Recurrence
 

Fellow TOS sufferers,

I am just past 6 months and the pain has returned to my scapula after coming back in my neck at month 3 and my shoulder at month 4 or so. I hurt every bit as much as I did before surgery. This is so hard to take because I was pain free for the most part in the first 2 1/2 months except when I did too much. To make matters much worse this has thrown me into a serious state of depression. I have been taking Wellbutrin for this for years but it seems to have quit working even though I have gone up in dose.

I know there is surgery for recurrence and nospam is currently down this road. I don't know if my family can go through that and they do not understand recurrence anyway. I know how well I felt the first three months and if that can be attained again I would be willing to do it. Perhaps starting physical therapy faster would prevent scarring again if that is the cause. As some of you know I experienced a blood clot in the lung 12 days after the initial surgery so I was not able to get into PT until a month after surgery.

This has really knocked me down. I know some of you can relate. Any words of encouragement or wisdom?

Who was the doctor and did they remove the full anterior/medius scalenes with the supraclavicular entry?

My wife is a psychiatrist and I have been adamant with her that my depression is because of the chronic pain and not because I am truly clinically depressed. I have refused to take anything for clinical depression. The only antidepressant I take is low dose Pamelor for pain, not depression. Cymbalta worked even better, but I had some side effects and had to discontinue it. Thread: Advice on Nerve Meds

IMO, pain management is very important. My pain management doc agreed. I had became tolerant to hydrocodone (Norco/Vicodin) so we had to find drug therapy that worked, which for me is Valium, Neurontin (doubled dosing), Pamelor, and Percocet/oxycodone (to replace hydrocodone). The pain relief gave me the strength to face the recurrence and re-surgery. I also found that the TOS pain seems to lead to rotator cuff bursitis/tendonitis. Icing 2-3 times a day has greatly reduced shoulder pain.

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brmr19 is another member who has had re-surgery for recurrence. Thread: home from the hospital

My personal theory is that the rib resection surgery is traumatic and surgeons need to be honest that re-surgery for recurrence down the road is a possibility. The re-surgery and recovery has been much easier for me this second go-around.

Thread: Scar Tissue and Adhesions Post-Surgery

I am feeling better day over day, but I really fear tapering down the meds although I know long term use of Valium and Percocet are not advised.

Here is an article on reoperation due to recurrence. I think the rate is much higher than 1%

http://ats.ctsnetjournals.org/cgi/reprint/21/1/19.pdf

This was published January of 1976.

Please be patient. I have had two surgeries and still have bad days. I continue to slowly improve. I continue stretching everyday and take gabapentin and cymbalta. I have TOS bilateral, but only surgery on my left side. The thinks that help me, which I do once a month is acupuncture ( traditional method) and massage with active isolation stretching. I have found the more strength I do for my scapula, the more I find how tight my pec muscles and scm are still extremely tight. Baby steps are needed. I have the ice pack listed in this post, as well as a intelliskin shirt. I have just started a new exercise program called crossover symmerty http://crossoversymmetry.com/. I will let you know how it works. I just started this past week. Please try to stay positive, I know it is hard at times. I have days where I feel I regressed, but then will have very good days. It took awhile to learn my limits and I still tend to over do it on days, but that is my nature.