Hi Janet.,
I had to google you diagnosis to learn what it is. Your a rarity again.
One in a million for TM and what are the odds for a TMer with a spinal
hemangioma? (After reading about it I realized my daughter has used
this term to describe two bruise colored birthmarks on one of her twin
daughters.)
I hope you are able to see a neurologist sooner than a year. It's sad
that it takes that long in your area. Can you come to the U.S. to see
one here? I haven't been to either Johns Hopkins or Mayo Clinic, but
surely someone can help you.
You will be on my mind and in my prayers.
Patti - Michigan
On Wed, Dec 14, 2011 at 4:11 AM, Janet Dunn wrote:
Hello Everybody
I have had TM and the various symptoms of since August of 2004. I have
a lesion on my spine at T4-5. There are a few issues with that, put I
have been managing. Take my meds, keep my stress down, rest, - you all
know the routine.
I was doing so well that this summer I actually began to wear “proper
ladies shoes” - including a pair of boots with a 1.5 inch heel – a
sturdy heel, but a heel none the less. I was weaning down on my meds –
life was grand to say the least.
Then in October my feet began to tingle when I dried them with a towel.
I really didn’t think too much of it until that feeling moved up the
legs. I went to visit my daughter in Victoria in the beginning of
November, and found that the right leg (the troubled one) would give out
quite easily, and I would tire out. I got back to my home town and
went to see my Doc. He sent me for an MRI. And this is the news I want
to share. It is rather a “good” news, “bad” news situation.
The MRI showed that the lesion of the cord at T4-5 were somewhat
technically different, and the cord is somewhat attenuated (squished) .
Essentially the clinical changes, and the subtle increased signal at the
t4 – 5 levels do not present any significant change, and not of clinical
significance.
However, the report continues, there is a hemangioma at t4 and t7.
Basically a growth on the spinal cord. And that of course is pushing on
the cord itself which in turn is causing all the extra pain, and the
return of all the burning that I am experiencing, as well as the
numbness that is creeping up my abdomen. Wonder when it will stop, and
what kind of damage will it inflict before it does. Two months ago you
would have had no idea that I had a chronic illness with bothersome side
effects – today you do not see me very far away from a cane.
The joys, the joys. Anyone ever heard of this and the outcome? Anyone
going to see anybody at John Hopkins or at the Mayo? I am supposed to
be seeing a neurologist again but that could take a year.
So whether there is a clinical significance or not, there is definitely
a physical significance, and I really don’t care for it!
Thanks for “listening” - that is why I love this list, and the people
on it.
Janet Dunn
Fort St John BC
