About Us Stories
Mike Withey's Story
(Ed. Note: This is truly a great, great story told with much sincerity. Thanks, Mike, and continued good luck to you.)
Hi Howard, following is my (I hope) is my story of Deep Brain Stimulation surgery,If you need a different format contact me maybe I can help.
I hope it helps.
Mike
Hello everyone. My name is Mike Withey, I am 48 years old and have had ST for the last 18 years. My head turned to the right and tipped towards my right shoulder and my lower back was bent in the opposite direction to form the shape of a letter S. About a year ago I had the Deep Brain Stimulation Surgery done and I am happy to say my life is much improved now; in fact, I would judge my back and neck to be 60 to 70 percent improved.
The procedure consisted of two surgeries; one to implant the probes in the brain; the second to implant the two pace makers. Both surgeries required only an overnight stay in the hospital and I was discharged the following day. There was about three weeks between the surgeries.
The first surgery I requested to be “put to sleep” as the surgeon had to drill holes in my skull and called me a coward, but just hearing the sounds and feeling the vibrations of the drill would have freaked me out. However, as the surgeon explained before the surgery, I would wake up during the surgery as he needed me awake to tell him what I was feeling. I awoke during the operation and there was no pain. I was aware of what was going on around me and was able to talk with the surgeon. He asked me questions regarding the placements of the probes, like, “what could I feel, could I see any flashes of light?”
Before, during and after the surgery I had a halo screwed to my skull. This was the most painful part of the operation, I was first injected with a local pain killer at the four spots where the crown was screwed to my skull. Although I could not feel anything as the screws were being tightened, the shots sure did sting!
Before the actual surgery I was given a NMRI where I was placed in a long skinny tube and the doctors were able to x-ray my brain. It is my understanding this produces a 3-D picture of the brain. The same scan was repeated after the surgery to assure the proper placement of the probes.
The entire procedure took about four hours and during that time, because of the halo, I could not move my head at all. When the halo was finally removed it felt really good to be able to turn my head once again.
The next day my neurosurgeon connected the probes to a stimulator device to check the implanted probes, and when the doctor was satisfied, he disconnected the stimulator and later that day, I was released from the hospital.
A few weeks later I returned to have the brain pace makers installed and I really don’t remember much regarding that surgery as I was put out during the entire procedure. The stimulators are implanted just below the collar bone. As before I was dismissed from the hospital the next day, but it was a month or so before the pain was entirely gone in my chest where the pace makers were implanted.
About a month later I returned to Dr. Trosch’s office to have the stimulators turned on. The pulses they produced were gradually increased by a wand like device which is connected to a laptop computer. There was no pain and there is no direct contact between the probes and the body. The stimulators were turned up until I could feel a tingling sensation in my lower jaw and shoulders. The devices were then lowered and for about a week I had the sensation of tingling on my scalp. I described it as having ants crawling over my head.
Within a few days the tingling went away and after about a month I returned to have the stimulators checked. Their level was increased and again the tingling sensation returned only this time the sensation went away after only a few days. I continued to have the stimulators adjusted almost every month, for the first several months, and then I went back less often.
At first I did not notice any Improvement; however, as time went on, I could feel the improvement in posture and a decrease in pain. Over time several people commented on how much better I looked and that I was standing straighter and not bent over as before.
It was a long uphill fight to have my medical insurance ok this operation for me, but my primary care doctor, who had been with me since before the symptoms of ST struck, was always fighting for me. I kept him up to date with medical reports from the Dystonia support group. When Botox A was first approved for treatment by the FDA I was already involved in the last of the experimental group. Over time I became immune to Botox A and was among the first to use Botox B. Then, when Botox B stopped having good results, my Doctor wrote to the insurance company explaining all I had tried and that this Deep Brain Stimulation surgery was my only hope. About a year after first requesting, then being denied, and re- submitting and re-asking, I received a call from the insurance company and was told the operation was approved; it was a real answer to my prayer.
The surgery was done at Henry Ford Hospital in Detroit, MI at a cost of $80,000. The neurosurgeon’s name was Dr. Junn; my neurologist was Dr. Richard Trosch in Royal Oak, MI and my family primary care Doctor is Dr VanDuyne in Flint Mi. My primary health care insurance is Medicare with Health Plus of MI.
Today I continue to be monitored periodically at my neurologist and to exercise twice a week at my local YMCA’s swimming pool; I also stretch with an exercise program nearly every day at home.
I know first hand the social embarrassment of the physical deformity, of well meaning people coming to me again and again; to ask, “how is the neck feeling?”, “When are you going to get cured?”. I know the pain of missing social events, of missing friends and family due to hiding because of the physical and emotional pain.
Let me finish by saying this. For years I was mad at God for allowing this to come into my life. It took me years to realize I was only hurting myself. I had to learn to let God give me a life with ST if he chose. No, I didn’t like the physical and emotional pain but through faith in God I came to believe that he knows what is best for me.
The best advice I could offer someone going through the same ordeal as me is information. Be sure your primary care doctor is up to date on the latest procedures treating ST. Don’t take no from the insurance company as final. Ask for a re- evaluation. Find a trusted friend you can confide in. Do all you can do, and having done all that, rest in God’s care; I found comfort there.
Mike Withey
If you have any questions please email me at mwithey@centurytel.net or telephone at (810) 638-5278.