Any Leakers Out There???
 

Hey,
Thought I would post this first thread. On the old site I was jbarsz...and have been suffering from CSF leaks for 4 years.

Anyone out there??

I <i>might</i> have one or maybe two.... depends on how you look at it. Anyway, if this sounds a little farmiliar, let me know. I'm not concerned too much about it because there is nothng tha accompanies it.....

Once in awhile, my ears seem to have something comming out of them, when I put my fingers to my ears, the fingers are faintly moiste, and I make sure my hands are free from any moisture beforehand.

I have leaks
 

Hi. Just read your post about leaks. I know a great doctor in Philadelphia who can diagnose your issues. And then another in LA who does the surgery that fixes them I was told he was the top doctor in the CSF area. Let me know if you'd like more information.

Who is the Philli doctor...been leaking for 8 years..I'm 25 and in NY

8 years..where is the leak?

Been leaking for 6 years and just diganosed last October 2010. I have a great doc in upstate ny if you are interested.

30 Plus Days of Misery
 

Today, I am still feeling pressure in my head, ringing in my left ear. It all started about 34 days ago - I began vomiting, felt as though I had the flu. I had never felt this sick in my life. About 10 days later, got this HORRIBLE headache; however, it would go away when I laid down. I saw two neurologists who prescribed me different meds, 1 hospital stay---diagnosed with "migraine".

I went days more with pain at home because I thought "hey, I have a migraine!" Thankfully, I listened to my body and went to a different hospital. I was told by a third neuro that I had what they call a csf leak. I was admitted, numerous tests ran (blood work, MRI, et cetera). The neuro asked me if I had any recent trauma...after jogging my mind realized the day before I became sick I saw a chiropractor who did the whole back and neck manipulation.

MRI never showed actual leak, but clinically doctors made the determination that I had one. One blood patch done, spent 1 week in the hospital, am home now but still feeling strange---pressure like feeling in head, and some pains which come and go, but thankfully I can stand an sit up without being in tremendous pain. I am only 29 years old, I don't smoke, I am healthy; going through this has made me appreciate life so much more. I am not sure if anyone has gone through what I have, but if you have I feel your pain. I might have to have another blood patch done, but neuro is giving me a week to see if I fully recover.

not actually diagnosed but being treated as if I have a leak... all started aug 2, 2011 for me =/

Leak after Lumbar Laminectomy
 

I had this surgery (L5 S1) a year ago and since then have had these unpleasant sensations that you all describe: pressure in the ears and temples, a lot of ringing in the head. Once the sensations were so strong, I passed out for 5-6 seconds. Several times mentioned these symptoms to both my GP and my neurosurgeon and they wouldn't say anything. Finally, last week when I had a post-surgery MRI they saw a big (tennis ball size) mass between my spine and the muscles... Now I need to schedule a surgery for the leak. I'm really concerned now not to have it again as I don't even know why I had it in the first place. Some people mentioned caffeine here. Does it really help? I thought I didn't strain myself and didn't lift any heavy things after the surgery, and I still had the leak...

Hi, Im so sorry to hear your story, it sounds almost identical to mine! I too had surgery L5/S1, during which I had a dural tear, a week later I had a massive CSF leak, and was rushed back into hospital in and out of conciousness. They repaired the leak a few days later but during surgery I contracted meningitis. 2 days later a further massive CSF leak from the repair site. but they could not operate until the meningitis was treated. Finally after 12 day they operated again to repair the leak a second time. I was in hospital 3 months in total and then sent home on bed rest. 3 days later I had what I believe to be another leak although this time the fluid wasnt actually leaving my body. It just accumilated in the back space to a size of a grapefruit. I was told there wass nothing they could do and stay on bed rest. This all happened in Sept 2007. I believe I am still leaking but am really at the end of my tether trying to get someone to believe me. I have had a radionucleotide cisternography in 2008 which showed a leak after 48 hours but still no one believes me. I am now living with the diagnosis of 'migraines'! I am trying to get a referral to see Dr Linda Gray or Dr Schievink through the British National Health service. Long battle I think but I wont give up. I so hope that you get healed and sealed and if you can see either of these doctors then that would be the best thing you could do in my opinion. Good luck I really wish you the best x