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Originally Posted by romans8
To Romans8: When are you having your appointment? I'm crossing my fingers that yours goes as well as mine did!
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LH,
My appt. is October 15. They offered a way to do it all in one trip but we decided to see the doctor first and then schedule the surgery a few weeks later if it is confirmed. Thank you for your last post describing your recovery as it sounds like our cases are similar. The pain in my right medial scapula is by far the worst part of all of this. At times it explodes into the entire region. When this happens my shoulder actually collapses and is 82 or 3 inches below my left side. This seems to crush many nerves and is really the only time my right arm gets involved. I have significant atrophy on the right side (neck, trap). Nerve studies have always been negative until the last one showing abnormal dorsal scapular and long thoracic which correlate with the scapular pain. I am expecting a long recovery after the surgery but that's ok. I lost my job because of the longevity of this but I am fortunate to have good disability insurance.
I am getting some benefit from a botox injection I received in August. It is not dramatic like the scalene block but I would say 30 - 40% relief. I am hoping to get the surgery scheduled very soon after this wears off as I am dreading the return to where I was. I am told it can give up to 3 months relief.
What is really weird with my case is how I have developed it bilaterally this year. The right side started 7 years ago and my left side has never had any problems until the last six months and now I cannot raise my left arm above my shoulder. I was told this could be a compensating thing or I could have TOS on both sides. It is deteriorating fast and I am becoming more concerned that I will have to have the surgery on both sides. However if it gives good relief on the right I would not hesitate to repeat on the left when it becomes feasible to do so.
Again I cannot tell you how grateful I am to have you sharing your road on here and please continue. My heart goes out to all of you who are suffering with this. DO NOT GIVE UP. I do not understand why more doctors cannot detect this condition and some do not even believe it is real. However all things happen for a reason and this is no exception.
Do you have any recommendations on a place to stay while there? The administrative person sent me a list of hotels and the prices were very reasonable. I am going by myself the first trip and hope to avoid renting a car as driving in unfamiliar territory in my condition is not wise.
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I'm new to this site, quite glad to have found it. It's nice to here from other people with the same or similar symptoms as me. I have had 4 cervical surgeries to date. My left hand middle, ring and pinky fingers have had numbness since surgery two. Left arm pain, shoulder pain, pain at the base of neck, under my arm pit, in the front of shoulder where deltoid and collar bone meet... my right shoulder is more painfull that the left. I used to be a workout machine but after surgery 2 that came to an abrupt halt. i havent been the same since. Over the past year and a half my right arm has developed the same symptoms as the left with exception of the continuous numbness. I did come across a doctor named Tollestrup in Las Vegas where i live. He is a periphrial nerve surgeon who happened to do his nerve fellowship at Baylor. I have a follow up with him in the morning to ask him a bunch of questions before I decide whether or not i want to let him do a scalenectomy on me. If anyone has any information about him i would greatly appreciate it. Sorry about any typos, hard to see on my phone