Hi. This is my first post; I've been scouring this board for the last week or so and have found more information here than I have in the last three years. I really hope someone has some helpful advice for me.

I am having a terrible time trying to find treatment. The doctors I've seen in my town (Tyler, TX) are pretty sure I need surgery and have basically washed their hands of me, saying that TOS is out of their realm of expertise (in the last 3 years I've gone through PT, nerve blocks, MRIs, MRAs, CTs, CT angiograms, U/S, esophageal ECG, traction, x-rays more drugs than I can even recall without looking at my list, and I'm in more pain than ever).

They made one referral to a Dr. Ahn in Dallas (about 3 hours away) - when I saw him he didn't listen to a thing I said and obviously hadn't taken any time to read my records; he didn't even see that the cervical ribs were noted three years ago, nor did he listen when I told him that in the exam room and tried to hand him the x-rays, which I went and picked up in order to have them in hand for this consult, and he tells me "Well, first we'll need to see if you have a cervical rib or not..." I've been going round and round with doctors and have had every diagnostic test in the book, some of them multiple times, and he basically wanted to start all over! Not only does this seem like wasted time and expense, but the hospital in which I saw him was disgustingly filthy - I kid you not, there was mold growing on the wall of the exam room! I have no desire to see him again, nor would I want to have surgery in such a disgusting hospital.

Does anyone have experience with a TOS specialist in Texas? I saw the Houston docs listed on the sticky thread - Houston is 6 hours away and I don't mind going there if I can actually talk to someone first and ensure that I'm not going to see someone for 5 minutes and have them tell me to come back in a few days and then a few weeks, and then again in another few weeks, etc. before ever deciding anything at all, as not only is that exceedingly inconvenient but I'm afraid I'm going to lose my job if I keep missing work with no end in sight, and then I'll have no health insurance. Don't get me wrong, my employers have been very understanding, and I'm sure if I could just tell them what the plan is so they could plan accordingly things would go much more smoothly - at this point even if I told them I had to have surgery and would be out for 6 weeks that would be preferable to what's going on now, which is mostly "I don't know. I see another doctor two weeks from Tuesday and then we'll see" interspersed with "I'm in so much pain I can't sit up straight so I won't be in today" on an unpredictable basis.

I'm just so miserable and despairing right now - I've done everything I've been told to do by every doctor I've seen, I feel like I'm no further ahead, and now to be more or less told "Well, we don't know what else to do with you, good luck!" plus one of the worst consult experiences I've had - is there ever going to be an end? It feels so hopeless!

If anyone has had a positive experience with a TOS specialist in Texas, I would love to hear about it.

I'm glad you got out of that nasty hospital, sounds terrible..

You might also check on the surgeons that take care of the sports teams in TX. We had a thread or 2 in the past about Hank Balocks surgery, but he never posted here.

[Updated: May 18, 2007,
HOUSTON -- Texas Rangers third baseman Hank Blalock, who has had shoulder discomfort in recent days, will have surgery to remove a rib Monday and could be out up to three months.

Blalock missed Thursday's game against Tampa Bay, but the Rangers thought he would be available for their first interleague series this weekend against Houston.

Instead, team officials said Friday he had been diagnosed with thoracic outlet syndrome, which affects the nerves that pass through the shoulder into the neck. The surgery will remove a rib on the right side of his upper chest.Dallas surgeon Dr. Greg Pearl will operate on Blalock, and the team is optimistic he will return in 10 to 12 weeks.]
http://sports.espn.go.com/mlb/news/story?id=2875306

http://www.texasleaguers.com/home/20...-epidemic.html
http://www.dallasobserver.com/2008-0...s-get-back-up/


Definitely worth a drive to see experts with this condition.
If the extra cervie ribs are the major problem , usually recovery is very good with a expert doc doing the surgery.


You might look up those names on our TX docs list and email or call them and ask about sending your records on ahead, so they have time to read them, and any xray/imaging for a review, before you make an appt and drive all that way.

Welcome to Neuro Talk. I am glad you found this site. stick with it for some time and you will find a few new friends and lots of help. I don't have TOS but I sure know what it is. Please know that there is help from this. You have posted your location, and hopefully someone will jump in and tell you a good doctor in your area. Do not loose hope there is successful treatment someplace. You just have to fight to get the care you need. I have gone for referral after referral, and I know what a pain and expense it can be. Don't give up, and keep posting in the TOS until you get a good response. People here are kind, and I know they will respond. I do wish you all the best, and hope you get the care you need to have a better life. What you have already been through is so much already. If you are willing to travel out of your area or state, post that too for referrals. ginnie

Hi there,

I am not from Texas, but I did a little research. Baylor has The DeBakey Heart Center which lists TOS as one of their specialties. I'm not sure if you have checked this place out already, but here is a link: http://www.baylorclinic.com/services...eart/index.cfm

Recently, I had both ribs resected up in Boston with Dr. Donahue. I know coming to MA would be quite the trek, but if worse comes to worst, I very highly recommend him!

Welcome to this community.

Dera Losing Hope,
Please dont lose hope, there are good dr's out there.Dr. Urshel is a respected TOS dr. at Baylor U. A friend of mine had surgery with him a year ago. She had vascular issues, and was very happy with the surgery although she still has some nerve pain. I have also heard of Dr. Pearl too.

http://www.thoracicoutletsyndromes.com/index.html

http://www.ncbi.nlm.nih.gov/pmc/arti...c0020-0125.pdf

I also saw Dr. Ahn in L.A. He is known as a good surgeon,but i had a similar experience, he just asked me questions and didnt look at any records that I brought.He listened to my pulse and said I had arterial and venous symptms which 6 other dr's have said I dont have and I dont have any of those symptoms, so I dont necessarily trust him. He wants all his patients to do angiogram/angioplasty to determine which surgery he would want to do.

You may have to travel,but it will be worth it to find the right Dr. Call first and see if you can talk to the dr. before you go all the way to see them. Hopefully you can send your mris etc. and talk to them after. If you have cervical ribs it is much easier to diagnose and know which surgery to do. I beleive it is superclavicularly. I will look for some more articles to send you.

Good Luck and Keep us posted

Thanks, guys.
When I was first referred to Dr. Ahn, they mentioned that Dr. Pearl might be an option, too, but he didn't have an opening for something like six months, while Dr. Ahn was able to see me within three weeks. Seeing as I'd been unable to sit or stand without getting nauseous from the pain for the last week, when I looked Dr. Ahn up online and it all seemed okay, I took the quicker option.
I guess I just got so hopeful that I was going to finally see an expert and maybe there would at least be an end in sight, that when it didn't go well it was beyond disappointing. And then for the doctor I had been seeing, whom I'd told "Hey, this visit with Dr. Ahn didn't go well; what can we do now?" to have his nurse call me at 4:55 PM on Friday to basically say good-bye and good luck, well, that was just devastating. It was all I could do not to snap at well-meaning friends and relatives "Based on what, exactly?" when they tried to comfort me by saying, "Well, I'm sure it will get better; something will turn up." I don't want to be that person!
I live in a city with 3 major hospitals - they can do complicated orthopedics and brain surgeries and heart transplants, but they can't seem to get me any relief, and they all feel out of their depth now - the vascular guy thinks it's neurosurgery, the neurosurgeon thinks the orthopedist should deal with it b/c of the bone/muscle issue, the orthopedist says no way, that's totally a vascular thing - FRUSTRATING!
It really helps to know I'm not alone and that a lot of you have gotten relief. From reading through the archives, I know many of you have dealt with this for a lot longer than I (while I've had weird issues off and on all my life, all the TOS-related stuff came to a head about 3 years ago and has been constant since) and my heart goes out to each and every one of you. TOS is a nightmare.
Monday I will start making calls again. Maybe if Dr. Pearl is still backed up, Dr. Urshel will have an opening. Or at least maybe I can get on Dr. Pearl's schedule. Even that small amount of optimism is more than I could have managed yesterday!
For those of you who have gone out-of-state for surgery, were you able to do followups with a doctor at home? Or did you have to keep going back and forth?
I really appreciate the help and support. Again, thank you.

[the cervical ribs were noted three years ago]

I'm just surprised that with the cervical ribs showing, that none of the surgeons are comfortable suggesting surgery to remove them...
Unless they were all in over their skill set.

But you'd thinkk they could refer you to good resources..

A few of the California members flew to Denver to see Drs Brantigan and/or Annest for consult & then surgery.
There are now more skilled surgeons in CA.
Those are other options if you can't get into anyone in TX in a timely fashion, and if traveling is doable for you.

After so many years with sx and the increasing sx, I think surgery will be the path, I'm just totally amazed that none of those drs had any help for you..

Generally extra c ribs are a slam dunk...unless there are additoinal factors. Or they had no clue...

Well, three years ago, I had initially sought treatment for pain in my right shoulder and an inability to hold my shoulders evenly when horseback riding; after a few ineffective cortisone injections, my PCP thought I should get PT, so she took the radiographs before referring me. It was her opinion that the cervical ribs probably didn't have anything to do with it and sent me on to PT. My PT (who probably is the most on-the-ball professional I've seen in all this mess), after reviewing everything, said she was uncomfortable proceeding until I'd been assessed for TOS. So my PCP sent me to a vascular guy, who did U/S and Doppler and basically said "Yeah, when we move your arms or neck around we lose the pulse altogether, and technically that's TOS, but since it's easy to get it back when we move you back, I don't think it's really a problem. And if it is, we'd send you to PT before recommending surgery anyway." Neurogenic TOS wasn't even discussed at that point, and the vascular guy retired about six weeks later.

PT didn't really help, other than the cervical traction and the TENS therapy; this was when I started having concurrent pain in my neck, but I kept on with it for 6 months, and then I was out of the country for 5 weeks. When I came back, two weeks later I had an "event" - it may have been a TIA, or VBI, it was never definitively diagnosed - basically it was an event similar to a stroke and I was sent to the hospital from work in an ambulance, totally incoherent with double-vision, severe ataxia, deathly pallor, tachycardia - all of which resolved totally within 7 hours. I was given CT within the first hour and MRI 5 hours later, neither of which showed any lesions - as my neurologist said, the only difference between a TIA and a stroke is that the latter leaves visible damage in the brain - and I'm definitely grateful for that, but we never did get a definitive diagnosis. Thankfully, it's never happened again, although I have had two really severe prolonged episodes of vertigo that manifested in a similar manner initially. Naturally, this occupied my doctors' attentions for while, and none of them were keen to do much of anything to me therapeutically (for anything) until they had a better idea what happened, and it took them almost a year to finally say "Well, we've ruled out a bunch of horrible stuff, so even though we can't say for sure what it was, hopefully it was just a fluke thing that will never happen again." I guess in the midst of all this, the cervical ribs got forgotten, or maybe they'd just been entirely dismissed by this point.

By this time the pain in my neck and right shoulder were merged so they started looking at my neck a little more closely - more diagnostics and then nerve blocks. The second C4 nerve block actually helped quite a bit for awhile, but when the pain came back, the third one didn't. More drugs - cyclobenzaprine, Lyrica, Tramadol - plus antidepressants and anxiolytics, then drugs to combat the side effects of all of those. After my last MRI, they tried a C5-C6 nerve block, which did nothing. At this point I finally dug in my heels and pointed out the five thousand indications that this could be a neurogenic TOS and asked that they consider that possibility. Two doctors reviewed everything I'd had done up to that point and said it was very likely; the vascular doc that reviewed it was a bit startled that the first vascular dr had dismissed his findings so easily, and this was when we started playing musical doctors, and I've wondered if I wasn't going to have to start making death threats to actually get a referral to someone with more than a passing familiarity with TOS.

I wonder now if all of them weren't just hopping online, googling TOS, reading as far as "TOS is difficult to definitively diagnose and a conservative approach is recommended" and figuring that whatever they did fell within the recommended conservative approach. Dr. Ahn called them all incompetent and said it was obvious just looking at me and doing the touch-neck-lift-arm-exam that I needed more aggressive treatment - although looking at jkl626's post, I wonder if he doesn't say that to everyone...

So, I'm with you, I don't know if they all just had no clue or all felt out of their depth or what, but that's where we are...

I know Dr. Donahue has dealt with patients that have come from out of state. I believe there are/were a few users here that came to MA from afar to have surgery with him. Dr. Donahue himself did tell me that he has operated on patients from Alaska and Hawaii. I am currently living in Maine as I recover and he has been highly accessible via phone and email for follow up questions and concerns. I have even sent him photos of my incision and such when I was unable to get to the office.

I like the gal who mentioned going to Dr. Donahue. This may be an option. Please don't give up. Go out of state if you have to. I know from others the pain of TOS. I also know there is help for it, with the right kind of help in your life. If you could get a referral also as Jo* Mar recommended, that would get you to another physician. Also Mayo clinic, both in MN and in Fl, may be able to send you to the right folks. They are known for dianosis. Call the AMA and ask where to go also. Neuro Talk will be here for you in any way we can. I am just another little voice, to encourage you to keep going toward the day you can get real relief. I will keep you and other TOS patients in my thoughts and prayers. Nobody should have to be in pain all the time like that. ginnie