HAD THE DBS AUG 2011,IT WAS SUCSESSFULL ALL IS IN PLACE
IM HAVIBG TROUBLE POSTING,LOOKING 4 AN EX... - Cure Parkinson's
IM HAVIBG TROUBLE POSTING,LOOKING 4 AN EXPERT IN DBS PROGRAMMING 2 LEADING DOCS HAVE GIVEN UP
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supermom
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If it has been declared successful why have 2 Docs given up? The programming is critical but the placement must be absolutely on the money. Do you know if it was placed in the subthalamic nucleus or the globus pallidus?
HI THANK U 4 ANSWERING SO PROMPTLY,IM NOT SURE IT WAS DONE ON BOTH SIDES THE CT SHOWED THAT THE PLACEMENTS WERE ON THE SPOT,DOCS HAVE TRIED REPEATEDLY,EVEN WEEKLY,EVEN STAYING IN THE HOSPITAL 4 2 WEEKS ,BEING MONITOREDITS A MEDTRNICS DEVICE,MAYBE THEY HAVE THIER EXPETS,U CAN B ASSURED THAT I AM NOT GIVING UP,CERTAINLY NOT WITHOUT A MAJOR WAR,IM 50 ,I HAVE 5 KIDS 4 GRANDKIDS,LOTS 2 DO,
Do you know what your settings are on each side for the stimulator? Toy
i keep getting newsetting on each of my programs,abcd with possibilities to go from 1 to another and up and lower voltage according to my discretion,i fall alit ,broke my arm in 2 places with 2 falls,messed up my knee,have a lot of trouble walking,and everybody complains about my speech, i however refuse 2 surrender.
Hang in there. I had DBS in June 2012 and started freezing and falling, which never happened before. Now that I am aware of this, I have been going to PT and taking extra precautions to guard against falls. Being aware helps. Programming takes a long time. I have a low tolerance for voltage, so we go very slowly with programming. Im now seeing my programmer every two weeks where she tweaks ever so slightly. My speech is a little " thick", which is another reason were going slowly. I'm also on 4 mg Neupro. This whole process requires patience and more patience, but the result will be ( and already is) worth it.
Hi Supermom,
falls and speech problems seem to be a problem after DBS .Have you tried a speech therapist and a physio ?They do help and although falls cannot be helped they can show you ways to try to avoid them.My husband was set to high at one stage and his PDNS(Parkinsons specialist nurse) set him lower and explained he couldn't go above a certain setting as this made his dyskinesia return and his balance and speech worse.He had DBS in 2004 and for him the pros outweigh the cons.Have they changed any of your pd meds ?my husband had his cut by almost 2/3's after the DBS was done, he is now on an extra couple of tablets .
good luck,you will get there .
ive upped the meds ,lowered the meds ive done quite a bit of adjustments,and i will continue 2 do so on my own the docs r now tring 2 convince me 2 try the duodopa pump,im not really intersted in more .the dbsdid help my dyskenisias ,i never had atremor prob ,i do suffer from alot of pain however,trying out med mariuna 4 that see how that goes,thanks 4 shariing ,
Where are located? If in US there are some excellent Parkinson's Specialists that should help. The different national organizations should also have referrals.
i can travel 2 the usa,i live in israel,but im american
I have a great repoire with my Medtronic rep. He has given me the ability to change the actual settings on my stimulator, not just switch between the 3 settings. My neurologist is well trained in the adjustment on the unit. I actually got to get the same training at a seminar hosted by Medtronic. It helped me understand how the system works. I live in the Savannah Georgia area.
I had the programming done here in Savannah.
never heard of gainsville?where is it?
