Hello all, first post so I'll start with an introduction.

About 4 years ago I start getting RSI like symptoms on the right side of my body. My back would ache all the way up to the right side of my neck. my right arm would tingle and burn and I'd find it hard to sit in front of the computer or play piano for more than 10 minutes at a time. Anyways, so, I didn't go to a doctor about it. Part of why that is, I read a lot of books about RSI and it seemed there was a lot of unnecessary surgeries and such. I would up just trying to eat healthier and exercise more. I took up swimming for a while. I do bikram yoga now, which may or may not be good for TOS.

Shoot ahead 4 years... I recently said enough is enough. My symptoms havent worsened over the years. Its more of a day to day thing... somedays its manageable, others I cant do much more than lie in bed. So, first I went to a homeopathic doctor which turned out to not be the solution I was happy with. He just put me on a really restricted diet and charged me a fortune. After 3 weeks of the 6 week diet I decided I'd better see an RSI specialist. Not really sure of my type of RSI, but confident that my symptoms sort of matched TOS, I called up a thoracic surgeon in my area. I went in and talked to him and he did a few tests. The most notable was that I held up my right arm and it produced a lack of color or something similar. He sent me to see a neurologist, too, and Im waiting to hear back from him.... The thoracic doctor also gave me a prescription for a MRI and xray. My insurance won't cover it [Im unemployed, but my parents got me insurance about a year ago]... so, I'm stuck with the bill, which will be about $800.

What I'm wondering is if I jumped the gun to quick by seeing this thoracic doctor. I dont have a primary care physician because I just moved to Santa Ana and my old one is far away. The thoracic doctor I'm seeing seems.... well, uninterested and detached from my problems. I felt like I was talking to a wall when I was at my last appointment. He didn't do what I felt was a very thorough analysis. It didn't seem like he really gave a damn. I feel very suspicious in that I am worried he'll just end up recommending surgery which is probably the last thing I'm willing to try [Ive read too many horror stories]...

I'm taking Alexander Technique classes for 2 weeks now. I want to start with a physical therapist... maybe myofascial release or cranio sacral therapy. I think I can get fixed without surgery. Ive experienced moments of "no pain"... if that makes sense. I also notice relaxing and sometimes talking about things that stress me out seem to help my symptoms quite a lot... so that's the whole mind/body or fibromyalgia side of things.

I'm confused. I'm not sure if I should go through with the MRI/Xray or not or if I should use what little money I have to see a PT and posture specialist. Any recommendations or advice would be very appreciated.

thank you,
James

welcome to NeuroTalk, James

things are often quiet here at weekends and early mornings, and so I know the members of this forum will be along soon to respond to your post

all the best

James, there are alot of TOS'rs on this site from CA who can give you info on good doctors to see. I saw a neurologist before a thoracic surgeon. I did have surgery in 2000. I was pain free for 6 years and now a flare up from my own doing. This site can offer alot of information. I am not as knowledgable as everyone else here but you have come to the right place. I'm sure you will get some good advice.

Linda

1. Find a good neurologist in your area. The board has a list. If need be and you can, travel to one that may be a bit farther. It may be worth it.
2. Ask questions of the doctor. He/she is there for YOU. Be proactive. This is a learning experience. You need to understand YOUR situation before you can get help or knowingly consider the treatment options offered.
3. If Physical Therapy is prescribed, ask about the goals of that PT. Again, be proactive and ask questions. You want to understand ALL that your situation entails.
4. Get an anatomy book. Look at the pictures of the structures and tissues in YOUR situation. Find out and learn how they are all interrelated and IF and HOW they may impact YOUR situation.
5. Pay VERY CLOSE attention to your day to day activities. You'd be amazed at something as simple as reaching for a comb may bring all sorts of problems. It may not be the act of reaching, but it may be the WAY in which you are reaching. It is that detail oriented, IMHO.
6. Do not assume that you aren't doing anything to cause this. You may not be, then again, it may be just normal everyday simple tasks. Some things can be corrected and some may not be able to be corrected. Try to understand and know the difference.
7. Know that there is good pain and bad pain. Understand and learn the difference.
8. Try to understand what YOUR pain is trying to tell you IF it is trying to tell you something. Know that in many instances your pain may not be an immediate response to an action but may surface several hours after the aggravating event/activity.
9. Read the posts and thread on this forum. Know that some of it may help you and some may not. We are EACH unique and different. We each have some things in common but what therapy works for one, may not work for another. Hence the comment to get to know YOUR unique anatomy and YOUR unique situation.
10. There are many modalities that have helped people on this forum and many of us are seeking others in an attempt to get cured/relief. Some that have been expressed are: Stretching, exercise, aeorbics, swimming, massasge, acupuncture, chiropractic, ART, Yoga, Hot tubs, Ice packs, and many, many others. There is a list or two on this forum. Check it out.
11. Know that professionals are there to HELP you (if you find competent ones) and that it is a TEAM effort. They are not in YOUR body and thus need YOUR assistance to help you and you need their expertise to help you.

Good luck.

A neurologist is often the primary treating doctor for TOS and will probably give you more attention on office visits.

there are several good ones in LA- check out the doctors list.

TOS will not show up on a normal MRI- so unless you are trying to rule out cervical disc problems, i would skip it.

Dr Jordan does a very nice ultrasound- with or without a scalene block to very accurately diagnose TOS. The ultrasound itself is not all that expensive, and you can Check on the charges for the scalene block (i don't remember, sorry) but it is definitive and might be a lot more efficient route to travel than seeing many docs who don't care or another doc who would send you for the $12000 MRI/MRA that dr collins does. If your insurance won't cover a regular MRI i doubt they'd cover that sucker.

best to get it figured out so you can figure out how to get better. I think Olecyn is in your direction and has found a PT that she likes- maybe she could offer up a name.

Just want to extend a warm welcome!

It looks as though you've already been given excellent advice. Off the top of my head, not sure I have lots to add, except that maybe the xray would be in order to rule out cervical ribs? (Then again, maybe not absolutely necessary if you were to get a definitive scalene block....I guess Dr. Jordan or whoever could make that judgment.)

If it turns out you can't afford PT, maybe another possibility would be Sharon Butler's downloadable (Hellerwork) thoracic outlet self-care program. I think it's only $29:

http://www.selfcare4rsi.com/thoracic...-syndrome.html

Had to smile/nod my head at your description of the "uninterested, detached" doc....Heck, I think I've seen that guy myself. Seriously, I think many of us had had similar experiences.

Best of luck, and keep us posted.

Well, I still feel confused. The thoracic doc I went to did send me to a neurologist. I haven't called him [thoracic] back because I am unsure if I need an MRI. An xray seems more justified, but, indeed my prescription says MRI of Cspine [cervical?]...

Alexander classes are interesting. I'm not entirely happy with my first two but I'll stick with it. I'd rather find a good myofascial physical therapist in the Santa Ana area then spend $800 for a MRI...

I'm not sure what to do right now. I can type. I can get through the head. Theres a dull aching pain in my chest, neck and a burn in my arm but its manageable. I want things to get better, I don't like the idea of waiting another 4 years to get this fixed...

So, thank you all for the advice. I think physical therapy might be my next best bet, unless I decide to put some faith in the thoracic surgeon I saw.... sigh.

A good PT who can get you going in the right direction can be very useful- you can then do as much as possible on your own and see them 1-2 times a week for help. It will be cost effective that way. It is useful to rule out cervical spine issues- hence probably the order for the MRI, but if you can find relife with the PT first, you may not need it.

It is somewhat of a gamble either way...if only we all had infinite time and money.

If it is not too much to ask, why will your ins not cover the MRI? Seems perfectly reasonable.

Quote:

Originally Posted by jaldridge6 Well, I still feel confused. The thoracic doc I went to did send me to a neurologist. I haven't called him [thoracic] back because I am unsure if I need an MRI. An xray seems more justified, but, indeed my prescription says MRI of Cspine [cervical?]... Alexander classes are interesting. I'm not entirely happy with my first two but I'll stick with it. I'd rather find a good myofascial physical therapist in the Santa Ana area then spend $800 for a MRI... I'm not sure what to do right now. I can type. I can get through the head. Theres a dull aching pain in my chest, neck and a burn in my arm but its manageable. I want things to get better, I don't like the idea of waiting another 4 years to get this fixed... So, thank you all for the advice. I think physical therapy might be my next best bet, unless I decide to put some faith in the thoracic surgeon I saw.... sigh.

Hi and welcome,
Testing is done not to diagx TOS but to rule out other diagx. An MRI can show if there are cervical issues as herniations that can be contributing to the symptoms. BUT, many friends I made here had prior cervical surgery, they needed it, but still had the TOS symptoms too. I have left side cervical herniations, but my TOS affected side is the right where I sustained a stretch injury to my arm…like a zinger if you ever played football.

Even a person above 20;s will show degeneration and bulging in disc height...But, EMG/NVC testing is not always helpful either. This test is better in late victims. The first nerves in tos to have symptoms are the smaller sensory nerves these nerves can not be tested by EMG. The ENG is testing larger nerves that make muscles move...these are only affected late stages or severe TOS.

I never had surgery; my daughter was severe and had two. The second, to help clean up the scar matter that was entwining on her cervical nerves.

TOS surgery is not a cure it is a help. If is an attempt to free up compression of vascular and neuro bundles behind the collar bone and in front of the first rib.

In your case...I would be aggressive and really not rely on pt first. WHY. There are several scenarios’ that cause the symptoms you describe. I had one friend from Australia on here and had a pan coastal tumor or cyst that caused the symptoms. I was on Discovery channel a man I thought for sure had toS, He actually had a tumor near the heart for many years, it was attaching to the chest wall, collar bone, thoracic outlet area and heart. It had almost calcified by the time it was found and had to be removed.

There are other things too like a chest wall irritation, a costalclavicular irritation, activity induced, anomalies induced. You may have some fibrous band causing spasms and burning pain.

But a regular thoracic doctor will often never see a tos in his career. We have a top neuro in ouor area and treating a MS patient, but will not touch her TOS.....
When you look at the list, I think as they said the doctors seen in CA are tops in their field.

Get a good diagx and recommendation.
Di

DiMarie: the doctor said he thinks I might have TOS after only 10 minutes and a few questions. He didn't even do a physical examination of me besides gently poking my back for painful spots and making me raise my arms. That's why I am suspicious of him. He was recommended to me from the UCLA TOS department [i found the number for it on the LA RSI group]....

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johannakat:

Insurance won't cover it because I have a $5000 deductible. Up until then, I think they only cover office visits, some labwork, and medication....