Hello everyone, I have a csf leak that was caused from a fall on ice about 7 years ago. Last year I had a blood patch done at the Mayo clinic in Rochester Minn. This year around May I had another one done in my home town. Both have failed and I just started getting the headaches back. Looks like im scheduled for another in a week. Oh Yeah! alot of pain. Im very frustrated and am beginning to feel theres no end to this can anyone give some suggestions or informaton that might be helpful. Thanks to everyone

Hello and welcome to NeuroTalk!

I'm so sorry for all the pain and frustration you're experiencing. I'm sure someone with more experience with this condition than I will be along shortly to offer some suggestions.

In the meantime....I just wanted to welcome you to the site!!

Time to look for a neurosurgeon that will put in a permanent patch.
Try looking at surgeons that do a lot of pituitary surgeries (CSFs leaks happen at times with those surgeries) and they may take you on with more than a blood patch.
Large universities usually have pituitary centers - look for a very very experienced surgeon, preferably using an endocopic technique so they can see more.
In the mean time, are you laying as flat as possible and using caffeine to help?
Good luck.

Hi,

I had a spontaneous csf leak, I had a blind blood patch and then two caffeine infusions, and then followed up with a myleograph to ensure it worked. I suggest you ask for a myleograph as they will be able to see whether you have any further leakages.

It's been 6 months and i dont have any headaches.

Marks, how are things now?

s[FONT="Courier New"][/FOsorry to hear you have been dealing with what seems to be the most complicated condition to get treated for.i had a csf leak since 2007 till present,i know all to well how hard it is to manage with the pain .i've done alot of research after having 10 blood patches,they do not work for everyone it depends on how it is administered.is the procedure being guided by radiologly? Because if it's not you are at risk of getting more tears. There is also another procedure to get it's called-a glue foam patch, this acts as a sealer in side the spinal sack. This procedure has to be done by a neuro surgeon, i found living on the east coast that in philadelphia ( thomas jefferson hospital) n.y.c(columbia presbertyrian hospital) these hospitals and doctors have more insight in the matter.i went to about 30 doctors and finally got the glue foam patch done and have been symptom free

the blood patches don't work?

I'm quite interested in someone explaining the use of caffene to help stop the headaches. (i'm completely new to the game)

I'm due for another LP next week and a bit worried about the headaches as the first and last one i went in for was 5 unsuccessful LP's which must have leaked as I was flat on my back for 6 - 7 days and still not completely better yet but enough to walk around and finally take care of myself!

I hope you find a solution that works for you mark!

http://www.neurologyreviews.com/jan02/fluid.html
Many treatments are employed for cerebrospinal fluid leak headaches, Dr. Mokri noted. The use of caffeine “has been somewhat effective in some of the patients, while analgesics and nonsteroidals are used by others. Corticosteroids have also been used, but the claims of effectiveness have been mostly anecdotal. Furthermore, some of the patients make spontaneous recovery after variable periods of time.”

http://uimc.discoveryhospital.com/main.php?t=enc&id=584
CSF leak following a lumbar puncture can be treated with caffeine, and hydration. A blood patch may be placed at the site of the spinal tap. This is a procedure where the individual's own blood is injected at the location of the spinal tap, sealing the hole so as to prevent the leak.

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0
A 69 year old man presented with headache on arising and relieved with recumbency. His clinical presentation, laboratory data, response to treatment and radiographic evaluation were consistent with spontaneous low cerebrospinal fluid pressure from CSF hyperabsorption. Cisternography showed rapid accumulation in the kidneys and urinary bladder, without evidence of CSF leak. His headache was eventually controlled with two blood patches and oral caffeine.

It was something I know my friends did and I know my doc said if I got a bad headache after surgery to lay flat and drink coffee - it does not work for everyone, but it seemed to help a bit.