Questions about my Thoracic Outlet Syndrome
 

For some background info:
I'm a healthy, active 19 year old, and I've had TOS for over 4 years now, been diagnosed for about 3, and have not responded to medicines or physiotherapy. About 2 1/2 years ago I had a left rib resection and scalenectomy to try to fix my worse arm (left) and initially the pain went right away, but after about 6 months the pain started returning slowly at first; and now I have a considerable amount of pain in both arms daily.

But here is what I really want to know:
1. My surgeon told me that my operation was really the end of the line in terms of treatments for me...is this true? Do I really just have to live with a chronic pain for the rest of my life? Honestly all I feel like doing is getting my nerve cut out...that might seem drastic to some but those who have had chronic nerve pain surely you understand?
2. I have never really been much of a runner, but for the past 2 year I have noticed that if I do try to go for a run, literally about 100m (max) into the run my arms will start to feel really weird and heavy and slightly tingly, and my hands will go really really white/yellow. then I have to stop because it hurts heaps and the red colour slowly comes back into my hands as blotchiness..
Has anyone else noticed anything like this? Is this something that I should be worried about or at least see a doctor and get a referral to a neurologist about it?

Any advice/similar stories/ comments about anything would be MUCH appreciated!! I just want to hear from someone in a similar situation! I have never met anyone with TOS so I'd love to be able to talk to people who actually know about it and understand a bit more...
:)

You are not alone. My son is near your age and has had TOS symptoms for a few years. It can be very discouraging, I know! He is a little "behind" you in that he's trying PT and hasn't had surgery. My son was told by past (local) doctors, "I can't help you, live with it" but that didn't stop us from trying to find someone who can help. Maybe you'd benefit from a consult with a top tos doc (see sticky threads for names). Are you in the US?

At your age , I suggest seeking out a highly rated top TOS surgeon, and get a reassessment.
Redos can be done, or it could be internal scar tissue, or something may have been missed if previous surgeon was not an expert in the surgery..

Running often will cause more jerking /hunching of shoulders due to weight of the arms , I suggest walking or other fluid body work.

Was your initial rib resection transaxillary or supraclavicular? Mine was transaxillary and my neurogenic (ulnar) symptoms returned after 9 months. I had a supraclavicular cleanup of scar tissue and to check for adhesions of scalene remnants (it was suspected but there were none in my case, just scar tissue on the brachial plexus). I am close to a year post supraclavicular procedures and TOS symptom free (my cervical spine is another story).

If your surgeon is telling you it's the end of the line I would seek additional opinions.

Thanks for sharing your story, and I'm sorry you are going through this. I've been dealing with TOS for 21yrs, so I know about what you are going through. Just had my third surgery 3 months ago. No, u don't have to live with that pain, you are too young. U have so much life to live. I've gone through the same thoughts and others, due to all the pain with TOS. But thank GOD I didn't follow through with those thoughts. I hope and pray u will not allow all the pain and other symptoms get you down. There are plenty of doctors that can help you or at least give you some more advice. Trust me, in my years dealing with this, I've been told everything. I've gone to NUMEROUS of doctors.

This is a great site, and most of us have been through what u are going through. So u are not alone. Keep asking questions, and someone on here should be able to help you with a doctor in your area. Keep fighting, and don't give up.

God bless

TOS Journey
 

Hi,

TOS hit me really young, too. I feel your frustration! Perhaps your surgeon just meant that he or she had done all that they could do for you, surgery-wise. But take heart; there are several more options for you to try. Including additional surgery, if it comes to that (with a different surgeon).

You could have a pec minor release, for one thing, if the pec minor is a culprit muscle in your case. Also, did your surgeon completely remove your scalenes, or just 25% (as many do, first time around - and some cut just enough to get that first rib out). If not, you may need a complete scalenectomy at some point. You might also want to make sure that ALL of the first rib was removed (it can grow back, otherwise!). Finally, down the road, surgery for lysis and neurolysis may be indicated if scar tissue becomes an issue for the blood vessels involved.

If I were you, my next step would be to find a knowledgable pain management specialist with a background in neurology (rather than anesthesiology or physiatry), who treats TOS (be careful! Some docs don't "believe" in TOS!). From there you can ask for a prescription for physical therapy (again, you'll want a TOS-savvy PT, as traditional PT can be harmful for TOS'ers). Even though physiotherapy was not helpful for you before your surgery, now that you are 'decompressed' you may have a different result. Your pain doc may also want to try trigger point therapy, nerve blocks, certain meds for nerve pain, etc. to see if that helps. A good body worker (Alexander Technique, Feldenkrais, etc.) or chiro can be useful, too.

Sounds like the nerves running down your arms are getting flared up when you are running, from the weight of your arms. Probably the ulnar nerve (most of us have lower trunk injury to the brachial plexus). Try fast walking instead, using pockets or fanny packs to support the weight of your arms, to prevent this from happening.

Ultimately, your goal should be to learn as much self-care stuff as you can (deep breathing techniques, stretches, exercises, postural adjustments, ergonomics, etc.), so you can practice this at home on a daily basis. This will reduce or eliminate the need for dependence on third parties to keep the TOS monster at bay, and give you much more control over your own course of treatment in the long run.

Take heart! Good luck to you, and I hope you feel better soon.