Specialist for SPONTANEOUS CSF LEAKS

[adventurer53]

It's been very tough year with CSF leaks more than 9 months this year. I've had a number of blood patches but most only hold for three days if at all. Because of the great number of them over the last eight years the doctors are very reluctant to do more. Right now my doctor said- no more now- too risky. The surgeries keep coming. Last February I accidentally managed to get a toothpick into the side of my foot- seriously it went in and then broke off. It couldn't be seen so had to be surgically removed but not before a strep infection got going. Then I had another surprise surgery- needed vocal cord surgery. It was benign and I had voice rest for a month- not easy but a good experience- I became a better listener!!!!! God has been gracious in giving me joy pops along the way. Then this Fall my right thumb was reconstructed and they did Dupuytren's contracture release on several fingers. Not a surgery for sissies! I'm regaining strength in this hand now.
     Does anyone know of a doctor who specializes in spontaneous CSF LEAKS? I've exhausted Mayo in Rochester as much as I love my doctor. I read about Dr. Schievink in Los Angeles CA. I'm sending my records to them to look over and see if they can help me. I would love to be able to live upright more!
     Another question- anyone have horrible all over body sweats and then cold clammy skin with leaks when they stay up and push through the pain????
     Sorry for this long post!
     Happy New Year- especially to you Selma!!!!!
Shirley

[selmaS]

  I was referring to after a PFD....did you have that...I know you were de-tethered....but did you have decompression for Chiari?

That is the type of patch I was wondering about since they can fail and cause leaks....

[adventurer53]

Thanks for the encouragement! I'm scheduled to see my head neurologist but not til the end of March!!! I asked to see the only doctor at Mayo that Insee has published a great deal on spontaneous CSF leaks. The clinic that asked for the referral was told I need to stay with the one I already have. Since its in the same neuro area. We tried to explain that this guy is the expert- they said he's now semi retired. When I go for my appointment I'll try to get a referral to this doctor.
I've had some hours of relief and two days of relief in the past two weeks. That hopeful. Have been layering essential oils.
Selma all the patches I have had were just blood patches and one fibrin glue patch plus a ten day stint in the hospital with a drain in.  

[KerriC1]

i also just wanna chime in and say it sounds like it's been rough for you. I had a leak from a spinal tap years ago while undergoing testing for ms. Had a miserable 8 days with a few er trips for iv meds and then admitted to the hospital for a blood patch. I couldn't imagine going through that more than once. I hope you find some answers and some relief!

[selmaS]

  Hi...wow you have been thru the ringer huh?...I know you saw several specialists a few yrs ago and were told no EDS...BUT...I am wondering if they missed something....all these leaks are due to something.....

What type of dura patch did you have?

Aww Thanks and to you too....and one with no more CSF leaks !!