I'm really not sure on what to do at this point. Gelabert offered me another surgery to remove the rest of my scalences by cutting me open in the front of my neck, but if my first surgery made me worse then why should I get another one. Really doesn't make any sense to me...

The statistics I gave you where from Ntos only from Gelabert not vascular he has a separate pre surgical sheet for each type of TOS.

So Gelabert keeps track separately of his neurogenic surgical TOS cases from his vascular surgical TOS cases (venous and arterial); am I understanding you correctly, Michael? Because he does plenty of both kinds of cases, and in a lot of cases - especially re ops I would imagine - his cases have become neurovascular (if they weren't before); that is certainly true in my case.

One of the biggest reasons people end up needing a re op is that the body has built up scar matter, and likely rather than simply atrophying up the cervical spine as is hoped, one (or both) of the resectioned scalene muscles has reattached itself via scar tissue to other soft structures within the outlet, such as the neurovascular bundle, the phrenic nerve, the LTN or the pleura....and this is what may be causing the recurrent TOS symptoms. If you're blessed with a body that tends to form a lot of scar tissue, that's what you may be looking at (join the club), some people get off light....some of us, not so much.

So a re op consists of not only a complete scalenectomy, but removal of all that scar matter....which can involve lysis of the blood vessels as well as neurolysis of the nerves involved. Dr. Gelabert does not like to 'scrape' too closely, either during the initial rib removal/partial scalenectomy or any subsequent re op, in order to avoid the risk of damaging these vital structures. Because Dr. Gelabert orders scalene blocks performed with ultrasound plus EMG, both visual and aural guidance might help to determine what soft structures are being compromised in your case....for that matter, someone like Gelabert can also read a great deal just from your symptoms themselves. But as a scientist he'll want the diagnostics if you ever do decide to explore things further.


If you decide to explore a TOS re op at some point, Michael, it's naturally a good idea to get as many second opinions as you need to feel comfortable with whatever decision you reach. Dr. Donahue at MGH in Boston, Dr. Pearl at Baylor in Dallas, Dr. Thompson at Washington U in St. Louis, etc. are all nationally recognized, very experienced TOS surgeons who've performed hundreds of re ops. And of naturally, Dr. Sam Ahn in Westwood right down the street from Gelabert would be a good source for a second opinion, as well (he and Gelabert are likely to echo one another, of course <only Ahn will order an angioplasty instead of a scalene block....which could give you some new info>).

Re ops are challenging....the only surgical approach that makes sense is supraclavicular. If scar matter is indeed the culprit, the surgical field can become very cloudy; it can also cause the nerves (for example) to drift towards the spine, so that things aren't anatomically where you would normally expect them to be located. Why you need a top doc to perform the re op if you do decide to go forward at some point. You can also ask for the contact info for a couple of surgical patients who've been through the same procedure, so that they can share their experience with you, Michael. As long as the patients are willing, there's no HIPPA violation in the TOS surgeon facilitating that for you. S/he's not bloody likely to give you anything but favorable outcomes, mind you, but still....could give you a different perspective on things and some valuable info.

In the meantime, please tell me you're not still lifting weights....or at least, that you've backed way off from what you were lifting before. I know it sucks. But unfortunately and as I'm sure Dr. Gelabert told you, weightlifting can contribute to if not cause the aggravation of your symptoms.

Wishing you the best.

Yes, he has different pre surgical sheets for each type of TOS and different statistics.

My surgery made me a lot worse than I was before the surgery. I might go get some second opinion about being reopened, but I'm scared that the outcome will be the same as the first. Gelabert is one of the best surgeons for TOS, and I honestly think he was trying to help me and did the surgery correctly. I think the statistics they give patients are not correct.

For example: When I filled out the questions for my post surgical results some of the questions were stupid, irreverent, and not direct. I remember one of the questions asked me "Do I have pain carrying a briefcase" who carries a briefcase anymore lol. At the time when I filled out the questioner I was also on opioids from post surgical treatment. This was the first time I've taken them so of course I should feel better if I'm drugged up. This is UCLA protocol one of the best hospitals in the world.

I still workout with light weights and avoid movements that bother me. I know my body better than anyone else, and my restrictions.

I'm always in pain even on my medication say out of 1-10 I'm a 5-8. Some days are better than others.

I work with a orthopedic surgeon 5 days a week and my entire family are MD's. I don't even think they understand the type of pain that I'm in and how it effects me. Maybe my grandfather does because he works in workmans comp.

At this point in my life I'm going to try and survive on medication, and wait it out. I was only 23 when I got injured, and there might be a cure for me in the future. The problem with being injured at such a young age is that you will be in pain a lot longer than someone who was injured later in there life. I was a Pre Dental Biology major in undergrad and I feel like we don't completely understand neuopathic pain yet and the problem might be on the cellular level instead of a simple compression of the nerves.

I understand your case is different because of the surgery, but if you can do get a full body eval by the PRI guys since you are in the US. Or somebody familiar with scoliosis. I suspect your dysfunction (as is that of most of us) is muscle imbalance patterning that makes you overuse certain muscles forcing the pec's to tighten up and clamp on the nerves.You need a postural evaluation and then a fix, opening up your posture.