To quickly bring you up to speed, and to refresh your memory, I was
diagnosed with TM at T-7 in Dec. 1997. I have had a fairly remarkable
recovery. I am able to work but must drive with hand controls due to
loss of "light touch sensation" in my feet. I have had tingling in my
feet and legs the whole time but no pain (thank goodness). Well, I was
just celebrating my one year anniversary in December and now here it is
January and I'm in trouble again. Last Tuesday I noticed that I had
large areas of numbness that went over my waistline (at T-7 everything
was from the waist down). I got scared and bullied my way into a new
neuro's office (new insurance) and he did some background and testing in
his office. He did the pin prick test on my back and I didn't feel the
sharp point until he was almost to my shoulder (he dictated that it was
at the T-3 level). My arms and hands are tingling and my face feels
strange and even my scalp has started tingling. None of this is to the
extent that my legs were involved (total numbness and loss of temperature
sensation, etc.) My doc suggested I get MRI's done again and some blood
work. We decided to wait on IV steroids until we see what the MRI's
show. Sunday morning I had the MRI's done (brain, c-spine, and t-spine
all w/and w/o contrast). The good news is that the brain MRI came back
normal (perhaps I'll escape the MS thing). The maybe not so good news is
that they are having a neurologic radiologist looking at the films and my
doctor mentioned (in a message on my answering machine) that we may be
looking at "the AVM thing we discussed briefly". Well, I guess it was
very briefly because I don't remember discussing it or remember what it
was. I called my sister-in-law who is a nurse and she told me that it
stood for Arteriole Venous Malformation. I got on the internet tonight
and from what I'm reading it isn't exactly the best news - surgery almost
a certainty. My question is, has anyone else with TM ever been told they
have this condition? If so, what did you do about it? My husband says
well, at least it can be treated. However, I'm not too crazy about
having surgery on my spine - I am, however, even less excited at the
prospect of it starting to bleed at some point and causing me to have a
stroke (Only if in the brain? Literature didn't specify but I was
looking in an article dealing with brain/spine AVMs), and probably dying.
So, any insight or info would be most appreciated. I will hopefully be
talking to the doc in the morning but I'm still interested in any info
you may have out there. The good news about my new doc is that he has
many TM patients so at least he knows something about where I'm coming
from.
Hope all of you are doing well. Doc are you still out there? What about
you Gunny?
My best to you all.
Lori in Florida
___________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com/getjuno.html
or call Juno at (800) 654-JUNO [654-5866]