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09-17-2011, 04:19 PM | #1 | ||
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Junior Member
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Paula here is some information on PIG-D from the MJFF site: http://www.pdonlineresearch.org/pdgu...t-disturbances
My company works extensively with NIH and the FDA. The FDA can be helpful or very unhelpful to consumers. It is very difficult to get permission to do PPN surgery in the US because of the FDA...we tried and failed here first. I am glad we ended up going to Canada, although it was very costly to do so. In Canada the team at Toronto Western got permission to do Susan's surgery in three weeks from Health Canada. We waited for one year through a center in Florida and never got permission. If you go to Clinicaltrials.gov you will see that the only current trial of ppn dbs is taking place in France. For Medtronics, the maker of most of the DBS stimulators there is no particular interest in supporting or pushing trials of PPN DBS. They can make enough money from STN DBS. It is a situation where there is insufficient motivation on anyone's part to push forward with the studies and research which would get this surgery more widely available. Also, since the PPN surgery is harder to do successfully doctors and hospitals aren't interested in increased risk that such a surgery would entail. Frustrating situation which at the end of the day is not good for patients. |
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09-17-2011, 08:02 PM | #2 | ||
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In Remembrance
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Quote:
i guess i thought gait and posture instability were the natural progression of rigidity. i can see when mine goes bilateral its all over. i learn something new every day tho. thanks Howard.
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paula "Time is not neutral for those who have pd or for those who will get it." |
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09-18-2011, 12:30 PM | #3 | ||
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Senior Member
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Thanks, Howard, for this very informative thread, and best wishes to your wife. I hope the DBS continues to bring improvement in the quality of her life and yours. It is always good to read of people for whom there has been this kind of turn around.l
It was very interesting to read. I had never heard of PPN-DBS procedure. Your links were interesting too, I had heard of PIG-D as a subtype, but did not have any idea that there was a surgery that targeted it. I lean and fall, and have no tremor, so your post was of special interest. I have noticed quite a few people who have posted on various forums who seem similar, and echo your wish that this information should be more available. As someone whom STN-DBS seemed to offer very little I had quite a closed mind to surgery. At the very least information like this opens up a discussion, and at best it has the potential to help transform things. Thanks again, Lindy |
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