fears

My next appointment with Dr. C isn't for neary a month, but I've had some things in my life come up that I feel like talking about.

In May I had my second round of Botox in my arm and leg for spasticity from my hemorrhagic stroke. I was readmitted into therapy a couple of weeks later.. My doctor wrote a prescription for eight wees of therapy three times a week, both for PT and OT. the outpatient therapy center we were going to decided I had "met my goals" for PT and ecided I only needed a couple of sessions, before being discharged. My OT only decided to give me two sessions a week indefinitely, we were more than willing to do three sessions a week but they never got around to upping the schedule, then my OT, as much as we love her was gone for three weeks for course teaching and a short vacaion, so during that time we had a different therapist every day and they did nothing more than basically what we were doing at home. Since we weren't feeling the love we decided to look for a different therapy location, and hopefuly much closer to us. We found one that seemed relatively good. and was only about half an hour away instead of the hour or so to the old place.

After a couple of weeks. we're still not convinced we made a good decision. The OT isn't as good as the one we left. The PTs are better, but still not as good as the one I was with from last December to April, but it's better than the nothing I was getting at the old place this time around. Both the OT and PT have pushed Baclofen the last two weeks.. My rehab doc is dead set against oral Baclofen, but that only leaves a Baclofen pump as an option. I really don't want to do the pump as that's major surgery to implant a pump in the abdominal region hat is basically a catheter into the spine to periodically administer a small dose of Baclofen into the spinal fluid.
after my craniotomy, I was really hoping to not have any more major surgery; at least not for a long time.
To even determine if the pump route is a viable option, they have to do a lumbar puncture and inject a little Baclofen then wait a few hours to see if it is effective. Something else I don't really want to do. but in reading about the oral Baclofen, it sounds like the side effects are greater and it is not as effective as the pump option. so it seems that my only hope for ever being able to use my hand again is this extreme option. :-(

I have my third round of Botox on September 18th.. My doctor decided my leg was progressing wellenoughthat I really only needed the injections in y arm this time.. but the following day in therapy my tone was so bad I couldn't make it out to the car and the therapist thinks I probably do still need Botox i n my leg again.. :-/

I wish the rehab doctors had more interaction with therapists and patients to see a better representation of how therapy is going rather than just getting occasional reports and seeing me once every few months for 15-20 minutes to determine the course of action. Even when I was in the rehab hospital, the doctor was never present for any of my therapy. how can they adequately asses the progress if they never have any direct involvement?