Hello again everyone this is Mike Withey and about three years ago I had the Deep Brain Stimulation Surgery performed at Beaumont hospital in Detroit. Howard Thiel recently contacted me and asked me to do a follow up to the article I wrote shortly after the surgery so here goes:
I remember the choice to have Deep Brain Stimulation as a last chance to find a “fix” for the ST that had plagued me for so many years. I had been given Botox A for many years and no longer responded; Botox B helped but wasn’t getting the job done. My wife and I even went to Montreal to see Dr. Bouvier to consider denervation surgery but were told that in my case, with the back bent so badly I wasn’t a good candidate. Now with the DBS surgery behind me and with the benefit of 20 / 20 hind site I can easily say it was the best thing that could have happened to me. The pain is down considerably (but not gone) and the ability to move greatly improved.
DBS has given me back my life; I can, with reasonable care, live a pretty normal, relatively pain free life. I no longer attract the attention of people when I walk into a restaurant or store and I feel good again. In short it has been quite a miracle for me. I thank God for the second chance at life; after living with ST for fifteen + years it was slowly ruining my out look on life, and quite likely putting my marriage in jeopardy. I avoided friends and family because of the pain and embarrassment, I just wasn’t handling it very well.
Perhaps it is only coincidence but a few weeks ago on December 10 th 2004, I had to return to have the pace maker’s batteries replaced. One of the pace makers had quit and when it did the intense pain and muscle spasms returned quickly. My lower back felt like it was being pulled to the left or a great weight was attached at my left rib cage. I am happy to say that now with the pace makers working again, the pain and normal movement have returned to my spine and neck; it is a wonderful feeling.
DBS was not a total “fix” and anyone considering the operation should be aware of both the good and bad sides of the procedure. Because of the pace makers that are now implanted in my upper chest I must be careful around magnetic fields. They may be shut off by theft detectors around shopping stores and metal detectors in airports. In my case I can no longer work as an assembly line worker around industrial motors, welders etc because of the magnetic fields these machines give off.
Also, and this may sound trivial, one other change I had to learn to live with for the first year or so after the operation, was to sleep on my back because there was pain in my chest around the pace makers when I slept on my side.
I can not put into words how strongly I suggest some one who is suffering with ST and is told by a qualified surgeon to have this surgery, have it done, get your life back
If you have any questions or would like to talk about the surgery call me at home at 810-638-5278.
In Mike’s words:
Above is my follow up article regarding my ST operation. I do hope it helps someone. There is just so little known even among the doctors and nurses I come in contact with (the nurse who prepped me for my battery change had no idea what my pacemakers were for, or why, or what dystonia is. ST was a total mystery to her). Hopefully, one day that will change. Do keep up the good work and if I can help do let me know.
Hopefully we will meet one year at one of the symposiums
Sue Brandt has been a big help to me when it came time to change the battery as she had it done before I did and emailed me about it.
(Ed. Note: To give you an idea of what Mike looked like and looks like, you will notice in the 2 pictures. As you can see his neck bent to the right and forward and his lower back curved to the left forming the shape of an “S”.)
Thanks for the invitation to submit a follow up on the deep brain stimulation surgery. First, for a bit of a review, the original surgery was done about five years ago at Henry Ford hospital, Dr. Junn, Neurosurgeon. Since that time I have had two further surgeries to replace the stimulators because of weak batteries. The stimulators have to be “turned up” quite a bit to stop the muscle spasms and this leads to high current draw from the batteries which of course leads to surgery to have the units replaced; currently, I am averaging two years between replacements.
Recently, one of the units was switched off accidentally as one has to be careful around strong magnetic fields as they can shut off the stimulators and the pain and muscle spasms return. Fortunately, my stimulator checker was able to turn the stimulators back on and the spasm stopped, along with a drop in the pain level.
I should caution everyone who may be considering the surgery, for me, it was not a total “cure”. I still live in some pain and there is still some curving of the neck and lower spine. Having said that, you, the reader, may ask “would you do it again?” My answer would be yes without any hesitation. The stimulators along with the DBS surgery have given me my life back for the last five years.
Let me give you an example of how the surgery has improved my life: before the surgery there was much physical pain and the emotional feeling of everyone seeming to stare at me. I never left my home more than I had to. Now, with the surgery, this past summer, my wife and I purchased a fifth wheel travel trailer and enjoyed traveling around our home state of MI.
To close let me say DBS is not a perfect cure, however, it is, hands down, the very best “cure” that medicine has ever offered me; if you’re considering it, I give it a “thumbs up”.
1112 Ditch Rd
New Lothrop, MI 48460
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews