i need help

[nogginknocker]

Hello I am new to this forum and am looking for support and hopefully answers. I have a csf leak. They (mayo clinic doctors) cannot find where it is. They have done 5 blood patches in last 2 years. Some relief but doesn't last long. They have done spinal tap to test pressure,systogram,ct scan,mri,mylogram. They still cannot pin point where the leak is. This is getting real old real quick. Just now have noticed running nose when I bend over and lye down. I'm lost and really need some answers any info and support is greatly appreciated

[ggreg]

Dear Noggin,
Nope, no CSF leak for me.  Instead I fractured my back in three places in a car wreck, I have a related neuromuscular disorder, and am in pain for years.  So, obviously I'm gonna know some stuff about neurology.  With you, you titled your post "I need help," and I find it hard to resist helping folks, plus when you said you were getting real old real fast, I identified with that, so decided to give your problem a shot.  Hope you get your CSF leak resolved.
GG

[nogginknocker]

Thanks for the web sites I will do some investigating before I talk to my doctor. I didn't read your bio at all do u or did u suffer from this type of leak?

[ggreg]

Dear Noggin,
I found a few websites that may help you.  One has to do with a procedure that can be done through the nose in the Hopkins link.  The first link is from our MedHelp website, it gives info and lists everything anybody has posted about a CSF leak situation.  There's a storm here and I have to get off now.  Hope these help you.

www.medhelp.org/healthtopics/CSF.html

www.hopkinsmedicine.org/sinus/sinus_conditions/csf_leaks.html

www.nlm.nih.gov/medlineplus/ency/article/001068.htm

http://cpmcnet.columbia.edu/dept/nsg/ct/cfl.html

[Dr Rajgopal]

Hi Tommie,
Could you please post your query on this forum since I am dealing with this particular forum and I can't switch to other forums. Hope you understand. Take care!  

[TommieB]

Dr. Rajgopal: Just wondering if you could read my post under Severe Headache, Neurologi Symptoms, dated September 7, and tell me what you think.  Thanks.

[Dr Rajgopal]

Hi,
The diagnostic tests for location of CSF leak are- radioactive cisternograms, CT cisternography and MRI cisternograms.  Please consult a neurologist or neurosurgeon to carry out the procedures. Endoscopic techniques may be helpful in locating the site of CSF leak. Please consult an otolaryngologist also for the same. Hope this helps you. Take care and regards!