Hi Again Bobbie and All, My previous email was sent via iPhone, now that I’m at my computer I can give you all the details.
In my opinion, after doing a lot of research, the two places that know the most about Syrinx—(Syringomyelia) are the University of Miami School of Medicine (Miami Project) and Craig Hospital in Denver. I would go right to the expert, right away!!! I’ve had the good fortune to interview and ask questions of Craig Hospital’s expert on Syrinx, Dr. Scott Falci. Dr. Falci is an expert on the subject and has done surgery on over 1000 people with SCI and Syrinx. Dr. Falci and his team are fantastic at answering questions and can give you a lot of information on treatment options based on your symptoms (information, not advice) over the phone. They are quite quick to respond to phone calls, again, in my experience they return phone calls within a day or two. The main person that takes the phone calls is Charlotte. Their direct number (for Rehabilitative Neurosurgery) is (303)761-5281 or you can email them at: [email protected] <mailto:[email protected]> Their webpage is: https://craighospital.org/programs/rehabilitative-neurosurgery <https://craighospital.org/programs/rehabilitative-neurosurgery> They treat based on symptoms—from the symptoms you describe, if it was me, I’d be on the phone first thing tomorrow. The sooner you get a handle on this the better. From what I understand *sometimes* you can regain what you have lost due to Syrinx, but the key is if you are loosing feeling and/or movement, it is important to find out what to do and do it right away. I have talked with quite a few people that have been treated by Dr. Falci and they say he is fantastic, both as a surgeon and as a knowledgable, empathetic doctor. Hope this helps. Bob Vogel > On Dec 26, 2016, at 6:09 PM, Bobbie Humphreys <[email protected]> > wrote: > > I was diagnosed with a syrinx back in 1995 and, until now, have had no real > problems. > > Since the first Saturday of December I can not feel my right hand 🤚 and using > it, like I've been able to, has become nearly impossible. > > Picking up and holding a fork, tooth brush, spoon, pen, paint 🎨 brush, > opening medications and even driving my chair has become an extreme challenge. > > Does anybody know of any way to alleviate the pressure? > I don't want to get it drained because my Doctor said it can come back > immediately. No way do I want a shunt. > Bobbie > > "You must fail in order to succeed"
