Essential Tremor

[dodson]

I have had ET for about 15 years and am now 76. It got to the point I could not feed myself or even carry a glass of water across the room. About 4 years ago I had the deep brain stimulus surgery at Barnes Hosp. in St. Louis. It controls the tremor somewhat on the right side. I'm wondering if there is anyone out there who has had this surgery a second time to control the other side. What were the side effects and/or complications from the 2nd surgery? Thank you.

[dduck]

I had my DBS done in 2003. They did both sides at once, so I can't really give you any insight into how it works if you have one side done at a time. My tremor is almost totally controlled - there's still a little in my right hand and some with my voice, head & neck, but in general, I think the two-sided approach is valuable. Interestingly, enough, it seems that the effectiveness has improved somewhat over the years.

I had the left stimulator replaced just last year - the batteries usually only last about 5 years so that was right on time. The right stimulator is operating at a much lower amperage (or voltage - I can never remember the difference) so the battery in that one has much more "juice" left. It would appear that the placement of that electrode was a little more "on target" so that one is a bit more effective, hence the reduced need for power and extended battery life.

In general, I would recommend the 2-sided procedure or having the second side installed. It really has had a very positive impact on my quality of life. Good luck!

[macacoza]

I find your post very informative...it helps to read from folks that ahve this procedure done and how it works..thank you!
deb

[dodson]

Thank you for responding. I just went back to my surgeon in St. Louis and he did not recommend having the other side done. He said to think about it, but he thought it might have an effect on my balance and speech. Would you mind telling me where you had yours done and who the doctor was?
Thank you.

[dduck]

Hi,
I had mine done at Wake Forest University Baptist Medical Center in Winston-Salem, NC. Dr. Steven Tatter was my primary neurosurgeon. Here's a link (you'll have to copy & paste) http://www1.wfubmc.edu/webcasts/Archives/Deep+Brain+Stimulator.htm

Some people, including me, do have some problems with speech. There are still a few words that my tongue stumbles over - "digital" is one. There is a trade off with the tremor control on my right side (left side wiring). If the amplitude is turned up too high, I sound like a drunken sailor, too low and I look like Katharine Hepburn. We have had to do quite a bit of fine tuning - turning the amplitude up on one electrode, down on another - to achieve a good balance between tremor control and ease of speech. In addition, I find that my voice sometimes gets rather gravelly after talking for a while, especially on the phone.

I have the Medtronic Soletra model stimulators. That model is not owner-programmable. There is, however, a newer model that can be turned up or down by the patient, allowing them to adjust either for speech (e.g teaching a class, etc.) or hand-work (doing needlework, etc.) And, of course, I could just turn either or both of them off with the magnet, if I wanted, but I don't like the feeling when it gets turned back on.

I haven't noticed any problems with balance, but I believe some people do. So, your doctor is right to recommend thinking it over. But speech problems can be worked on, either by yourself or with a bit of speech therapy, and I imagine that balance problems can be overcome, too.

I do have one apparently unique problem: I have had to relearn how to sing! For several months I had to work on carrying a tune. I still sound a bit like Bob Dylan :-) But losing my voice was no great loss (Julie Andrews losing HER magnificent voice - now that was a tragedy!)

So, while I am quite pleased with my results, and I whole-heartedly recommend the bi-lateral procedure, nothing is perfect. I'm not sure what percentage of bi-lateral DBS patients experience problems. It might be worth some Googling.

Take care,
Dee

[macacoza]

wowwwww...this is all very interesting as I feel that at some time in the future this is what I am facing. Interesting though is the fact that you get the gravelly voice. I have that without the surgery. I have been doing research on botox injections for that.
Take care
deb

[dodson]

Thank you for responding. Hope you continue to do well.

[macacoza]

I spoke with a DR. last week that happens to be a chiropractor. I went with a friend who is seeign him for a weight loss program..I know..a chiropractor for weight control?? YES..anyway..while there he got to asking me questions about my tremors and asked if I had ever had test run to see if I had heavy metals in my system from when a kid. I have not..Just wondering if anyone has ever had those test????? Please let me know!
Thanks
deb