cured through a general increase in fluids, especially caffeine, and lots of rest. However, more serious cases will require a procedure called the epidural blood patch. This is a procedure where autologous blood is injected into the patient's lumbar spine. The blood travels through the spinal cord, finds the rupture in the dura, and clots the rupture. Success of the epidural blood patch in patients with IH can usually be determined immediately after the procedure. If it is not successful, the procedure can be repeated several times with a larger amount of blood injected (no more than 30 ml) and in many cases can lead to a permanent closing of the torn dura. (5)
However, in more severe cases of Spontaneous Intracranial Hypotension, the epidural blood patches that are injected into the lumbar spine are ineffective. At this point, an effort to locate the exact position of the rupture in the membrane can be made and then another epidural blood patch may be performed at that location.(5) This location-specific procedure is more effective than a regular epidural blood patch, and should cure the condition. However, there are a few cases where even this procedure is not successful. Further procedures to resolve the issue include an injection of fibrin glue into the specific location of the rupture and (in the most persistent cases) even surgery, both of which seem to cure the condition.(5)
In conclusion, Spontaneous Intracranial Hypotension is a very rare type of a Cerebrospinal Fluid leak, but unlike other types, it does not occur due to any specific traumatic event or surgical procedure in the nervous system. Although there is not much information on the possible causes of SIH, it is suspected that an intrinsic weakness of the spinal membrane or an abnormality of the brain structure causes the rare condition. The symptoms of SIH are so small and so common, that it can often be misdiagnosed. Therefore, the condition of SIH, although thought to be very rare, is probably more likely than one might think. So how can someone prevent SIH? Is there anything a person cando to prevent the rupture of the dura? Unfortunately, there is no clear answer because very little information exists as to the primary cause of the tear. All one can really do is avoid brain surgery or any head trauma that could trigger the onset of regular IH. Hopefully, as more observations are gathered about Spontaneous Intracranial Hypotension, the causes of it will be identified and the ways to help prevent it will become more apparent.
References
1)Abstract of two cases by T.A. Rando and R.A. Fishman, general information on SIH
2)Discovery Health: CSF leak, general information on Cerebrospinal Fluid leaks
3)University of Maryland Medical Center, general information on Cerebrospinal Fluid leaks
4)Archives of Neurology, Abstract of a study on the Misdiagnosis of SIH
5)Medscape: Spontaneous CSF leaks, A review by Dr. Wouter I. Schievink
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
CFS leak
I had suregery for a discectomy in nov 2004. I have had a CFS leak 2 days after my surgery. I was sent home the same day as my surgery as they had no hospital beds. Two days latter I was sent back to emergency room, tested positive for CSF leak. I layed in emergency room 2 days with no meals, had to hobble to the rest room. It is now 2008. I think the leak was never "fixed" and I can't get Kaiser HMO to take me seriously. I wake up with migrains, feel nausea, lower back feels like it is on fire at times. I now suffer from dizziness, sinus trouble, sleep apnea, my head and neck make "crakling" noises when I move, had 2 sezures at home alone. Also numerous episodes of the room spinning when I open my eyes. I need help and can't get taken seriously. I am now on disability.
similar thing
I had an epidural that lead to a CSF leak. I had one patch that didn't work. I have everything from double vision to hearing loss. It even caused one little parking lot accident. Every doctor I've seen except one litterally won't treat me. (The CSF leak was caused by a seriously botched epidural that caused an anesthetic toxicity that almost killed me). No one will run a test, because it will emplicate the guy who did it. (Although - I'm not even suing!!!) If your CSF leak was caused by someone you won't get help in state, you'll have to go out of state. I did see one honest neurologist that told me to go to the Mayo clinic. You may want to look at that. Good Luck!
Have your doctors
Have your doctors consider/rule out a few other things:
1.Connective tissue disorders (if positive avoid LP's)
2.Tethered spinal Cord (low lying conus, Lumbar)
3.Cervical Instability
DO YOUR HOMEWORK research the above and ACM
Any of these (plus hypo and hypertension) can cause a chiari malformation, ask radiologist to look specifically for herniation many ACM's are missed first reading. If positive you still have to find the cause. Many chiari's do not require surgery. Check the above and consult a Chiari expert before any surgery. Don't mess around, the longer you wait the worse it gets.
(2 posters above have a bad Chiari)
Several years ago, I was
Several years ago, I was shopping when I felt a 'burst' in the back of my head...lower left skull. I assumed that I had had an aneurism and that the burst, or gush of liquid inside my head was blood. I had several tests, and no diagnoses was given at the time because tests came back negative. For the following 8-10 days, I was unable to get up out of bed because standing up was excrutiatingly painful. I got up twice per day...both times to use the bathroom. I would run to the bathroom, lie on the floor for a few minutes, get up to use the toilet, lie on the floor...then make it back to my bed. In a reclined position, my severe headache mostly subsided.
After much research and news of a relative with a severe positional headache following a spinal tap, I came to realize that what I had was a case of spontaneous spinal leak.
CSF leak
I had a CSF leak when my son was born, 9 years ago. It was due to an epidural and my vertebrae was shorter than average, so they punctured too far. I was in pain for about a week--headaches, stiffness, sensitive ears. I got a blood patch done about a week after he was born and I thought all was fine. The headaches immediately went away and never returned. But my hearing loss has never returned to nornal...is there anyone out there that has experienced this? I didn't notice the hearing loss because it was gradual. Also, the ringing has never left either. I now wear hearing aids, I'm only 36 yrs. old. My right ear is sever loss and my left is moderate. If there is anyone out there that has any ideas on if my hearing loss is treatable, I'd appreciate a reply or response. I didn't realize till now, explaining my hearing loss to my chiropractor that it could be connected. I've not asked my doctor as of yet, since I just thought of it today. (I will be giving them a call soon). I'd appreciate any positive comments. thanks....rustiemom@gmail.com
spontaneous intercranial hypotension
I am a 46 yr old woman and i started having reacuring headaches in feb,2007,i went to the optitions and was given clean bill of health for my eyes,my headaches came and went,then in may 2007 i had severe migraine headache i spent 3 days in dark room, i went back to work and within a hour of working the migraine headache was so intent and severe that i collapsed at work, i went to the emergency Dr's he diagnosed an inner ear infection,the next day i visited my own GP and he put me in touch with a nurologist,i had an MRI scan and he diagnosed SIH as i have never suffered with migraine before, since then i have had two lumber punctures, MRI's with contrast dye,caffine infusion, blood patch,isatope cisternogram, with no outcome i have just had a ct mylogram with MRI scan and am awaiting the results of this test.I still have migraine like headaces on a daily basis when i am standing or moving around i have ringing in left ear, feeling of nausea, and constantly feel the room is swaying and spinning when eyes closed, and need to wear sunglasses in daylight, when headache at worst it feels like my brain is being pushed down into my neck which then makes neck feel stiff. Hopefully the tear will be found soon and i can get back to normal in the last 10 months i have lost my job and am now on benefits as i can not work i feel phisically dissabled by this illness
Spinal Fluid Leak
Hi, my husband came down with mengentis in 1995 and again 6 months later. The doctors determined he had a spinal fluid leak when he began leaking fluid out of his nose. The test they did to find it was they injected dye into his head and then put him on a tilt table upside down and the dye went straight to the leak. He then had brain surgery to fix his skull which caused the tear in his dura. He suffered from headaches for a year after but that was due to the meningitis. I'm not sure what the name of the test is but you might mention this procedure to your doctor. I hope the leak is found soon and you get some relief. I know how terrible it is. Take care. Yvonne
csf leak
My sister has been bed ridden for the last month and I have been looking after her 2 children because she has suffered similar symptoms to the ones mentioned above.
Almost 4 weeks ago she woke up with a sore neck and pressure in her head that only reduced when she lay down.
By the next day she was in incredible pain and I rang an ambulance fearing she had a brain tumor or an burst blood vessel?? the only relive she got was from laying flat, any sitting or standing caused vomiting deafness pressure behind her eyes and severe pain in her neck,shoulders and head.
she spent 2 days in emergency then was admitted for tests including 2 lumber punctures that produced no fluid (failed) mri and cat scan.
Eventually after many doctors she was told that she had a spontaneous spinal leak and was given a blood patch. This gave some relief but 2 weeks down the track she is still bed ridden and her job is in jeopardy as well as her children being in my care.
Doctors are now saying she has tension headaches and these can last up to 2 years...They have prescribed Valium to reduce the head pain as well as panadol forte and endone.
I hope someone can help out there as she is only 32 and there is so much more life to live/
cfs leak
I HAD MICRO SURGERY ON LOWER BACK 2 WEEKSAFTER HAD VERY BAD HEADACHES BACK SWELLED CALLED DOCTOR TOLD ME IT WAS OKAY THEY CUT MY DURA I HAVE HAD 4 SURGERYS FROM MAY 07 TO OCTOBER 07 3 TO FIX LEAK HEADACHES NECK PAIN HAVE NOT WENT AWAY I AM 39 HAVE HAD BLOOD PATCH I AM ON MY 3RD MED 4 HEADACHE I FEEL HELPLESS TO GOING 2 THERAPY 4 BACK LEG PAIN BECAUSE SPINAL FLUID WAS PUSHING ON MY NERVE 4 SO LONG DOCTORS SOMETIMES WONT ADMIT TO MAKING A MISTAKE I AM LOOKING FOR HELP I AM UNDER CARE FROM LOYOLA IL DOCTORS NOW THEY SAVED MY LIFE IF A DOCTOR IS READING THIS PLEASE EMAIL ME THE HEADACHES ARE NOT MIGRAINS OR STRESS THEY ARE THE WORSE FEELING IN THE WORLD FEEL SICK ALL THE TIME I CAN LAY DOWN OR STAND UP DOESNT MATTER LOYOLA DOCTOR WANTED TO DO CASE STUDY ON MY TEAR NEVER SEEN 1 THAT BIG I HOPE YOUR SISTER FEELS BETTER HANG IN THERE I HAVE BEEN OFF WORK 4 16 MONTHS NO HOPE IN SITE THANK YOU
I to suffer from proessure headaches...
How is your sister? I to suffer from pressure headaches and also have a lot more of life I'd like to live with my husband and children. Is she doing better?
Way to go sister!
I'm 33 years old and had a Spontaneous CSF Leak 3 years ago. I began feeling really horrible in the afternoons for a few days. Dizzy, nauseated, lots of head pain. One night after I put the kids to bed I passed out on the kitchen floor and woke up hours later, disoriented and unable to call for assistance. I KNEW something was wrong then!
I went to my HMO and got "put off" for weeks. They did scans but couldn't see anything. I was sure I had a tumor or something. My sister, bless her, took my two children and kept them busy. I've always been active and well, and these leaks make you feel SICK. I began losing neuro functions when upright (hearing, cognitive, speech, etc) and decided to check myself into ER. Got tossed from hospital to hospital until I ended up at a teaching hospital in Portland, OR. They did fancy, expensive scans, did another (my 4th) blood patch. Nothing worked. So I went home, had my bed put on blocks into a make-shift Trendelenburg position, and there I stayed for another two months. I finally realized that I was going to have to get more proactive, even in my debilitating pain, and at that point, weakness (I had lost 25 pounds lying there wasting away). So I got the name of a great naturopath in Portland and went to him. He prescribed some things he thought would help mend the dura. I'm not a vitamin-popper, but this did seem to make sense! After all, it's broken, and it just might need some assistance in mending. The other thing I did was to think back to how I might have done this in the first place. I kept thinking about my yoga class, and that damned backward roll you do over your neck. I'm a tall girl, 6 ft, and that position never felt right, in fact it hurt. SO, I concluded that I must have torn my dura somewhere up in the cervical spine area, not lower where they had been doing the blood patches. I had my mom go buy a $5 neck cuff at the pharmacy. You know, the kind you wear after a car wreck? I began drinking tons of water, taking my vitamins, forcing healthy foods down (you have no appetite when you've been in bed for 12 weeks,) and I wore that foam neck cuff.
Well, within 3 weeks, one morning, I woke up feeling fine. I could actually tell upon waking that something had happened. It felt like someone had lifted me from the bottom of the deep end of a pool, back up to the surface. That pressure and pain in the head was gone. I literally couldn't believe it. First was a wave of relief. I cried and cried. Then a flood of fear! What if it comes back tomorrow. It was almost a PTSD thing. I STILL have great fear, three years later, that this could happen again. I don't toss my head around, I don't do anything jarring, I DON'T do yoga rolls!
But it's scary, and I feel for each one of you who is going through this, or is supporting someone through this. Keep your hopes up. Believe you can get well. Try new things. Think in basic terms..... how did I do this? I really think that stabilizing my neck is what allowed the tear in the dura to heal. NOBODY with a medical degree had suggested this, but they sure did $50K work of other things trying to "fix" it. Don't rely on doctors to fix it, they really don't know much about these. Stay calm, nourish your body as best you can, consult with a really good Naturopathic Doctor (ND). You will get through this!
I wish I could support others through this, but it's so rare. I remember being so desperate for information, hope...... anything to guide me. Thank you to all of you who share your stories. Don't forget to post your story AFTER you get well. Those mean a lot to people who are suffering.
possible csf leak
I am a 28 year old woman who has been suffering from lethargy, dizziness, ringing in the ears ect. after a spinal anesthesia. I feel dizzy 24/7 I'm unable to take care of myself or my nine month old son. What I'm living is a nightmare.
No doctor has been able to help me. I read Elissa's story. It gives me hope that one day I will also wake up one morning feeling normal again. I would love to contact Elissa. If by any chance Elissa you can contact me I would for ever be great full.
re: way to go sister
Hello Elissa,
I read your comments and am interested in what your ND doctor advised you to take as far as supplements.
I am 36 years old and was diagnosed a few weeks ago with a spontaneous CSF leak and have had 2 blood patches (one was to fix the lumbar puncture done to check for meningitis).
I still have a constant headache but it is less severe.
I want to be 100% and also start driving again.
My neurologist is suggesting a third but with a marginal improvement from the second I am scepticle am want to look into anything that will help.
Your feedback would be appreciated.
Thanks,
Re: way to go sister
I am too trying to get the same information from Elissa on the naturopath or remedies he prescribed. Any word yet?
I would greatly appreciate any info.
Mary
CSF leak
Hi there!
It's been quite a while since you posted this, so I don't know if you'll get this response, but I would love to ask you some questions.
I have had a post lumbar puncture headache resulting from a myleogram for 8 weeks now. I had a blood patch on day 3 which took the headache away immediately but only lasted one day, and a second blood patch at week 6 which didn’t work, and actually immediately exasperated my symptoms.
I've seen two neurologists about this. We've ruled out a secondary headache, spending four days in the hospital receiving doses of DHE (a massive migraine medication). I had also spent another three days in the hospital the weekend before receiving fluid IVs. None of these treatments helped my symptoms at all, and they are still very positional.
I had an MRI of the brain with and without contrast which ruled out any major complications (i.e. subdural hematoma) and did not show menigeal enhancement. Based on my MRI, one neurologist I saw recommended a conservative approach of waiting this out, in the expectation that my dura will eventually heal. He did say if it got worse to go in and try a 3rd blood patch (perhaps flouroscopy-guided) before I did anything more invasive.
However, another neurologist I spoke to wants to do a myelogram to test the pressure of CSF and attempt to locate the leak. I am extremely leary of doing yet another lumbar puncture right into the dura, which could result in yet another leak.
I have done a lot of research online regarding all of this, and my personal thoughts are in alignment with the more conservative treatment. It seems as though sometimes more lumbar punctures can result in more leaks, and blood patches (and even surgery) don’t always heal it. I really want to wait and see if this thing will heal on it's own.
Reading your story gave me so much hope! It is one I am holding on to with dear life and keep coming back to read every few days for inspiration.
Like you did, I am lying FLAT (only up to use the restroom), drinking tons of water (and gatorade), popping vitamins (amino acids, vitamin B complex, vitamin C, MSM), eating a lot of protein and healthy foods (even though I don't have an appetite), keeping up on my caffeine, and have an abdominal binder on. I have been doing this for 2 months now... (I also just started on a steroid pack this week.) I keep hoping all of this is going to help heal my dura soon!
I have noticed an improvement of my symptoms over the past few days, which I'm hoping means this thing is healing up. However, over the course of this I've had two different peroids of improvement which resulted in two set-backs because I think I tried to push it too fast. (I went for a ride in the car, which made me much worse both times and took a week or so to recover from.)
SO this time my plan is to STAY FLAT until it's gone. (I guess unless it just doesn't heal and I have to take more aggressive measures...?)
I guess my question is this:
Did you ever have peroids of improvement where you thought you were getting better only to result in set-backs? Were your symptoms fairly constant or did you feel an incremental improvement over those months? What did those last 3 weeks feel like? Were you a little better each day? Or was it more like each week you noticed you were a little better? You mentioned that one morning you woke up feeling fine - you knew something had happened. Was it a severe contrast from the day before? Or did you have a feeling you were gradually improving up until that morning? What were your symptoms like during those last 3 weeks? (when you did get up)
If you wouldn't mind responding, it would be SO INCREDIBLY helpful! As you know, this is a very difficult thing to go through...
THANK YOU for your time and encouragement!
Mindi
Spontaneous Leak
I am just recovering from a spontaneous CSF leak. I, too, had all the symptoms described above - nausea and vomiting, dizziness, severe pain in my neck and the back of my head, achy shoulders and upper back, loss of hearing, and a soft flushing sound. At times it sounded as if I were inside a conch shell. The headache was postural: fine when I would lie down, but crushingly painful when I would sit or stand. I couldn't work; I had to lie flat for 3 weeks. Two days ago, thanks to an MRI, the leak was found. Just yesterday, I received the blood patch and am on the road to recovery. At this point, I am most interested in finding out why this happened, so that I can try to prevent it from ever happening again. One doctor told me it can happen just by lifting 30 pounds. Another doctor said that there is a 30% chance that it will happen again. I would like to know how to strengthen the membrane and whether I can take any other actions to help prevent a return of this condition.
Support Forum, Research, Knowledge, Information
If you have a leak or suspect a leak and want to learn more about them, talk with other leakers, get good research, find out others experiences, etc. This board is a great tool and full of people who are sympathetic as most of them are leakers themselves!
Brain Talk Communities - Cerebrospinal Fluid (CSF) Leak
http://brain.hastypastry.net/forums/forumdisplay.php?f=126
If you can't link directly or cut and paste addy to get there; do a Google search for:
Brain Talk Communities - Cerebrospinal Fluid (CSF) Leak
Bubbling sounds at base of skull
Has anyone else had strange bubbling or wooshing sounds at the base of your skull when laying down and it seems like it is loud enough to be audible to others around you? Mine feels like it's going up into my skull. Do you get headaches shortly after the fizzing? Anyone?
CSF Leak with fluid constantly going down THROAT
Severe constant headaches for months with the CSF going down her throat. Nausea & Dizzyness, etc. etc.
Was admitted to headache clinic for a week and concluded it was CSF but didn't suggest surgery. Said it would heal on its own. Not one person or article has talked of the CSF fluid going down the throat. (Only out nose or ears.)
Need help!
Intracranial Hypotension
In March of 2007 I had a hip replacement at a very well known hospital
in Illinois. I am a nurse in a family practice office in Indiana so I
felt very fortunate that my insurance would cover my surgery at this
facility. Three days afyer the surgery, which went very well I developed
this horrible pain in my head at about 11 on a 1/10/scale. I was discharged
and ended up hospitalized locally in Indiana. I had two blood patches with
no relief so my doctor felt I should see a neurologist. He ordered several
tests and they discovered a small aneurysm in my head on a MRA scan. I was
again referred to another hospital in Illinois. That was in May of 2007 and
my life has been a nightmare ever since the hip surgery. I spent all spring
& summer having angiograms,cat scans, mylegrams and being bounced from one
Dr. to another with no answers. Some of the Dr's felt it was the aneurysm
and some did not. After trying numerous meds with no relief it is now 15 months
later and I have not had a day without pain. I had just about given up when my
boss who is also my family Dr. suggested I see another neurosurgeon locally.
I did not want to see any more Dr's especially since some of the Dr's I have
seen made me feel like I was crazy. I am not critizing the Dr's in Chicago
but it is so ironic that a local Dr. seems to figured out the problem. I hope.
He is sending me to a neurosurgeon at Mayo's. He said immediately that he felt
it was intracranial hypotension caused by my epidural. I am so tired of being
in constant pain, this has totally changed my life. I cannot do any of the
things I used to do and work is becoming more & more difficult. Until he told
me about this condition I didnt know there are other people suffering with this.
I am praying this trip to Mayo's will solve my problem.
Paula
"your pituitary tumor is not causing your headaches"
In Dec 2007, I started with a bad chest cold and sporadic tiredness. Family GP threw meds at me and after the prozac and xanax treatment, i switched to Internal Med. 2 days before the appt with my new doc, I felt an explosion in the back of my neck. about that time, I had a VERY sore neck and then the postural headaches started. she checked me out and ordered a CT, which found a pituitary tumor. Then I went for an MRI to size-up the tumor (10-12mm). Labs were run and the mass "was not affecting me chemically." i have seen an endocrinologist, a neuro-opthomologist and 3 neuro surgeons. luckily the 3rd neuro surgeon figured out that I must have a CSF leak. He ordered a brain MRI (lying down) and a lumbar puncture (opening pressure 16 - should be between 12 and 20?). I am trying a neurologist and just had a cisternogram (over 3 days), which showed nothing, even though I cried when I had to sit up for hours before the scan, to aggrevate the leak. The neurologist has put me on prednisone, amitriptyline and celebrex. he encourages bed rest and well, he's just not sure. i am 35 with a 5 and 7 year old. i have been home from work 3-1/2 months now. is the leak related to the tumor? will this heal by itself? will it happen again??
Spontaneous CSF Leak
I was in Iraq in 2006 when I woke up to most unimaginable headache. I thought I got shot in the head. After a week in a combat support hospital, a CT scan and spinal tap, I was shipped to Germany. MRI in Germany, but still no diagnosis. The pain upon standing was still severe and vomiting. Then I was shipped to WOMACK Army Hosptial and more MRIs. After weeks of hospitalization and not being able to stand or bearly sit up I begged to go to a civilian hosptial. After only 20 hours in UNC I was diagnosed with a CSF Leak and given a blood patch. Not sure if it was the patch or 40 days in bed, but it gradually subsided enough for me to leave the hospital.
Two years later I still have headaches but nothing like the intial onset of the CSF Leak. Neuro doctors are trying some meds but no relief yet.
spontaneous CSF leak
I was diagnosed with having a spontaneous CSF leak and received an epidural blood patch in January, 2008. I suffered from excruciating headaches and nausea for 2 months prior to being properly diagnosed. I did not previously have a lumbar puncture or trauma (except for car accident 14 years ago) which lead to the leak. MRI's determined there was a leak but could not determine the location of the leak.
I continue to be plagued by headaches (exertional - i.e. bending down, getting out of a car, as well as severe headaches) which lead me to investigate further on the internet. My last bad headache was just last week, a doosy lasting 6 days - I almost ended back in the hospital due to the intensity of the pain. Tylenol #3 helped take the edge off. I am learning to live with the "new normal" - my memory and stamina is not what it used to be.
I am my neurologist's first case of spontaneous CSF leak and he had declared my case resolved due to my latest MRI in April, 2008, although I am not 100% back on my feet, I am functioning and back at work full-time. I don't think my doctor knows what else to do with me.
I had enquired whether I could be part of a study group, to which my doctor answered negatively, saying there wasn't enough patients like me. I wonder if I could be of any interest if you are aware of any study groups so that perhaps my case may help others, and vice versa.
Sophie
Headache in the back of my head
Yeah i have been sick the last couple of days, and i was in the bathroom vomiting and all of a sudden i had a really sharp pain in the back of my head, like somting bursted in the back of my head. I dont know what the problem was. I ended up trying to sleep it off. I woke up and it only hurt a little bit. I can still feel it right now. I was wondering if anyone knows what the could of been, And to see if i am safe. Thank you
Spontaneous CSF Leak
3 weeks ago today, my wife was taking a shower and had an instantaneous, extreme headache come on. She is a tough one and continued with her regular schedule for the next 3 or 4 days. The headache was classic for this condition we are discussing...goes away when spending time horizontal (sleeping, etc) and would return with varying severeness once she got up and about. As with most others on this thread, she had no previous history of headaches other than a periodic one that could be knocked down with some OTC meds.
On the 4th day of the headache I had her go to the Doc. He checked her out and sent her to the ER for a CT and to check for menengitis (sp?). Both were negative and we went through the next weekend praying for some relief. After a couple more days, we went back to the GP who sent her down for an MRI of the head and neck area...nothing. The GP then got her set up with a neurologist the next day (Can you believe it?) The neuro immediately diagnosed her with the low CSF condition and ordered another MRI and put her on strict bedrest. 3 days bedrest and no headaches, the doc told her to try a "normal" day...headache returned.
They scheduled her for a "broad area" Epidural Blood Patch 3 days ago...the headaches seem to be gone although she has suffered EXTREME back pain since--it now seems to be subsiding.
Many of the stories have made me quite sad to read...it seems the docs are only now really getting a good handle on diagnosing and treating this condition. We have been truely blessed to have had to deal with this for "only" 3 weeks.
Our best to all...
I too suffer from head pressure
How's your wife doing? I too suffer from head pressure and soon will be seeing a neurologist. Is she headache free? Where there any consequences?
I pray to God your wife and I soon find relief.
Hi Gary, I had my blood
Hi Gary,
I had my blood patch done in January 2008. The doctors (neurologist & anesthesiologist) said I would be back on my feet within 48 hours. Well, the tenderness and rigidity in the back lasted a month- car rides were difficult as every jolt would jar me. Even though an April 2008 MRI declared me as "resolved" I still continue to have the neck pains, movement headaches (i.e. every time I got out of a car or bent down it would take a few seconds to stabilize) and severe headaches still.
My doctor doesn't know what to do with me as I am his first case.
Is your wife better now. I am learning to live with the new normal but am still figuring it out.
Working on a 3rd patch
My wife went in for surgery on her back. Long story short, she is on her 3 CFS leak. The last was only a week ago and she woke up the next morning after her 2nd patch with another leak. Her nourosurgeon has never even tried a blood patch. Is it something I should bring up to her doctor or is his feeble attempts to derm patch fixes the only option? Pls respond soon. TY and best reguards to all of you suffering from this and similar situations. God bless you all and thanks once again.
Re: Working on a 3rd patch
you'll find very helpful information on http:brain.hastypastry.net/forums/showthread.php?t=34819
I hope your wife's situation will resolve soon.
mary
SIH
This occured to me in 2002 at age 45. I woke up one morning with a very severe headache and what seemed a very sore neck. The Dr assumed it was a muscular strain in the neck and had me do neck excercises which only made things worse.
I tried to work but after a week of severe pain I developed double vision and ended up in the hospital where I had a CAT scan which revealed nothing. My wife insisted that I go see my opthomologist who referred me to a nuero-opthomologist. He immediately diagnoised the problem and after MRI w/ contrast was able to confirm the leak. Six weeks of bed rest and I returned to work. After a few months the double vision went away and I was good as new.
I see many of you have had far worse experiences than I and I feel extremely lucky to have had it diagnosed in 2 weeks time as opposed to some of the above ordeals. Best of luck to all.
Spontaneous CSF Leak
I have a Spontaneous csf leak that started in march of 08. I woke with what i thought was a runny nose,but have since found out that it is a csf leak coming out my nose.I didnt have what you call a bad head ache untill they started tests to find were in my head the leak was coming from now i have head aches,havent got answers yet hope to on monday. Has any one else started with a csf leak this way?
SIH Diagnosis
My severe head pain started late February 2008. At the time I had a sinus infection that my General Practioner (GP) treated with antibiotics. After antibiotic treatment my severe head pain remained but sinus infection went away. I was sent to ENT to see if I was a candidate for sinus surgery. ENT after several visits and CT scan of sinus said my head pain was likely not sinus related. I was sent to neurologist who performed a sleep study and said I had sleep apnea. I also was searching the internet for severe head pain and all web sites were about migrains, tension headaches etc. but no reference to SIH. This was all I could take because my head pain was severe and so bad on some days I had to miss work (I do a great deal of traveling by air). I insisted my GP do a spinal tap to see if I had a brain infection. He also ordered an MRI without contrast of my head and neck. All tests were negative. I then insisted my GP refer me to Mayo. I arrived at Mayo on June 4th and they did an MRI with contrast and found the problem (SIH). It only took 2 days. My brain was sinking in my skull and I had two areas of fluid accumulation on the top of my brain. Next Mayo ordered a meylogram (dye injected into spinal cord with CT scan) to find location of leak. They said once it is found, they could do a blood patch or use fibrin glue or surgery as last resort. Meylogram showed no leak in visible part of spinal cord but there was a suspicious area in the part of the spinal cord inside the brain. I met with a neurosurgeon at Mayo to review meylogram results and he said they cannot do a blood patch or surgery in that part of my spinal cord as risks outweigh gain. I go back to Mayo on July 28th for a cisternogram with pledgets. If the leak is indeed in the brain, Mayo will try a general blood patch (however they indicate it generally is not successful unless blood can be injected at the site of the leak) but it is worth a try. In the meantime I was ordered to seek bed rest for the next 6 weeks to see if it heals on its own. The last two days I have developed nausea, and numbness in my left arm and leg. The severe head pain, sore neck, sore eyes and loss of hearing remain even when lying down. My heart goes out to all of you currently suffering from SIH and for those who have suffered and recovered. It finally felt good to get a diagnosis but I am still searching for my own recovery and I hope it comes soon as I cannot continue to live this way. Has anyone been given medication for pain and nausea that has worked? My pain killers are ineffictive.
csf leak
I am so thrilled to have found this site! I am a 50 year old female. About 15+ years ago I went in to my family doctor with a severe headache, neck pain, sensitivity to light. My eyes felt sunk in my head and I could only describe the pain as incredible pressure. I also had severe pain and pressure in the base of my spine. My family doctor told me he believed I had meningitis and they sent me home. That in and of itself seemed strange to me. I had had years of lower back pain and difficulty sitting but had broken my tail bone when I was 16 and assumed that was the cause. I had never went to the doctor and felt something must have healed wrong. About 12 years ago I was going on a girls weekend with friends from high school and was getting into my SUV and told my girlfriend I got an instant headache. It continued to get worse and worse as the weekend went on. When I got home I went to my family doctor and was told I had a migraine. I knew I didn't and someone suggested I see a back doctor. I did and he sent me over to the ER immediately as he suspected a subarachnoidal hemorrage. I had a CT scan and spinal tap. I told them that by sitting I could make the pain worse and that while on the golf cart and bouncing, I thought I was going to die or at least I wanted to. Nothing was found and I was sent home. Two days later I went to see the neurologist I saw in the ER and couldn't even stand in the lobby of his office. I told them if they didn't get me to a room I would have to lay on the floor of the lobby. After my neurologist saw me he ordered a bed and had me admitted to the hospital right away. A week worth of tests and finally an MRI which showed a sacral cyst/tumor. Was then referred to the U of M to a neurosurgeon who did a myelogram CT scan. He determined that there was a spinal leak due to the thinning dura wall where the cyst was. I had a blood patch and found immediate relief. Pressure was still there but I could walk again without having to lay down. My neurosurgeon at the U of M was the only doctor I had ever talked to who even knew anything about what I had. Shortly after I saw him he retired. I have had one other blood patch which helped. I still live with lower back pain at the base of my spine everyday and constant pressure in my neck and head. I too feel that sometimes my brain is trying to separate itself from whatever is holding it in my head and push it's way down my neck. At times my eyes feel as if they want to follow and just seem to sink back in my head. My lower back pain is always worse when the pressure headaches are worse. Nothing compares however to when I know I have a substantial leak which I have had 3 times.
My neurologist was unfamiliar with this situation but I was appreciative at his persistence and willingness to bring in other doctors to help find what was wrong.
Thanks to all of you for sharing your stories and allowing me to share mine. I am so sorry for your pain but am so thrilled that after all these years of feeling so isolated and misunderstood that there are people who understand how I feel. Thank you for sharing your stories!
CFS & SIH
I have had this on going problem SIH, stemming years, always diagnosed as severe migraine headaches, ON 1 Oct 07 i suffered a severe pain and on set migraine which got progressively worse over an hour, i went to hospital ER, where they pumped me full of migraine medication and fluids and anti vomit medication, i got worse, after being there for 30 hours, i was told to go back to my GP, i was worse when i left the hospital, i had to be wheeled out, when i walked in., as there was nothing more they could do for a typical headache.I told them that i felt like someone had bashed me with a 4x2 and the pressure i felt in my head. still the sent me out. It took me 4 days to be able to hold my head up long enough to be able to get to the car and handle the motion of movement with little sea sickness feeling. 5 weeks go by and i am finally able to get an MRI with the help of my GP< with out his help i would probably still be in huge severe pain, after i had the MRI, nothing after that for 3 weeks when i received a letter from the neurologist, who gave me a prescription for antidepressants, saying they do more than work on depression, as i was crying and he thought i was depressed. I was crying because he told me there was nothing more he could do, 1 month later, i am admitted to hospital for another MRI and bloodpatch, 3 months later i had a follow up MRI, which showed a slight improvement, that they are now leaving me for 9 months, AND the headaches i will just have to tolerate. This is not good enough. he is happy to leave me on antidepressants x4 and my GPs regular regime of pills i take, pain x2, headache x2, anti inflammatory x2, anti nausea x1,sleep x2. I have no faith in the medical institutions here in N.Z and i am seeking other medical professionals to take up the challenge of curing me.I am dealing with the head neurologist in Christchurch and don't know where to go next, as all second opinions go through his office. I have also made an official complaint to the health and disabilities commissioner's office. I feel like i am the only person in the world, getting a bum deal from our medical professionals. I feel there is no one out there who can help me, and that i am alone. One excuse we were given in the hospital was that the specialists were still reading and they would have some answers for me... Nothing.
wanting to contact Elissa
Dear ELISSA,
I posted briefly what has happened to me after a spinal anesthesia. I am very much interested in knowing what kind remedies did the naturopath you saw thought would help mend your dura, and if possible if I can have he's info. I am willing to try anything until I can get these doctors to help me out here. Who knows maybe if I help myself in anyway I can my body will heal on its own before they decide to finally help me.
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