Folks,

I was diagnosed with TOS about 3-4 years ago. Primary symptom was a "burning" pain that was located around the scapula on my right side. Went to Dr. Dean Michael Donahue at Mass General and got scans that showed that the subclavian artery was being pinched by the scalenes...on both sides. I had a botox shot that cleared everything up and I haven't heard from TOS on my right side since.

Now, I've had three different episodes in the past year on my left side.

I think.

The first was about a year ago, but passed within a week. The 2nd was over the summer and lasted for a good couple of months. And now most recently the third.

Major malfunction: When I tilt my head back and to the left I feel a pain. This pain runs over the back of the shoulder and down to the forearm / top of my hand. The worst part is that the forearm / hand area just throbs to the point that it makes sleep very very difficult. There's also a lot of twitching in the chest area. And my tricep muscle has lost strength.

FYI: I've had a cervical MRI that was clean.

I'm scheduled to see Dr. Donahue on January 15th, but that feels like an eternity. I'm stretching my scalenes like crazy and also trying to mobilize my first rib myself. Also trying to practice diaphramic breathing again. Taking advil (that doesn't do a lick) and also have some leftover gabepentin (sp?) nerve medication I had from before, but am loathe to use.

First, I'm curious if the forearm/top of hand throbbing is something others have experienced and is consistent with TOS? This is not the burning pain I had before.

Second, any other recommendations to slow down the symptoms? To be honest, I can deal with the pain, but I need some SLEEP!

Thanks.

KY

Hi KY,

Just sent you a private message.

Hello and sorry to hear about the return of your symptoms.

Yes, I do have forearm throbbing and burning at the same time. For a while I was convinced there was a claw ripping at my muscles hidden somewhere in there.

So the temporary solution could be as simple as Botox? I have a nerve test on the 6th and more and more tests, I just want some treatment already.

Yeah, the botox shot worked like a charm for the left side a couple years ago. My right side hasn't barked since. I think it's something about the scalene muscles...once they get agitated it's hard to get them relaxed.

One thing that I used to do was lay on my back on a swiss ball and practice diaphramic breathing while having my arms stretched out to the side and relaxed and my head hanging back on the ball. Tried to do it but when I title my head back the pain is triggered. That's what I don't get. Why would tilting my head backwards agitate either the anterior or middle scalene muscle? (I'm assuming that these two are the culprits...I never hear about the posterior scalene causing problems).

And there's no doubt a specific pathway being impaired here. This is the third episode where a) throbbing reaches my forearm and hand and b) my tricep muscle becomes weakened. There is no doubt that a specific branch of the brachial plexus is being squeezed here. Somebody with a better understanding of the nerve roots could probably figure out which specific scalene muscle is causing the problem understanding the above.

Any thoughts?

Thanks for the replies.

KY

Did you switch jobs after getting diagnosed? I type 8 hours a day, I'm not sure if I can continue to do that, even after I feel better.

I also have throbbing and aching hand pain. It is rather severe...
I would not characterize it as "burning" and I do not have numbness or tingling. What I have gathered from numerous docs, is that it is NOT very characteristic of TOS. I have started looking into other explanations/causes for the hand pain...

I would be very interested to hear what Dr. Donahue says about it.

Otherwise, I took gabapentin for about a year, then I tried Lyrica for also about a year. I didn't think they helped. More recently, I have tried amitriptyline. Amitriptyline is a tricyclic antidepressent that is often prescribed off-label for neuropathic pain. I don't know if it helps the pain -- but it does help me SLEEP. It allows me to sleep through considerably pain.
You might want to consider it as an option to get through the nights.
I get the sleep effect with a relatively low dose.

That is what my doc is prescribing me next since I couldn't take the Neurontin.

Nelly...I didn't switch jobs, but I'm definitely in front of a computer quite a bit. That's been a constant for years. I also tend to have poor posture when I work. That said, I'm a workout fiend and do a lot of scapular stabilization and posterior chain strengthening. I don't think I'm your average bear for a 45 year old male.

Cyclist...I tried neurontin during my first go round with TOS a few years ago. Hated it. Felt too druged out. May have to look into this other option.

Interesting that your docs don't think the throbbing on the forearm / hand is TOS related. From various literature, it seems like it's part of the scalene referred pain pattern. However, this pain is far different than that burning pain I felt on my right scapula.

Important FYI: I had a cervical MRI done recently. Clean as a whistle.

I'm really hoping this unwinds without a botox shot. I'm stretching my scalenes like crazy, doing the diaphramic breathing, and doing some self first rib mobilization. Being this is the third episode in a year and this particular episode is the worst of the bunch, maybe I'm being a tad optimistic. This latest episode is bringing me back to the "bad ol' days" of when I first got hit with this on the right side.

KY

Hyper extending your neck compresses facet joints, and can compress any scar tissue

I've switched to doing zero upper body exercise. It's all legs and one ab exercise. After about a week, my pain levels started coming down substantially. I think I just have zero tolerance for any increase in either tension or growth in my upper body muscles.

Anyway, that's something you could try.

I also cannot stretch my scalenes without aggravating my symptoms.

Sometimes I get my improvements by quitting something instead of adding.

Good luck.