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Topic DBS on the AP Go to previous topic Go to next topic Go to higher level

By mylove On 2009.01.06 17:45
DBS is 'getting the love' again on the AP. Not much new. Interesting that it shows that younger patients may benefit more, though.

By lurkingforacure On 2009.01.06 19:03
What I like about this is that it confirms, to me at least, that some PDers benefit and others don't. This goes to the line of thinking that we should treat different types of PD differently for purposes of clinical trial goals. For example, there is tremor dominant and rigidity dominant PD, most neuros recognize this. yet when they do trials, if a huge percentage of ALL PDers, regardless of their type of PD, the drug/therapy will be pulled and not further tested. I am talking here of spheramine and ceregene, both of which were deemed "statistically" insignificant yet there are PDers on other forums I visit who got these therapies and gained significantly (one lady said spheramine gave her 10 years back!). So I am hopeful they will look at this and begin to design trials accordingly, and not try to lump all PDers together.

By mylove On 2009.01.12 16:24

Looks like this kid has had it for dystonia, unless I miss my guess. It's funny the things that pop out at you from the news once they hit your radar once.

By lurkingforacure On 2009.01.12 17:05
I just typed a whole reply and my son hit the computer and somehow deleted the whole thing, ARGH! What I had said was that I read recently that they have found that if they put additional leads in another part of the brain (pineal? not sure) it helps with BALANCE! I know of nothing that helps with balance and boy, could that help a lot of folks.

The accounts of successful DBS are almost miraculous, although I know they do not work for everyone and can actually make things worse. Apparently they are continually revising the questionnaire of qualifications for DBS so that fewer people get this risky surgery without a substantial likelihood of significant therapeutic benefit. We are seriously considering it for many reasons and one thing husband particularly likes about it is that it is reversible.

By Pick On 2009.01.12 18:30
Selfishly, I can't wait until this fades from the media spotlight. My dad watches the news all day and every time he sees this he gets excited that it could "cure" him. It breaks my heart that he is not a candidate for DBS and he can't understand why.

By LOHENGR1N On 2009.01.13 00:06
I side with Pick on this one. (Maybe it's the New Englander in Us?). I'm sure some are more current on this than I am. I am concerned however with the it's reversible aspect? How do your reverse the boring a hole through the brain? Sticking (inserting) a wire into the brain is poking or making a hole. If anyone has come across someone or some info of post-op pt's who lost ...lets say speech from this procedure and had it reversed ...and by doing so regained speech would you please send me a link? Yes you can have the wires removed and the transmitter took out, but loss of functions restored? If any are few and far between. But this is a personal decision and it's not mine to make for anyone. I urge EXTREAME caution when making it. Remember the junkyards are full of cars bought on the spiel of used car salesmen instead of checking them out thoroughly beforehand. How much more so should your investigation be, before letting one drill through your skull, stick wires into your brain and shock you with small controlled current? Well that's my two cents worth, take care, best of luck and hang in there!

By annwood On 2009.01.13 12:48
I agree. I was taken back by the reversable claim. Once you have entered the brain you can take out the wires but not the effect. I am happy to see that they are apparently being more selective in who gets DBS. I can only discuss my knowledge and personal experiences. My husband awoke from his DBS and he was unable to speak or recognize anyone. He was never "right" after the surgery but then it might just have been time for his dementia to rear it's ugly head. On the other hand we have two friends who have also had DBS at other institutions and they are not doing well either. I am so happy that I let my husband make the decision to go ahead with the DBS. I merely told him it was his decision and I would support him either way. He was a physician and well informed. I do think that he was unrealistic in his expectations - he thought that he would be "well" afterwards. Not the case. DBS does nothing to halt the progression of PD it only masks the symptoms temporarily.

I am sure that somewhere there are people who have had wonderful results - I just haven't seen them. One must carefully look at what they are calling improvement. The criteria they use may be different from what you are expecting.

By bandido1 On 2009.01.13 15:35
It is a little late for me to be considering DBS so I easily rejected my neuro's suggestion to consider it. My convoluted thinking when added to the many posts I have read leads me to believe I would spend the rest of my life in the "Cuckoo's Nest" Bob C

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