Gary Grant’s Surgery
Writing this story has been a very humbling experience. I have learned a great deal about friends, family and myself. When I was finally ready to tell this story I knew there were things I would not remember. After having written the story up to the point of setting a date for the surgery, I needed help to continue. I began questioning my wife about how she remembered the events. I was shocked at some of the things she told me. I have never been the easiest person in the world to get along with but I have found that the ordeal of dealing with the onset of ST was almost as devastating to my loved ones as it was to me. This is my opportunity to both apologize and to thank the people in my life that mean the most to me. Without their love and understanding I have no doubt that I would not be here today. Thank You, I Love You All!!!
I noticed the first symptoms of ST around 1985. I was in my mid thirties, financially stable, running my own business and didn’t have a clue what was happening to me. The symptoms were pretty mild at the time and I was able to hide the problem from others. I guess I was hiding the problem from myself too. The main thing I remember was when I was speaking to someone face to face the muscles in my neck would tighten to the point I would have to look away. It was uncomfortable and very annoying but the problem seemed to come and go. This persisted for a few weeks or months and I pretty much forgot about it.
The next few years were uneventful health wise. Then in 1997 I got into sales. Car sales to be specific, a very stressful occupation. I sold cars until mid 1999 when I took an out of state job working as a sales manager for a publishing company. This was my first experience in a corporate situation and it was also very stressful. To add to the job stress I was living alone in a strange place with no family or friends nearby.
This is when I began noticing strange things happening to me again. The first symptom I noticed was while playing golf. My head wanted to turn slightly to the left and lock down when I would set myself to make a swing. About the same time I also began to develop a slight head tremor. Driving a car was becoming uncomfortable too. I found that I was always holding a hand to my head while driving to keep it from shaking and moving involuntarily. The pulling I was experiencing at this point was minor and would come and go, but the tremor was gradually getting worse. The stress of conducting sales meetings and dealing with customers was beginning to take a toll on my ability to do my job.
I began to think these problems were all in my head and that I should be able to overcome them. If I could reduce the stress in my life and practice a little mind over matter everything would be fine. So I quit my job and moved back to where I had friends and family. I went to work for my brother-in-law’s pump installation and service company as the office manager. The monetary rewards that a sales career offers were lost but the job stress was greatly reduced and I was much happier. Unfortunately, the health problems continued to get worse.
Shortly after moving back home I met my future wife, Kathy, and we began dating. At first I was able to hide the symptoms from her, but not for long. At about this same time the muscles in my neck and upper shoulder area began to feel as though they were constantly clinched and would not release. The tremor was also getting worse and I found that I was holding my hand against my face or chin all of the time. At Kathy’s and other family members urging I mentioned the problems to a doctor during a visit for an unrelated problem. The doctor prescribed a beta-blocker for the tremors. The beta-blocker had no effect one way or the other. After one more prescription he then referred me to a neurologist. That doctor diagnosed me with essential tremor and maybe a slight possibility of spasmodic torticollis even though there was no visible pulling at that time. His torticollis diagnosis was based purely on my mentioning that the symptoms seemed to be a little worse when I turned my head to the left.
I visited several more doctors over the next few months trying to find answers. Most of them had no clue and I received a string of misdiagnosis and prescriptions for drugs that were doing more harm than good. That’s when I began researching on the Internet trying to find out exactly what was wrong with me. My research kept leading me back to one web site in particular, that being the Dystonia, Inc. site. What I read there most closely resembled what was going on with me. The only problem was that the distinctive pulling was not present in the way the pictures on the web site depicted.
Then it happened, I awoke one morning in early September 2001 and found that my chin was pinned to my left shoulder. I still had the other symptoms too, the head tremors and the clinching in the neck but now the diagnosis was complete. It had to be ST. By this time Kathy was now my wife and we were both scared to death.
I made an appointment with the only doctor in town that administers Botox injections. I had been to him previously and he had also misdiagnosed me. He would not allow Kathy to be in the room for the Botox injections. That should have been a clue and I wish that I had walked out right then. He proceeded to inject me with 400 units using an old pieced together EMG machine that looked like something from an old science fiction movie. The pulling and the pain were at their peak by now and I never did get relief from the injections. Now, more than two years and many Botox injections later, I know that the doctor doing the injections should be very knowledgeable about his patient’s condition and skilled at administering the shots. He was not.
Things started happening very quickly at this point. I had a pretty good pity party going on but with the help of my wonderful wife we began to do the research to find out what our options were. I had already read every question and answer on the Dystonia Inc. website and now it was time to start asking my own questions. Howard was very patient with my questions and always gave me good advice.
There are many things that happened over the next few months that I have little or no memory of. I had talked the doctor that did the Botox injections into prescribing Klonopin for me. He told me he didn’t think Klonopin would be effective for my problem, but he was wrong again. It was, and still is the only drug I have used that gives any relief without terrible side effects. Anyway, I was taking .5 mg. of Klonopin three time daily and Xanax (same doctor) as needed. That should explain the fog I was in.
As we saw it the options were very limited. One, learn to live and cope with ST. Two, seek alternative treatments (Abby’s clinic in Santa Fe, acupuncture, chiropractors, etc.). Three, surgery. I knew I didn’t want to live with ST if anything could be done to help me. Abby’s clinic was an option we considered and a family member even volunteered to pay for it if I wanted to go. However, Howard had recommended that I also check out Dr. Carlos Arce and the surgery alternative.
I found out everything I could about Dr. Arce and the surgery, including talking to a couple of people that had undergone the procedure. Everything I learned kept telling me I was a good candidate for the surgery and he was the only surgeon I should consider. The one main thing that made me a good candidate was that it was very soon after the onset of the pulling. My body was not yet twisted out of shape to the point that it could not “remember” where straight ahead was. It didn’t take long for me to realize that the only option I was considering was surgery.
Big Problem, how do I pay for it? The company HMO (United) I was on said no way. They said surgery should only be considered as a last resort and that was their “final answer”. Then two wonderful things happened. First, my employer, (sister and brother-in-law) changed health insurance companies, in part to help me. And second, my mother and stepfather offered to pay for the surgery. WOW!!!! I am blessed to have such wonderful people in my life. In the end my health insurance company paid for 80% of the surgery costs and my mother and stepfather paid the remaining 20% as well as our expenses. The total cost of the surgery before insurance discounts approached $50,000.
By now I had become a member of Dystonia Inc. and we were planning to attend the seminar in San Antonio. It was back to the website!! Howard gave me the phone number for Dr. Arce and I called immediately. I left a message with the nurse asking the doctor to call me. To my surprise, he returned my call within a few hours. I explained my situation to him knowing that he was to be a speaker at the upcoming seminar. He readily agreed to meet with us there and evaluate me for the denervation surgery.
The seminar was only a few weeks away and I was very excited and apprehensive about attending. I had never met anyone else with ST. Then, there we were. It was Friday evening, the trip there was good, the hotel was nice and it was time to attend the get acquainted session. The first person we saw and heard was Howard. Big Smile, Big Handshake, Big Welcome, Big Relief! Howard was great; he made us feel very comfortable and very accepted. Everybody was great!
The symposium got into full swing the next morning. We learned more about ST that morning than we had in months of research. After Dr. Arce finished his presentation and question and answer period we waited in line for our chance to talk to him. He spent a few minutes with me asking questions and observing my pulling. His opinion was that surgery would relieve much of my pulling but not all of it. He said he would call us the next week to schedule the surgery. Kathy and I were thrilled. We pretty much floated through the remainder of the seminar. The things we learned were invaluable and the people we met were fabulous. Everyone there had a common bond and it was wonderful to be among these people. I had taken my first step to a new life by attending the seminar.
When Dr. Arce called the next week he gave us a couple of different choices for scheduling the surgery. Our choices were either Christmas week or late January. We chose Christmas week for a couple of different reasons. I wanted to have the procedure done as soon as possible and spending a couple of weeks in Florida at Christmas time sounded like an adventure. It was to be an adventure, but not the one I had in mind.
We had about six weeks to plan for the trip. We gathered as much information as we could find about Jacksonville and the surrounding area. Dr. Arce had told us we would have to spend a full week in the area after the surgery so he could remove the sutures and staples. The hope was that at least some of that week could be spent sightseeing. We found an extended stay motel fairly near the hospital with reasonable rates and a kitchenette. We made airline and rental car reservations and started packing.
Kathy reminds me that my life had basically spun out of control by now. I had begun to isolate myself from everybody and everything. I no longer had the desire to go out in public and did everything I could to avoid it. Everyday activities had become tedious and sometimes impossible chores. My job had become much more difficult and my hours had even been cut back because my attitude was bad and my abilities were deteriorating. Life was just not much fun anymore. Unfortunately, I was taking all of this out on Kathy, the one person in my life that was, and still is my rock.
The time was finally here and we were both getting nervous. According to Kathy I had become pretty negative about the surgery and its possible results. Unfortunately, I have always been one of those “glass half empty” people. We left Colorado Springs early on Monday morning and arrived in Jacksonville just before dark. Of course we got a little lost before finally getting to the motel. Neither of us got much sleep that night.
We were scheduled to be at the hospital first thing the next morning for testing. We had been told it would be a long tiring day. It was. The initial wait to see Dr. Arce was pretty short. He started with a thorough examination and some testing in his office. We were then sent to admissions for a couple of hours of paperwork and phone calls to my insurance company. I had been worried about the insurance company balking at this point but there was no problem and pretty soon we were all checked in and ready to move on. Our next stop was the lab for blood work. After that we returned to Dr. Arce’s office where he escorted us across the street to have an extensive EMG. I was starting to get used to needles by now but this EMG was a painful experience. The needle pokes were many and deep. Dr. Arce and his associate put me through many different motions while performing the EMG. This was an event that brought tears to both Kathy and me. Our next stop was back to Dr. Arce’s office for the pre-surgery consultation.
It was time for the bottom line…
5005 E Blaney Rd
Falcon, CO 80831
(Ed. Note:…”My life had basically spun out of control…I no longer had the desire to go out in public…we were both getting nervous…neither of us got much sleep that night…” How did Gary Grant’s Selective Denervation Surgery turn out? You’ll be amazed! Our July newsmagazine will tell you all. “…it was time…”)
I Was Scared…. a continuation of Gary Grant’s surgery article
(Ed. Note: The following second half of Gary Grant’s article follows. I want to personally apologize for any inconvenience this may have caused anybody. The splitting of the article was not done intentionally nor was it done to “tease” anyone nor was it done for the purpose of “selling more copies” as we are not a newsstand type of operation. Simply stated, we had many, many articles to print and we had to choose between printing all of Gary ‘s article and just some of the others or half of his article and all of the others. We only have so much space. Sometimes it’s too much and sometimes not enough but, please, keep those articles coming in. Once again, apologies. Thank you and enjoy the rest of Gary ‘s article. Howard Thiel)
Dr. Arce explained to us the results of the testing that we had just finished. He believed that he could eliminate most of my pulling to the left. He stated that the surgery would need to be fairly extensive and I had the choice of completing it in one or two procedures six months apart. He said there was some involvement in my shoulder muscles that he would rather not work on. His reasoning was that I would probably lose the ability to keep my shoulders up and they would become droopy and rounded. I agreed with his decision and chose to have the procedure done in one surgery. My head tremor had become fairly severe by now and was a major concern of mine. Dr. Arce said the surgery would probably have no positive effect on the tremor. This was disappointing news but not unexpected. Our research had prepared us for that. The last thing to be done was a “before” video. Dr. Arce had me sit on a stool and turn from side to side as best I could. Whew! It was a long day and we were glad it was over.
It was dark by the time we got back to the motel. I was soon asleep while Kathy tossed and turned and worried all night. Finally, the wait was over and the big day was here. We were both nervous and the closer we got to the hospital the more scared and anxious I got. When we arrived, there was a large contingent of people waiting for me. By the time they got me out of my clothes and the IV in place I can remember being almost in a panic. I was scared to death. This was the first time I had ever been checked into a hospital. There were people coming at me from every direction asking questions and writing the answers on their clipboards. I barely remember Dr. Arce visiting me just before they rolled me into the operating room. Somebody said, “just take a few deep breaths”.
Dr. Arce had told us the surgery would probably take four to six hours. I had told Kathy to go shopping since I would be out and not know the difference anyway. She tried, but was back at the hospital in less than an hour pacing the floor. After about five hours a nurse came out and told Kathy she didn’t think it would be much longer. This turned out to be bad information. The surgery lasted a total of nine and half-hours. Kathy was beside herself by the time they got me to recovery. She had been in close contact with the family back home and, of course, everyone was concerned about the length of the procedure. Dr. Arce told us later that there had not been any problems and that it just took longer to do what needed to be done than he had expected.
My first memories after the surgery were when I was being wheeled to my room. As I remember it, there was a lot of pain and I was very agitated and uncomfortable. Kathy says that condition lasted throughout the night. She stayed in the room with me but got little or no sleep that night either. I’m not a very good patient and apparently I was not very nice to the nursing staff. I faded in and out the rest of the night thanks to that magic pain relief button.
As the morning arrived and activity picked up I began to become much more aware. I was having issues at that point with the catheter. Never had one before, never want another one. It was finally removed about midmorning. There was general pain and discomfort, but the main problem I was trying to deal with was the numbness on the back of my head. Dr. Arce had warned us about this. He said I would get used to it in about six months or so. There is an area of numbness that starts at the crown of my head and runs down to about four inches below shoulder level. This area goes almost from ear to ear. For some reason my brain was not accepting the reality of this numbness and it was very, very uncomfortable for me. Just the thought of anything even touching that part of my head was very disconcerting. This numb area is a permanent result of the surgery and I still have some problems dealing with it two years later.
When Kathy helped me sit up for the first time it was immediately obvious that there was no pulling. As expected, I was still very uncomfortable and sore and I had virtually no range of motion but the pulling was gone. Kathy was very excited at these early results but I was in enough discomfort that I was having second thoughts about having even undergone the surgery. Unfortunately, this attitude would continue off and on for the next few weeks. Looking back on it now I realize that the surgery I had was very significant. I should have also realized that the recovery would be too. One of the first people to see me that morning was someone from physical therapy. She gave me a sheet of paper with some head and neck stretching exercises. She described the exercises that I should do and told me to start doing them as soon as I was able. I told Dr. Arce of her visit when he came in a little while later and he said not to be in a hurry. He said some healing should take place first. These events would lead to some misunderstandings down the road. I did not ask for and did not get any instructions for physical therapy before leaving Florida . It was not until almost six months later at my first visit to my present neurologist, Dr. Lauren Seeberger, that I was told how important postoperative physical therapy was. My range of motion had improved very little since the surgery and she proceeded to tell me that I had missed something. Dr. Seeberger is a fabulous movement disorder specialist and has other patients that have had the surgery performed by Dr. Arce. She had me call Dr. Arce to confirm the need for this, which I did later the same day. At his and her instruction I immediately began a daily stretching routine that I still do almost everyday. My memories of the remainder of that day are pretty slim. I do remember that cable TV in the hospital was pretty sorry and I just wanted to go home. It was five days before Christmas now and Kathy finally went back to our room to get some rest and decorate for the holiday.
I was feeling a little better by the second morning in the hospital. I knew I was to be released at some point that day. I finally realized while sitting up that morning that my head tremor appeared to be completely gone. At first I thought it might just be the swelling or stiffness, but it was gone. The gravity of this revelation did not really set in for a while. I can remember thinking that these great results might be temporary. When Dr. Arce came by a little while later he was pleased with my progress and somewhat surprised about the missing tremor. I was released an hour or so later.
The week to come was a difficult one. Kathy had decorated the room beautifully and we celebrated Christmas the best we could. Dealing with the pain wasn’t too bad. I was numb everywhere there were sutures and staples. I was just very weak and finding ways to get comfortable was almost impossible. It was very hard for me to sleep and, because of the numbness problem, I spent most of the time lying on my face. After a few days we decided to try some sightseeing. Neither of us had ever been to the East Coast so we decided to go see the ocean. That turned out to be a near disaster. I was much too weak to be riding in a car for any length of time. I did not have the strength to hold my head steady and could not lean my head comfortably against the headrest because of the numbness. By the time we got back to the motel I was exhausted. We didn’t venture out again except for some short walks around the nearby riverwalk. We just wanted the week to be over so we could go home, as that’s where the real healing would start.
Our last day in Florida was finally at hand. We had been looking forward to seeing Dr. Arce to get his assessment of my progress. He assured us that my progress was normal and he was pleased with the results of the surgery. It was time to remove the sutures and staples and I had been worried about that procedure because of the numbness, and because there were more than fifty staples to remove. That turned out to be a non-problem as it was totally painless. Dr. Arce once again assured me that the numbness issue would resolve itself in time. I had my doubts. The good doctor then recorded the “after” video. I would give anything to see these before and after videos now.
The numbness issue was looming ahead for the trip home. I was very concerned about my ability to keep my head steady without touching anything while riding in an airplane. We were able to resolve the problem by buying a small “donut” pillow for the trip home. I was able to lean my face and head against the pillow and get enough support to get a degree of comfort. The trip home was tiring and amusing. The shaved skull and the fresh scars were pretty graphic. I did manage to have some fun scaring people in the airports looking and walking around like Frankenstein.
I think I tried to rush my recovery a little too much after getting home. I attempted to return to work the very next day. That only lasted a couple of hours and my strength gave out. I remained on a limited schedule for the next week or so and then returned to full time. The first few weeks of recovery were very difficult for me. Until my strength and stamina began to really improve, my attitude remained rather bad. I haven’t mentioned it before now but a major problem that I encountered shortly after the surgery was swallowing. Dr. Arce was aware of the problem and said it would go away within a few weeks. Thankfully, it did go away, but I had myself convinced for a while that if I were going to die any time soon it would be from choking to death. If you haven’t experienced swallowing problems before, they can be very scary. I had to be very aware and cautious for a few weeks when eating or drinking always remembering to go slowly and have something to drink within reach. Driving was very difficult to do safely for several months; the problem there being my lack of range of motion.
Pain from the surgery has been an occasional problem. There was no pain associated with the actual scars because of the numbness. However, the area under the four inch scar on the right side of my neck has sometimes been painful and remains tender. The huge muscle that used to be there is now more of an indentation. I have occasional phantom type pains in my neck and the back of my head but they are manageable and usually disappear after a short time. Something I have learned through this ordeal is that pain is relevant. I have previously mentioned that I have what I call clinching of the muscles in my upper neck area. Prior to the onset of the pulling, that was the main problem I was seeking answers for. I considered that pain quite considerable at that time. After the onset of the full fledge pulling, that pain went virtually unnoticed as the pain from the pulling was so much more intense. Now, more than two years after surgery, I still have the same clinching and pain as before. The difference now is that I live with that pain and accept it as a part of my everyday life
As my recovery progressed I think my attitude began to get much better. I am once again able to do most all of the things that had become so difficult. My life has returned to almost normal. The surgery was not a cure all, I still have ST and always will. I still get Botox every three months to help with the clinching in my upper neck. I still have problems dealing with stressful situations. I have a tendency for my head and neck to lock up when dealing with strangers. Stressful situations will also cause my head tremor to return in a minor way. I still take a minimal dose (.5 mg.)of Clonazepam everyday to help with stress. I also realize that the problems the surgery got rid of could return if more or different muscles become affected in the future. Having said all of this I still consider the success of my surgery to be at least 90%. Unfortunately there are many people who would not be a good candidate for this procedure. If however, you find that your situation is similar to mine I wholeheartedly recommend that you contact Dr. Arce for his assessment. I could never come close to expressing the gratitude I have for Dr. Arce. He is a kind and gentle man that has the extraordinary ability and passion to help many of us that have no other place to turn.
5005 E Blaney Rd
Falcon , CO 80831
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