new to tos
 

Does anyone with tos have elbow and forearm problems? I have neck, shoulder, and chest pain, but the worst pain is in my arm especially the inner elbow area. It feels hyper sensitive and burning at times and then other days it feels like my forearm is tight.

elbow and forearm problems?

Yes, those were some of my main symptoms in 2003.

check out this thread on all our symptoms -
http://neurotalk.psychcentral.com/thread5618.html

Yes! I get the tightness right where you described. I used to have it really bad when my symptoms were at their worst.

Many of my symptoms including that one, came down significantly after I started propping up my symptomatic arm in order to take weight of the collar bone in hopes of reducing the compression of the thoracic outlet. Results have been great, although it's an annoying habit to keep up.

Also, the Egoscue stretches helped me with various pains, especially the forearm, shoulder and pec minor.

Also, I now treat all such pains as warning signs that I'm headed in the wrong direction. So when my inner forearm by the elbow gets tight, or anything else, I do something:

- Scan for muscle tension and release it.
- Get up and pace.
- Or was I already up? Then sit down and relax.
- Change/fix my posture.
- Self massage or stretch.
- Take a break of any kind.

I've also started taking Magnesium after reading "The Magnesium Miracle" due to people in this forum mentioning this supplement.

So those are some things you can try.

I just looked at your list and it was really helpful. I am in the process of looking for a diagnosis. i just went to the university of mich. hospital for some test and will meet with a vascular surgeon next week. I am frustrated because i have had so mant test: emg mri, x-rays, dopplers and they always come back normal with the exception of one of the dopplers. I am convinced that it is tos because everything else has been ruled out some i am hoping this appointment next week will confirm it or point me in the right direction. My question is that my biggest complaint is pain and burning and muscle tightness. especially in the arm, but everything i read seems to talk about numbness and problems with the pinky and ring finger which i dont have. Any thoughts?

I forgot to add, my forearms were being treated by PT (work comp), but nothing was really making a difference, only short term feel good from the massage, ultrasound ice etc.

They finally did a full upper body evaluation since I did have neck, shoulder & upper back tightness also...
Most of the arms & wrist sx were caused by the upper body tightness.
It was being transferred down into the arm.

Eventually got PT & chiropractic for upper body and many of the symptoms resolved.


I only had ring & pinkie sx for a very brief time - it only shows that that specific nerve is being affected.
elbow pain shows the ulnar is being affected.


What brought on your problems? Any ideas?
Desk work, repetitive, previous whiplash, long time poor posture???

Not really sure what brought on the problems. It was gradual but now the pain is constant. My posture is bad from being on the floor with kids. I am a speech therapist so I have down a lot of hunching over. Also I had been swimming for the past 6 years about 3 times a week and I'm wondering if that has brought this on. Do you have a diagnosis of tos and if so what type of dr. did you go to for the diagnosis. I am planning on waiting for my test results but i expect them to come back normal as always and then i was going to try a combo of chiro and pt. Do you know if you can have TOS but have normal test results (mri, emg etc.)?

those are helpful suggestions. Do you have a diagnosis of TOS and what type of dr. did you see? Also did your pain vary at all with location or intensity?

Titus,

Are you going to see Dr. Criado at U of M? He's the TOS guy there. He will take a long time with you and answer any/all questions. He does a very thorough evaluation. Did you get all the tests at U of M per his instructions? If not, there is a specific way he likes the CT to be done so you may have to repeat. He expects the EMG to be normal, so don't be surprised if it is. He also pays more attention to symptoms than test results. So if you are having symptoms he will go through them with you. Don't be concerned that you don't have the "classic" symptoms.

[Do you know if you can have TOS but have normal test results (mri, emg etc.)?]

Yes, it's one reason many drs don't know a lot about TOS - it doesn't have any specific test that will prove it easily and undeniably.:(

And a very good reason to seek out the best expert PT /DC / bodyworkers that you can find.

What kind of swimming laps with the same stroke style (very repetitive) or varied recreational swimming - lots of breaks and floating?

Swimming was very repetitive and did breast stroke but mostly front crawl/freestyle. Never realized you should rotate head to each side when doing the front crawl to breath. I always turned to the right and that is the side I have pain. I haven't swam in 6 mos. but nothing has gotten better. Thanks for the information.

I am going to see Dr. Criado next week and I am really hopeful. Did you see him? I have had all the testing he requested at U of M about 2 weeks ago including a CT with dye. I am really happy to hear that he pays more attention to symptoms than test results.

Yes, I saw him. He sees a lot of TOS patients.

Most everyone here seems to have had problems with pain. Although I'm glad to say that I have that portion of my problem mostly under control.

I think most or all of us have had muscle tightness too. I've improved, but still have much work to do.

The burning varies a lot between us. Some have mentioned it. I've had it maybe a few times total.

Remember that TOS is a syndrome and that it varies per person. I presume the variance is due to things like:

-- where is the compression?

-- are there are other coexisting health problems?

-- your individual body, nutrition, stress levels, posture, work day, etc.

So don't be alarmed about some variation between you and others.

Looking at additional posts in this thread, it sounds like you're seeing the right doc and getting on the path to a diagnosis which will of course lead to a treatment path.

1st doc --> ER --> undiagnosed

2nd doc --> cardiologist --> undiagnosed

3rd doc --> chiro --> TOS

4th doc --> chiro --> TOS & skull misalignment

I didn't know at the time I should have checked with a vascular specialist. You'd think the ER or cardio would have suggested it, but it was actually the 3rd chiro that did!

But I'm making progress with my current chiro who has also been treating various alignment problems. So combined with things I'm doing at home, that's my present course. Also, I have the Edgelow home PT system on order and looking forward to cracking open the DVD and "rib mobilizer" and seeing what that's all about.

I'm not that interested in having a vascular surgeon cut out my neck muscles and top rib, which is mostly what they do for this condition. Of course, you need to see one if you want a PT referral. And it sounds like you are seeing a good one, so you should follow through for all the Q&A, diagnosis, etc. which I'm sure you're doing.

Re: location and severity, the severity varied immensely with some days feeling very normal and other days just awful. Location varied somewhat too, but with certain spots being more frequently troublesome than others. Also, my problems are 90% on the left.

As my symptoms have declined, the variance in the location has declined as well with fewer spots giving me trouble.

HTH

short note for all-
This might be premature but fall & winter are around the corner...

Don't be surprised if when the weather changes you feel a bit worse.
The barometer changes & damp & cooler temperatures do affect us, just an FYI if you haven't heard of that before now.

Keep warm.

There's a solution for that called "Southern California". :D

Hi Titus - I'm not a swimmer but my Alexander Technique (AT) teacher showed me a book written by Steven Shaw who is an AT teacher and a swimmer. The book is called: The Art of Swimming by Steven Shaw and Armand d'Angour. I copied this from his website:

"Shaw Method applies the principles of Alexander Technique to swimming. Alexander Technique will teach you to use your body and mind without strain. Put simply, this is what Shaw Method also seeks to achieve, in the water.

Shaw Method teaches greater body awareness, strengthens the relationship between mind and body, promotes freedom of movement, and helps to prevent strain and injury.

Shaw Method is appropriate for you, whatever your ability. It is especially beneficial for: confidence building, the learning of new strokes, improving performance, enhancing the enjoyment of water, and if you are suffering or recovering from neck and back pain."

From what I've read, swimming can bring on TOS. However, maybe with some modifications that you could learn from this system, you could continue with swimming?? Just a thought. I know I would love to go back to the gym to do some real cardio but for now to keep my scalenes in check, I just walk. Anyhow, if you've never heard of AT, check it out. I'm not sure if you need to have some basic AT lessons first before you can apply them to swimming. I recently started with AT lessons and have had about 14 lessons. It has helped me become more aware of my body, the conscious and subconscious tension I hold, and has definitely helped with my posture. Good luck!

LOL - But I love Oregon, my dh was a CA guy , but he has adopted OR for life.
We gotta be around those big trees and green hills & blue skies:cool:

How did the appointment go, Titus?

results of appt.
 

My appointment went okay. My husband came with me and he thought it went well. I felt that it was really rushed and I felt very over whelmed with the diagnosis. Dr. Criado said I have TOS even though test came back normal and was recommending surgery. I wasn't expecting a surgery recommendation and I'm not sure I even understand what the surgery would entail. he described it as removing part of the first rib. Did you see him more than once before you had your surgery and did you have your rib removed. I thought he would be recommending something less drastic like physical therapy but he said physical therapy wouldn't help which really confused me. I am new to using a chat room, but is there anyway I could email you directly with some questions.

When you are up to it - possibly listing & describing your symptoms and avg pain level will give us more ideas for things you can do.

Unless you have something specific showing on imaging or tests, I would ask about (if you need a referral) or locate a highly skilled therapist
- maybe locate a few providers that your ins covers and ask for a referral to one of those.

I don't think I would go with the first recommendation of surgery...and only a part of the rib?? - I thought most take the whole rib now so the stump or cut ends doesn't cause problems later on... :confused:

I suggest you read thru our useful sticky thread - it is a like a crash course in TOS & many therapies.
http://neurotalk.psychcentral.com/thread84.html

What is your avg pain level in a day?
http://www.tipna.org/info/documents/...ePainScale.htm

Titus, I sent you a private message. When you log in your name will show up in the upper right corner and it shuld show the notification under that.

[QUOTE=Jo*mar;799132]When you are up to it - possibly listing & describing your symptoms and avg pain level will give us more ideas for things you can do.

Unless you have something specific showing on imaging or tests, I would ask about (if you need a referral) or locate a highly skilled therapist
- maybe locate a few providers that your ins covers and ask for a referral to one of those.

I don't think I would go with the first recommendation of surgery...and only a part of the rib?? - I thought most take the whole rib now so the stump or cut ends doesn't cause problems later on... :confused:



My main symptoms are arm pain in the inner part mostly bellow the elbow ans some slightly above. I feel more burning and tightness not numbness. I also have pain in the neck and shoulder (scapula and traps.). In the front part of my chest above and below collar bone it feels tender.

Average pain level is about a 6 but on bad days it is an 8. I'm confused about why some days are better than others. When I went to see the doctor I felt relief that someone believed me but at the same time i don't understand how they can diagnosis TOS on me when all of my tests came back normal? The surgeon was recommending surgery and was saying that physical therapy wouldn't help. I previously have tried pt 3 times but none of the therapist never really knew what they were treating because I never had a diagnosis. I am very confused and I think alot of what I read on line always seems to confuse me anymore. I just feel full of anxiety at his point and not sure what to do. I have seen some many dr.s (neuro, ortho, etc.) who can't find anything wrong with me and this vascular surgeon is the first person to give me an actual diagnosis. I just thought he would be able to give me a rec. for a knowledgeable pt but i was shocked to here about surgery. Again my biggest pain areas is my inner arm but arm problems with ulnar nerve, tendinitis have all been rules out by 3 orthos. Does anyone else have arm pain/ burning/tightness as the major complaint?

Titus: I have and do have all those symptoms. The intensity depends on the day, hour or minute. Like you, I was anxious and nervous with the not knowing what was wrong with me. When I got the dx of TOS, I felt relief but at the same time more anxiety and nervousness, because they said my case was so bad that I was a surgical candidate.

Fast forward a few years - I'm not anxious or nervous anymore. I've learned meditation and coping skills to get me through the tough times. TOS is fluid. Some days are better than others and a flare is just a flare. A new symptom you have today, may be gone tomorrow, or it may cling on for a few. Everything will change. It's just the way it is, for the good or the bad.

Words like what this surgeon told you use to hurt and make me nervous. Now, I realize it's just one opinion. It may be the wrong opinion and I don't need to act on it. With TOS, you will find countless opinions!

Jo-Mar is correct. Find a highly skilled physical therapist. If that one isn't working or you feel something isn't right, find another. You may burn through many during your journey. I'd also find another Doctor who can be part of your team. Suggesting surgery for a short evaluation and removing a portion of a rib? ---------run, run fast!

I know you said you have similar symptoms. Was your arm the worst along the ulnar nerve? I don't have numbness and range of motion is okay. It is hyper sensitive sometimes, achey the next and sometimes tight and cramp forearm. Also what should i look for in a pt and what type of exercise would i expect. Deep tissue and release techniques?

When I was looking for a PT on my own- one that would be very skilled & knowledgeable - I had been though a few rounds of PT already & had read lots of info online and on the forums too.
So I called a few places , but had the best results visiting the PT clinic or offices and asking questions.

Many PTs will take extra or advanced classes and get certified - so they will often have more letters after their name - same with DOs & DCs.

Ask what the extra letters mean if you don't know
Ask if they have studied or treat any special conditions - some study on their own and learn much but no special class or certification

I don't know if any of your other PTs did or talked about any of these-
resolving pain & symptoms - before any type strengthening ( therabands, weights )
fascia and how it plays a role
trigger points
spasms
delayed pain
top rib mobilization/check

posture & posture work is often important with TOS-

Just yesterday my niece was just saying her elbow was hurting quite a bit, she is tall & her shoulders roll forward & she has a desk job and toddlers.
I told her how poor posture & desk work can have an effect on the ulnar nerve - she had no idea about compressions above sending sx down the arm.
She only played tennis once or twice last spring for fun, she was thinking tennis elbow only.

There is what is called a double crush or triple crush -
that is TOS plus an actual ulnar nerve impingement and/or a carpal tunnel = but if so ulnar and/or carpal would show as positive on the emg/ncv testing.

If PT treats at the elbow and nothing much improves - then they have to look at the upper body for the causes - since your MRI is not showing any c spine issues it has to be somewhere in between the c spine & the elbow.
So the neck muscles, collarbones, top rib and pec minor would be the next places to explore.

My range of motion and grip strength is not an issue. I have problems, depending on the time, along all 3 nerves, ulnar, radial and median. The brunt of my issues would be in the neck, thoracic spine, diaphragm, clavicles and an area below my left clavicle. It all ranges from tingling, numbness, heaviness, deep boring pain, vaso-spams and mostly burning.

I did a quick count and I think I'm on my 11th PT. In CA, another TOS friend of mine, found a website which lists PT's credentials. Believe they need to be a member of an association. Like Jo-Mar said, my 11th one had taken classes and levels of education that filled the chart. She specialized in Visceral Manipulation and Myofascial Release.

I've been with her for over a year and I'm going to prove those surgeons wrong. My rib and scalenes don't need to be cut out of me. If I can find the link, I'll see if they have something similar in Michigan.