So I saw surgeon number two (the Thoracic Surgeon) on Friday and only today can I even bring myself to get this out there. Honestly, I'm terrified to hear the responses here because I have no other option.

After researching and seeing both the surgeons to be involved with my surgery I have determined that they are both competent and highly recommended surgeons. I have absolutely no doubt that they are great at their jobs in their respective fields... but I do not think that they are well-versed enough in TOS to be the correct choices for my surgery.

The vascular surgeon didn't have any of my records on hand and took me at my word without even looking at the imaging I had with me that I had TOS after doing one provocative test. I saw him for less than 5 minutes and he just told me that he was sure that I had TOS, needed a first rib resection, didn't talk to me about my less symptomatic but still clearly impaired right side at all, and told me that I had arterial, venous and neurogenic TOS because the nerve is the furthest back anatomically so obviously there is vein and artery involvement... I think most of us know the problem with that statement.

The thoracic surgeon took a long time to speak with me and had obviously reviewed my previous records thoroughly. He also did one provocative test and said that he was not completely convinced that I had TOS because my arm symptoms follow both the back and inside of my arm which "isn't typical presentation." Honestly, I don't see how, if my symptoms are perfectly following the tracks they can take with TOS, why it is a problem that both nerves are affected instead of only one. When I asked him about pectoralis minor syndrome he had me explain to him what it actually was and what a pec minor release is then told me that he wouldn't do that if this failed and I'd just have to go to a pain clinic instead. He also said that even though he's only done 40-50 of these surgeries in his career that it's like "telling someone to eat dinner with a fork, of course they're going to eat it with a fork! This is what I do, it's easy." He said they are going to leave little nubs of rib instead of taking the entire thing so he doesn't disturb nerve bundles and that if there is scar tissue on the nerve they leave it there because they don't go near nerves. He also said that the area is "virgin territory" so there's never any scar tissue there anyway.

I'm really nervous. I don't have an extra rib so that's not what's causing my symptoms but I have been in 2 car accidents (one being 70mph head on collision) so the possibility that I have scar tissue is high. I also have poor posture from prior multidirectional instability of both shoulders (corrected with surgeries), spend a ton of time typing, and am a former backstroker/discus thrower! I could have any number of issues going on in there.

I'm also worried because it seems like everyone here who has posted their medication list post-surgery has quite a list. He said he will only be prescribing morphine... don't I need a muscle relaxant to start relaxing the area once it's decompressed?

He's said that he wouldn't say that I "need" surgery because "I'm in a grey area" in terms of what is causing my pain but that he "understands that I've been going through the ringer over the past 5 years and that he respects that I may just be at the point where I want surgery to rule this out." He said that he is hopeful that this will help, but that he was still wondering if my shoulder was causing the issues even though no less than 4 shoulder specializing orthopedics have said my shoulders are now 100% perfect and they never would have known that I had surgery if I hadn't told them.

I would run as fast I could to Dr. Donahue as I am close enough... but I am on state Medicaid :-( My fine motor skills, strength, stamina and dexterity is decreasing at an alarming rate from being about 90% 4 months ago to being at 40% now. I can't wait and I'm at wits end. I feel like I have to do this to get out of this grey area. I can't work, but I don't apply for disability. Either this goes really well and I can go on with my life or it goes really bad and there are more options out there for my family.

Please tell me this could be okay? At least the thoracic surgeon said that he was confident he could do this and that he's had some people like me in a very unclear area but ended up feeling like a million bucks. I guess I'm just looking for some reassurance and support from people who have been there. I'm scared :-( One of the worst parts is that I have post partum anxiety that I have not treated as I still breastfeed. I've been able to handle it well, but this is getting to be hard with an upcoming surgery. The surgeon told me that he wouldn't help on that front at all because of medication abuse! Hello! I've been in a ton of pain for the past 2 years and I've taken exactly NOTHING for it for the sake of my baby and before that I toughed it out with a Tramadol or two a month! Come on!

Well, I say if you are iffy about these guys keep looking.
With your history , I think you need someone very skilled as there probably is a lot of inner scar tissue, adhesions that will need to be cleaned out and it is a very delicate area.

These guys just seem to be a bit offhand about the whole thing.

I think most really good TOS surgeons take the time to explain, show & make the patient feel a trust with the level of care.

Have you seen the posts about seeking and interviewing surgeons in our PT & Drs thread?- a couple of members have posts there that give a good idea of what they looked for.
http://neurotalk.psychcentral.com/thread135.html

I have, but there are only 2 options in Connecticut for this surgery if you are on Medicaid. The ones I am going to and one in Hartford who has a horrible reputation and I've been told by my PCP to avoid at all costs. He does not have good reviews and neither does the hospital. If I could just go to another doctor, I absolutely would. There's just no one else and if I wait I don't even want to know how bad I'll get. It's already intolerable.

Do you mean Hartford hospital?my friend had her surgery there. Venous tos. She had a blood clot in her arm. She was very pleased.

What do the "rate my doctor" websites show for these 2 guys?

If they are highly rated as surgeons with lots of skill in other delicate surgeries, doesn't have to be TOS specifically, but other major surgeries, it would be good to know how they rate.

You might ask if they have had to deal with freeing nerves from scar tissue, there's a technical word for it but I can't recall it.

Yes. I have a family member who used to be medical staff there who didn't have a lot of good things to say about the place and what you've said is the first positive thing I've heard about the surgeon :-(

Great. I went to check out Dr. Lowe just in case. Wouldn't hurt to just call the office. He doesn't take my insurance- I could have sworn before that he did. Looks like I have exactly one option for this surgery :-(

I wish I could tell you to go with these doctors but I personally can't. Dr. Donahue told me that this surgery isn't just any old surgery and that many doctors feel they can go ahead and perform it when they shouldn't. Regarding the nerves and scar tissue, he spent a portion of my surgery removing that tissue from my nerves, which is a very delicate procedure, so your Doctors' indication that they don't touch that part gives me pause as it makes it seem like they are not fully versed in the most effective techniques for dealing with this.

My only suggestion is this: see if you can get a consult with Dr. Donahue that if you can, pay out of pocket (I think that might be in the neighborhood of $500, because I somehow remember asking his secretary once). Listen to his advice and move forward from there. As much pain as you are in (and my heart goes out to you), you don't want to enter this lightly, and that might be the best $500 you ever spent. I know that $500 is a lot of money but the information you get may be well worth it, and either way you may be able to move forward with much more confidence.

Just to clarify, I don't mean to tell you not to go with these doctors, but rather to try to do so (if you do) with as much information possible so you can move forward with confidence.

Unfortunately, I have no money to spend. I currently have $400 to my name and my car's engine needs to be replaced- I can't even afford that. Getting any sort of loan is out of the question. I can't work much without having this fixed, and without being able to work I can't afford to get decent medical care and decent insurance.