Maggie Coggburn – My Journey with Spasmodic Torticollis
From 1980 to 1983 our family lived in Munich, Germany. My husband, Dennis was stationed there with the USAF. Our two children attended the American School on the Army post, although we lived off the post. I did a lot of driving in heavy city traffic and began to notice that my neck at times would get tight and uncomfortable. My husband began to notice that I did not hold my head straight when he would be taking family pictures but we did not realize this was indicative of the beginning of a medical problem. I now believe these incidents were the first indications of a long struggle I was to have with a disorder about which little was known at that time.
In 1983 we returned to Wright-Patterson AFB in Ohio. I began to notice a bit of neck pain and stiffness during the next few years, but it was probably about 1985 that I began to mention the problem to whatever doctor I happened to see at Wright-Patterson. At one visit an osteopathic doctor decided he could fix the problem by a neck adjustment, and that severe pain was the first of much to come. Dennis was with me that day and he said I cleared the examining table by about two inches when the doctor jerked my neck.
At that time I was already losing flexibility in my neck. I began to use a heating pad on my neck and to try to disguise the discomfort and pain I was feeling. I recall being uncomfortable during our son’s high school graduation activities in 1987. The pulling in my head toward my right shoulder and towards the back began to increase very gradually. It was painful and embarrassing to be unable to hold my head straight. In 1989 an aunt who was visiting us for our daughter’s high school graduation asked me if my neck was bothering me. She was the first to notice that something was really wrong.
About this time one of the doctors thought physical therapy might help and sent me to the clinic at Wright Patterson. I began going in regularly for treatments. One day the head of the clinic walked by, looked at me while the therapist was trying to position my neck to midline and said, ” You do know what your problem is, don’t you?” I replied that I had no idea. She told me I had spasmodic torticollis. Now I had a diagnosis, but no idea what it meant.
I was sent to a civilian neurologist who listened to my complaints, did a brief exam and said, “Yes, you have spasmodic torticollis. It is a neurological muscle disorder that is chronic and painful. There is nothing we can do about it. You just have to learn to live with it.” I went home hurting, in pain, depressed and hopeless. This same doctor now has his own pain clinic in Dayton and treats some patients with ST. His lack of compassion and lack of knowledge at that time sent me into a downward spiral of despair.
My diagnosis of ST was in June of 1990. Dennis began to use every avenue of research we could find. For about six months I tried chiropractic treatment that cost lots of money but did no good. The pulling and pain continued to increase. I saw osteopaths and a couple of other neurologists and received no help. I was put on various drugs including valium, artane and baclofen. I sat at home in a recliner with a heating pad on my neck in order to get a bit of pain relief.
By August of 1990 I had lost 50% lateral mobility of my head. – The pain and stiffness were very bad. The pulling of the muscles on the right side of my neck had pulled my head to my right shoulder so that I had to hold my head up with my left hand while driving with my right. Finally I gave up driving for the sake of safety.
In November of 1990 Dennis saw a brief one paragraph article in Reader’s Digest in the medical section. It told of studies being done to treat neuromuscular disorders with botulinum toxin. He began to research until he found out that a doctor at the University of Michigan Hospital was using this treatment.
Following this lead took me there for my first Botox injections and the first good medical information on spasmodic torticollis I had received. This was the beginning of hope for me.
In December of 1990 I received my first injection of botulium toxin into three muscle groups in my neck. Dr. Hermanowicz at the University of Michigan not only gave me injections, but also gave me hope by informing me of a national support group for people with this condition. The injections gave great relief from pain, my head returned to almost a normal position and I had minimum side effects of difficulty swallowing. I contacted the national support group and received much helpful information that assured me that I was not the only person in the world with this neurological disorder. I thought I had received a miracle cure.
The symptoms of pulling and pain began to gradually return, and I returned to Dr. Hermanowicz in May of 1991. This time I was injected with 200 units of Botox. (My first injections had been 175 units). The results were not quite as good, and I was referred to Dr. Colin Zadikoff in Cincinnati to receive treatment at a location closer to our home in Dayton. I received treatment from Dr. Zadikoff from July 1991 through June of 1992, receiving Botox injections on each of nine visits. Various oral medications, such as artane, baclofen and valium gave me no relief, but caused confusion and memory loss.
As the pain and pulling of my head back and to my right shoulder increased, so did my depression and desperation. I would have tried almost anything for relief. I seemed to be no longer responding to the botulinum therapy and was attending the Ohio Support Group for Spasmodic Torticollis. There, I had met other people who were suffering from this disorder and I was learning of other methods of treatments that some people were trying. There seemed to be few options for those of us for whom the Botox was ineffective. At the meeting in Columbus in April, 1992 I heard a doctor speak, and he seemed quite confident that he could treat any torticollis patient with success. I was so miserable and in so much pain that I thought it was worth taking a chance. Thus began the very worst time I have ever had with pain of any sort. I will refer to this man as Dr. X. He is an anesthesiologist with a pain clinic and my five months of treatment with him almost caused my death.
He immediately put me on baclofen (91 mg. per day) and voltaren (75 mg 3 times per day). He tried giving me Botox again and was reassured that I did not react to it. He did an E.M.G., assessed the muscle involvement I had, and recommended that I have a baclofen infusion pump inserted. I do not know if he had done this procedure before but I should have investigated more thoroughly before I agreed. On October 2, 1992 Dr. X had me come into the hospital in Columbus, Ohio. He put me under general anesthesia and injected an anesthetic solution into individual nerves in my neck. There was momentary relief and the muscle contractions released, allowing him to place my head in a straight position. He then inserted a cervical epidural catheter to deliver an analgesic infusion over the nerves. When I awoke, I had great pain in my neck, and was given a pump with fentanyl and sensorcaine. I was released to go home the next day and had even more pain after arriving home. We contacted Dr. X., and he had a home health care nurse come to our home the next morning. She gave me a bolus of even more pain medication which made the pain and agitation increase. Narcon was then added to my medications. I was also taking Cipro 500 mg. twice a day. In a few days I began having fever, and on Oct. 21 my temperature was 103. The home nurses continued to come to supervise my medications and to check the catheter. On Oct.26 I returned to the hospital, still having fever; and Dr. X. pulled the catheter, cleaned it, saw signs of a hematoma, and reinserted the catheter. I remained hospitalized for nine days with pain and fever. During this period I was on so many pain medications that I was often psychotic, seeing people who were not there and recounting to my husband events that never happened. At one point I pulled out my I V lines and dressed to go home. I was given a pump for self-administered doses of morphine.
Finally on Nov. 3 I was released from the hospital with the catheter still in place and on an epidural of Ativan, Robaxin and Zinocet.
I immediately began to have great pain again and was supervised by a home health nurse. At this time I was on a dosage of medications that meant taking various combinations at seven times during the day. I was taking:
- Robaxin 2 pills every 8 hours
- Ceftin 2 pills 3 times daily
- Baclofen 2 pills 3 times daily
- Ativan 2 to 4 pills every 6 hours
- Lorcet 1 or 2 every 2 hours
These medications were in addition to those being administered via the catheter. On Nov. 15, I was in extreme pain, having chest pain and difficulty breathing. After contacting Dr. X., Dennis took me to the base hospital for 2 shots of Demerol to enable me to make the 1½ hour trip back to Columbus. I was hospitalized from Nov. 15 to Nov. 22. During this time Dr. X. was pretty much unavailable (out of town, we later learned) and called in more meds and various tests for me. I had 2 myelograms, 2 cat scans, and 1 MRI. The MRI showed that I had a blood clot (from the catheter insertion) at the base of my brain. Fortunately, a competent neurologist at the hospital had come in to oversee my care. He realized that the catheter needed to be removed and the blood clot allowed to dissolve.
On Sunday, Nov. 22 I returned home. I was taking darvocet for pain, but had been weaned off most of the other medications. The baclofen pump had never been inserted. I had endured mismanagement of pain, been given far too much medication and my torticollis was as bad as it had ever been. I believe that it was also during this ordeal that my cardiac problems began, for one of the first tests I was given by Dr. X. had been an EKG, and my heart was fine. By the time this was over I had developed an erratic heart beat and have had deteriorating cardiac conditions since.
I saw Dr. X one more time in December for a follow-up visit. This remains the worst of all medical experiences I have had with torticollis or any other physical problem.
The pain in my neck, shoulder and the back of my head continued to increase. At this time, if someone had asked if I believed in suicide, I would have said that I certainly understood the temptation. I began to see that death could be preferable to pain above a certain level. I would never have made it through this time without the support of my husband or without my faith in a sovereign God Who loves me and will carry me through any trial and circumstance.
1993 was to be my year of deliverance! I had begun to see, in our national support group’s magazine, some references to a special type of surgery being done by a neurologist in Canada and by a neurologist in Florida. Dennis and I contacted Dr. Carlos Arce in Jacksonville, Florida, and sent him the information he requested concerning my history with spasmodic torticollis. He contacted us and agreed to test me as a candidate for selective peripheral denervation surgery. On March 31 Dr. Arce’s secretary called and scheduled me for testing on April 13 and surgery on April 15. I now had real hope!
Dennis and I made the 900 mile trip from Dayton to Jacksonville in two days on Easter Sunday and Monday. Somehow it seemed appropriate to be moving from despair to hope and healing at such a special time.
The day of testing went well. Dr. Arce said that I had retrocollis and laterocollis. He felt that the surgery would give me a great deal of relief and improvement, but with some numbness in the back of my head and no guarantees. I found this Doctor to be one of the kindest and most compassionate men I’d ever met. On the morning of surgery Dr. Arce met me in the holding area and reassured me and tried to lessen my anxieties. The surgery lasted about eight hours and I had three incisions closed with eighty staples. The surgical procedure was done on Thursday, April 15, 1993 and was the beginning of a much improved quality of life for me. I was in the hospital until the next Wednesday. During this time I did have pain, was on morphine and then on codeine. Physical therapy was begun, and the staples were removed. I was unsure I’d ever be able to hold my head upright again, but improvement came bit by bit. Dr. Arce released me with specific instructions for continuing physical therapy to regain mobility and to reposition my head to midline. I did experience trouble swallowing for quite a while and the stretching exercises for my neck were painful, but the results were very good. We feel that the surgery brought me 75 to 80 % back to normal, considering position of my head, flexibility, and pain relief. I began regular physical therapy in May and continued through August, gradually becoming stronger. I was able to attend and enjoy our daughter’s graduation from college in May and I began an ST support group here in the Dayton area. I really felt that now I had gone, in my journey with Spasmodic Torticollis from despair and desperation on to deliverance.
Although much improved, I still had problems in my right shoulder and at the back of my head. At one of our support group meetings in Columbus I heard of a neurologist who was doing injections with phenol for people who do not benefit from Botox injections. Again, I was on a mission and was off to Toledo, Ohio to see Dr. James Auberle. He was to become another very special person in my life. I began seeing him for phenol injections in December of 1993. These treatments have been extremely successful in eliminating most of the muscle spasms and pain that could not be corrected by the denervation surgery. I have been going to Dr. Auberle now every 3 to 6 months for the past 15 years.
He and Dr. Arce, with their compassionate and highly competent medical care, have absolutely given me back my life. Spasmodic Torticollis is a very difficult neurological condition with which to live and to cope. I have learned that the very best medical treatments are worth pursuing, and there are wonderful medical professionals who can help. I have also learned that one can fall prey to very bad medical treatments when the desperation of pain is overwhelming.
The support of family and friends has been of great importance to me, and my husband has walked every step of this difficult journey with me. I take great comfort in knowing that the God who has seen me through this will see me through whatever the future holds. I do have some physical limitations as a result of ST, but I have also met so many wonderful people along this journey and have learned so much that I know good has come from it all.
The Lord lifts the fallen and those bent beneath their loads. –
PS Maggie completed this in the afternoon of 6 Sep 2007 and was going to send it the next day. During the night she went to sleep in this world and woke to the Lord and His Glory. There is now no more pain only joy.
She was my best friend for 41 years. Physical death will only part us for a moment.
12 Sep 2007
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand