When is it time to have DBS surgery?

[merlethegirl]

[goose63058]

I had DBS done 2 yeas ago. I had reached the point where the additional medications to the carb/ levo didn't work and I had more bad days than good. My batteries still aren't set right. When the stimulation probes are on I can't walk. I feel as though electrical sparks are shooting out of my finger tips. I am deteriorating since I had the surgery. In my opinion it was not a success. The only way I would go under the knife again is if there is a cure for this affliction.

[merlethegirl in reply to goose63058]

I thank you for your feedback. I'm sorry DBS didn't work for you. I'm scared to have the procedure and am doing research on it. I'll eventually make a decision, in the meantime I guess I'll look at electric wheelchairs and vehicles to haul it around.

Thanks again.

[goose63058]

I have an email friend ib Ohio that had it done also, as far as he is concerned DBS saves lives. just be sure to resurch research research. I was given DVD's to watch of the before and afters of people that had the procedure done. As far as I could tell this was indeed a life saver. Who knows with out it I could be even worse, who knows? The recovery was non eventful I had three surgeries each on a Friday, I was just fine by the following Monday. I think maybe the worse part was the MRI before surgery with the HALO on.

[Jbcourcy in reply to goose63058]

I had DBS done on April 6 (a "Friday) and agree that the worse part is the halo on but not during the MRI but actually in my case, being pushed back for surgery because the surgeon had an emergency with another patient so the frame was on three hours longer than needed. Caused me to have a headache up until the next "Friday" April 13th when I had the stimulator/battery put in. I actually was in more discomfort from this procedure than the brain surgery whcih I was awake for (not as scary as it sounds). I know that the honeymoon period I experienced for almost two weeks gave me hope that when the stimulator is turned on May 4th, I'll be symptom free or at the very best, more on periods and less off periods. I'd say if your doctor suggests it to you and you're having more off periods than on and you've reached your max on meds, consider having the procedure done.

[moonswife]

Mike had it when the shaking 24-7 made him lose so much weight. It certainly stopped that, and he feels safe to use power tools again. Worst side effect was at end of first year. Spine started to curve because only one side being stimulated. 2nd surgery fixed that. Now a whispery voice is the only sign. Most people forget he has PD.

[Pete-1]

I know a lady in PD chatroom who used to suffer from gait freezing, not just for up to 30 seconds like I do but for hours at a time, 2 or 3 times a week. Post DBS that is no longer a problem - she has her life back.

[Bpetie6]

I had DBS done twice. First time I got an infection in my brain, but I had talked to and see so many improvement cases that I decided to do it again. 2nd one was a success. I'm not perfect, but prior to surgery I was either very dyskenetic from meds or stiff as stone when off meds. I was at the 10to 11 year mark from when my symotoms started. If I had to do it all over again I would have done it sooner.

[Bpetie6]

Post surgery dyskenisia is 80% better, mobility when off is 70% better. Speech has been a problem.

[Jbcourcy in reply to Bpetie6]

I had problems with my speech prior to DBS. In some cases I've heard it's improved. Did you have speek problems before DBS and they got worse with the DBS or did the speech issues develop after the DBS? I get so annoyed when people tell me to speak clearer and louder. I've done LVST and I guess for the sake of others, I need to practice the exercises.