TOS on the other side??
 

Hi, all! I'm about 10 months out from a first rib resection/anterior scalenectomy. I had been debating the pec minor release, but things finally began to get better- enough that I've decided to cancel it for the time being. Still a lot of up and down, but in general, things are improving! (Able to ride 20 minutes on the recumbent bike several days a week, do some pilates, and am regaining some strength!)

However, I have been having issues with my left side that have gotten progressively worse. I have numbness/weakness in my left hand- my whole left hand (as compared to the right side, which at its worst, was only 4th and 5th fingers), losing strength and function in my left arm, color changes in my hand, and some pain that feels like compression in my chest. NOTHING helps.

I had started playing my instrument a few minutes a day with no flares on the right (for the first time in 2 years!!) but since my left arm comes across the chest, I wondered initially if it was postural. I stopped playing, it didn't improve, and symptoms are constant. On my right side when this had all started, postural work improved things somewhat; on the left, nothing.

Dr. Donahue thought it was likely that since my anatomy is similar on the left side (I had VTOS/NTOS on the right with a compressed vein), the issue is primarily anatomical rather than postural. I feel similarly, since I've been doing PT/OT/acupuncture/massage and nothing has made any difference. (Plus my shoulders aren't rounded!) He recommended Botox in the anterior scalene and the pec minor as a first course of action. He also thought it was likely I may need the TOS surgery on that side down the line.

Has anyone else experienced this- TOS on the opposite side? (Does this sound like TOS?) Is it worth getting a second opinion and going through the MRI, venogram, etc. to be sure?

My other thought was maybe brachial neuritis, but if so, what can be done about it?

If your TOS is anatomical, there is a good chance it is bilateral. I believe my TOS caused my postural changes.

For neuritis, you could simply try 800mg of Advil to see if it helps. 3-5 day course of Toradol can be even more effective. Medrol DosePak (steroid taper) is another option. Discuss with your physician.

I had a similar experience. Dr. Donahue completed my left side resection, then within a few months I started to get matching symptoms on my right side. I went from having no TOS symptoms to having them just as bad as my original side over the course of a few months. This time around my PT exercises had no impact.

Dr. Donahue said the same thing to me- since the anatomy was the same on both sides the additional stress on my "good" arm following my operation was enough to push it over the edge. It was worsening at such a fast rate that I opted for another surgery.

-Ben

I can relate. I am going to mention my post op symptoms on the non-surgical side when I go to my followup. And I keep a journal of all those. My problems seem primarily anatomical also. I don't think anything would show if they tested me because all this has been under observation since my right-sided vtos needed surgery.

Thank you all for your support- it's comforting to know I'm not alone.
Ben, did you have your second surgery and if so, how did it go? Was it an easier recovery on that side? (Dr. D mentioned that it might be "slightly" easier for me because symptoms hadn't been going on quite as long and I don't have any nerve burning like I did on the other side.) Did you end up with burning after surgery? How is your original side holding up?

I had my second surgery two and a half weeks ago. It went well, both the pain and the functionality of the arm are a little better this time, though having to rely on my left arm for everything just four months after having it operated on has been a challenge. My original side is holding up with just a bit of extra soreness (as far as I can judge) but it gets very tired very easily. I'm a bit apprehensive about how the next few months will play out, but I'm trying to stay optimistic. I'm not certain what you mean by "nerve burning", but the types of pain I've been dealing with this time is similar to what they were the first time.