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CSF Leaks and Spontaneous Intracranial Hypotension
Biology 202, Spring 2005
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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
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
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Comments
Dr. Gray
She found my leak in the c5 nerve root and performed a blood patch at that site with her ct scanner. I have been sealed and healed for over year
Symptoms after blood patches
In March, 2012 I was diagnosed with CSF Hypotension. My first MRI showed severe depletion of the dura with two hematomas---and hypotension from it all. I had a complete spinal MRI and five of the brain---all with contrast in the MRI's---and ---no leaks found ! Resulted in two blood patches and I am much better---hematomas gone and 85% full in my dura. My condition is what is diagnosed now as "Spontaneous CSF leakage". Since I am better, I am scared to do any exercise at all for fear that I would relapse. Just the expense, lost time from work, and emotional trauma thave been so great, I do not want to risk this again just to get back to exercising. Did Linda Gray find your leaks? My neurologist has talked about Linda Gray, but since I am better from the blood patches, we are just assuming that my leaks were "random" and he asked me not to exercise--just walking. Should I be content with this and be grateful? Or persist and go to Linda Gray and try to find leaks? What changes have you made in your lifestyle???
Linda Gray
You may want to see how your symptoms go and if you start to get positional head pain then seeDr.Gray. Dr.Gray found my leak inmy left shoulder;she was the only one who could find it and now I aminrecovery with reboundhigh pressure going onmonth 2. I walk about twenty five minutes per day and also peruse malls for exercise,that is all at this point.
ICF Hypotension and SCF Leak and Exercise
Will make this short----diagnosed with CSF Leak/SIH-Hypotension and had two blood patches in April of 2012---4 weeks apart and I immediately had relief and my last 4 MRI's, done to document the dura re-filling, have looked good. (75% full as of July, 2012). I drink 5 to 8 sixteen oz G2 Gatorades a day and have become addicted to them. I am so guarded as to the nature of the leak and hypotension because no "leak" was found---simply diagnosed as "Spontaneous" SCF leak. So, understanding that the Dura may never fully heal, I am considering myself lucky. In reading as much as possible, I keep hearing random comments about exercise, which is the only thing I can contribute as a possible cause for me. I walk, had started heavy exercise including weight lifting and lots of stretching and a fitness exercise class in January of 2012. So, then this starts in March and a huge education about what could be wrong ensued. Question---they are now saying to go back to a normal routine---but how much exercise should I do. I would love to have any and all comments about this-----am scared to death to go thru this again, but don't want to give up exercise and be limited to only walking. (I am also afraid to even hit a golf or tennis ball in case that is too harsh). Also, I think it is interesting that so many of the testimonials report that their neurologist had hardly ever seen this. Mine said that I was his second in 32 years and immediately sent me to Emory University where there is a wonderful person named Dr. Ashley Hawk did all the diagnostics and performed my blood patches. Had the BP's not worked, she would have immediately sent me to see Dr. Linda Gray at Duke. Would also love to have a list of exercise(s) that anyone would or would not do because of their experience. I feel so lucky and have such empathy for any one now a "member" of our club---surely no one had ever even heard of it until they heard it about themselves----far too rare, but may be getting more prevalent???
SIH
I too, have been diagnosed with SIH in the past two months, underwent a blood patch with home rest, and then a 4 day hospital visit with a second blood patch followed by complete bed rest. While I haven't had that slamming headache since the second patch, I do feel some of the symptoms returning, i.e. tinnitus, vertigo, nausea. I keep seeing mentions of a group page on Facebook about SIH or some other site, but the URL or hyperlink is always missing. I am looking to join an online support group for this. I am a medical rarity in my local medical community, and since I am rare around here there are no local sufferes to speak with. I am also a 3 year breast cancer survivor. Sometimes I wonder if the toxins in my chemo or the radiation hasn't weakened the dura. So far none of my doctors are willing to test me to see where the leak(s) is occurring. My diagnosis was made by brain MRI with contrast.
anyone on bed rest still getting symptoms except the headaches?
hi C.Saul and other IH sufferers
I have been diagnosed with IH and have been on bed rest for 3 weeks, drinking lots of fluids and caffeine. I do not feel those terrible headaches when I get up since starting the bedrest, but I do occasionally get the dizziness (vertigo), light-headedness, blocked ears, numbness in hands and face, and twitching in face. My first day of bedrest started in a clinic where i lay flat with IV fluid and then stayed for 1 week at home with strict bed rest. The following 2 weeks I've been on bed rest, but I do get up more often.
I wondered what happened to you after you wrote this post as you mention you got some symptoms except the headaches after the 2nd blood patch. I would like to know if by my getting these symptoms it doesn't mean I am not healing, as I do not really want to go through the blood patch road.
Anyone have any advice or personal experience, I would love to hear from you.
Mee too
Started with a slamming headache about a year ago and I thought I was dehydrated, then I noticed a wooshing in my right ear....thought nothing of it but it was weird. Tried eliminating all things out of my diet like caffein and stuff and they were not the problem.....the headaches got worse and then I noticed after a big episode I would have crusty or a wet right ear and then I lost the hearing in that ear...I still didnt connect the dots yet so I went to an ENT and he said my ears looked perfect and sent me to a neurologist who did MRI w/ and w/out contrast of brain and nothing.....then an MRI on neck and still nothing......I am now going to my 3rd Neurologist and I am going to demand that someone even entertain this possibility. Thanks to your articles I am bringing them with me to show the new one..... The headaches are sooo bad I cant even move when in one!
Thanks for writing ......I hope more write me and help me het a diagnisis and move on with my life.
Spontaneous CSF leak
My story began with headaches in February 2010. In 2008 I battled breast cancer and throughout 2009 proceeded with reconstruction. I returned to a gym for exercise after the 1 1/2 years of sedentary life. The headaches became so severe I was unable to return to the gym. I saw my family doctor who thought I might have migraines, but no relief with medication occurred. I also saw a chiropractor, opthomatrist, ENT physician along with regular check-ups from my oncologists. I was also seen in the ER after an incident of vertigo at work, which was so severe, I was transported by ambulance to the hospital. CT scans were normal.
After a year of headaches and searching for an answer, my family physician finally referred me to a nerologist who ordered an MRI. This showed Chiari I malformation and dural enhancement which could be contributed to post lumbar puncture (nope), recent injury (nope) or possible metastasis in a post breast cancer patient . . . OMG!
This neurologist felt it best to refer me on to a more specialized neurologist. First I met with the neurology groups Oncology Neurologist . . . who quickly assurred me it was not metastasis from the cancer because it was too smooth. He then referred me to his partner who specialized in headaches. Then came the series of Spinal MRI which finally showed possible leakage at the C7 (they gave me the impression they were guessing the location). After 3 weeks of searching for an anesthesiologist who would provide the blood patches, I finally met my saviour!
Althought the headaches were not relieved until after the 3rd blood patch, I finally was able to return to some normalcy. I continue to this day with tinnitus, the occasional "water shadow" in my vision and imbalance. During this entire time, I was only off work for one month during the first two rounds of blood patches. I do find relief when the minor symptoms occur by lying flat with slight elevation of my legs.
I live a more cautious life by not returning to the gym, avoiding carnival rides and other types of activity which might cause stress on my spine. Not the most exciting time, but less painful. Of interest, I live in northern Kentucky just across the river from Cincinnati, Ohio, which is well supplied in medical specialists. I cannot imagine how my life would be if I were more rural and didn't have access to "modern" medicine.
arnold's chiari
My question is: did they not do anything about your chiari, i have this and wonder if i have a leak that is causing this. my identical twin has it too
Your leak
If your leak was never found I recommend seeing Dr. Gray in Raleigh, North Carolina at Duke University. She is an expert at finding these leaks using advanced CT technology in a way that no one else does. I hope that you feel better!
I had a CSF leak that no one could find; went through a lot of mystery with migraine diagnosis etc. as well and then discovered I had one too. Dr. Gray found mine in the left side of my neck after a fall that I had at my home.
csf leak
Your stories all sound very similar to my experiences. I won't bore you with all the details but I have a wonderful doctor that has been with me every step of the way, through many surgeries including two craniotomies. Last craniotomy was combined with an omentum flap and 4 1/2 months out I am still leak free! Dr. Ed Hepworth is an otolarengologist located in Denver, CO. He is an awesome, compassionate doctor and I would recommend him to anyone. I also visited with a doctor in Los Angeles who is considered to be at the top of his field but I ultimately decided to stay in Denver under Dr. Hepworth's care. His phone number is 303-744-1961. It takes approx. 3 months to get a new patient consult with him but he is absolutely worth the wait! Good luck to all of you!
Another good doc
LInda Gray in North Carolina is worth the trip. She is at Duke University and found my leak when no one else could. She patched it at the site. Uses technology on her myelograms that no one else uses in the nation!
csf leaks
Dear Friends,
I went to Duke University Hospital and saw Dr. Linda Gray. She is an excellent radiologist who found my leak when other places, including Cedars Sinai, could not; she uses CT techonology to locate leaks so if you have been to another hospital/doctor she is the only one in the U.S. who uses guided CT technology that is more specific at finding leaks. She patched my leak at the site. Just arrived home from Raleigh Durham NC last night. It is worth the visit! Pursue treatment with her!!!
CSF Leak Solved by Surgery
I woke up one morning in 2006 with terrible headaches and neck pain, thought I had slept funny on my neck however the pain was not going away. After a few weeks I went to the doctor and asked for a CT Scan (thought I had a brain tumor), CT scan of brain showed nothing. After additional consultation with doctor we thought maybe I had pulled muscles in my neck so I decided to try physio and acupuncture. Had to stop exercising and suffered pain with anything the jarred my head. Since the pain in my neck was so bad I thought that the headaches had to be related to a neck issue, sometimes I could not even hold my head up anymore. When I layed down the pain eased but I never made an association with being upright vs lying down, just thought it was because I was resting. Even tried 10 session with a chiropractor and must say felt worse after every appt but was willing to try anything and he recommended a series of appts. Then one day, after two years of headaches and up to 14 Advils a day, I got up from bed and it felt like someone was smashing my head with a brick, this is when I went to emergency. Had a CT scan and the doctor thought I had a brain bleed and moved me to the trauma dept with a trauma team as they thought I may crash and need to revived while waiting for an MRI. After the MRI I had a neurologist assigned to my case and he was the one that suspected I had a CSF leak, he had only ever seen or heard of 3 in all his years of practice. He admitted me to hospital and ordered a second MRI the next day. This seemed to be the problem however they were not certain where the leak was coming from exactly but he did see something unusual on the MRI. I had a CT Mylegram done, twice, and they were able to find exactly where it was, just above L2. Went to see a neurosurgeon and spinal surgery was planned. It took six months to get in, surgery took 3 1/2 hrs, not only was there a leak but the myelon sheath on my spine was extremely thin so alot of glue and patching, 5 days in critical care, a few weeks of taking it easy, and six months till I could resume normal activity including exercise and I was back to normal, no headaches or neck pain. It wasn't an easy route to take but to be free of the continual headaches and neck pain makes it worth it. It has now been 3 1/2 years and I have had no issues. It did take some time to realize that when I had a "normal" headache it wasn't a reacurrence, after two 1/2 years solid of headaches it took some time to sort out the difference between a CSF headache and just a headache. Hope anyone that has this issue will also find a resolution.
CSF leaks
Denise,
Thanks for your swift reply! If we have symptoms does that mean that we need another BP or is that only if we have the giant spinal headaches again? Sometimes, I feel discomfort when standing and do when walking in daily life. I could really use to talk to you, can you e-mail me at and perhaps we could talk over the phone? I could use to chat with a person who has gone through this before.
Thanks!
Mary Powell
congenital csf leak and multiple encephalocele repairs
My name is Mary. I am 53 years old. Three years ago I was diagnosed with a CSF leak near the Tegmen. I went to Loyola University Hospital in Chicago and underwent repair of the CSF leaks and encephalocele repairs.I really did not have too many headaches preopatively. My symptoms were more of dizziness, light headedness and a feeling of fullness in the left ear. AN ENT specialist inserted a myringotomy tube in the left ear and immediatley profuse fluid came out of the tube. The CT scan immediately showed the CSF leak. The problem I am having now, is severe headaches on an almost daily basis for 3 years postoperatively. I am seeing a neurologist now, but so far no medication is helping and the headaches are becoming more powerful and on a more regular basis. I understand that I needed the surgery, but I feel worse now than I did prior to the surgery. Does anybody else suffer from the same symptoms that I am having following this procedure? I feel so bad for all of you because there is very little information to be obtained on this matter. I would love some input on what I can do to help alleviate these headaches. My neurologist believes it is cervicalgia that causing them and said this would be a lifetime problem for me.
4 months severe headaches. No diagnosis
Hi all.
So, here is a brief summary. I'm a (was) very active in sports, full time construction job and family man. But one evening after dinner I was hit with an excruciating headache and nautiousness and everything went downhill from there. Now I can barely do anything unless I hunch my shoulders and push through the pain.
I can no longer play racquetball anymore. I used to over 10 hrs a week without a problem. If I work too many days in a row (2) I'm shot for a week. My bp went crazy, heart palpitations, dizziness , blurred vision, sick, headaches, ringing in the ears (sometimes as loud as a jet engine), lack of concentration, memory loss... Doctors thought I had a Chiari but the neurosurgeon said no and threw me out. Then I got a spinal tap and the pressure was less than 5mm so the neurologist said I may have csf. But she wanted to do another spinal tap to confirm since the other procedure was done by a different Dr a couple months ago. This latest one was 18mm so now she is saying that perhaps I HAD a leak but it healed itself. she said that my symtoms are just residual...what the heck does that mean? I have ghost headaches and all the other symptoms??
In the meantime, I still have the same problems. I think something may be leaking out of my nose. But only when I am actively working or doing something strenuous. Is that the only time fluid would leak if it IS that?
My other concern is, could I have a normal opening pressure and still have a leak somewhere? I've had 6 MRI's, 2 with contrast, CAT scans, Sonograms and nothing confrms a leak. the neurologist says its time to just treat the pain since we can't find the problem. I'm not a pill popper and I DID try to make them happy before by trying some pain medications, which none of them worked. I'm disgusted they want to give up so quickly. I know something is wrong. My life is not normal and I suffer 24/7.
Anyways, a little about my crazy stuf and any help on my questions would be great!
Thank you!
Munchkinsdad
CSF Leak
Hi,
Had a confirmed CSF leak following a pituitary tumor removal in 2005. No MRI scans could detect the leak and they won't unless the leak is very active. In my case it was not active. Few drops would leak through the right nostril they entered for the operation and fluid would run the back of my throat when i would tilt my head back. Sample results of the fluid varied. Some were positive for beta 2 transferin some positive for protein, others were negative. None of the numerous MRIs over the years ever detected the leak and it was very disappointing to see the neurosurgeon stand behind the scans and not the positive samples.
There is a very specific headache associated with a CSF leak and can be distinguished vs an ordinary headache. The csf leak headache concentrates on the front part of your head or temple area. The reason I can distinguish it is because during a spinal tap in the hospital over 48 hours, i experienced this specific headache many times and is the type of headache i never had before.
Other symptoms experienced to this day but are not as intense: cannot stand noise, loud people, loud surroundings or strong lights and still feel fatigue after basic physical activities. The past two years I am able to play doubles tennis again for close to 2 hours which was impossible a few years back. But i must be rested for hours before and must be able to lie in bed for at least 2 hours afterwards to recover. I would take short walks for 30-60mins and would feel sick. My face would turn noticeable pale by other people; would get csf headache in the temple area and simply felt fatigue like i had walked all day. Only way to recover was 2-3 hours in bed with pillows under my legs in an absolute silent environment.
Now in your case, if you can remember suffering an injury to the head and can detect the fluid run down the back of your throat when your head is resting on a pillow or see intermittent drops of a clear fluid from your nose especially when lifting heavy items or bend your spine ie when you tie your shoe lasses or any activity that applies pressure to the spine. Carry a small lab tube so you can collect a sample. Back in 2005 they needed a considerable amount of fluid sample, but these days only a drop or two should be enough. Make sure the hospital has a reputable dept of neurosurgery. These hospitals have advanced equipment and experienced staff.
Have had a serious meningitis attack Jan 2012 that took two weeks to recover from. Make sure if you experience high fever, stiff neck and very strong headache to rush to the ER.
Hope this helps.
There is a facebook page that
There is a facebook page that will connect you with many people who suffer from this condition. ..... this is the link otherwise it is under CSF Leaks (cerebrospinal fluid leak) and intracranial pressure...it is an open group and is very helpful toput your questions out there and hear from other leakers....good luck!!!!
CSF
47 yr old Female, whom has had this dis-order for more than a year. I was also told that it was sinus issues. Once I resolved what I thought was sinus issue, I still had serve headaches after having the Blood Patch done and it did not work because the MRI did not show where the leak is located. This is a life style change as you stated and I was also a very active individual working 50 -55 hours a week. ( Not sure if some of the life styles simaliarlities)
So,I am currently looking for a Neurosurgeon with experience with this rare dis-order. So far, I have been referred to Johns Hopkins Hosiptal in MD to see Dr. Moghekar. Dr. Moghekar has some experience with CSF and I have a scheduled appointment with him very soon. If I recieve any additional information, I'll be sure to share it with you. Good Luck , God Bless!
Please feel free to contact me with any information you may have
Relief of Pain from CSF leak
This is my second go around with the horrific pain associated with my CSF leak. What I found very helpful is this. NEVER let yourself get dehydrated! If you have.....immediately drink plenty of fluids and add caffeine. I mix EmergenC with my water for added benefits. Since my brain is essentially dropped down onto the occipital nerve because there is not enough spinal fluid to float....This is why the pain in more horrific when you stand up and alleviates when lying flat. I found the best way to help take the pressure off that nerve while your body is building up enough fluid to re-float your brain is to lay on your stomach and elevate your pelvis with 4 or more pillows or a wedge. Your head is as far below your pevis as possible. This seams to do two things for me. Natural gravity helps reduce the pressure at the base of my skull and it seems to let the spinal fluid get back around my brain faster. I feel that it opens up what is being closed off when the brain is pressing against the nerve that sets off the most pain that none of us ever want to endure. I know the faster you can relieve your symptoms the quicker recovery time. Hope this might help some of you.....it has sure helped me.
csf low volume
Hi
I have had low csf for 7 years.....although MRI was normal , my daily headaches are relieved by caffeine and bending my head over....I have been taking Theophylline for nearly 3 yrs , this has given very small relief but not enough to make a difference.
I would love to talk to someone that has the same.............
Cfs leak
On 2/19/12 I woke up with excruciating head and neck pain. I would vomit if I tried to stand for too long or even sit up. I was traveling so I ended up in an ambulance to the er. That's when I learned that the pain would be alleviates by laying flat. I spent the next 12 hours in the hospital. They did a ct scan which they said was clear. Then they decided to do a lumbar puncture to rule out bleeding in the brain and meningitis. It took four tries before getting an anesthesiologist. He made a comment that whatever happened was due to the er doctor not him and also said if the caused a leak it would be difficult to determine because I walked in with the exact same symptoms. I was discharged with a headache and a convincing tale that they couldnt have caused a leak because they didn't get fluid. Boy have I learned a lot since then.
I since have had 7 MRI s ,2 blood patches 6weeks of bed rest and many calls and visits to my neuro. I have missed 6weeks of my kids' lives and work. My last MRI showed there isn't anymore fluid build up and I consequently am able to function. I still have a dull headache which seems worse later in the day. If I have any emotion the headache begins to reappear. As well as if I yawn or make a sudden movement. I have a constant buzzing in my left ear. This developed after my second blood patch or that's when I noticed it. The pain was most of my focus prior. I agree with the posts that say this should not be categorized as a headache-I was actually afraid to go to the bathroom because of the pain I knew I would feel. I feel fortunate that my Drs listened to me right away however I'm afraid that this will never go away. I'm also afraid of the original headache that brought me into the er. I am wondering if I should get yet another blood patch even though the headaches are dull and I only feel sharp pain with exertion or raised emotions. My dr promises I will get better in time. My husband is becoming frustrated with me, thinks I'm "milking"it. I don't want to live a life like this yet I'm happy to be out of bed and able to do anything that resembles normal. I am suppose to return to work in two weeks. Any advise for further steps? Do I trust my dr and just try to continue to heal on my own?
This recovery sounds dead on
This recovery sounds dead on with mine. I leaked for 6 weeks and spontaneously sealed. And my thought was exactly...I've lost 6 weeks of my life because all the pain and drugs I couldn't remember much (which is probably for the best). Rebound high pressure is the likely cause of the dull headaches, and as you said worse later in the day. Bending over and quick movements were painful. This DOES improve slowly, be patient. **Slowly** is the key word. Late day headaches lasted 6 months, ear ringing lasted at least a year. Your brain went thru a hige trauma, it's not going to heal in a week. Im 2 years leak free and work out at 100% of my original intensity. Im still seeing improvements 2 years later in some of the nerve trauma I suffered as a result of the brain dropping.
response to you
Guest,
Please contact me. I have had two BPs and am wondering if I need a 3rd. It would be great to hear from someone who has also experienced this condition. Please e-mail me at if you are comfortable, if not, can you post in response on the blog? How are you doing?
3 blood patches
Hi Mary, this Anita. I first began to have symptoms in September of 2011, was hospitalized on October 31st for two weeks, during which time I had two high volume blood patches.
I was sent home, place on bed rest with lots of meds and I had to darkened the room all the time. I never had headaches before this. I needed full time care because I would fall or pass out when simply walking from my bed to the bathroom. I could not sit up to even eat from November 2011 to May 2012 when I had a third high volume blood patch. The medical approach was not working and as of right now I have stopped going to any doctors. Three weeks after my third patch in May of 2012 and a rapid detox to get off of all painkillers, etc. Almost $100,000 in medical costs and the night I returned home in May I thought I was having an Aneurysm but did not see the point in returning to the hospital. One of the neurologists I was seeing was so full of himself that I could not have a conversation with him. He decided I had an intractable headache, recommended a pain clinic. I said no because the painkillers effect the brain's ability to go into restorative sleep and essentially just masks what is happening, not really getting to any root cause or cure.. I am still in pain, worse at end of each day but do not believe the medical community can help any more other than drug me up and then I can't function. I am heading into a year of almost continual headaches, pressure, vertigo (even when sitting), eye twitches, heart beat in ears, etc. I manage through hypnosis. I don't leave the house much because the vertigo is sudden.
Anita see Dr. Linda Gray
Anita,
Please go see Dr. Linda Gray at Duke University Hospital in North Carolina. She found my leak when no one else in the country could as she uses guided CT technology to find these leaks (no one else does tests as accurate as her). She is a wonderful person who listens to her patients. I too experienced the egotistical neuros; she is not like that at all. :)
I will pray for you! I think Dr. Gray can help you though...
im going through this now
I am on strict bed rest for 1 week and I too am supposed to see Dr Grave lease over at Duke if it doesn't improve in a week. by the way her name is Dr Linda grave-leithe
BLOOD PATCH AND HEAD AND NECK PAIN
I HAD 3 BRAIN SURGREY BECAUSE OF A LEAK
Spontaneous Leak of Dura
I agree with so many of you that it is comforting to know that I am not alone. I write this from the same hospital bed that I have been in for 4 days now. The headaches began exactly 1 month and 2 days ago. They started on a Saturday afternoon and I thought it to be just a random headache that a couple of Advil could handle. When I woke up on Sunday morning, the headache was still there, so I thought it must be a sinus headache especially with the change in the weather. After taking Sinus tablets for a couple of days, I realized that this was not the problem. The headaches became so bad by Wednesday that I was nauseous and vomiting from the pain. Being a young woman in my early thirties and a newlywed, I was quickly thought to be pregnant. After several days of negative pregnancy tests, a walk-in clinic physician and an ER doctor came to the conclusion that I had a virus and that I just needed to hydrate and give the virus time to run its course. I continued to try to go on normally with work as a teacher and as a softball coach, but the pain was so bad at times that I could not stand. Laying down even for just a few minutes was a release in the pain. I made an appointment with a family doctor that following week when it was apparent that the headaches were not going away any time soon. He also ordered a pregnancy test, along with some blood work for a variety of sordid things, but concluded that I was developing migraines. So with a low-dose beta blocker and some leftover Ibuprofren 800mg, I spent the next week trying to convince myself of the diagnosis, but the doctor's plan was not panning out as the headaches were still present, as was the vomiting from time to time. Still not preggers, by the way. Finally one day before the month anniversary of these headaches, I traveled to another hospital that was over an hour away from home versus the hospital two blocks from my front door. After an MRI they saw that my dura fluid was low, so after some research by the doctor and his intern, they ordered another MRI to be performed to see if they could spot the leak. That MRI showed a couple of spots that seemed fishy to them, but nothing utterly conclusive. Today I had a myelogram, not fun by any means. This test consisted of being wheeled down to the Fluro department, lying on my stomach, then the doctor numbed the area with a local anesthetic, and followed up with a larger needle through which he injected a dye that would then travel throughout my body. One of the most painful parts was the first few needle pricks for the anesthetic. After that it was more uncomfortable than painful. I could feel the dye travel throughout my body, particularly as it sunk down into my calves. The doctor and nurses then positioned me in every which way on the table in order to take several shots with the x-ray machine. This became slightly painful as the dye was gravitating to different areas of my body as I was positioned in various ways. My back, especially the lower area, was so uncomfortable during this part. I have to admit that I shed a few tears throughout the process. Once the test was over, I was immediately taken to have a CAT scan because the dye supposedly will help produce better images. I have yet to hear any results from today's tests, but I am waiting patiently, what else can I do, right? I have been ordered on bed rest, with bathroom privileges, thank God. I am also to maintain my position in bed with my head elevated at 30 degrees to ensure the dye doe not travel any further up and cause more headaches.
Results of your myelogram??
Have you posted the results and I missed them. I am curious if I need this test to find out where my leaks are. And your progress since this test? Thanks
my results
Doing well.Dr.Gray found my leak in my left nerve roots by my shoulder and did a BP two months ago. Since then I canwalk through malls and walk twenty five minutes per day give or take a few. I have some reboundhigh pressure and face pain with it but amtold thisis a goodsign as my pressure just needs to regulate.
Thanks for asking!
Hello. My name is chris. In
Hello. My name is chris. In the summer of 2008 I was on a plane and a man dropped his suitcase on my head and I thought nothing of it until a week later when I woke with the most excruciating headache I've ever had in my life. It felt like somebody had pumped my skull full of air and that my head was on fire. Naturally I was first prescribed 11 different medications (including Klonopin as it was thought I had anxiety or something). I have had two MRIs of my brain WITHOUT contrast that both came back negative. I just convinced my neurologist to send for an MRI WITH contrast which I will have done this week sometime and I hope to god they find something. It has been almost four years and no medication does anything. Caffeine seems to briefly relieve some of my symptoms. I hate the muffled hearing. I can't listen to music the way I used to. I was 17 when this all first started and I am about to turn 21. This is all ridiculous. I know what a migraine feels like and this feels completely different like somebody is stepping on my brain and never takes the foot off. Anyway wish me luck that they uncover SOMETHING with this MRI with contrast.
Article on Spontaneous CSF leaks
Hi, I have Ehlers Danlos syndrome (EDS) and wanted to share this article with you. I get episodic nasal CSF leaks but suspect that I have undetected leaks elsewhere too. I have symptoms of cerebral hypotension and EDS is a genetic collagen disease which causes lweak, stretchy collagen, susceptable to stretch/rupture. I hope you all get relief... I know I'm ready for a bit!!! I gat breast milk production since age 24 (not pregnancy/medication related) and I understand by my reading that compression of the hypothalamic pituitary axis that pseudotumor conditions can occur... so is that the cause of the prolactin & fever??? Is that part of it??? I get a lot of other symptoms named by others & thanks for all the info. Bee
http://jama.ama-assn.org/content/295/19/2286.full
IHypo after IHyper
I just had a blood patch done for a CSF leak after a lumbar puncture to relieve pressure. I usually have Intercranial hypertension but experienced Intercranial hypotension for a whole week and it was just as terrible. The blood patch worked and I was able to resume normal functions but I just wanted to say that I don't know how you all do it. I live with INCREASED pressures and I thought that was bad. I dealt with low pressure for one week and wanted to kill myself, I'm being totally serious. I will pray for all of you and keep an eye out for any information on your condition so I can report back here with helpful hints and breakthroughs in meds or care!
Your post in 2007
Any word on new research on CSF hypertension? Any ideas on ways to produce more of it?
producing too little CSF
I have had two blood patches and the second is helping much more than the first as I am able to sit up without pain but still cannot walk far or stand long without getting head symptoms. My leaks were never found on any scans with CSF tracer. My question is, has anyone heard of producing too little CSF? This was posed to me by a couple doctors with no remedies on how to solve this.
I did have a concussion last April 2011 through which I continued to work out...stupidly! Anyway, if anyone has heard of producing too little of CSF fluid and how to increase production other than drinking more caffeine, please let me know.
Thanks!
Mary
Dear Marie Ann, any one with draining ear sensation
Dear Marie Ann,
I am terribly sorry about your condition and the difficulties that you are going through.
I have had two blood patches in Trandelemberg. The second seems to keep headaches at bay although I still feel fragile and a litttle draining sensation. I am taking it easy and trying not to walk much.
All of my MRIs and CT scans are normal as well as my myleogram. They did the myleogram in the spine with CSF tracer as well as the MRI with a CSF tracer.
What doctor examined your ear fluid? Was it flowing out of your ear at all or did they need to place a tube in your ear for it to come out? I have also heard that draining by the ears is part of the CSF leak symptoms and that it is not necessarily in one's ear if they feel this.
I will pray for you! :)
Mary Powell
CSF leaks
Has anyone experienced a draining in their ear? What is that caused from? Does anyone know how to help strengthen the dura mater of the brain?
Ear Tubes
I had several ear tubes placed which then caused all the liquid building up behind the eardrum to flow out. It was CSF (cerebrospinalfluid = brain fluid).
Unfortunately no one took heed to my word which was, please examine this fluid! Then, finally, after two failed mastoidectomies, first one exploratory, and first repair attempt, second emergency surgery 4 wks later for same, also unsuccessful, I was still not believed.
To make a long story short as I have written mine several times on this forum, I looked into the matter myself. You need to get the fluid examined for beta-2-transferrin. You drip into a small container, the contents of which must be examined in a lab in a timely matter, i.e., within 2 -6 hrs. max.
To strengthen the dura? I doubt there is such a thing except perhaps in alternative medicine to which I have to access.
Due to this debilitating condition getting worse over time, I now live in poverty. Everything I knew from my previous life has been taken from me. I volunteered to help the poor, I worked full-time, I took classes in continuing education, I was active in yoga, pilates and dance, I had a full social life.
Now I lie in bed 24/7. The pain in unbearable.
But you did not ask about all of this.
All I am saying is that if the leak is not stopped early, the defect WILL get worse to the point of disabling you possibly.
If anyone else out there has any suggestions, I, too, would be interested. But I cannot imagine any remedy which would push my herniated brain back into the dura and close a 3 cm sized hole and replace bone I am missing at the skull base, so........
Nothing more to say here.
Good luck to you and get help: FAST
oh you poor thing, get another (multiple) opinions?
Marie Ann, your story made me very sad and angry!! You poor thing. Can you go and get second / third opinions etc! Keep trying.
Some (agreed not all) doctors and surgeons may like hta challenge to help somone who is a 'complex case study'
Please don't accept that this is it.
Try the Medical Teaching Hospitals?
Research TOP neurosurgeons in your area / or outside your area too ....
I hope you are doing a bit better than when you posted. Sorry you had to go through this.
Find a 'pain clinic' for the pain - get that managed? and then hopefully you will, in time , heal?
Take care,
Kate
Complications with a craniotomy
On Dec 27 of 2011 my 49 year old mother suffered a ruptured giant anuerism to the left side of her head, thankfully she woke up after passing out to call me for help, she suffered a large amount of blood on her brain. Thankfully 2 days later they performed a 12 hr surgery to have a clip installed deep in her brain. An internal shunt was installed and she recovered wonderfully, a little droop in the left of her mouth and left eye, no motor delays or physical delays what so ever. Anyway she suffered from numerous infection of the blood, stomach, lungs and wound incision resulting in the removal of all hardware in her head, to include the bone flap and ended up with VRE. My question is since after these incidences my mother has had some issues with the sight and smell of food, constantly needing medication for nausea and vomiting before after and during meals. Is there anyone out there who has dealt with these same issues or has a connection between smell and the left frontal lobe of the brain associated with surgery or in general? i need answers and can't seem to find them ?
CSF Leaks
My 29 year old daughter was just diagnosed this morning with Spontaneous Intercranial Hypotension. She has been suffereing for a month now and has struggled to get care providers to listen. She's been to the ER three times, urgent care once, a pain clinic twice, and finally last week a Family Medicine Physician who finally ordered some lab. The lab came back with a high white cell count so they did a spinal tap and a CT of the head and neck. Those came back negative (which was a relieif) so he ordered an MRI with contrast which they did this morning. The physician told her she had spinal fluid leaking in her brain. Her symptoms were very different from any migraine symptoms she'd had in the past but struggled to get anyone to listen or believe it could be something else.
For the past month different providers have been throwing all kinds of drugs at her and nothing worked. Since she had a history of migraines (she hadn't had one in over five years) they just pigeon holed her into the migraine bucket and basically said there wasn't anything else they could do so they got her an appointment with neurologist but it's not until April 20, 2012!! Over the past month she's had injections in the back of her head, 3 different pain killers prescribed including percocet, oral steroids, and a non narcotic pain medication. One physician also had her take a depression test. Nothing helped her.
Since my daughter is 600 miles away from home and had cancer at 27 I was extremely worried so I called my best friend who's an RN and she told us to have the pain clinic set her up with an appointment with a family physician (she moved last April and didn't have a PCP yet) and what tests to ask the family physician for ie: Lab and an MRI w/contrast of the brain.
Thank goodness we finally found out what the problem is. We are releived it can be corrected with no permanent damage. She struggles to put thoughts together, noise is extremely painful, she would feel worse when she stood as opposed to lying down. She is so tired and fatigued from the struggle to get through the past 30 days which I'm sure her is related to her body trying to compensate or heal itself and of course the pain and extreme pressure in her head.
I'm sure her doctor, clinic, and hospital bills are going to be awful due to the run around. I know her boss was getting upset about the ill calls and time off for doctors appointments but thankfully he's been more sympathetic the past week especially since she has never used more than one or two sick days in a year until this happened. I am glad that they know what's wrong now and that it can be corrected. They are working on a care plan for her that includes a blood plug. They may do a couple more tests to try to determine the exact location of the leak.
I write this now in the hope that others will not be afraid to push providers for answers. We're their customers and are paying for their service. If I hadn't called my friend to ask for advice on what to do next when everyone had pretty much washed their hands of it, who knows where she'd be by April 20th?? I wish all of you the best and hope you all can finally get some relief from what is an extremely painful condition!
Your daughter
I am so happy that your daughter found relief. Have you heard of what to do if a leak is not found? I have low CSF fluid and it was brought to my attention by doctors that maybe I do not have a leak but produce too little of it. Any answers or docs you could point me toward?
Thanks,
Mary
Am happy for your daughter
It is always the same runaround, isn't it.....unbelievable.....I really like the point you emphasize about we being the providers' customers who pay their salaries! Their nice lifestyle is because of us!
Unfortunately here in Germany you cannot "push" a provider for an answer. I have tried that, in a calm manner, in an emotional manner, in a desperate manner, and the result was always the same: I was asked to leave the office. Here we have what is called "5-minute medicine." Not even my GP has the full picture on all my illnesses and health problems. To say, go get another GP: been there, tried that, and only got the same reaction: "What do you expect from me? I do not have time to read medical files, let alone take on a problem like yours. You are out of luck and have to learn to live with it."
OR, the other version:
"Your illness is psychological."
They say this to me, I have to suscept myself to this type of treatment despite that fact that I have had two operations on the skull/brain and my diagnosis was SEEN during those operations (and of course has been included in the hospital reports), unfortunately the 11 yrs. before was never taken seriously so before the first operation not even a ct scan had been done of the skull. I have a spontaneous osteodura defect, encephalocele, and persistent liquorrhoe. The pain and pressure in the skull forces me to lie down almost 24/7. I can only be up and about for brief periods, and then not symptom-free, but it is bearable. Then it becomes unbearable, and I have to lie down.
And I cannot find a medical practicioner who will be my advocate. After so many years I am bitter of full of hatred for those who have treated me as described above. How dare they. But I am helpless. There is nothing I can do to change the system. I cannot force a doctor to have compassion where there is none; I cannot force a doctor to have a calling when he has none; I cannot force a doctor to believe me if he thinks he knows all there is to know; I cannot force a doctor to help me research here in Europe to find competent surgical treatment if he is not willing to look further than the tip of his nose. And on my own, I have given up.
Yes, you will have psychological problems such as depression lying in bed 24/7 when your active life has been taken away from you by illness. Who wouldn't? Especially when support is lacking in being believed that you really have the symptoms you say you do. The fact that I have the above diagnosis is no longer questioned because I have it in black and white. But because there is no one to compare me to, they don't believe me when I say the pressure in the skull is so great, I have to lie down. I have proven that I have liquorrhoe. The very hospital where I was operated on twice continued to do the test incorrectly. The test for beta-2-transferrin has to be done in timely manner, within hrs. after the sample has been taken. Otherwise you run the risk of getting a false negative. I had so many false negatives although literally the clear, watery fluid was flowing out constantly through an ear tube they kept placing and replacing.
So I look it up on my own, went unannounced to the lab, walked through the doors for "authorized personnel only" and was soooo LUCKY to meet a doctor who listened to me and took my problem seriously, I "leaked" and filled a small plastic container up to the tippity-top and only then finally got my positive test results I needed to be believed.THAT is crazy, I am sorry.....
(You know, the though has crossed my mind that perhaps the surgeon did not WANT these results to come out for whatever reason....I don't know, am not behind the scenes, but I have received no support whatsoever from him for my disability petition even though he admitted he had never in his life ever seen what he saw inside my skull. The CSF literally squirted out at him when he opened the skull and I was missing bone where most people aren't, and I had that encephalocele and big hole in the dura....)
The hospital lab fiasco was back in 2009....now it is 2012 and doctors are now saying, although nothing has changed, except that I no longer have ear tubes and so I leak through the nose...they are doubting that it is CSF again!
So I phoned all the local labs outside of the hospital (have no access to that lab anymore as I am no longer a patient of the hospital) and they send the sample away for testing which means hrs. pass during which the sample usually becomes useless.
There is a GREAT CSF support group on Facebook in case you have not heard of it. They are starting a fundraiser for a "leaker" in the UK who has no access to competent medical professionals who can help her. This fundraising group also has the long-term goal of making this illness known because most sufferers are tormented needlessly due to not being believed and taken seriously by those around them.
That is why these forums have helped me so much. They are really the only place I know I will be taken seriously. Even my lawyer I hired to try to get disability benefits knows my files inside and out and still every now and again he will ask me: "Are you SURE you have to be in bed ALL THAT TIME?" It is hard for others to believe. And I know my lawyer takes me seriously, he even drives me sometimes to doctor appointments. But he asks that question every few weeks....because when he talks to me, while I am lying down, I am a normal, functioning (mentally) person! And he is also hearing from every doctor we consult the same story about yes, she has the defect, but no, these symptoms cannot possibly be true. Or, my surgeon who performed the two failed surgeries said, I cannot confirm your symptoms. Those are purely subjective. And the court has sent me to see two specialists, both psychiatrists....so my lawyer, too, although on "my side" sometimes asks himself as well, who is really telling the truth here.
It is truly awful to suffer from a rare illness. The illness itself is horrific, taking one's life away, but the added slap in the face of not being believed.....that to me is truly the worst of it all because psychological pain is almost more unbearable somehow.
Oh well, good night for now.
(pls. excuse any typos...too tired to proofread.....lying in bed all the time since 2006 has taken its toll on my endurance = non-existent...)
Marie
Facebook support group for CSF leaks
Can someone tell me how to find information on the support group mentioned above by Marie?
Thanks,
Mary
csf forum on facebook
if that does not work, go to facebook.com
then search for csf leaks and the forum will show up
spinal leak(csf)
3-8-12
Hi every1! I have been going thru the same thing for the last past 3 yrs. It started for me in feb. 09 when i had my 4 th child. I had the epidural shot for pain. A few days after returning home i started having bad headaches, nausea, Fluid in ear, sensitive to light and noise, neck stiffness, floaters in my vision, and off balance, and so on. I been from doctor to doctor. They cant tell me whats wrong. They told me migrane, im crazy, and so on. It is so sad to see this is what our medical feild has come to. I have 4 kids my husband had to stop working to help me at the house because i am in a wheel chair due to this. We barely have a income to pay our house note. This is so sad people life get turned upside down and the medical experts dont see it. This lady gave me 3 shots in da back while giving me the epidural. What a mess up. Now shes still has her job. But im the one suppose to be crazy!!! This has taken a toll on me and my family.
I pray some better can be done for all of us that is suffering from this. Currently march 8,2012 i still havnt gotten the help i need.
Teresa
Hi Marie, It made me very sad
Hi Marie,
It made me very sad to read your story. I can't imagine what it must be like to deal with something like this for such a long period of time. Just dealing with the frustration of the situation alone is enough to send a person over edge. I know my daughter called crying after a couple of the Dr. visits this past month because she felt hurt that no one seemed to beleive her let alone care.
An anesthesiologist is performing the blood patch at a hospital near her home in about 15 minutes so hopefully she'll have some releif soon and can get back to normal again.
Thanks so much for your story and kind words. I hope very soon someone will listen to you and go the extra distance to help you try to resume a more normal lifestyle. Best Wishes! Luana
Myelogram Blood Patch - Intercrainal Hypotension
Well I Just read through some of the posts and wanted to tell you all about my experience - In June 2011 last year my ears went fuzzy, like on a plane and I could not clear them. Got told it was Ear Infection, then the vomitting started, Emergency room, Ear Infection sent home, 4 days later again - emergency room - CT/MRI - found Brain Bleed, hospital for 3 days and sent home, 7 days later - here we go again, emergency room and emergency burr holes and brain drain. Home after 5 days - on Steriods, made me feel like a drunk - No one could tell me why, also got weird headaches, food no taste and other weird feelings, tired all the time, thought I was in a deep depression. However they had also found a benign Meningioma and sent me to Duke Univeristy Hospital to see a specailist there. I did not go to Duke until Dec 20th - so had been fighting this weird feelings for 6 months - after talk to the Dr for just a few moments, he mentioned Intercranial Pressure. To cut a long story short, I went back on February 16th 2012 and had a MYLOGRAM BLOOD PATCH 6 - 8 leaks were found and with in hours felt like my old self, almost felt they took my head and gave me back my old one. I was amazed and everyone I have spoken to and seen can't believe the difference in me. My outlook on life has changed back to the old me and I feel like me befor I got sick - 9 months ago. Thank you Dr Linda Gray at Duke.