[tos1234]

I was hoping I could ask everyone for advice. I had TOS surgery 6 months ago (1st rib resection, C7 Costotransvertectomy, anterior and middle scalenectomies, brachial plexus neuroplasty, pec minor release) and have been doing much worse with RSD like symptoms (whenever it is cold, my hand/arm/elbow becomes more painful/burning) on top of worsening shoulder/elbow/forearm/hand pain. I recently had a MRI of the thoracic outlet and it shows moderate inflammation of the brachial plexus where the surgery occurred and the T1 spinal nerve is tented above a residual posterior first rib.

Questions for the group:

1. Has anyone had imaging of the thoracic outlet after TOS surgery? If so, what did it show and how long after the surgery did you have the imaging done?
2. Did anyone have residual posterior rib after surgery?
3. Did you have a re-operation?
4. Who did the re-operation?
5. Did you feel better after the re-operation to remove scar tissue or a posterior 1st rib?
6. Did anyone take steroids or anti-inflammatories to calm down the inflammation after surgery? If so, which medications did you take and did it help?
7. Any advice about what to do with this information?

I am not able to work and am in almost constant pain (currently on four pain medications and still in a lot of pain - note I was not on any pain medications before the surgery). I am feeling very sad and your thoughts and advice would be deeply appreciated.

[Jomar]

I'm sorry to read that you are in more pain..

I think I'd try to contact some of the top TOS drs and see if any will evaluate your condition, to see if some redo are possible.
You might also need to find out if it is RSD /CRPS or not...if so additional surgery is a bit risky for spreading of it.

Get copies of your records, imaging and surgical reports - in case you locate a dr to send copies to.. always keep a copy or your own records..

[Nellyzen]

I am so sorry to hear about your post op issues. What type of TOS do you have? I have ATOS and VTOS and had 2 first rib resections 6 weeks apart. I had an MRA 2 months after the second surgery which showed that the compression of the vein and artery had been resolved on the right side and minimal compression on the left side which means there was inflammation and scar tissue which is completely normal.

What is your surgeon saying? I would not think about a redo yet, it is very early and the recovery from these surgeries is long.

[kellysf]

I had surgery 10 years ago. After about six months, I was worse, so my doctor put me on steroids thinking they would clear up any inflammation still lingering as a result of the surgery. The steroids made no difference. A few months later I had an MRI of my brachial plexus which showed scar tissue building up around the BP which hadn't been there according to MRIs done prior to surgery.

I've never had re-do surgery but I've considered it after 10 years of worse pain and reduced functionality. I wonder if removing scar tissue could reduce some of my symptoms or if it would just be a vicious cycle.

I hope you feel better soon.

Kelly

[Jomar]

There have been a few members that had unusual amounts of scar tissue build up post op - and quite quickly also..

Did you have mainly VTOS since you were not on pain meds before surgery?

Did you feel your surgeon was highly qualified when you decided to have surgery?
Had you searched out surgeons before hand, or was it a case of possible clotting factors & urgent need?

[tos1234]

Thanks so much everyone for your great suggestions and thoughts. It is deeply appreciated. I have severe bilateral neurogenic TOS and am waiting to hear back from my surgeon (who is regarded as one of the top TOS doctors). I am very discouraged and taking oral steroids as you mentioned kellysf hasn't made any difference yet.

KellySF is there a way to private message you as I was hoping to ask you a question?

Originally Posted by Jo*mar

There have been a few members that had unusual amounts of scar tissue build up post op - and quite quickly also..

Did you have mainly VTOS since you were not on pain meds before surgery?

Did you feel your surgeon was highly qualified when you decided to have surgery?
Had you searched out surgeons before hand, or was it a case of possible clotting factors & urgent need?

[Jomar]

You should be able to send PMs shortly. If you click Kelly’s username to the side of her post, a drop down menu will give options available.

You had NTOS and were on no pain meds previous to surgery?
You must have been in pain though....

[kellysf]

Sure, you can PM me. Take care.