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!

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.

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.

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.

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