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jmilphoto
03-14-2007, 02:09 PM
Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!




wasabi
04-17-2007, 01:45 PM
jmilphoto,

I do not have CFS Leak, but I am interested in nutrition. Somewhere else I read that CFS Leak may be associated with hypermobile joints. Is that something you have? If so, nutrition to support connective tissue health could be very helpful.

There are two things I would suggest that you consider. One is magnesium supplementation. I am taking Ionic-Fizz Magnesium Plus. I find that it is very effective. The other is chicken soup made with plenty of skin and bones, or soup made from beef bones - plenty of gelatinous protein.

I wish you all the best.

wasabi
04-21-2007, 10:07 AM
jmilphoto,

To see if you have other symptoms that point to an underlying connective tissue disorder, you might want to check out the connective tissue disorder site:

http://www.ctds.info/index.html

vini
08-11-2008, 05:30 AM
hello neuro talkers
I have had a head injury on the 19th of December last year were I got fractures to my, frontal / temporal / maxilla/ and orbital floor bones on the right side of my head I have no sensation in the right side of bottom eye lid/ nose top lip/ teeth and gum's also double vision in my right eye I came to in the waiting area of a hospital not knowing were I was or what had happen I could not see my phone so asked the receptionist to call my partner she said the police had phoned some three hours earlier and said I was in a bad way but was ok this was 3am my partner came out with my 7 year old when they arrived I was finally seen by a doctor I could not tell my left from right when xrayed I was given a letter to take to another hospital some 30 miles away ( the queen Victoria East Grinstead uk famous for its work WW2 fighter pilots burns victims known as the gini pig club) there I was scanned told the extent of my injury's they said they could not operate until the day after boxing day 7 days away they gave me some anti bots and pain killers and told me not to blow my nose ( No head injury sheet) a couple of days later I got a cough and cold every time I coughed I had clear fluid run out my nose (not mucus) from the cold about an egg cup full a day salty and thin clear liquid I now know was CSF leaking , I returned to the hospital for the op to fit 3 metal plates to the fractured bones I got into bed and told the nurse that I was worried about this stuff coming out my nose, she said can you make it come out so I coughed and it trickled out . she went and got the surgeon who done some neurological tests he said he could not operate and sent me for a brain scan I was to return for the op on new years eve which I did and the op was done the staff at the hospital were all very nice , but I am left with crushing daily head aches, short term memory loss, find it hard to think, low mood, and a salty taste at the back of my throat could this be the CSF leaking I have had to give up work as I could not cope with my job any more, I have an appointment on the 18 September with a neurologist , Can CSF leak internally ? will my symptoms get better if they can fix it ?
ps I was a victim of an unprovoked attack at a railway station but still have no memory of that night
kind regards Vini

dsu1993
02-16-2009, 07:01 PM
I have just recently been diagnosised with spontaneous csf leak. I was in the hospital for 1 month. Currently I am at home on bed rest. Doctors are hoping the tear in the dura will seal on it's on. I have also had 3 spinal taps, but were unsuccessful at finding exactly where the tear is or get any spinal fluid at all. I do know that the tear is in my neck, but unsure how big a tear or if it is in the front or the back. I am willing to go anywhere for some answers.

Bostic
02-19-2009, 02:43 PM
I stumbled upon this site yesterday 2/18/09 while looking for more information on a great dr. I just saw at Cedars-Sinai in Los Angeles. Dr. Schievink is wonderful as I just got back from LA 1 1/2 wks ago after he attempted to repair a CSF leak on me. It sounds like you would be a great candidate for him. He is very easy to get in to see as he seems to work his patients in very quickly. He is extremely busy but his whole goal seems to be getting those with a CSF leak repaired.

lorimack
04-06-2009, 10:17 AM
Hello everyone - My daughter was in a car accident almost 5 years ago. Four years ago, after many visits to doctors, she was finally diagnosed with a mild to moderate tbi. We have spent these past years doing whatever needed to be done. At this point, we are dealing with many, many endocrine issues as a result of the tbi. She has mentioned to most of the doctors she has seen about this fluid that comes from her ear. It used to be more red/clear and now it is pink/clear. She has also asked almost from the very beginning about this "crackling noise" that she feels is coming from the back of her head. Has anyone hear heard that noise? Has anyone here had the ear leak? We were told to see a neuro-ent. Waste of time, he prescribed flonase and told her that csf was only nose. Also, if anyone knows of a doctor WHO WILL LISTEN in the New York, Connecticut, Massachusetts area I would most definately appreciate the help.

Chemar
04-06-2009, 10:21 AM
Hi and welcome

this forum is not as active as most of our others so you may also want to make your post on our new member intros forum in case anyone reading there has suggestions for you. I am also going to copy your post out from this thread onto one of its own here on the CSF leak forum and give you the link to our TBI forum as well

here is new members forum
http://neurotalk.psychcentral.com/forum88.html

and here is our TBI forum
http://neurotalk.psychcentral.com/forum92.html

Traci1
01-02-2010, 06:45 PM
Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!I too have been suffering from this for many years, just in the past four months it became very chronic. Nothing but waiting for tests specialists and talking to deaf ears!!!! I went to er at a trauma center and viola! they knew just from my symptoms and did a blood patch!!!! Although it did not last but one day I have shown some improvement since but am stii symptomatic this is very rare and totally misunderstood illness and is very hard to endure, people are clueless!!!!!! most of specialists that know are to far away to get to so far none that i know of in my area i am dealing the best anyone can hope nuero app will get me another blood patch if he even hears me this time seems he also knows nothing!!!!!! hang in there these sites are popping up more and more we just need to keep talking and posting till everyone knows about this illness that has debilitated so many people. thanks for listening feel free tp write, call, text, email and send to others dealing with this would love to exchange stories with more people everyone counts! and i want to hear as much info as i possibly can .

dankgrl13
03-22-2010, 05:42 AM
It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.

dankgrl13
03-22-2010, 05:45 AM
I, too, am in the tri-state area and suffer with csf leak. Finding a neurologist here to listen is like finding a needle in hay stack. I think I have seen 50. The headache center at montefiore in the bronx is good.

doctorslie
05-10-2010, 03:39 PM
I have been diagnoised with , first a pituitary macroadenoma and ICHP and then a CSF leak. I have been to 2 of the most well respected university hospital systems in the state, only to have doctors disagree. I had a radioactive cisternogram (lumbar puncture and all) that came back "dramatically abnormal" which prompted a call from my neurologist to get to this surgeon at this big university hospital asap, but Do Not Fly. He made all of the arrangements and off we go. They told us to expect to stay 7 to 10 days for the surgery, spent time explaining it to us, etc. The whole family took off work, many were flying in from all over the states. My husband and I infromed our employers that we were on our way to have this surgery and that I needed about 3 weeks off for recovery and all. No problems there. We have the first appointment with an ENT who was supposed to admit me to the hospital. Let's call him Dr. I'm Smarter Than Anyone Else In The World. He took my cisternogram and said "this is garbage" these test are not any good. He then looked up my nose for a minute and said "I do see a glistening fluid, but can't tell where it's coming from". He then said he wanted to do a 10 slice CT with contrast and went on to explain that I would have an IV, etc., and that this would take about 30 minutes. Went in for the CT, no contrast, done in five minutes. I asked the tech about it and she said "Dr. I am Smarter Than Anyone In The World, didn't order contrast. Ok, whatever the smartest doctor on earth wants. We were then ushered back into his office and he said, the CT was negative. You don't have a leak. Relief right? He then sends me over to the Neurosurgeon about the pituitary issue. Now I must say, you have never met "arrogant" like this kid. He say's why are you here? I said, Dr. I am Smarter Than Anyone In The World told me I had to see you, he said "what for"? I stupidly assumed that they exchange information or something. I said well, I don't know, he's the one who sent me over here. So Dr. Arrogant calls Dr. Smater and and Dr. Smarter tells Dr. Arrogant about my pituitary tumor. So he say's, exact words..So, alll I have to say is that when Dr. Smarter repairs this leak I will snip out the tumor. I won't look at any films, I'll just take Dr. Smarter's word, we work together all the time. We are just stunned, what happened here? My husband then said, wait, we know nothing, and I now need some answers, my wife is sick and we are paying you guys alot of money to take care of her. Dr. Arrogant said, you aren't paying me anything, the University pays me. You cannot win with a physician that gets paid no matter what they do or do not do. So, we call home and tell the local physicians what happened and they sent us to a neurologist at "big university hospital" who actually called Dr. Smarter and said, "I think your wrong". Well, that did not go over very well and they argued, then a 3rd doc got in on the argument, saying this is a low pressure headache caused by a csf leak. Finally, the neurologist said, I am sending you to another university hospital and made the referral. He was not going to fight the infamous Dr. Smarter who is 2o years his junior. I still have a leak, I still have a headache, I still feel like you know what and I still have not received care.I talked to Dr. Smarter and he said, I did not see a leak on the CT with contrast and I said "you didn't do any contrast" and he actually said, YES I DID. I said I think I would know if I had and IV Doc. His nurse later called to tell me that I was correct, but the results were still the same.
The doctor I really like told me that when things like this happen that you will often get very poor medical care because doctors don't like to be wrong. So when another physician calls about history, they will not paint you in a favorable light, just FYI. To make it more interesting, I was the Marketing Director for a large hospital system. Now I know what the patients were saying to me when they said they didn't think their doctors were listening to them THEY WERN'T. I have actually been involved in conversations with physicians about patients that they were treating. Terribly unfair in retrospect, wish I would have know then what I know now.I remember one lady came to the ER with chest pains and the doctor called her a frequent flyer in need of a case of Prozac (long time ago) and discharged her, she died on way to her car of a massive heart attack. I am just saying to all, you are in charge of your health care. Do not be afraid to fight the fight it takes to get yourself well. I am not an aggressive or abrasive person and have been very meek to this point, but now I will fight, I want my life back.. Anyone else had a similiar experience?

missy1
05-14-2010, 12:20 AM
I have been diagnosed with CSF leak had blood patch which did not work. Cysternogram could not find leak. they now want to treat with drugs Is there anything else out there to be done?

pippotamus
05-30-2010, 09:22 AM
I have been diagnoised with , first a pituitary macroadenoma and ICHP and then a CSF leak. I have been to 2 of the most well respected university hospital systems in the state, only to have doctors disagree. I had a radioactive cisternogram (lumbar puncture and all) that came back "dramatically abnormal" which prompted a call from my neurologist to get to this surgeon at this big university hospital asap, but Do Not Fly. He made all of the arrangements and off we go. They told us to expect to stay 7 to 10 days for the surgery, spent time explaining it to us, etc. The whole family took off work, many were flying in from all over the states. My husband and I infromed our employers that we were on our way to have this surgery and that I needed about 3 weeks off for recovery and all. No problems there. We have the first appointment with an ENT who was supposed to admit me to the hospital. Let's call him Dr. I'm Smarter Than Anyone Else In The World. He took my cisternogram and said "this is garbage" these test are not any good. He then looked up my nose for a minute and said "I do see a glistening fluid, but can't tell where it's coming from". He then said he wanted to do a 10 slice CT with contrast and went on to explain that I would have an IV, etc., and that this would take about 30 minutes. Went in for the CT, no contrast, done in five minutes. I asked the tech about it and she said "Dr. I am Smarter Than Anyone In The World, didn't order contrast. Ok, whatever the smartest doctor on earth wants. We were then ushered back into his office and he said, the CT was negative. You don't have a leak. Relief right? He then sends me over to the Neurosurgeon about the pituitary issue. Now I must say, you have never met "arrogant" like this kid. He say's why are you here? I said, Dr. I am Smarter Than Anyone In The World told me I had to see you, he said "what for"? I stupidly assumed that they exchange information or something. I said well, I don't know, he's the one who sent me over here. So Dr. Arrogant calls Dr. Smater and and Dr. Smarter tells Dr. Arrogant about my pituitary tumor. So he say's, exact words..So, alll I have to say is that when Dr. Smarter repairs this leak I will snip out the tumor. I won't look at any films, I'll just take Dr. Smarter's word, we work together all the time. We are just stunned, what happened here? My husband then said, wait, we know nothing, and I now need some answers, my wife is sick and we are paying you guys alot of money to take care of her. Dr. Arrogant said, you aren't paying me anything, the University pays me. You cannot win with a physician that gets paid no matter what they do or do not do. So, we call home and tell the local physicians what happened and they sent us to a neurologist at "big university hospital" who actually called Dr. Smarter and said, "I think your wrong". Well, that did not go over very well and they argued, then a 3rd doc got in on the argument, saying this is a low pressure headache caused by a csf leak. Finally, the neurologist said, I am sending you to another university hospital and made the referral. He was not going to fight the infamous Dr. Smarter who is 2o years his junior. I still have a leak, I still have a headache, I still feel like you know what and I still have not received care.I talked to Dr. Smarter and he said, I did not see a leak on the CT with contrast and I said "you didn't do any contrast" and he actually said, YES I DID. I said I think I would know if I had and IV Doc. His nurse later called to tell me that I was correct, but the results were still the same.
The doctor I really like told me that when things like this happen that you will often get very poor medical care because doctors don't like to be wrong. So when another physician calls about history, they will not paint you in a favorable light, just FYI. To make it more interesting, I was the Marketing Director for a large hospital system. Now I know what the patients were saying to me when they said they didn't think their doctors were listening to them THEY WERN'T. I have actually been involved in conversations with physicians about patients that they were treating. Terribly unfair in retrospect, wish I would have know then what I know now.I remember one lady came to the ER with chest pains and the doctor called her a frequent flyer in need of a case of Prozac (long time ago) and discharged her, she died on way to her car of a massive heart attack. I am just saying to all, you are in charge of your health care. Do not be afraid to fight the fight it takes to get yourself well. I am not an aggressive or abrasive person and have been very meek to this point, but now I will fight, I want my life back.. Anyone else had a similiar experience?

Well I just had to reply to your posting as it is such a wonderful summary (and very funny by the way) of the ridiculous situation we find ourselves in trying to get a CSF leak fixed. I thought these sort of doctors (Dr Smarter and Dr Arrogant) were only found over here in the UK, where they are to be found in plentiful supply! I'm clearly very wrong. It took me nearly 2 years of going round and round in circles with arrogant consultants before I finally went over to USA and got my diagnosis for a cranial CSF leak back in July 2009. I had it repaired in America, and hoped my troubles were over, but no, another leak was still present, and yet more scanning etc. was done without showing it up. I had a 2nd craniotomy at the end of Feb 2010 (back in America) and some thinned dura was repaired, but still a leak persisted. I've just had a CT scan, which showed up bone defects but no definite leak site, and I'm going to try MR Cisternography very soon in a desperate bid to find this wretched leak. Even the consultant in America is now beginning to doubt I have a leak, but I am absolutely sure of it. The one repaired in 2009 was 'gushing through' and once you've had a leak you know the symptoms without a doubt - why, oh why, can't the doctors just listen and believe?
If the MR Cisternography doesn't show the site, I simply don't know what to do next - most of the fluid (and there's lots of it) goes down back of my throat, and so extremely hard to collect a nasal sample for testing.

Misty333
06-18-2010, 09:02 PM
Hi dankgrl13,
Who was your doctor at UCSF?
What part of your spine did you have CSF leak? lower back, cervical?

Tori
09-09-2010, 10:01 PM
It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.

I got a spontaneous leak in April, and had 3 blood patches to repair it. I have been feeling better (for the most part), but a recent MRI showed that I still have fluid pooling in my T2-T6 region. We don't know if it just hasn't reabsorbed, or if there is still a leak. Seems weird that I'm not having the killer headaches anymore if I am still leaking. Tell me more about your situation. 7 years? How have you known? How have you felt? Thanks!

frankd
09-18-2010, 03:44 PM
Hi dankgrl13,
Who was your doctor at UCSF?
What part of your spine did you have CSF leak? lower back, cervical?

Dankgirl 13, I live in Bay Area and have been wanting to go to UCSF for a second opinion of what has happened to me. PLEASE let us know the anm,e of your doctor. I had sinus surgery at Kaiser Oakland last March and it turned into a nightmare. A month after the surgery, liquid just stating pouring from my nose. The H&N surgeon insisted I had no problem and "just to wait". Well, I happen to be a professional wind instrument musician with a family and the leak has put me out of business! The H&N surgeon insisted that I just had a "runny nose" and sent me to Allergy. They placed me on allergy shots, inhalers and antihistimes. What a JOKE! The leak got worse. I insisted on a beta transferin test which took 1 month! The test came back positive for fluid. Again I was told to "wait". No explanantion at all. In August the H&N surgeon finally had me undergo CT scan and MRI scan as well as a radioactive tracer test including sticking 6 HORRIBLE collection plugs the size of clothespins up my nose for 24 hours. The plugs made me sneeze convulsively from the time they were in and by the time I came back to the hospital the next day, I went in to shock and was thrashing around like a fish on the gurney. The the vomiting started. 2 days prior to this test I was rushed to the ER with a 104F. We thought menengitis had set in. In total, I had 3 lumbar punctures that still feel like they happened yesterday. The Nuclear test found 3 leaks in my upper sinus and the scan showed a thinned area likely the source of the leak. My doctor NEVER discussed the findings with me and I had to find an intern willing to speak with me. He was good and explained everything to me. However, he doesn't see patients. My doctor is 72 years old is head of the depatment and from my family's point of view, simply cares less about his patients especially one he likely injured. He seems to be to avoiding me. Here's the REAL intereting part: the plugs apparently moved mucosa over the leaks and the leaks stopped! It's been a month and half w/no leaks, but the pressure behind the leak loacation is very uncomfortable and the lumbar punctures didn't help. I've been to so mant Dr. appointments, that I may eventually be dismissed from my day job because of the constant disruptions. Anyone else have a sinus surgery story?

talea216
01-30-2011, 07:27 AM
My friend just got a csf leak. She has had one blood patch proceedure. That was about two weeks ago. Her eyes have been crossed for two weeks also. I have found alot of people with csf leaks, but nobody seems to have the eyes crossing problem. Is there anyone who has had this problem with their csf leak? I'm just wondering if her eyes have a chance of going back to normal.

erdsav
02-10-2011, 04:47 PM
I had a spontaneous csf leak for 6 weeks and also developed a 6th nerve palsy. It will improve in a max of 6 months. Have her see a neuro-opthomologist for monitoring and script for prism glasses.

Lindsey28
03-07-2011, 10:11 AM
It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.

Anyone know anything about being pregnant with CSF leaks... I have had them in the past and they seemed to go away as long as I drink alot of fluid and caffiene. I'm scared they will come back with weight gain. I am 28 and started getting the headaches at 26.

venusny31
03-23-2011, 07:48 PM
For the past 5 years I have been seeing doctor after doctor including an ENT group for continued progressive hearing loss. I also had a few dizzy spells in July 2010. Every doctor kept telling me I had allergies and to take various allergy medications. When it got to the point of not being able to hear at all I went back to the ENT looking to get a hearing aide. He did a myringotomy and then when the fluid was found to be clear suspected a possible CSF leak. He sent me for a CT scan and then an MRI. It turned out that I had leaks on both sides of my skull. Refered me to an ENT surgeon who then pointed me to a Nerosurgeon. This was all within a weeks time. The rush was on because now I had two ear drums with CSF leaking out of them and a greater chance of meningitis. My Nerosurgeon (who by the way is one of the best doctors in the world as far as I am concerned), acted quickly to put in a VP shunt. Opening the shunt up allowed my ear drums to heal within a few days. Thinking that the leak is a sympton of something else (possible spontainious leak, possible intercrainal hypertention). After trying to adjust the VP shunt over the course of several weeks we finally found a sufficent setting but it was still not improving my hearing. Two weeks ago my doctor decided to repair the right side of my head. The leaking looked worse on the right side and apparently the right side of the brain has a little better chance of risk issues since the left side has more function. Well all I can say it is it has been two weeks. Had my stiches removed today. Feel pretty good. It looks like the right side and left side are improving with less leaking. My hearing has improved in both ears slightly. Right side has been repaired with a crainiotomy and fat layering. The left side seems to controlled by the shunt. Both my husband and I are hopeful that this may be the end of the 5 year ordeal. It is very frustrating if you do not have a surgeon who is willing to listen and care. I for one had the best around. I highly suggest Albany Medical Center in Albany NY. Their nero science department is OUTSTANDING. I can not say enough about the quick reponse and the level of care that they provided me. I am not sure what the future holds but I know who will be treating me for it. There is no other place I would ever go. Thank you Albany Med and Doctor D.

bbo02
04-25-2011, 08:08 PM
I saw this post, and I would really like any advice you can give on how to treat a spontaneous CSF leak. It took about 1.5 months to figure out what what going on with me, but a neurologist finally did an MRI of my spine and a spinal tap and found that I had a leak, but they couldn't see where it was. I have had two blood patches in 3 week, and although I feel a bit better, I'm not back to my old self yet. Is there anything else I can do or advise my doctor to do? He is having me take caffeine, drink lots of fluids, and rest. What are some other options. I am a 27 year old active female, and I really just want my life back.


It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.

venusny31
08-07-2011, 11:13 AM
I saw this post, and I would really like any advice you can give on how to treat a spontaneous CSF leak. It took about 1.5 months to figure out what what going on with me, but a neurologist finally did an MRI of my spine and a spinal tap and found that I had a leak, but they couldn't see where it was. I have had two blood patches in 3 week, and although I feel a bit better, I'm not back to my old self yet. Is there anything else I can do or advise my doctor to do? He is having me take caffeine, drink lots of fluids, and rest. What are some other options. I am a 27 year old active female, and I really just want my life back.

I went through various doctors till I was dianosed and finally found one who would be willing to help me and not just tell me to take 2 asprin etc. You may need to seek out a doctor who has delt with this before. I have not had a blood patch but I heard you may need many of them before it actually works. I have had my leaks repaired but now I think I have another one. My nerosurgeon is planning on sending me for a nuclear cystigram which supposidly helps locate the leak as well as determing for sure you have one. Good luck.

venusny31
08-21-2011, 06:49 PM
Well thought I would throw out and update to everyone. Been suffering with low pressure headaches for several weeks now and slowly getting worse by the day. Also ringing in the ears and slow nose drip. Last Thursday got so bad went to the hosptial ER and you guessed it. Another leak has appeared and this one must be operated on to get my life back. I can not stay out of bed for more than 20 min at any time. Get my leak repaired this Wed and hopefully it will not start up again. this makes 4 surgeries on my head in less than a year.

this condition sucks.
Ill keep you posted.

micrazy
09-23-2011, 06:33 PM
Well not diagnosed but dr suspects I have a leak... He has me on bed rest, caffeine and steroids & lots of water but there are good days and bad days and seems the bad days are becoming more numerous. Still have to wait a few weeks till I find out what his next step is cuz he also has me on anti-seizure meds for migraines. No way I have a migraine. Tell me anyone you know that suffers migraines that majority of the time can feel better when laying down and gets worse while upright?

After some research I was anxious and excited to take that next step and be over this but now I after reading this forum I am scared!

venusny31 how many times you had leaks and what causes them or at least the first one?

Everything I read online said most epidural blood patches gave immediate relief but occasionally a few more would need to be administered. Someone show me there is a silver lining and something to look forward to please?

Also... I have recently last 5 days had diarrhea and the nausea has gotten alot worse that I have to take meds now, is that normal? I had read that nausea and vomiting are but hadn't heard about diarrhea... on the good side, since this started, Aug 2nd, I have lost 21lbs hehe... just 20 more to go to target weight hehe guess that is a silver lining!

sueh
09-26-2011, 01:17 AM
I had a spontaneous CSF leak 9 years ago. I was one of the lucky ones that got diagnosed right away but they were unsure how to treat it. Long story short, Get the MRI to confirm diagnosis. Skip the cisternagram, a useless test in most cases, never did show where my leak was and was VERY painful! Bed rest didn't work either and resulted in horrible ringing in my ears. Go for the blood patch. I needed two of them but it did the trick. It took a good 6 months to really feel myself again but I am fine now and never had another reoccurance.:grouphug:

micrazy
09-26-2011, 01:14 PM
Thx Sue... I have had the mri but no leak showed and the bed rest is not working for me either so I am afraid the dr might not do the blood patch since there is not obvious sign it is a leak other than every morning the pressure is less than the night before. He is still treating me for migraines... 2 diff meds. This is soooo frustrating, annoying and at times most painful. But thanks for giving me a silver lining. 6mths ~sighs~ but yet done! thx xDD

Kemaxwel
10-04-2011, 12:50 PM
I first experience a spontaneous spinal fluid leak about 8 years ago. That one was fixed and everything was OK for two years and then I started having symptoms again. Each one has had a different set of symptoms, it's been a crazy adventure. The very first one as soon as I would sit up I would have excruciating headaches and they would go away if I laid back down. The first doc I saw tried to tell me I had a Chiari's Malformation but I had one symptom and this one symptom did not appear on the Chiari's list of symptoms. At this time I was in high school so my parents insisted I be transferred to a better hospital. I was transferred to Duke and the doc that saw me immediately said spinal fluid leak! I just waited it out taking caffeine pills and the headaches went away in about a month.

I had one again about a year and a half later but before I could make it to the doctor to have it patched I was in a car accident and during the time I was laying low from that it fixed itself. Everything was all peachy for 5 years then one afternoon I have a headache, these headaches were all too familiar and I held an experiment and made a trip to starbucks and drank a beverage with an extra espresso shot and away the headache went. I made an appointment with my neurosurgeon and he sent me to a radiologist who dealt with the leaks a lot. She did a patch with we thought was successful.

About a month later I started having major back pain, it was bad. I went to see someone at a Back Institute and an orthopedist who specialized in scoliosis correction to make sure nothing was wrong with the hardware I had from a previous scoliosis correction. Nothing was wrong and nothing worked to make the pain go away and during this time my left hand had just about completely stopped working. I had a scan of my neck and there was a big pocket of fluid and at this point the orthopedist said this was a neurological problem and sent me to my neurosurgeon. I was then sent back to the radiologist and she did a milogram to find the leaks, she found one really big leak, this time she used the glue instead of my blood. Everything seemed peachy for 2 weeks and the back pain came back, this time I had the radiologist info so I didn't have to go to my neurosurgeon I could just call her.

I went in to see her and she said the leak she repaired 2 weeks before may have been masking other ones so we did another milogram and low and behold I had 9, yes 9 leaks. She patched those, I had an allergic reaction to the glue (which is somewhat common after the first time it's used on you because it's not matched to your blood type, it doesn't have to be) and so far everything has been good.

I have a connective tissue disorder called Marfan Syndrome and lucky me your dura has the same problem as your connective tissue, it can't hold it's form as good as a normal person. I have been doing some research and trying to find ways to prevent the leaks, this is not something I want to deal with every 1 to 2 years or more frequently than that.

Has anyone found anything in regards to prevention? Are there supplements that can help your Dura?

Also, a few of you have commented on how uncomfortable the test is to locate them, I have had milograms to test my pressure and find mine, I don't think anyone has mentioned that. I would not say they are overly uncomfortable. I really don't feel any of it, the worst part is the burning from the numbing medicine and every time that I've had one so far when they take it out it hits a nerve and I kick my right leg unintentionally. Which is more amusing than anything.

NewToBlog
10-17-2011, 11:27 AM
I had CSF leak after a surgery last year: had a schwannoma (tumor) on my nerve inside the spinal cord. The leak started three days after the surgery, all the standard symptoms, the headache went away about two days later. I didn't know CSF was still leaking. Two days ago they had to open my back again, take all the fluid out, patch the dura.
Now I am afraid of everything: lifting a mug of tea, pulling a heavy comforter, putting on a heavy jacket....
This morning I woke up with the familiar ringing in the ears. It might have started leaking again. I have a couple of questions:
Coffee - I read it helps to slow and stop the leak. Is that true? Or does it help with the headache?
Should I be lying on my back? Or is any horizontal position good? On a side, for example.
I heard enzymes (wobenzym or vitalzym) help healing fast. Did anyone try them?
Thank you!!!

tessme
10-22-2011, 05:59 AM
What a saga, but sounds so familiar. Apathy and arrogance must be universal in the medical system. It is ironic how uncaring the caring profession can be. I agree with you : one can't be meek, but it takes some stamina to find your way around the system.

5thGenTexan
11-13-2011, 04:02 PM
I haven't yet been diagnosed, but from what I read about the symptons, it's possible. I visited a Nose,Ear & Throat guy last summer, but stopped going as the next thing he wanted to do was a spinal tap. I sluffed it off as no big deal; I'll just put up with the daily headache/earache.....but it continues and I am concerned whenever I read what can happen. So, I am making another appointment and continuing down the road to find out what's happening.

I went to him because I have had recurring (almost daily) earaches in my left ear (headache too) and they occur in the afternoon. This has been going on for over 2 years now. In his office, he put a tube down my nose to look at things and when he pulled it out all this fluid came out with it. Lots of it. He said that's not normal and began to suspect a possible CSF at that time. I occassionalt have a pretty good sudden drip after bending over, although it's not daily. He sent me over for an MRI of the brain and it showed no problems/leaks. Next he wanted to move to the spinal area with a spinal tap, but that sounds serious to me and I elected to put it off.

I am 66 years old and I am afraid of these tests. I guess I'm also afraid to find out what it is. But I am thinking I should start up again and see him once more. I'm hoping he'll try some easier and less invasive things first. That's what I will push for. I wanted to touch base with others to see how it went in the beginning for them. How did you go about getting a diagnosis? What test were done first? What test finally confirmed it?

Any info would be greatly appreciated.
Thanks,
5thGenTexan

NewToBlog
11-15-2011, 11:37 AM
. I wanted to touch base with others to see how it went in the beginning for them. How did you go about getting a diagnosis? What test were done first? What test finally confirmed it?

Any info would be greatly appreciated.
Thanks,
5thGenTexan

I was diagnosed after they did MRI with contrast. MRI without contrast didn't show the leak.

pupp
12-12-2011, 08:02 AM
Thx Sue... I have had the mri but no leak showed and the bed rest is not working for me either so I am afraid the dr might not do the blood patch since there is not obvious sign it is a leak other than every morning the pressure is less than the night before. He is still treating me for migraines... 2 diff meds. This is soooo frustrating, annoying and at times most painful. But thanks for giving me a silver lining. 6mths ~sighs~ but yet done! thx xDD

Amitriptyline gave me a bit of pain relief to make it easier to battle for some sort of treatment. My neurologist told me to forget any other meds as they won't work.

pupp
12-18-2011, 03:22 PM
Kemaxwel... I had an MRI with contrast to try to find any leaks. They put gadolinium into my bloodstream via my arm. Since then I have read and heard that the contrast needs to be put into the spinal area / dura. Did you have a CT or MRI myleogram? And what was used for the contrast / where was it injected?
Really want to get to the bottom of this as I have been ill since this struck 01/04/11 but I'm having to push for help every step of the way. Any advice / experience is welcomed!
pupp

swtmisstry
12-24-2011, 09:07 AM
First, I want to say thank you all for sharing your stories on here. I have been dealing with a leak for almost 16 years now. What I would have given for a site like this when I was first having difficulty. I was 17 years old when I first began having symptoms of a CSF leak. It took 5 years for the original diagnosis and another 5 years and 2 surgeries to finally repair the leak. I have had numerous CTs/MRIs and finally the myleogram was the tool that showed the the location of the leak. They were not able to see the extent of the leak until the myleogram. I'm not sure what medium they used for contrast (its been 6 years since the procedure). It was injected in the lower spine and then they tilted me (head down) so the contrast could travel through the spine and brain. I ended up with a secondary leak from having the myleogram. They treated that one with a couple of blood patches. The nice thing is that since they now know the location of the leak, I only have to have an MRI(with contrast) to monitor the leak and any changes to the area. The fight for treatment of this condition never ends. I belong to an HMO and every time I have symptoms I have to see an ENT in my "home" area to get a referral to "my team." Every time I see a new ENT they want to go through all of their own theories before giving me a my referral even though I tell them what my situation is. Once they finally look at my record to see the history (usually takes me getting angry and making my headaches worse), it takes several weeks for the referral to come through. Then I have to wait for an appointment with my neurosurgeon/ENT team which takes another 1-2 months. Fortunately, "my team" (a neurosurgeon and an ENT specialist) are only a 2 hour drive away and are definitely lifesavers.

pupp
12-30-2011, 05:04 AM
Thanks for the myleogram examples.

My neurologist & his consultant anaesthetist have been very reluctant to make any more holes in my dura since I don't seem to be healing on my own from the suspected sponaneous leak.

I totally understand why he thinks it's counter intuitive to stick needles in me and possibly make it worse but I feel that after 8 months of not healing on my own we may have to crack eggs to make an omlett.

My thinking is that if they find the site of the leak they can try a blood patch there and also where they go in for the myleogram. If they don't find the leak then, if needed, they can still do a patch at the myleogram site to mend that & i'm no worse off than now.

I know that having a blood patch isn't a breeze but if it's what I need to get some relief then, knowing the risks, I would opt for it at this stage.

If there are any other tests, procedures or advice out there I'd be so thankful to hear about them!

Here's to 2012 x pupp

vigipatrick
01-19-2012, 11:32 PM
I have been diagnoised with , first a pituitary macroadenoma and ICHP and then a CSF leak. I have been to 2 of the most well respected university hospital systems in the state, only to have doctors disagree. I had a radioactive cisternogram (lumbar puncture and all) that came back "dramatically abnormal" which prompted a call from my neurologist to get to this surgeon at this big university hospital asap, but Do Not Fly. He made all of the arrangements and off we go. They told us to expect to stay 7 to 10 days for the surgery, spent time explaining it to us, etc. The whole family took off work, many were flying in from all over the states. My husband and I infromed our employers that we were on our way to have this surgery and that I needed about 3 weeks off for recovery and all. No problems there. We have the first appointment with an ENT who was supposed to admit me to the hospital. Let's call him Dr. I'm Smarter Than Anyone Else In The World. He took my cisternogram and said "this is garbage" these test are not any good. He then looked up my nose for a minute and said "I do see a glistening fluid, but can't tell where it's coming from". He then said he wanted to do a 10 slice CT with contrast and went on to explain that I would have an IV, etc., and that this would take about 30 minutes. Went in for the CT, no contrast, done in five minutes. I asked the tech about it and she said "Dr. I am Smarter Than Anyone In The World, didn't order contrast. Ok, whatever the smartest doctor on earth wants. We were then ushered back into his office and he said, the CT was negative. You don't have a leak. Relief right? He then sends me over to the Neurosurgeon about the pituitary issue. Now I must say, you have never met "arrogant" like this kid. He say's why are you here? I said, Dr. I am Smarter Than Anyone In The World told me I had to see you, he said "what for"? I stupidly assumed that they exchange information or something. I said well, I don't know, he's the one who sent me over here. So Dr. Arrogant calls Dr. Smater and and Dr. Smarter tells Dr. Arrogant about my pituitary tumor. So he say's, exact words..So, alll I have to say is that when Dr. Smarter repairs this leak I will snip out the tumor. I won't look at any films, I'll just take Dr. Smarter's word, we work together all the time. We are just stunned, what happened here? My husband then said, wait, we know nothing, and I now need some answers, my wife is sick and we are paying you guys alot of money to take care of her. Dr. Arrogant said, you aren't paying me anything, the University pays me. You cannot win with a physician that gets paid no matter what they do or do not do. So, we call home and tell the local physicians what happened and they sent us to a neurologist at "big university hospital" who actually called Dr. Smarter and said, "I think your wrong". Well, that did not go over very well and they argued, then a 3rd doc got in on the argument, saying this is a low pressure headache caused by a csf leak. Finally, the neurologist said, I am sending you to another university hospital and made the referral. He was not going to fight the infamous Dr. Smarter who is 2o years his junior. I still have a leak, I still have a headache, I still feel like you know what and I still have not received care.I talked to Dr. Smarter and he said, I did not see a leak on the CT with contrast and I said "you didn't do any contrast" and he actually said, YES I DID. I said I think I would know if I had and IV Doc. His nurse later called to tell me that I was correct, but the results were still the same.
The doctor I really like told me that when things like this happen that you will often get very poor medical care because doctors don't like to be wrong. So when another physician calls about history, they will not paint you in a favorable light, just FYI. To make it more interesting, I was the Marketing Director for a large hospital system. Now I know what the patients were saying to me when they said they didn't think their doctors were listening to them THEY WERN'T. I have actually been involved in conversations with physicians about patients that they were treating. Terribly unfair in retrospect, wish I would have know then what I know now.I remember one lady came to the ER with chest pains and the doctor called her a frequent flyer in need of a case of Prozac (long time ago) and discharged her, she died on way to her car of a massive heart attack. I am just saying to all, you are in charge of your health care. Do not be afraid to fight the fight it takes to get yourself well. I am not an aggressive or abrasive person and have been very meek to this point, but now I will fight, I want my life back.. Anyone else had a similiar experience?

I absolutely love your assessments but what really made me smile, no laugh was the Mr. Perfect Doctor anaolgies. This is so true. I am experieicing the exact issues. My PCP just prescribes meds to mask the issues after thinking it was ear infection, allergies, sinus probs...etc. So I take chronic pain meds and he sent me to a pain specialist. This doctor performed a spinal injection which magnified the symptoms 10-fold and then added some.
BUT, after teeling him the ER doctor said it may be a leak, he got an appt for a neuro which takes 3mos to get into for the next week! AWESOME DUDE...but he said it wasn't a leak in the same sentence!
So, I totally AGREE! Doctors don't like to be wrong and heaven help you if you suggest a diagnosis like I did. BUT...like you said...this is my body...so when I go into this neurosurgeon on Tues...I am taking this list of symptoms a mile long!
I will take NO PRISONERS! I am tired of suffering! I am sick of these self-righteous know-it-alls! I am the same kind of person...very meek and mild and VERY GOOD at hiding my pain and suffering. BUT...no more MS. NICE PATIENT!.....:)

pmary
03-21-2012, 07:39 PM
I stumbled upon this site yesterday 2/18/09 while looking for more information on a great dr. I just saw at Cedars-Sinai in Los Angeles. Dr. Schievink is wonderful as I just got back from LA 1 1/2 wks ago after he attempted to repair a CSF leak on me. It sounds like you would be a great candidate for him. He is very easy to get in to see as he seems to work his patients in very quickly. He is extremely busy but his whole goal seems to be getting those with a CSF leak repaired.

How long did it take for your symptoms to go away? I had a seond BP with Dr. S a month ago. I do not have headaches now but still cannot walk far without feeling aggravation in my head and still have numbness, nausea, chills with lowered temperature and some draining feeling by my left ear. My symptoms are worse in the morning as I believe I may leak a little at night but then build fluid during the day. Any answers you can give me would be appreciated.

Thanks,

Mary

Munchkinsdad
04-06-2012, 08:56 AM
Hi all!
I'm new here and just happened on this site and thread. I've had a constant severe headache for 4 months straight now. Not only that but dizziness, nausea, blurred vision, high bp, irratic heart beat, numbness in extremeties. It just came on suddenly after dinner in December.
So far, no one has figured out whats wrong. They thought I had a Chiari Malformation as my brain had sunk, but it wasn't low enough for surgery. Others said my symptoms were from diabetes. We've looked into rare poisonings such as manganese, black mold, lupas...all of wich carry the same symptoms. I know diabetes is a progressive killer but at the time I was pretty healthy, physically active in my job and played racquetball 10-12 hrs a week. Since this dehibilitating pain and other junk, I've become a useless waste. Just recently I had to go to er with possible stroke symptoms (numbness on right side of body). The ringing in my ears is extremely loud and quite often I will get a stabbing pain down the side of my head and then my ear would close up and ring like hitting a tuning fork. And to date i now get burning needles in my arms and face, diarea, loss of memory, dizziness, hallucinations and lack of appetite.
Im not one to take medication, hate it in fact, so I had been dealing with the pain and symptoms medication free until recently because the doc said to at least try to relieve the pain so that they can diagnose the real problem.
Well after a dozen different pain medications that didn't work, the last anitriptolene or whatever it's called, I went to neurologist and she came up with csf leak. I've had 5 MRIs, 2 CAT scans and lumbar puncture previously which showed opening pressure of 5.
So this week I have to get 2 more MRIs with contrast to see if there are any leaks in my spine. If that doesn't show they will inject some neuclear junk in my spine to find the leaks, if any.
I wake up with this and go to bed with it. Social life is worst than before :rolleyes: because I can't deal with all the chaos and distractions.
Anyway, the symptoms seem to fit. I haven't tried to lay down yet to see if it lessons the pain but if I remember after hitting the "submit reply" button I will check it out...
Thanks for reading this and I may be glad I found this site!

*denise
06-01-2012, 12:37 PM
I am new to this forum and looking for solutions. I was diagnosed in Jan 12 w CSF leak. Have been hospitalized 4 times w 4 blood patches & have had numerous tests to locate leak(s) & determine next steps. Currently on extended med leave as can not sit up for long periods of time w out head feeling empty, build up of pressure & fluid leaks from my nose. I am trying to learn if anyone has come across self help measures that have worked for them? I am eating better, taking calcium & fish oil & will start a water aerobics class next week. I have read that yoga strengthens your inner core which is your spinal cord. I don't think I am quite ready for that so will see how water aerobics works to perhaps stimulate the production of CSF. My neurosurgeon here characterizes this condition as very frustrating for the patient as well as the doctor trying to treat them. He tells me it will be a long slow recovery. I am just trying to stay out of the hospital. In addition to self help strategies I would be interested to learn if there are any other medical treatments beside blood patches and infusions that have worked or anything new happening. I look forward to hearing your responses. Thank you.

alexis817
06-10-2012, 07:57 PM
It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.

glue patch? whats that... my mom just recently diagnosed with a leak... did three patchs... not working...did surgery ... she also has lupus, .... she wound up with infection in her spine,then they figured out the leak.... three patches and surgery later, shes worse i think.... and weve never been thru or heard of this before, now i look at all the posts, and other sites, and im amazed noone has come out with a good story saying their surgery or patch has healed and never have to go thru it again...seeems to be ongoing... scary...im sorry for you...just as sorry as i am for my own mom...

alexis817
06-16-2012, 09:08 PM
so has anyone at all found a dr that has fixed this long term???

SommerLeigh
07-02-2012, 12:08 PM
Dr. Wouter Schievink at Cedars-Sinai in Los Angeles, CA was my neurosurgeon for my CSF leak. I was diagnosed in November of 2011. After two unsuccessful blood patches, Dr. Schievink performed the glue patch. 2 weeks after the procedure I was fully recovered. 7 months later I have had no headaches or complications. He is one of the leading doctors for CSF leaks and I encourage anyone suffering from this to see him or reach out to him.

westg8
07-06-2012, 02:27 AM
I am 22 years old and I have a csf leak. I was in a car accident when I was 19 and was ejected out of the vehicle and I broke my face/head causing the csf leak.

Basically at random times i will get really bad headaches that will only feel better when I lay down. there is a clear (water like) liquid (not mucus) that will periodically leak out of my nose. especially if i am doing something with my head down like tying my shoes. i have had this for two and a half years now so i am pretty used to it. Most mornings i do not eat because if i do i get sick from the headaches. (unless i have medicine to help my stomach)

if i am really stressed out or cough a lot the fluid will leak out more. (im guessing from the pressure)

they said at the beginning there was a really big risk of infection and to get the surgery. but i didnt happen to have 80,000 dollars in my pocket so that was not going to happen.
it has been two and a half years and i have not gotten any infection and i am still alive. i think as long as you drink a lot of water and don't abuse your body (by drinking excessively and drugs) you should be fine.

i hate the doctors and i hate pain medicine. they always seem to mess up on something. when they were testing for my csf leak they injected this stuff into my spinal fluid and turned me upside down. I asked if i was going to have any side affects (cuz im that person) and they said not to worry there was a less than three percent chance of something happening. well that something happened, my brain swelled and i had to lay around not moving taking steroids for a week. steroids make everything taste horrible.

i decided against getting my head cut open. again. I am just going to deal with the problems i have because the surgery is not even a sure one. and at least i can walk again :) i am just curious if it is really that dangerous to be walking around with a csf leak???

TinkerbellMorgan
11-02-2012, 10:24 AM
Hi I'm 20 and suffering with a spontaneous Csf leak, been bed ridden for 6 months and hospitalised 5 times as my symptoms are pretty severe. I've got my first blood patch booked in for this Weds but just so many questions regarding it all that have gone unanswered as no one seems to know! The neurologists in my hospital and all my doctors have never seen it before so don't really know what steps to take so I'm just hoping so much that this blood patch helps!!!

tom1019
02-08-2013, 02:49 PM
Hello,

A doctor in Japan found spontaneous CSF leak from my wife's lumber and neck.
She had 1st blood patch and improved her headache and other symptoms she had. But it seems spinal fluid leak is still happening.

We brought back her contrasted MRI and CT result from Japan.

I'm trying to find a good doctor for spontaneous CSF leak in San Francisco - bay area, so she can continue the treatment locally.

Does anyone know a good doctor for spontaneous CSF leak in SF bay area?

Regards

Jo*mar
02-08-2013, 03:03 PM
Hello Tom,
You might want to make a New Thread, or you can use the search options to find specific things that might already be posted.

Forum FAQ's (and how to use tips)- http://neurotalk.psychcentral.com/faq.php?faq=vb3_board_faq#faq_vb3_board_usage

a forum search link is in my siggy line

ryaneason
01-13-2014, 04:21 PM
Dr. Wouter Schievink at Cedars-Sinai in Los Angeles, CA was my neurosurgeon for my CSF leak. I was diagnosed in November of 2011. After two unsuccessful blood patches, Dr. Schievink performed the glue patch. 2 weeks after the procedure I was fully recovered. 7 months later I have had no headaches or complications. He is one of the leading doctors for CSF leaks and I encourage anyone suffering from this to see him or reach out to him.

I am in a similar position to where you were - I've had two blood patches with some success, but I still have a leak and symptoms (though not consistently). I'm in the process of figuring out next steps and have been in touch with Dr. Schievink - I'm getting him my scans/history now. My question to you is: did the blood patches you had prior to the glue provide any relief? How did you decide it was time to do glue (vs. additional blood patches)?

djflake
03-03-2014, 08:22 PM
Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!

So on June 17, 2008, I was riding as a passenger in a car and got this insanely painful worse than a migraine headache, which reduced slightly by laying back but man was it bad. By that evening I was in the hospital ER throwing up, and unable to function due to the explosive feeling in my head. I had not had a spinal tap to bring this on, but after going to two different hospitals and many tests from a disease specialist and long stays at those hospitals I was sent to St. Joseph's in Phx and admitted there.

I had developed a spontaneous spinal fluid leak, to which they gave me a blood patch. The pain during the patch was intense however the relief it gave me was virtually instantaneous. It worked for about a week, then failed. Back to St. Joe's I went for another, and it gave me no relief whatsoever. During the next week of hospitalization they discovered a blood clot in my brains vein system aka Left Transverse Sinus Thrombosis. They Stented that but the pain still existed in my head. Long story short I have a bone spurs in the posterior or front side, inside the T2 and T3 vertebrae where the spinal canal is, that continuously causes a CSF leak.

I have been on many pain meds, oral and patches and seriously cannot stand the side effects. The location of the spur, combined with the fact that I am Factor V Leiden (I clot to easily) and have already had a blood clot in my brain means I am not a surgical candidate for repair. So sometimes my pressure is high and sometimes it is low due to the constant pop heal pop, that is caused by the bone spurs. I have had multiple blood patches but they all have failed and that really is because I am on blood thinners, they take me off of them for a while prior to the patches and keep me off for a while after the patches but frankly the risk there is also high so they now will not do anymore blood patches. My only solution at this point...Pain Management and prayer that it will somehow spontaneously heal itself. I have been to the Neurologists at Barrow's and the Mayo Clinic and have heard from one of the doctors I do not remember which one that he knew of one patient that it was 11 years of this and then it healed itself.

The things that make it worse for me, exertion of any kind, barometric pressure changes, hormonal changes ect... Laying down gives some relief, but at this point I experience other types of headaches as a result of stress, medications, ect. on top of the CSF leak that I am now having Hemiplegic Migraines which cause periods of random paralysis on the right side of my body so if I were to have a stroke I would not even know because I am so used to ignoring the Migraines and dealing with the paralysis at home instead of calling an ambulance like the doctors would prefer just in case it might be a stroke on a weekly or even more frequently in some cases just to have them send me home and run up unnecessary hospital bills.

It all seems so daunting and I really know every case is different...I am looking at a pain pump option, but honestly I don't know how effective that will be as I already have a CSF leak that is not a surgical candidate.

The most frustrating part is the only fix being pain meds...pain meds can cause headaches too. So if you hear of any solutions please let me know as well.

I am sorry to hear you are going through this because as you know CSF headache is worse than a migraine. I understand why the doctors don't want to risk the surgery, but when I am looking at another possible 40 years of this it makes it hard to keep a positive point of view.

I wish you the best of luck and a speedy recovery.

djflake
03-03-2014, 08:30 PM
hello neuro talkers
I have had a head injury on the 19th of December last year were I got fractures to my, frontal / temporal / maxilla/ and orbital floor bones on the right side of my head I have no sensation in the right side of bottom eye lid/ nose top lip/ teeth and gum's also double vision in my right eye I came to in the waiting area of a hospital not knowing were I was or what had happen I could not see my phone so asked the receptionist to call my partner she said the police had phoned some three hours earlier and said I was in a bad way but was ok this was 3am my partner came out with my 7 year old when they arrived I was finally seen by a doctor I could not tell my left from right when xrayed I was given a letter to take to another hospital some 30 miles away ( the queen Victoria East Grinstead uk famous for its work WW2 fighter pilots burns victims known as the gini pig club) there I was scanned told the extent of my injury's they said they could not operate until the day after boxing day 7 days away they gave me some anti bots and pain killers and told me not to blow my nose ( No head injury sheet) a couple of days later I got a cough and cold every time I coughed I had clear fluid run out my nose (not mucus) from the cold about an egg cup full a day salty and thin clear liquid I now know was CSF leaking , I returned to the hospital for the op to fit 3 metal plates to the fractured bones I got into bed and told the nurse that I was worried about this stuff coming out my nose, she said can you make it come out so I coughed and it trickled out . she went and got the surgeon who done some neurological tests he said he could not operate and sent me for a brain scan I was to return for the op on new years eve which I did and the op was done the staff at the hospital were all very nice , but I am left with crushing daily head aches, short term memory loss, find it hard to think, low mood, and a salty taste at the back of my throat could this be the CSF leaking I have had to give up work as I could not cope with my job any more, I have an appointment on the 18 September with a neurologist , Can CSF leak internally ? will my symptoms get better if they can fix it ?
ps I was a victim of an unprovoked attack at a railway station but still have no memory of that night
kind regards Vini

Your body continuously makes CSF fluid, and reabsorbs it normally at the same rate it makes it, thus keeping the pressures in your head stable, some people need a shunt due to making too much and the pressures getting too high which if very dangerous and can cause a lot of the symptoms you are describing. You can also have serious pain from low CSF fluid caused by a leak, kind of like your brain sinking as it cannot maintain how it is supposed to float in your head. Either way the pain is intense and of the two I would suggest the High Pressure is worse than the low on how quickly the damage can occur but either way high or low it can cause damage.

I hope this helps. I suffer from a CSF leak myself, exasterbated by other issues.

djflake
03-03-2014, 08:49 PM
I read a question from someone about not hearing many stories about blood patches working, the truth of it is in most cases they do work.

The reason you don't hear about them on these forums is because after that horrible headache is gone you generally don't continue to research.

That said the people like myself that have had bad luck with blood patches either have other reasons why they don't work that they know about, or possibly have not yet figured out why it is not working. It seems that it is such a small percentage of people that fail overall, that not many people can find someone versed or even following this problem, not to mention that there are so many variables in each of those of use that have had them fail multiple times are far and wide.

If my case would allow me to continue having blood patches even though the procedure is quite painful while it is happening, I would do it again with hopes of relief.

Best of luck to all of you!

sowoo
03-11-2014, 03:33 PM
DJFLAKE, thank you for a glimmer of hope. I have been leaking for 79 days now with one failed blood patch and losing hope. Diagnosed with 5 lumbar leaks in Houston on 1/4/14 over holidays while home visiting parents. Back on E. Coast and neuros say they don't see the leaks that Houston "saw." Meanwhile I continue in horrible pain and can't go into work. Trying to figure out next steps. But again, thank you for a glimmer of hope that another blood patch might work. I can't find any spontaneous leaker on the internet or boards that say they were fixed.