Dear Stan -
Welcome back to the list. You've been sorely missed. You've had a difficult
summer to say the least. Now that you're back online, I hope you'll receive
all the support from your many listfriends that you need to make it through
your two surgeries. You asked,
>Have any of you in the advanced stages of PD had surgery for
>something else? How did you manage? How did you coordinate all
>the special adjustments we PWP's have to make with a hospital stay,
>an operation and a recovery? Did the PD slow your recovery?
>What were some of the problems PD caused?
Dick's non-PD surgery was minor compared to back surgery (he had a hernia
repair), but there seemed to be no difference in recovery time because of the
PD. He was 50 at the time, and hadn't had his pallidal stimulations yet. He
did quite well in the hospital because he was allowed to administer his own
meds, and didn't have to be off of them except, of course, that he missed a
dose while recovering from the anesthesia.
The main piece of advice I'd offer is to get your doctor to write orders
allowing you to bring your own PD meds from home, and to administer them
yourself (or have your wife or family member administer them) as needed.
You'll save megabucks on the meds, in the first place, and in the second
place, it's the only way you'll get your meds when you need them.
There's no way a doctor can predict how your medication needs will change
with the stress of the surgery; therefore, there's no way for him/her to
write orders that would provide exactly the medications you need at the times
you need them. If anyone tells you this can't be done, stick to your guns,
and perhaps have your PD specialist work with the surgeon.
Dick has been allowed to do this in two different hospitals. We weren't
surprised that they allowed it in the second hospital, because his
neurologist was his primary physician there. However, the first hospital
allowed it on the say-so of his GP, who didn't, as far as I remember, require
a note from the neurologist. (I may be wrong about that, though).
Unless you're on Eldepryl, there aren't any of the other PD meds that we
found to be contraindicated in conjunction with surgery meds. However,
you'll want to provide the surgeon and the anesthesiologist a list of meds
you take well in advance just to make sure.
As for the pallidotomy, that may be the only way to deal with the dystonia
and dyskinesia. If you're at all hesitant about the pallidotomy and want to
try something else first, you might check into trying Mirapex. It has been a
big help to Dick, but because of his pallidal stimulations, we can't guess
how much it would have helped if he hadn't had the surgeries.
Again, we're so glad to have you back with us. Let's hope things improve
from here on. Wishing you all the best. Warmly, Margie Swindler
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