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

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.

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 .

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?

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.

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?

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.

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.

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!