Thursday, July 15, 2010

Results of Baclofen Trial

Sorry for the delay.  I was tired after the Baclofen trial and left soon after for Pittsburgh, so I didn't really have time to update.  

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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