Hi,

I just camne back from my appt. with Dr. Gillen for trigger point
injections. He does them differently than Dr. Delaney- uses Lidocaine first,
then puts cortisone in the same spot. I was amazed that he was the only
physician brave enough to touch my piriformis-- but only at the very edge
where he was certain it would not touch my sciatic nerve. Out of the 25
spots he wanted to inject, I only managed to live through twelve-- trigger
point injections hurt. He injected my back, behind, and hamstrings,
interestingly, and wanted to do my achilles tendons/adductors/abductors, but
I have asked to wait till the appointment on the 27th for this-- Dr. Gillen
is working on a Saturday just for me. He was very interested to see how much
my tone fluctuates, and got to "see" dystonic movements as I think the team
in London would describe them. He was happy that I will have the opportunity
to go to another surgeon who does pump surgery (with no mention of my first
experience on the referral- since my GP read it to me over the phone!). This
was done because we have no clue how valid the results will be when I get to
see this physician-- it might be a year-- and because I have already asked
to trial more than one medication in the  pump at a time, so the
circumstances are totally different.

Dr. Gillen wants to think of some combinations of drugs he thinks might work
best, and then try them all-- no blind trial, just whatever helps my pain. I
think it needs to be more than baclofen. I am now taking 130 mg/ morphine a
day, using 2  25 mcg/hour fentanyl patches, and taking 30 mg Baclofen orally
just to control pain/spasms. Will work up to more Baclofen when I can, as I
have not even come close to therapeutic levels. But, as Dr. Gillen so aptly
put it, he is thinking more along the lines of a pump now because I have
become a sleeping beauty--  All I do is sleep. I will continue to pray and
let God hold this in his hands. Please say a few prayers for me that the
injections help so that I can sit to write exams... One still sits
unfinished on my desk because it was too painful to sit. I have not even
been taking meals in the cafeteria the past 2 weeks.
I AM GLAD THAT DR. GILLEN GOT TO SEE ME ON A BAD DAY. That is why dystonia
is so hard to diagnose-- tone and symptoms fluctuate. But now I HAVE A
DOCTOR WHO BELIEVES ME... HOW NICE IS THAT??
Off to take some much needed medication and lie down-- had to get groceries
this afternoon as well so I AM WHIPPED.

Take care, and thanks for believing in me, too...
Jenn