New to TOS
 

Hey all,

I'm a 26 year old female looking for some advice in regards to TOS. I've been having intense chest pain for about six months now, it began in my right pec minor and then proceeded to radiate across my chest, arms, neck, shoulder, and back. My doctor is treating me for fibromyalgia, but neither SSRI's or tricyclic antidepressants have proved effective. I began seeing a chiropractor two months ago who mentioned TOS to me, but the Rheumatologist and Orthopedist both said that I either did not have TOS or said it was a condition that did not exist.

I began physical therapy last week but I've been stretching and exercising regularly on my own accord for nearly two months. I take vitamin D, B6, Chaste Tree Berry, Evening Primrose Oil, and Boswellia but I cannot control the compression/inflammation. I have yet to have an MRI ordered, I figure that my doctor is trying to avoid it. I am currently taking 20 mg of Amitriptyline and sleeping for nearly 12 hours a night. I wake up sore, I feel hungover, my mood is quite low and I'm depressed & listless.

The pain is constant, every second of every minute of every day. I travel for my work, and I've been out of commission for almost three months. How aggressive should I be with my doctor in regards to my chronic pains? I feel as if the specialists have dismissed my condition as hysteria, or have painted me as a hypochondriac. I have read quite a bit about pec minor release surgery, but has anyone had any good experiences with pain management techniques that do not require surgery?

Looking for some advice - thank you for your time -
MP

Can you make a basic list of your symptoms? we might have ideas to help with some of them.

What kind of things is PT doing for you?
*weights, hand bikes & bands are not good until pain & sx are way down.

Did PT do an in depth evaluation?
any mention of trigger points or spasms? If spasms there are most likely TrPs present.
muscle imbalances?

Have they done any xrays yet , just to verify any anomalies or c spine issues?

Some basic things to do at home a few times a day - of course if anything increases pain or sx stop
also the yoga corspe pose is very good to start & relax with

http://neurotalk.psychcentral.com/pi...pictureid=5399

lay on foam roll or large towels rolled up tightly - pillow if needed for neck comfort - then just relax with arms at a comfortable position
http://neurotalk.psychcentral.com/pi...pictureid=5400

@ Jo*mar my PT told me that I 'tested positive' for TOS, and that all of trigger points 'responded' (forgive me, I'm new to all of this so I hope I'm using the correct terminology). When I go into PT, they apply heat, make an attempt to 'release' the muscles, then I stretch with some elastic bands, a cane, etc. Nothing particularly intense. I have had a cervical spine & chest x-ray done, the orthopedist I saw said that he has 'never seen or treated' anyone with TOS, and seemed skeptical of the syndrome's existence all together.

My day to day pain changes regardless of my previous days worth of activity. I do not feel weak but pushing/pulling open doors, lifting objects, and getting out of bed come with great difficulty. The most pain comes when I push my shoulders towards the ground (while standing) I feel as if my thoracic cavity is being filled with knives. Pec minor is the worst.

I am looking to make a recovery of sorts - I am a working musician and I would very much like to return to touring, wearing my guitar, and playing. I am still quite young (26) and haven't had any serious medical problems until now. I exercise regularly, stretch three times a day for 15 min or more, and eat a well-balanced diet.

The pain is becoming intolerable and my GP isn't helping me get back on my feet. It's been months and months, my calls are falling on deaf ears! Help! :confused:

A disease requiring knowledgeable treatment
 

When a GP isn't responsive, my first thought is to move on to another doctor who is. TOS deserves to be taken seriously and you are worth seeking treatment from a knowledgeable professional.

And a good primary doctor is - my definition
 

A good primary doctor is one that, when he doesn't understand your condition, at least refers you to someone who does. TOS requires specialists, usually more than one. Not to sound discouraging at all but it's a process. I was DX'd this year so I'm new to it all. Good luck to you, though.

musicians & RSI- search results -
http://duckduckgo.com/?q=musicians+%26+RSI

also our useful sticky thread has so much info that it is a great place to get a crash course on TOS, therapies and such.
http://neurotalk.psychcentral.com/thread84.html

Sorry to hear about the pain you're in. Most Dr's dont know anything about TOS. Vascular doctors do (some much more than others).
Try to find a chiro who knows how to adjust the first rib ---- not your neck, just the first rib. Mine has me lay on my back, turn my head to the opposite side, and presses down on the clavicle area, and ---- crunch, crunch, crunch. It provides good relief for 3-4 days. It keeps coming back because the neck muscles are tight. So tight that they have caused bone spurs on my cervical vertebrae (the chiro took an x-ray of my neck and saw this).

Some TOS docs do a CT scan and others like an MRA. These are specialized and are not easy to get (at least for me). If these exams show anything and you get relief from a good 1st rib adjustment --- TOS might be going on. You might want to try botox injexns to the scalenes/neck muscles around the time of the rib adjustment.
Ultimately, it sounds like you need to see some different docs. This site has a list of good docs to see. TOS is very complicated and the right Dr is very impt. Good luck.

Dear MP, let us know what area in the country you live in and we can point you to lists of TOS dr's and PT's. the first step is finding a good pain mangement dr and a pt that is familiar with TOS. Rib mobilization and soft tissue massage and trigger point therapy has helped me, but am still trying to find lasting releif. Here are some helpful lists:
http://www.instituteofphysicalart.com/ipa/referral/list
http://surgerydept.wustl.edu/TOS_Consortium.aspx

If you're interested in trying supplements; these have helped me: pqq, sulforaphane (broccoli sprout extract), and reduced glutathione.

I am located in central NJ. About a week ago my left hand went completely numb. It's been numb ever since, and it seems to be getting worse. Going to see a neurologist tomorrow.

Definitely go to the neurologist to see what's up, but don't be surprised if you do have NTOS if they don't find anything or tell you that NTOS doesn't exist. The "proper" specialist is a Vascular Surgeon and in some cases, a Thoracic Surgeon. Before you book an appointment with one, make sure to talk to their nurse and ask if they are familiar with TOS at all and how many people they see with it. Check out the featured post for a list of doctors in your area. It is not at all uncommon to have a completely normal EMG/Nerve Conduction Study with NTOS and for them to not find anything causing your symptoms. Best of luck to you and I hope your hand feels better soon!

Also check into the TOS center of New Jersey.
http://www.tosnj.com/Index.html

its PT and strengthening but it sounds like they have a good program. If you do let me know, I am interested in checking it out when I visit family in N.Y. You still need a real diagnosis though. For me the scalene block injection and the physical exam from 3 different dr's is what made it fairly conclusive for me although I also have a bulging disc and bone spurs.