Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 02-17-2013, 11:35 AM #1
romans8 romans8 is offline
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romans8 romans8 is offline
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Default Trying not to panic but

I have been on a serious dive after doing so well. I am 3 1/2 months post op rib ressection and scalene removal. After the initial first week of surgery pain and a setback with a freak embolism I felt so good for about two months. I felt better than I had in years and really thought I had finally found a way out of this 12 year nightmare. About mid January I started having issues and a return of symptoms - shoulder dropping, tingling and ticklish in neck and jaw, shoulder and neck pain, etc. the pain paths feel somewhat different than before but is getting worse and becoming more constant. I am fighting despair and panic.

I ordered a copy of the op report to see exactly what was done. The doctor thought is was neurogenic going in but appears to have been neurogenic and arterial as the subclavian was also compressed. The report said there was excessive scar tissue and fibrosis bands. This seems to be common for me as previous shoulder surgeries said the same.

How can this be? Can scar tissue form again this quickly? What else could be wrong? This is really testing everything about me and I am not sure what to do.
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Old 02-17-2013, 04:10 PM #2
tosmother tosmother is offline
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Romans8:

I don't know what to say and I can hear the dispair in your message. I just had to let you know that I will continue to pray for you. I am so sorry that things are not going well for you. I wish I had some great words of wisdom or some great suggestion for you to try, but I don't. Don't give up! Maybe someone here will know how to help you.
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Old 02-17-2013, 07:54 PM #3
kellysf kellysf is offline
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I'm sorry to hear about your experience. I had surgery 8 years ago. It took me about two months to recover from the surgery. I felt some improvement for about three weeks. Then the door started closing. All my symptoms came back except for a blood pressure cuff feeling at my elbow and a tight glove feeling on my hand. I also developed much more severe headache and migraine. An MRI eight months after surgery showed scar tissue on my brachial plexus, which was still forming. If you look at many posts here, it's all too typical for symptoms to return after 3 or 4 months.

I hope in your case maybe you've overdone activity because you were feeling better. I'll keep my fingers crossed for you.

Take care,
Kelly
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Old 02-17-2013, 08:33 PM #4
Sheri_TOS Sheri_TOS is offline
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Roman,

I am six months post op and 8 years on the other side. If the downturn just happened recently, then it might be from doing too much. A few weeks ago, I was fearing the worst as my pain was unlike anything I'd experienced since the 1st side developed TOS nearly 10 years ago. For me, this recovery was fairly easy compared to the other side except I've had several incidents, including a new car accident 6 weeks post op, that caused me set backs. I will not be surprised if this side doesn't fair as well as the other side due to all the setbacks.

For me, my recent downturn turned out to be from the impact of a whiplash coupled with working 7 days a week, 16+ hours a day for many weeks. I started seeing a medical massage therapist and my doctor did some injections hoping the flare could be calmed down. The massage turned out to be a very good idea. There is someone else on the board who had a repeat surgery last summer who posted awhile back that he started doing massage and acupuncture and has finally seen some improvement. His screen name is brmr19 and he posted in January about his progress. The massage isn't a spa type massage. The massage therapist focuses in on the area involved and was better at calming down the situation than the physical therapist.

What works for one person may not work for another. You might need to see the surgeon again; or consider seeing another TOS surgeon.
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