[hollym]

Hi all - I usually hang out on the Multiple Sclerosis forum here, but Jo55 gave me a link over here to check out something going on with my left arm.

I have been having trouble for a few months now. This seems to have started in my biceps and is now all down my arm and some of my fingers are joining the party. The main issue is that if I use the arm too much, the bicep starts to spasm and tighten (this is painful and annoying) then intense tingling and numbness spreads down my arm. In the beginning, I don't remember it traveling down the arm, but seemed to be more just the bicep.

I had nerve conduction studies done and it shows slowing in the median nerve. My PCP is calling this carpal tunnel. However, the more I look at carpal tunnel, the more it doesn't seem to fit. I don't have problems more at night nor do I wake up because of this. Also, I don't have pain in my wrist / fingers.

I looked into TOS after Jo55 posted on my other thread on the MS forum and it seems to be more of a fit to my symptoms. Also, I should state that I am a small framed woman with large breasts and that seems to be a risk factor for this.

All of the above was really just background. My actual question is regarding something bizarre that I have been experiencing. I notice that if I turn my head to the left (my left arm is the affected arm) and and lean back to stretch, I can feel this pulling from my shoulder (from a particular spot on the inside of my shoulder) down to the crook of my elbow. I don't experience this on the right at all. Does this sound like something any of you experience that is related to TOS?

[watsonsh]

Hi Holly,

I have TOS and had the TOS surgery but still have some symptoms. But some of the symptoms dont always match TOS either.

So I saw a new neurosurgeon spine doc the other day and he did an mri and x-rays that had me in multiple positions. Showed nothing but aslight disc bulge on the MRI. Definitely showed something on the EMG and then the x-rays showed something but only when I was in different positions

One of the symptoms I have is that both my biceps and triceps hurt and the pain sometimes travels down to the elbow for me. And I feel it down the thoracic back to my shoulder blade. And my thumb and first finger often go numb for me now which is different than the numb fingers for TOSers. Oh and I am small frame, big chest and bad posture.

The new doc explained that in addition to the TOS he thought I have a subluxed c6 disc and that the joint is unstable but its hard to see and does not show up on a mri but he could see it in my x-rays when i flexed in certain directions.

Gonna try some gentle pt before we go down any route.

You could probably ask your neuro about it but you might also want to consult a spine specialist and make sure they do tests in different positions.

[Jomar]

Originally Posted by hollym

My actual question is regarding something bizarre that I have been experiencing. I notice that if I turn my head to the left (my left arm is the affected arm) and and lean back to stretch, I can feel this pulling from my shoulder (from a particular spot on the inside of my shoulder) down to the crook of my elbow. I don't experience this on the right at all. Does this sound like something any of you experience that is related to TOS?

does it feel like it's a slim line that is pulling?

I ask because after doing sessions of a lot of yard work, tree pruning and clean up - I had a similar feeling - it's happened 3 x's for me now.
Along with the pulling sensation, I also would get weird sharp pains in my wrist if I lifted or gripped while bending my wrist.
My finger coordination {typing} decreased also.
Oh and at the worst of it shoulder {inside} /armpit are would get pulling an weird twitches.

I mentioned it to my chiro since it was still bothering me at the time of that months appt.
He checked wrist, arm, neck etc and concluded my nerve had gotten hung up a bit & my muscles were tighter than usual.
So he did some flex, pulls, tugging, jerks and various maneuvers to the arm & wrist to free it up.
It was slightly tender the next day but after that the improvement was very surprising.

My hubby was having wrist pain too so I did the same type of things to his arm/wrist and it helped him too.

I don't have an "official" TOS dx by any MD { 2 adv PTs & my chiro agree}
One MD did write it as "Cervico/Thoracic spine strain w/arm pain"
and another wrote " chronic soft tissue injury -due to repetitive motion injury"

[tshadow]

For both of the posters, please don't "box" symptoms of TOS.

Can you believe that during five years, I've had almost EVERY SINGLE ONE of the symptoms you describe?

I remember when my thumb used to be so sore and twitched and was worthless.

How about when I had that reaction to novocaine and my tongue swelled up wide open and my face was numb / tingly for over six months.

And the leg symptoms - which most of the docs swear can't be related to TOS - yet those develop, get really bad, then ebb off, and some of my right foot is completely back and normal.

Now the TOS is causing my left eye to get red and painful, I vomit, my chest muscles get hard and unless I am lucky, I have to get to a hospital and be admittted for morphine IV.

And the docs say, after ALL of the testing - and it's in the 30s now on numbers of tests - IT'S ALL TOS.

For Holly M., look at Kat's thread and read all of the tests TOSers go through to decide if what is happening to them is TOS and then if it's operable or manageable through PT or meds.

I don't have the capability to describe each of your symptoms I've had, but as I was reading I was like, "yeah, I had that one, it stopped after a while, yeah, then I had that one..."

TOS is a real bi&%* with all that it can do to a person's body.

I love Di's pictures - they help you see at least which nerves are getting attacked at which time.

I am not opposed to a theoretical thinking that a virus is attacking some of the nerves for some of us, me, due to the way the pain and problems move around...just a thought.

[watsonsh]

Hi Tam,



Tam makes excellent points. It can all be related to TOS or separate coexisting issues that exaccerabate each other. Its sometimes hard to distinguish.

I also have thryoid issues that complicated my TOS because of a large inflammed goiter sitting next to my nerve bundle. Hard to say what inflammed what but then it just became a circle of pain.

I also have shown some recent insulin resistance which aggravates my nerves. I can thank family genetics and lyrica for that one.

So Tam is absolutely right in saying not to box our symptoms in any way.

In terms of my c6 disc issue the subluxation was very clear on the x-ray and I could see the disc impringement and the unstable range of the disc. Doc even thought that this could be a recent issue and the TOS surgery and removal of muscle contributed to an already unstable joint.

You MS could be contributing to this problem as well. It is all connected in some way.

Holly I would read some more on this board and google as much as you can. And have a qualified neuro check you out. Do your homework and question the doc with logical thought out level headed questions. Ask him to test you for TOS and see a spine guy. It could not hurt. So often we have to take the lead in our care.

If you do PT be sure that it is gentle and dont let them push you to do things that hurt. It often makes things worse.

[hollym]

Originally Posted by shelley

You MS could be contributing to this problem as well. It is all connected in some way.

Holly I would read some more on this board and google as much as you can. And have a qualified neuro check you out. Do your homework and question the doc with logical thought out level headed questions. Ask him to test you for TOS and see a spine guy. It could not hurt. So often we have to take the lead in our care.

You say the MS could be connected. Can you elaborate on that, please? The only thing I can connect is the spasticity maybe causing this or a lesion on the C-Spine. I haven't had a recent C-Spine MRI (last one was probably 4+ years ago) and all it showed was some minor disc issues and a reversed lordosis???

I do have a neuro appt coming up in a few weeks that I may just have to keep now (I was going to cancel).

[Jomar]

It might be a good idea to look into a new MRI - just for comparison and to check things, esp since it's been 4 yrs.

You might look up more about reversed lordosis too-
here's a few related links on that-
http://www.emedicine.com/sports/TOPIC19.HTM
this site is technical but I found it very interesting-
http://www.idealspine.com/pages/cbp_technique.htm

[trixlynn]

My TOS doc says that I have upper root and lower root TOS. By that he means that i have both ulnar and radial symptoms. So, not all TOS is relegated to the last two fingers. I have it in all five.
Holly I too have had all the symptoms you describe, but it you are an MS patient, it could very well be that. Talk to your neuro, see what he has to say.
Good Luck,
Trix

[hollym]

Originally Posted by tshadow

For Holly M., look at Kat's thread and read all of the tests TOSers go through to decide if what is happening to them is TOS and then if it's operable or manageable through PT or meds.

I looked at this thread and one thing that jumped out at me was the brain MRI. Why would they MRI the brain in this case? I have quite a decent number of brain lesions, but it has been my understanding that they wouldn't cause this type of problem.

I also have a lot of spasticity from the MS type crud and thought that was causing this initially.

[tshadow]

Originally Posted by hollym

I looked at this thread and one thing that jumped out at me was the brain MRI. Why would they MRI the brain in this case? I have quite a decent number of brain lesions, but it has been my understanding that they wouldn't cause this type of problem.

I also have a lot of spasticity from the MS type crud and thought that was causing this initially.

From talking to some of the TOP TOS vascular docs, neuros and someone who is considered perhaps THE BEST rheumatologist / immunologist, I was told they do the brain MRI because of the following reasons, and not just limited to this:

First and foremost, the do want to eliminate MS. They're looking for the MS lesions.

But then, they're looking for that Chiari 1 malformation. And othere malformations that mimic TOS but can be perhaps fixed by a brain operation.

And brain tumors.

So there are so many reasons they do the brain MRI plus the stem.

I just had another one, and they all say it's "normal." But I know and the docs know I have quite a few neurological problems...

This is so hard to deal with.

My heart goes out to all of us, because back when I was a work comp defense attorney, I never ONCE saw a TOS report (out of thousands), and I saw people have ortho surgeries and get well. I saw a few rheumatological arthritis cases, and those were hard, but again, for the most part, I just saw people have a problem, get fixed, and get back to either their same life, or pretty darn close.

We need to give eachother kudos for our research, for our unending hope and faith, and for our ability to talk to our docs like friends and not be mad that they can't "fix" us, since this is so hard.

We are a pretty cool group of people, folks, and I mean that from my heart.