Re: ATM

Karen Luglio (tootsie(AT)voicenet.com)
Sun, 22 Dec 1996 18:22:54 -0500 (EST)

At 11:28 AM 12/22/95 -0500, you wrote:
>
>
>----------
> Karen Luglio wrote
>
>> I am a 42 year old female diagnosed on October 20 with acute transverse
>> myelitis. I was improving clinically and had repeat MRI's of the spine
>> which just came back as showing increased inflammation and spinal cord
>> swelling at the same area. I am now going to a specialist at the Univer.
>of
>> PA. for a possible spinal biopsy. Has anyone else had repeat MRIs which
>> showed anything?
>
> Good question! I just phoned my MD this morning to find out the
>result of my second MRI. With any luck I will have an answer by this
>afternoon --since he's a friend and coming to dinner tomorrow nite and I
>have told him he will get no dessert if he fails on his mission --- but
>seriously --a spinal biopsy?
>
> Well, I got the results and my friend got his dessert! My second MRI
>shows some continuing inflamation (or infiltration) between T8 and T10
>--this is great news because there was initially lesions scattered
>reandomly from T6 to T12. There is now some "thinning of the cord" at that
>level too --who knows what that means --?continued irritation has not
>allowed re-myelination? . In any case this is more or less in keeping with
>the slow but continuing progress that I have experienced over the last six
>months.
>
> Spinal biopsy?????????????? WHAT FOR??? Once that piece of your
>spine is "taken out" --it's GONE! If there is some concern about a primary
>spinal tumor --then yes that might be appropriate --but if it's just to see
>what inflammatioin looks like --I'd run (or wheel) the other way in a hell
>of a hurry. October, if I am correct, is only two months ago --hell --two
>months after my initial attack I was still trying to sit up without falling
>into my knees and I had to brace my elbows on the table to cut my food. My
>neurologist said there was no point of repeating the MRI until after six
>months --which happened. Of course --with a worsening condition there are
>a few questiions --like --is this indeed transverse myelitis! It's
>possible if the initial "infectioin" is still brewing --then things would
>be getting worse. Let's not forget the theory held by "most" is that this
>is a condition caused by deposition of immune complexes, not direct
>infection (which is not to say some unusual bug is still not hanging
>around). Sounds complicated but I would submit to a spinal biposy ONLY is
>alllllllllllll the other possibilities have been THOROUGHLY investigated.
>
> There --that ought to annoy your physician -- "who the hell does this
>guy think he is anyway?" --i can just hear him/her saying --;-)
>
>Bryan
>
>
>

Dear Bryan:

The reason they mentioned the biopsy was to rule out a possible spinal
tumor. But I met with the neurosurgeon at Hospital of the University of PA
in Philadelphia on Friday, and he did not feel that this was tumor activity.

I am seeing a new neurologist on Monday because my current neurologist
considers him the best in the field and was concerned about the continued
inflammation and swelling on my spinal cord. I must admit I laughed out
loud when I read your letter. The part about running or wheeling away from
the doctor was funny. So was your reference to trying to sit up two months
later. I have pretty good mobility. My knees and waist-hip area feel as
though someone is pulling them together with a weighted belt. I have a lot
of dull pain at the back of my neck where my spinal injury is. My hands
move much better than they did initially but still lack sensation. They
believe my ATM was caused by an autoimmune response to an antigen either
introduced at the time of my epidural steroid injection. Another theory is
that since I am a nurse -- and an IV specialist at that -- I'm exposed to a
lot of "bugs" at the hospital and could have had a virus laying dormant in
my system that found the opportunity to cross the blood brain barrier. WHO
KNOWS. I'll probably never find out.

Thanks for your letter.

Karen