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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

My Husband & TOS

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Old 02-06-2017, 02:28 PM   #1
r8ch34l
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Default My Husband & TOS

In october 2015 my husband began having problems with his right arm. He had pain off and on and one day while working(Cracker Barrel Grill cook, lots of overhead reaching and repetition) his arm turned really red with lots of pain and pressure. I took him home and overnight he had a bulge appear in his upper arm and the next day we went to the doctor. He was diagnosed with a Blood Clot in his subclavian-axillary vein which they gave him a $700 shot to break it up. He was told to keep his arm elevated, so for the entire weekend he did just that(which was a terrible idea) and had no relief. He was referred to a specialist at because the doctor had no idea why he would have this clot form and how irregular it is. The specialist told us that she knew he had thoracic outlet syndrome and only sees it about 4 times a year, very rare. She was going to refer him to a surgeon for TOS, but he did not have insurance at the time which made things very difficult. For 6 months we waited to find someone that would/could see him. After calling many different hospitals to no avail, we finally got in touch with Barnes-Jewish Hospital in St. Louis. One of Dr. Thompson's team members, Dr. Vermeri, is who we saw and he was great. From day one he knew the answers to all our questions and we were scheduled for surgery in April.

By now my husband(boyfriend at the time) had been out of work for some time and qualified for Illinois medicaid. After many phone calls we finally got them to approve the surgery and 90 days of treatment through Dr. Vermeri under continuity of care. And once the surgery was performed, the insurance really had no choice but to approve all follow ups pertaining to the surgery.

He had surgery to remove his first rib on the right side along with 3 scalene muscles and while it was no fun, it is exactly what everyone else describes. lots of medication, lots of pain, lots of waiting. for all follow-ups, his recovery seemed to be going well. His initial problems subsided but he still experienced pain in the surgical area which was to be expected.

Where we ran into problems was with insurance and physical therapy. At first, the insurance and approved physical therapy, and then went back and forth trying to get out of it. Basically, he was able to receive the therapy from a local hospital at first 2-3 times a week for just a few weeks, then insurance said they wouldn't pay anymore, although he really needed somewhere close to 6 months of therapy. Every time he would start to slightly improve, the therapists were fighting our insurance again. So after a few weeks, he wouldn't have therapy for 2-3 weeks, then he would for a week, and then not again. So when he would go back, he had regressed each time and it was like starting over because he was unable to get continuous treatment. He hadn't even gotten to the point where he could lift a gallon of milk above his head and the therapy stopped completely.

Our biggest fear, as it had been explained to us, was that the physical therapy is the most crucial part of this process. After surgery, as the scar tissue is forming, the therapy helps it to form loosely so that it is not restricting his movement or ability to use that arm. Also, if this does not happen, the scar tissue can form tight as it fills up the room that was created during surgery and could potentially cause the same TOS symptoms he experienced before surgery. For over a year he was out of work and when he finally returned he was extremely limited to light duty with a maximum of 4 hour shifts only a couple days a week. After a few months, this was shown to be too much for him as he began to have similar pain in his left arm due to overcompensation. When this began, we were both scared of having this occur in the other side, so he went on leave and eventually found other work that wasn't as demanding on him physically with no overhead repetition or lifting. He was still limited to 25 hours a week and short shifts because anything for too long was too much for the right arm. It is very weak and still has pain most days.

Now it has been almost 2 years since surgery and he has been in a lot of pain with that same right arm. He describes the pain to be just like it was before surgery, which is very different from the surgical pain he has experienced since. He feels that he may have another blood clot. We now live in Lexington, KY and have a doctor appt. for friday with a new Primary Care Physician. We are hoping she will be able to refer us to a specialist but fear there are no doctors anywhere nearby that will be experienced with this problem. Although it is far away, I would prefer to go back to Barnes-Jewish Hospital, but also fear the insurance will not cover it this time. And Dr. Vermeri is no longer with them, as he relocated.

Im really glad i found this forum because it does give us hope that there are others out there that understand this struggle. If anyone has insight on doctors, similar experiences, or recurrence, Please feel free to share! Just as before, we are just going through the motions with no real expectations. With such a rare problem, it is so hard to find helpful information. Thanks for reading our story.
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Old 02-06-2017, 04:47 PM   #2
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Could also be a minor nerve issue, or pec minor issue.

I'm curious what types of things PT was doing or having him do?
*weights/strengthening - poor PT can often be a bad thing for TOS..*
some PTs are much better assessing what needs are than others..and how to proceed without worsening.

Some home care ideas..
Sharon Butler - Repetitive Strain Injury (gentle stretching /fascia info)
Trigger point release - can do self w/ tennis ball or similar - a wall or floor works
far infra-red heating pad
someone that does low level laser/cold laser/soft laser (same thing but called by all those names.). check /call & ask @ chiro or PT places..if interested in soft laser & IF stim
ultrasound can be used to help with some scarring & soft tissue healing.

corpse pose /relaxation on floor
opposite position stretches -- arms are usually forward of body most of the day - so place them behind and hold 30 sec many times a day don't force it tho..


TOS sticky threads-
Trigger point information {TrPs} for short
Our Useful Links - Websites, Articles & Polls
DOCTORS & PTs List and saved PT info threads
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Old 02-06-2017, 05:41 PM   #3
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well the problem is mostly that he didn't get to do much PT at all because of insurance. He had stretchy bands of different colors/resistance that he was using and going up each week. He hadn't really gotten to much of the strength part. this was pretty soon after surgery so a lot of it was just getting him to be able to lift the arm and move it around. some posturing exercises, i believe. They were in contact with the PT people from Barnes-Jewish Hospital that specialize in TOS and were doing whatever they told them to. The little bit of PT he had seemed to be going well. He was progressing well but then the insurance literally told us that "he should be better by now" because they had no idea what TOS even is. after just a few weeks they stopped it and after about 3 more weeks we finally got it approved again. So as you can imagine that 3 weeks without PT meant little to no progress. And that happened about 2 or 3 more times so after those intervals of no PT results were small.

Thanks for the home care ideas. I will pass this info on to him.
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Old 02-07-2017, 07:40 AM   #4
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I went to Dr. Thompson as well and am in the same situation. Still experiencing pain from the surgery and all the complications prior to the surgery. Interestingly, I just moved to Louisville KY so I am not too far from you in Lexington. Dr. Erdogan Atasoy is the only physician that treats TOS that I know of in the area....He actually retired but look him up - I believe someone took over for him and is knowledgable on TOS.
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Old 02-11-2017, 11:58 AM   #5
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Hi, your husband should continue his PT for strengthening on his own at home.

As far as scar tissue goes, look up chinese cupping, scraping, rolfing and graston. You can help do these things to him. Massage will probably help a lot too, so will warm water exercise and/or hot tubs. Heating pads and/or ice should help.

Physical therapists are kind of stupid and often give up on us anyway, so it's not really the end of the world. I had a physical therapist break my 2nd rib after my surgery.

Your husband should consider stopping work and applying for disability. I read somewhere that people without surgery with ATOS have an 85% chance of having a stroke. The fact that he is always in pain and isn't getting any better it is really bad that he keeps pushing himself with regard to work. I was approved for disability, I hired an attorney, it took 1 1/2 years. Actually having a blood clot form ATOS is extremely rare.
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Old 02-13-2017, 02:24 PM   #6
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Quote:
Originally Posted by shug2003 View Post
I went to Dr. Thompson as well and am in the same situation. Still experiencing pain from the surgery and all the complications prior to the surgery. Interestingly, I just moved to Louisville KY so I am not too far from you in Lexington. Dr. Erdogan Atasoy is the only physician that treats TOS that I know of in the area....He actually retired but look him up - I believe someone took over for him and is knowledgable on TOS.


when was your surgery? and did you have NTOS or VTOS?
Thanks for that info. As of friday, we saw a PCP and they found someone here at UK that says they deal with TOS. We are waiting to hear from them to set up an appt. We will hopefully see whats going on soon enough. Once I get his info I will post it for people to know in the area.
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Old 02-13-2017, 02:33 PM   #7
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Eight, thanks for your response. We have looked into disability some and in this state there is only complete disability, no partial. Which means you are right, he would have to stop working altogether. Financially, we cannot afford to do that or to get an attorney or even wait for all of that to play out. On the other hand, i feel that it would be difficult because there are jobs that don't require overhead repetition and/or heavy lifting such as computer jobs. I think he would be able to do something like that, its just a matter of finding one that works with our schedule. He is also a musician manager, and in order to file for disability he would have to quit that too, which will never happen and he's able to do that work with no limitations. So honestly, he's not completely disabled, and I'm not one to try and cheat the system. There are people way worse off that need it more. I do agree that he shouldn't push himself to do more than he should. I have been pressuring him a lot to change jobs, and the management thing seems to be opening up more opportunities as time goes on. I can only hope it continues to and we can find help for him so that he isn't in pain anymore and stop all his worrying.
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Old 12-07-2017, 02:59 PM   #8
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Quote:
Originally Posted by r8ch34l View Post
when was your surgery? and did you have NTOS or VTOS?
Thanks for that info. As of friday, we saw a PCP and they found someone here at UK that says they deal with TOS. We are waiting to hear from them to set up an appt. We will hopefully see whats going on soon enough. Once I get his info I will post it for people to know in the area.

Sorry for the late reply...I had surgery for NTOS in July, 2013. How did it go with the Physician at UK who deals with TOS? I moved to Lex a month ago so may go check that doc out.
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Old 12-07-2017, 03:39 PM   #9
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Did you check on SSDI ? It is a federal government program.
We have a SSDI forum if you want to explore that & the sticky threads there for more info.
https://www.neurotalk.org/forum28/

I believe there is partial or % ratings , and also you can earn under certain amounts or do a return to work program..
Most suggest doing a self application online ( of course only if the requirements do fit) and if that is denied then an atty can be used for appeals.
It doesn’t need to be a forever thing. if he improves with time off /or part time work he can return to full work..
*just a quick synopsis of my reading there*

* do a site search for - scar tissue ( it can occur inside the body after all the trauma - some people have much more issues due to it.. )
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