Is anyone form CT or do you know of anyone with TOS is CT. I just went to my 3rd Vascular Specialist.

1st:Absolutely TOS need to take out your rib

2nd: not so sure it's TOS go to Neurosurgeon. (He couldn't get rid of me fast enough)

neurosurgeon said Def. TOS and referred me back to the 2nd's partner

3rd Vascular Specialist absolutely TOS, here's a script for PT for 6 mos, and no rib removal that's that last resort. No meds, no mention of restrictions, just the office shuffle.

It's strange how many Dr's tiptoe around the topic. I've had 5 surgeries R carpal tunnel and cubital tunnel done twice and the left hand carpel tunnel once.

I quit my job as a dental hygienist after 16 years, went back for my MMI and I was given a rating of 2 (for the redo)vs the 5, I had for the first surgery ( hand and arm from 5 to 2???Must be superman? W/C still open from 2000, Need the specialist to say it's from Dental hygiene, now pardon the pun but it 's been like pulling teeth. Wondering if I go to the one recc on the forum here if I have a better chance of being heard...please help.

Well at least you had some dr actually say the word TOS - mine never did- just the PTs and chiro.

What is your avg daily pain level and what activities are you able to do in general?

This is how I would break it down to help me decide if I wanted/needed to do surgery or not.

Plus I would want to know exactly what my compressions were from before any dr starts any surgery.

Is it a scalene issue, Pec minor issue, top rib clavicle isssue?
and is the vascular part of it OK or mild or serious?
as in nerves vs vascular issues ?

I would do the proper TOS PT and bodywork, posture and totally focus on it, nutrition/supplements maybe a bit of chiropractic if you have any chance that alignment is off { MVA, sports injury, falls... etc}.

Thanks for your reply.

I guess I still don't know enough about TOS to even know what to ask while I'm in the DR. office. Is there a list of questions to ask the specilaist somewhere out here in cybespace? I think that would help with the appts.

I've ased for restrictions at 3 DR's., talk over me:I guess I should plant myself until I get some answers.

This is a lot to take in, I know it is overwhelming - especially when you're in pain. If you keep reading (look at the stickies at the top of the forum and keep an eye out for links thrown up on some of the posts; you will find some good info here - also google or other search engines can help you research the medical literature), it will start to sink in and make sense. Promise! Ask questions here, none too big or small, we are here to help you.

The resistance you are sensing may have to do with the fact that TOS is still mired in controversy, from diagnosis to treatment. Add w/c and litigation to that medical mix and you've got a lot of defensive posturing going on. Try not to let it affect you; it has nothing to do with you. And we are a "difficult patient population," meaning hard to treat (not our fault) - doctors don't like cases like that!

Whether the surgeon's delivery was the most warm and personable or not, he actually did the right thing by prescribing a 6-month course of PT for you. The real trick is in finding the right kind of PT, and hopefully if his office is not helping you to do just that others here will chime in with some suggestions. Use the search function to find some previous threads on this topic.

As far as meds go, I would not look to a "cutter" for those - not their job and they suck at it anyway! No, what you want is a reputable pain management specialist. It is no irony that a decent PT outfit in your area can direct you towards a good pain clinic, and vice versa - they tend to know each other's patients (and to rub each other's backs) (pun intended). I say clinic because if you are in a large enough area, you may just hit the jackpot and be able to find a pain doc, a pain psychologist and a PT all in the same venue.

Are you near a large teaching hospital? Might be a place to start. Many find having a good neurologist on their treatment team to be helpful. Just be sure that whomever you choose (you! you are in charge here, and you can fire these yokels if they are not meeting your needs) "believes" that TOS is a valid diagnosis, is experienced in its treatment and connected to other medical professionals specializing in that area.

This is a difficult thing you are going through and it's going to be hard, no impossible for family and friends to "get it" - making it even more frustrating. Perhaps you have already started to experience this - please try to understand, it is not personal and it does not mean they don't love you. Just part of the TOS monster I'm afraid (and chronic pain in general). But we are here for you - stay close! Ask any questions you have, and as you start to get a handle on this thing your perception will begin to change.

Believe me, you don't want to rush into having surgery for this. Take it from someone who has had it - well, it doesn't get you out of PT, for one thing! (smile) But seriously, it's been said before this is a risky operation and not like taking an appendix out and then the patient is "all better" - no, it is not that simple. It is premature in your case to even consider it.

Now is the time for learning, for PT, maybe some pain meds. You need a treatment team and a support team. Check out the Workers Comp forum for the legal stuff and let's not forget the legal team! I am sure I've read somewhere in the literature that people in your former profession can be stricken with TOS, it's work-related. Not sure how that works if you quit, but that's for a w/c attorney to sort out for you. If you can, try to put it in their hands and let them stress about it, you worry about healing for now.

My name is Alison and I am an ex-Conn!

Thank you Alison! I'm going to start to do some research and gather some questions I need answers to.

I like that ex-conn thing. funny

Hi,
I don't post here often due to time constraints and the repetitiveness of the computer. I was a hygienist for 14 years before being froced to retire because of TOS. 4 surgeries later and a bachelors degree and almost a masters, I am working in a new field.
I sent you a PM on how to contact me if you want fore information.
Take care.

A former "cleaning lady"
Linda