Right Side TOS Sufferer Now w/Left Side Symptoms
 

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.

One thing that may have led to this episode: A recent shoulder surgery.

I've been battling a left shoulder injury for about 15 months. Doing lots of left side rehab. LOTS. There's been a lot of stress around the left shoulder and anterior chest/neck area for a while now. I finally threw in the towel five weeks ago and had it done.

I was immobile and packed with ice for some time. Then had limited shoulder mobility. It's gradually gotten better to the point where five weeks later I'm getting somewhat back to normal. That said, I wonder if the restricted mobility contributed here.

What do you do for abs? Seems everything I try engages neck muscles.

(I also do zero upper body since it results in immediate onset of symptoms)

Has anyone self massaged their scalenes with any success?

I have an appt. with a massage therapist Monday. That's an eternity from now in my mind.

I've been looking at Youtube videos and attempting self massage myself. Combining the massage with the usual scalene stretches seems to work for short term relief. Of course, once you stop the pain returns. It would seem you really have to beat these muscles up repeatedly to actually "lengthen" them.

KY

Re: abs, I have the same problem that most ab exercises engage the neck. But while researching health and fitness, I read an interesting tidbit somewhere about how the innermost layer of abdominals aren't actually activated in sit ups or crunches, and they are considered important for bracing the internal organs and preventing hernias. It clicked with me because sometimes you'll hear about ripped guys like The Rock getting hernias and you wonder why their 8-pack isn't preventing that.

IIRC I read about this in the "Posture: Get It Straight" book and possibly also in Julie Bookspan's book on pain.

The exercise I do for these transverse abdominals is to stand up and forcefully exhale while sucking in my stomach both inward and slightly upward, similar to what you do when squeezing into a tight pair of pants. I find my hips tuck forward when I do this and sometimes I'll squeeze the glutes as well. I do about 5 - 10 reps.

I often hold at the end of a rep, both to increase the difficulty but also to avoid hyperventilating.

Unlike most ab exercises, there is no deliberate raising or hold up of the head. You could of course engage your scalenes during intense breathing, so you want to be mindful of keeping your neck relaxed.

This is all from the books. I have not hit the link above to see what the interwebs has to say in detail. Though I did look at the search results listing and saw pages like "The abs you're forgetting in your workout - Transverse abdominis"

Oh man, I wish I got an immediate onset. I get a delayed onset by days or weeks as the muscles gains size and tension. Bleck.

Quick update on sleep.

I hate that I'm doing this but I pulled out some neurontin I still have from three years ago when I had this on my right side.

I know take 2 pills right before bed and then I'll take 2 when I (usually) wake up in the middle of the night. It's doing the trick. Symptoms decrease just enough so I can get sleep.

I just hate the side effects. When I wake up I just have that drugged out feeling among other. I'm staying away during waking hours unless this gets worse.

KY

Stott Pilate's has an ab prep exercise that teaches how to engage abs without straining neck...they have a website...I have their back care series

Curious if people here have worse symptoms in the morning vs. the afternoon?

I wake up every morning and the major malfunction is tilting my head back ever so slightly past neutral. As the day goes on and I continue to stretch my scalenes I can tilt my head back further with less referred pain down to my forearm.

Does this make sense?

Is it possible that my scalenes tighten up over night and maybe my first rib rises as well? And that this slowly loosens throughout the day?

As an aside, it's mind boggling to me that tilting my head back just a little causes such a problem. I mean, my scalenes are that tight?

KY

Thanks for your abs tips! Perhaps of interest: http://www.nytimes.com/2009/06/21/ma...-physed-t.html

I agree with the article in the sense that I would not add the "sucking in" maneuver with other exercises.

I disagree in the sense that I've read that abs crunches (and the other two exercises) would not hit the transverse abdominals afaik.

I also agree that multiple exercises are ideal, though I have trouble with irritating my TOS doing bird dogs in the class manner with the arm fully extended. That is very similar to reaching overhead which creates traction through my arm, shoulder and brachial plexus (which is fine if you don't have TOS). I've been thinking about doing a modified version where I keep the arm bent in some fashion.

I'd have to experiment with side planks to see if they were problematic.

I'm still a fan of the exercise I described and then leaving out that approach when doing other exercises.

Do you know why on the crunches they go with one leg bent? And then do you switch at some point?

I don't know why. Perhaps it takes pressure off the lower back? Unfortunately I'm unable to do any planking, "bird dog," or anything that puts weight on the shoulders or involves arms extended (b/c of TOS). But I'll definitely do the ab exercise you suggested.

So six weeks ago I had left shoulder surgery. This may or may not have contributed to my current condition. Although I wouldn't be surprised if it did considering how immobile I was in the early stages.

Anyways, had a followup appt with my ortho. I had already discussed the previous episodes I'd had with my TOS symptoms. Last time I discussed this my ortho basically said, "let's not chase this with all kinds of tests, etc. Best guess is that this is a brachial plexopathy that will pass."

So, I bring this up again yesterday and the whole thing was just pooh poohed. "Let's see where you are in another six weeks."

I was like, "Six weeks? I can't sleep a lick now and you want to wait another six weeks? I could be dead in six weeks."

So frustrating.

Unfortunately, I've seen this movie before. The only two Drs. who get this are Dr. Donahue at Mass General and Dr. Kasparian at Lahey Clinic.

KY

My experience is that generally, docs are clueless when it comes to TOS. I'm in the Boston area, supposed hub of superior medicine, saw over 30 docs since symptoms began in 2009 (including shoulder specialists, physiatrists, neuros specializing in peripheral nerve entrapment) and not one considered TOS, some dismissed it when I brought it up. Some got downright nasty when they thought I was engaging in self diagnosis. Finally I made my way to Dr. Donahue who has offered surgery for NTOS. He told me one of his patients saw 50 docs. I understand TOS is often a diagnosis of exclusion, but the lack of knowledge about it in the medical community is baffling. I'm sure you'll get to the bottom of what's likely going on when you see Dr. D.

So I've been getting deep tissue massage of the scalenes. I walk out of there feeling loose. Symptoms have decreased over the last week to the point I really thought this was getting pounded into submission...

...until this morning.

Pain in the neck, forearm, and hand. When it's bad I can hardly straighten my neck out and stand up straight. It's almost like I have to hand my head low so the scalenes are slackened.

Anyways, do people feel like their symptoms increase in the morning due to overnight stiffness? And then decrease as the day goes on and you loosen?

Yes, my symptoms are always worse in the morning.

I've had it both ways. Sometimes worse in the morning and it gets better as the day goes on, but sometimes it's just the opposite. Good when I wake up, and it goes downhill from there.

kyoun1e

I experience alot of issues similar to what you have described especially in the morning, which can be severe dependent on the previous days activities.

I have had surgeries, complications, seen numerous doctors, etc.
My PCP explained to me that in my case the nerves were overstimulated and I now have chronic pain, but even after starting on meds for the nerve pain can still be bad. He said that it is likely Fibromyalgia because now the nerve pain is body wide and just got over the flu over the holidays and I can say that the nerve pain was intense.

I read some of your past posts & the one in particular about your cervical MRI being clean is why I thought I would post this because in doing research for Fibromyalgia I came across a Doctor who treats people with Fibro & has a interesting theory on those who have Fibro actually have what he refers to as "positional cervical cord compression" or PC3 & his name is Dr. Andrew Holman.
It makes me wonder if those of us who have the neck pain this is the contributing factor to our TOS symptoms also. He states that those who get "neutral position MRI" will usually show nothing extrodinary but if the MRI is done flexion & extension views the measurements can identify compression on the cord that be related to "intermittent nerve compression". If you google PC3 & Dr. Holman he has info on his site and I also found on youtube a video that is about 45 min. long but is informative.

I know like one of the other posters stated that doctors don't like patients to "self diagnose" however, what does a person do when no one has an answer.

chloecasey

Wow. That's interesting. And scary.

I actually wondered today if I should think about getting another cervical MRI.

I do have a little bit of issue in the c6/c7 region, but it's always dismissed as "unremarkable."

Coincidently, I'm going to a chiropractor Friday.

I'm really throwing everything and the kitchen sink at this one.

KY

What are the treatment options for positional cervical cord compression?

From what I read and watched on the video, mostly they have a therapist who created a pt method that is different to typical therapy, I think the name of the therapist on the site that I searched, is Sue Horton. The Dr. stated that surgical treatment would be recommended for ones where PT treatment was not successful or case was such that it was severe. I had bad experience with surgeries so I want to avoid that totally.

BTW, I also read that Dr. Holman has retired from his practice to devote time with research. I plan to show my PCP the info I found and contact the Dr. Or the therapist to get a hold of the DVD that she created.

One thing that I watched on the video, the doctor did say if a person seeks out a chiro that the patient should show the chiro the mri & report....especially if they have the flexion & extension views done.

Early on after I had my surgeries I did go to a chiro and did not find the treatment helpful, there was 1 adjustment that he would do that I even questioned whether it would cause a problem (based on my case with 3 surgeries, etc.). Hard to describe but it was where he would put his hands (palms) on the front of my shoulders ( would be on my back on the table) and press down? not a great explanation but you can maybe imagine that it did not feel too good.

Dr. Holman also stated that people with Fibro that was studied that most if not all had an adversion to putting there head back which seemed to point to the theory of doing the other views of MRI's and whether it showed the cord being compressed in those positions....sounds likely for pain that comes and goes too.

Editing my post again to also say that their is a 2nd video titled Treatment Pearls: Fibromyalgia that is another presentation that Dr. Holman did the following day at the same conference.......interesting info that again may have some ties to TOS neck pain, poor sleep, etc.

My family dr thinks I have Fibro...can you have Fibro and TOS at the same time? I guess what I'm asking is, are they related?:confused:

I've been told that I have it. I think that TOS causes a lot of other things. Irritated nerves can affect your whole body, over time. I've read posts from others saying this, but they don't post much anymore.

[QUOTE=Nellyzen;1042527]My family dr thinks I have Fibro...can you have Fibro and TOS at the same time? I guess what I'm asking is, are they related?:confused:[/QUOTE

I believe that each persons situation can be different however after researching Fibromyalgia after my doctor explained to me about what I have been thru and ongoing problems now with more neck pain, body wide nerve pain, fatigue, etc. (and this is 3 years post TOS surgeries with complications) my situation is definitely post op chronic nerve damage because the nerves were over stimulated from the 3 surgeries the nerve pain I have is amplified compared to what a person would normally have.


After reading the info that I found online about the theory of the positional cervical cord compression being a cause for Fibromyalgia "symptoms", It could likely be the cause of some TOS "symptoms" especially when neck pain is one of the symptoms. I found after watching the 2 videos and reading the research that Dr. Holman presented to be so interesting and thought that this certainly could be related to TOS and who knows probably other conditions.

It is frustrating to know that problems not seen on a Neutral View MRI can actually be seen on those 2 addtional views (flexion & especially extension), but are not usually ordered.

The videos are a bit lengthy but I have watched them several times and read and reread the research paper & website online and it to me is a possible relation to TOS also.

chloecasy

Well, went to the chiropractor yesterday. He didn't think I had a pinched nerve (which is consistent with my MRI results), but did say that I was one of the ten worst cases he'd seen in 25 years of practice. I think because I've been rehabbing and eventually having a left shoulder surgery has left me out of balance due to over compensation on the right side.

I walked out of there feeling great, but alas, as evening approached, the same ol' symptoms creeped back in. Another night of battling pain demons and trying to sleep on my back without great success.

It could be that this may take a number of attempts with the chiropractor. He did say that my scalenes are taking on too much of the brunt because of the way I was aligned. Not much comfort in the short term.

Will go back for another adjustment Monday and see if things improve.

All eyes now towards an appt. with Dr. Donahue where I will want to get the botox shot on the fast track. That's probably easier said than done. He'll probably want to redo CT scans and circulation exams and, the insurance approval is a pain if I remember correctly.

KY

Not to make this my daily log, but I met up with Dr. Donahue today. Actually, he called me last night to start. Said a surgery had to be rescheduled so he was concerned he'd be short on time today so wanted to do some legwork prior to my arrival today so we weren't pinched for time.

I mean, how great is that? Most Dr's I know would have you show up after driving 2 hours only to tell you that you have 5 minutes with the Dr.

As usual, I was impressed with his memory of my specifics, the care he takes with every detail, and just his overall approach. It's impossible not to feel comfortable and trusting in this guy.

Anyways, he feels that botox is the best route here...especially considering how well it worked on my right side.

What was alarming is that Dr. Donahue feels that based on my scans that I have a very high level of compression going on. In his words, most people who match my unique anatomy end up having the surgery. That said, there's something about me that makes me get away with it and enables the botox to work. Still, this is scary. I wonder if this is really a ticking time bomb where I inevitably need to have the surgery. Could be in a year, five years, or who knows.

Will keep folks posted on botox and reaction to it. Hoping it can get done in the next week or so.

Thanks for the update. I am very interested on Donahue's take on the Botox.

I don't understand why repeated BOTOX can't be used to atrophy the scalene muscles so that there is no need to remove them???

I asked the same question.

What he has seen is diminishing marginal returns. On each successive use of botox, it works less and less. Eventually you reach the point where it's not worth it anymore. I think he said he had one patient that just refused surgery and they did botox 18 TIMES!

That's interesting.

I met someone who had the exact opposite experience. Each time she got Botox, she had longer and longer relief periods. Of course, she was doing PT and who knows what along with the botox....

I was diagnosed with fibro after the tos started. Savella works great with fibro. Maybe after my rib resection I won't have fibro any more?!? Okay, not likely, but that would be cool, just saying.

What kind of "scans" did he do?