After about 10 years, I feel like I found my legs again. I had the trial at MossRehab in Philly. The procedure went well although I would have preferred to be less aware than I was. I wish they had sedated me more so I would be in a sleepy zone and not feel everything from the prep with iodine to the local to the big needle. I did get 1mg oral Ativan 2.5 hours before going to the OR, which I hoped would work, but did not.
Now comes the harder part, deciding if I want the implantation surgery in Philly or Boston. When I saw Dr. L at Spaulding earlier this month he said the only hospitals that really implant Baclofen pumps in Boston are BMC and Brigham. I don't want it at BMC because I have never set foot there. Brigham could work because I have seen two doctors there and been to their ER once. In Philly, my choice is Thomas Jefferson University Hospital, but I have never set foot there either. As far as the issues concerning Mito and surgery go, there seems to be more of a general awareness of the disease in Boston compared to Philly. I also have many supportive friends in Boston with Mito who are more understanding of the disease than my own parents which is a big pull.
I emailed Dr. L, my great mito doc at CHOP (in Philly) and Dr. S, my mito doc at MGH (not to be confused with Dr. S and BI) asking their opinion. Dr. L doesn't have a preference and Dr. S thinks I should seriously consider Brigham. I feel I am also pulled towards Brigham since I am currently living here and so pre-op testing and appointments would be really easy to do compared to going back and forth on the train to Philly for the same thing.
For now, I will schedule the initial appointment with the neurosurgeon in the respective cities. Even though I haven't chosen a city/hospital yet, I feel I need to get the process going and then choose once things come together to determine where I will be living come September.
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