Lucky you Bob!!! I am aware of all these things but when I was diagnosed, scared to death, etc. I was living in my small hometown in upper New York State and there was no way I could make a trip to Denver or Miami even though I knew about both of them. But I was also in a panic mode because my symptoms were so severe and severe enough whereby my endurance dropped 95% causing me to take early retirement at the age 29!
Hopefully Bobbie can make the trip if she chooses to do so. On Mon, Dec 26, 2016 at 9:35 PM, Robert Vogel <[email protected]> wrote: > 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 <(303)%20761-5281> or you can > email them at: [email protected] > > Their webpage is: 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" > > > -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
