Below is a story written by Richard. Richard’s story appeared on SOREHAND; a forum brought to you by UCSF and computer geeks located in Silicon Valley who developed RSI many moons ago. His story will give you “hope while suffering from TOS living hell”. We have his permission to blog it. And at the end of the story Richard gives his contact information for those in need.
I write this hoping that my experiences can help you.
I have a lengthy story spanning 12+ years of TOS pain and suffering.
I have worked in the computer industry for almost 30 years. I was diagnosed with carpal tunnel syndrome after experiencing shooting pains bilaterally as well as pain in hands and forearms. I did not believe the diagnosis from the start..
After 5 years of Dr. visits and treatments, I agreed to CTS release on the right side. Needless to say that did nothing except help the surgeon pay for his mortgage / car payment. I suffered endless dr visits, short term disability leave, and agony from pain which resulted in unbelievable stress for me, my young family as well as my employer. My family suffered the worst as I was unable to pick up my young children or do any fatherly physical activities with them. It’s hard to play catch when one can’t feel the ball to throw to them. It was heart breaking not being able to pick them up to comfort them when I feared that due to lack of sensation, I couldn’t tell if I was holding them tight enough so I wouldn’t drop them.
However, I persevered and my family stuck by me, my friends and extended family was there to support me.
I lucked out 12 years into the nightmare while reading a thread from sore hand. A dr from england had just completed a study on CTS and found that the majority of people who were diagnosed with CTS really were suffering from TOS. Normally I would have just dumped it to the data banks and not paid much attention to the post. However he also listed the characteristics of a person prone to suffer from TOS. For his list I lacked only one. I contacted him via email, not expected any type of response, but much to my surprise he responded and we engaged in a discussion about TOS.
Based on this discussion, I returned to my family dr, who had gotten to dread my visits as he didnt know what to do with me any more, and asked to be referred to someone who knew about TOS.
A short time later I was referred to a thoracic surgeon. He listened to my tale of woes, after which he got me to do some simple stretch tests. I don’t remember what they were however, these tests showed that I lost pulse after elevating my arms .to a minimal degree.
He booked me in for a contrast test? Where the inject die into the blood system and can take X-ray? Ct? Scans to show the blood flow. The results showed that certain positions my blood flow to my arms hands became so restricted as to cut off the flow.
In the mean time I had been researching TOS the best I could and had a good idea what the surgeon was going to recommend. Not any surprise it was the removal of the 1st rib. I countered with more traditional, less invasive treatment. We ended up with a referral to a physiotherapy session – use of ultrasound on chest and back muscles and me working with an awesome massage therapist who was determined that I would not see surgery.
Apparently over the years, due to bad seating, workstation placement and ergonomics, as well as my propensity to work long hours with minimal breaks, my chest and back muscles had lost their memories with the chest muscles had becoming constricted and didnt know how to release. The back muscles had extended to meet the chest muscle demands and didnt know how to constrict back to their normal position.
With tough and painful work with both physio and massage, after 18 months I was 75% pain free. After 36 months I was pain free. I have been relatively pain free for the past 12+ years.
I will never be free of this and still suffer some days. But I have learned to put my shoulders in my back pocket. I drink lots of water so that my day is broken up no matter how immersed I get in my work. I lift my chest bone and move it back. It all seems to help. It doesn’t make up for my 12 years of living hell – unable to physically interact with my family, the disbelief exhibited by fellow workers as they couldn’t see a physical manifestation of my injuries, the financial struggles due to being unable to work, the hypocritical actions of the union I belonged to who said they would help their members in times of need and then turning their back on my pleas for assistance, doctors who would not listen when I talked about the pain, origins, manifestations. The company I worked for tried their best to support me and I have to give them credit. However a firm diagnosis was committed to by a dr until I forced the diagnosis and treatment.
I have tried so many things thru my living hell – these are the ones that help me.
Hopefully this provides some insight for you. If you or anyone else would like more details I would be happy to share. The pain, suffering and other avenues I have followed would take much more typing to express and this is long enough already.
I lived thru 12 years of living hell. I became very bitter with “my union”, workers comp board, and drs. If it weren’t for my family, friends and a determined massage therapist – I doubt I would be a functional, contributing member of society today.
I don’t know what kinds of words of encouragement to offer people that go thru this. I learned to persevere. Research on the Internet. Talk with others. Ask questions – especially of drs.
A friend of mine won’t go to a dr. He says that once they quit practicing and know what they are doing, he will go see them.
“I am but a phone call away and am more than willing to talk with people about my experiences and offer advice as appropriate. If I can help one person I would be happy to. If one hasn’t lived it – one has no idea of what it is about. I’ve lived it – and survived.”
*And for those interested in an RSI forum SOREHAND here ya go…