NeuroStimulators Implant surgery for Parkinsons - Parkinson's Disease Message Board

perry5 · 05-12-2003, 11:29 AM

Hello Everyone,

I was diagnosed with Parkinson in my early 30's and have been dealing with this disease and it's many debilatating symptoms for over ten years. Over the years as my condition worsened(mostly from rigidity and dyskinesia) the ON/OFF effect and other symptoms made it difficult to work and as a result I took a medical leave from my job. The doctors recommended surgery and told me I was a good candidate for this particular type.

I had surgery last July for inplanting of Subthalamic stimulator(STS) device on both sides of the brain.
After surgery, the device requires some adjustments to work properly (varies by patient usually 4 to 6 months). This operation was approved by FDA last January. Since the surgery I've have noticed that my ON/OFF periods have lessened and I am taking lower doses of meds and as a result,having less side effects.

I would like to know if there are anyone who have undergone this operation and would like to share your post operative experiences as a result of this and simular surgeries.

[This message has been edited by moderator2 (edited 05-12-2003).]

Pelicangirl · 05-12-2003, 10:58 PM

Hi,

Yes, i have had the surgery too, and I find the results remarkable. It's true what you say, the programmer is so important and i think a good one is a must.

I take only 21 mg of Requip daily with an occasional 25/100 of Sinemet thrown in when I feel the need; not every day. It's so wonderful to feel almost 'normal' again.

Yes, I still have PD. this operation is not a cure, but I feel that it's given me a good 10 years back to my life, if not more. I would do it again in a heartbeat.

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Pelicangirl (aka Ruth)

perry5 · 05-14-2003, 06:53 PM

Hi Ruth:

Thanks for your reply!

Glad to hear that you are doing well and your procedure was successful. Just like to know how long it took them to program\adjust before they got the correct settings for you. I'm still in the adjustment period.

[This message has been edited by moderator2 (edited 05-15-2003).]

Pelicangirl · 05-19-2003, 06:06 PM

Hi Perry,

Sorry to take so long to respond, but I've been away for a few days.

I feel that the adjustments are an ongoing thing, We'll always have to have them done. But it took about 6 months to get them all settled down and working right. Then I didn't have any for another 6 months or so. My doctor recently has a nurse doing his adjustments and I went to her twice, then back to my old programmer. I feel that the experience he has is invaluable. He said there are over 4000 settings that can be used and he just raises the voltage or expands the band width each time. It is about an hour drive (with good traffic) to get there, but I feel it's well worth the trip. I have had approximately 6 adjustments with my old programmer and 2 with the newer gal, both of which I think were worthless. I had my surgery in 2001, February and May.

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Pelicangirl (aka Ruth)

[This message has been edited by Pelicangirl (edited 05-19-2003).]

Bruce · 05-22-2003, 07:51 AM

Hi Perry,I have had two bilateral DBS surgeries. The first one they missed the target, and the second one was a success,

The most important things i have learned after having the surgeries was not to have false expectations and that no one can predict the results until you go through the process.

The surgery works best for involuntary movements. I have no tremors or dyskinesia.

The surgery does not correct muscle weakness or stamina. I still don't have normal muscle strength and have poor stimina.

Their was a slight improvement in my balance, but not enough to enable me to walk without a walker.

On the average, you can expect about a 50% reduction in the pd meds. My MDS got the doses right the first time. I now take mostly 1/2 tablets. I also saw no improvement in dexterity. Usually, the younger the patient, the better the result.

I had my surgery at a university med center, and they wouldn't turn on the system and adjust it until all inflammation (about a month) was reduced. I have only one very intense adjustment, which is unusual, but i think their experience and only adjusting the system when i was completely off all pd meds made the difference in not having more adjustments.

Many people have had great results, but you are getting a biased opinion, because patients who didn't do as well, are not as likely to post there experiene,

Bruce