Declining Surgery at this Time:
Primary Diagnosis: Neurogenic Thoracic Outlet Syndrome
My struggle with Thoracic Outlet Syndrome began in October of 2006. I am a 36 year old male, outgoing, and formerly a very active person. I have played sports all my life. I am use to hard work and have often had to deal with pain. I had always thought that you went to the doctor only when all else failed, and there was blood gushing from somewhere that just wouldn't stop. I believed that people that could not deal with there problems on there own were, well sissies and needed to learn a thing or two about life.
My opinion has changed!
I started having a slight burning sensation in my right shoulder. I had been working out on a daily basis during my lunch hour at a local health club. I decided to discontinue my exercise and only sit in the hot tub and steam room until my shoulder got better. Four months later, in mid January, my shoulder was considerably worse. At this point I decided to break down and go see my doctor. He evaluated me and was sure I had pulled a muscle and gave me a prescription to help it relax, and asked me to see him again in three weeks.
Not wanting to wavier from his original diagnosis, the doctor, advised me to go to physical therapy and continue taking the muscle relaxers. Three days a week I went to therapy and did everything I was asked to do despite how it began to hurt more and more. By the middle of March I was in more pain than ever, and upon arriving at therapy told the therapist that I could see no improvement and that I was getting worse, now a tingling had started that was not there before being treated by him. He called my doctor right there and informed him of this and said that he had noticed that I was not responding to the treatment as he had hoped. The doctor had an opening that afternoon so I told him I would be there.
His first action at this appointment was to take and x-ray. Nothing showed up but he believed I possibly had a pinched nerve in my thoracic spine, and sent me to have an MRI. I called his office every day for two weeks and left messages on his nurse's voice mail for the results on the MRI. I go no return calls. I finally asked the receptionist to get the nurse on the phone. She reluctantly did this as I held on. When the nurse came to the phone she informed me that the reason she had not called back is there was nothing to tell me. Nothing had shown up on the MRI so I should schedule an appointment if I wanted to talk to the doctor about it. I was furious and determined that I would have someone else evaluate the MRI results.
I called the testing center and asked to pick up the MRI report. I read the report and found that it said I had a mild unconvertaebral join spurring at C 5-6, resulting in no significant stenosis. The first available appointment with the leading spinal surgeon in town was the last part of April 2007. I brought the copy of the report with me. At this point the pain had progressed to a dull ache that was constant and both burning and tingling sensations that happened on a regular basis.
He reviewed the results of the first MRI. He was unhappy with the way they had done it so he sent me for another one and did another x-ray. I met with him again and he was almost positive that the pain I was feeling was not from the issue at C 5 and 6 vertebrae. (A side note to all of this is that when you have been in increasing pain for a remotely long period of time it began to wear on you not only physically but mentally. I was starting to become irritable at home and at work.). After reviewing the results of my second MRI the doctor decided to attempt to do a spinal block and look for a change in my symptoms.
By the end of July of 2007 the pain had increased to include not only the soreness, tingling, and burning in my neck and shoulder but a swollen lump near the base of my neck, tingling in the back of my arm, twitching in my right side of my face, twitching in my right arm, a very tight feeling in my chest and my right arm getting very cold in comparison to my left side. The spinal block had been a bust and he wanted to do more testing, a nerve conductivity EMG study. Well, not knowing what this entailed I agreed. This test, which involves needles that were 3 inches long and no sedation, showed moderate to severe nerve damage in my right arm similar to Carpal Tunnel Syndrome. He could find no reason for me to be in such pain. He did witness the lump that would develop on the right side of my lower neck, so he sent me for a CT scan of this. It once again found nothing abnormal and was not swollen when the scan was done.
The spine doctor referred me to a specialist for Carpal Tunnel Syndrome. Upon his first evaluation he determined that if I had Carpal Tunnel which he doubted that it was secondary to what was causing the issue with my right side neck shoulder and arm. He had me perform several maneuvers with my arms and asked to take my pulse in these positions. He called in his nurses and repeated it having them take my pulse as well. He wanted yet more tests ran.
He wanted a third MRI, second CT scan, a 3 phase bone scan, and an ultra sound. I decided to make a day of it, because I had missed so much work already, I did not want to take more than one day off for more testing. The tests showed numerous issues, arthritis, in left hand scar tissue on right arm; all but one was a waste of time. The Ultra Sound showed a severe pressure drop in my right arm when raised. The result of the test mentioned something called Thoracic Outlet Syndrome. I had never heard of it, and was anxious to get back to the doctor and see if this could be the root of the pains I was having.
August had now come and gone with no resolution to my issues. I had been hopeful so many times that someone had got to the root of the problem that it was hard to be excited about an obscure name on a report. I got back in to see the doctor that had ordered the last round of test in September. He was very hopeful that this was it but the MRI he had ordered did show what could be a small tear in my right shoulder and he wanted to make sure that we ruled that out before attempting to find someone to look at the Thoracic Outlet issue. He was most insistent about this and wanted to make sure I went to see the best shoulder specialist in town.
The bad thing about seeing good doctors is that everyone else wants to see them too. I had to wait a month to get into see the shoulder doctor. He reviewed the films from all MRI s and explained that what had been seen in one would not cause any pain much less the type of pain I was describing. I asked him about TOS and he almost laughed and said that TOS would not cause pain in the neck and shoulder. Well I was at a loss; once again no hope of relief!
The Carpal Tunnel doctor was at a convention and would be gone for two weeks when I attempted to get back in to see him. I was unsure of what my next move should be. I decided that I had to follow the only lead I had and that was the TOS reference from the ultra sound. I called 6 different specialist offices trying to find someone that worked on this. Most of the people that answered the phone had never heard of Thoracic Outlet Syndrome. This was very disheartening, finally I found a Vascular Surgeons office that said they did work on it but the doctor was booked full. I took the first appointment they had which was for the end of October 2007.
For a person use to being in control a situation that is beyond control is torment. The pain and emotional suffering that had been going on for almost a year had worn me into a deep depression. I went back to my family doctor to discuss this depression. My wife insisted on going with me to emphasize the urgency of the situation. He was very understanding and actually knew more about TOS that I would have ever expected but did classify everything he said with "I"m not as knowledgeable about this as I should be." I explained my entire current situation and he listened very intently. He spent forty five minutes with me, the longest any doctor ever had. He said for me to continue waiting for the appointment at the end of October because the person I was going to see was the only TOS "specialist" in town.
I kept my appointment with the TOS "specialist" he did the same test with my arms that had been done before and asked me to repeat another ultra sound. I did and it showed the same results of blood flow ceasing in my right arm when raised, they found that the subclavian artery was being restricted when my arm was raised. Upon my next appointment with the specialist he diagnosed me with Nerogenic and Arterial Thoracic Outlet Syndrome and, voiced some very serious concerns about my artery and scheduled an arteriogram. As he explained the complications that arise if the artery is being closed at rest, I began to worry. What about my wife and kids? What would they do if something happened to me? How could I deal with the loss of a limb? All of these issues clouded my mind while waiting for two weeks for the test to be done.
The arteriogram showed the artery was in great shape and was only being closed off when I raised my arm. I discussed my options with the doctor and he said that although he had preformed TOS surgery on many occasions he did not want to proceed until I had been seen for a second opinion by a doctor at the University of Tennessee. The chances of the surgery making me worse instead of better from his view point were 70/30 in favor of making me worse. I have decided that I will not have the surgery since at this point, it has been determined that It is not life or limb threatening. I am going to get the second opinion, in hopes that something more could be done for the pain.
I had begun to research TOS shortly before my appointment with my family doctor, and had learned a lot. The first thing I noticed was that my symptoms were almost exactly what each book I read and every website I visited described. This was great contrast to what I had been told by the shoulder doctor. I found the American TOS Association website and was reluctant to join the forum but started reading some of the posts and could not believe how much in common I had with so many others. I have since made many good friends and they have helped me wade thru the TOS shuffle. I am still in pain and that is bad but, nothing compared to the emotional ups and downs that come with the shuffle. Doctors all across the world need to be educated about TOS, its signs and symptoms and about its victims. The people that are afflicted with TOS are in remarkable pain that they deal with on a daily basis. Add to that a feeling of despondency and helplessness that makes it unbearable without help and understanding from others. Many doctors make the situation worse by being self absorbed and callus towards the patient, often making them feel ashamed, silly, or down right stupid. The medical field in general is under educated.
I've been feeling pretty good lately. My wife has been attempting to do things to keep my mind off my predicament. We have been spending more time with each other and she has been trying to take really good care of me. This has been such a huge boost! I know I am bad about attempting to overdo things and go beyond my limits she had been helping me out when she can. It has brought us closer. I tell you that when you have someone that is concerned that makes it much easier to handle. The pain is still here but at least you have someone to help you thru the hard times.