So I had a revelation today, and wanted to share.
Let me start with a quick summary for anyone who doesn't want to look through a bunch of posts to figure it out. I don't want to lead people astray who are having different symptoms than me.

1. I just produced baby #3 in Aug '05. I have been either pregnant, nursing, or both for about 4 straight years now

2. March/April of this year while and after doing some inversion poses in a vinyasa flow yoga class I felt severe pain in my arms, wrists, and the front of my shoulders. Pain also shows up as burning in my wrists (like a fireball is right in the center of them) when I am on the computer. I can't put any pressure on them, lifting myself up, closing the back door of my van, or anything.

3. Originally dx'ed as tendonitis and/or wrist sprain, went to PT for 2 months. It was helpful but also painful- the strengthening exercises would always make my traps hurt and my triceps. WHen I told the PT this, I was always told my psture wasn't good enough.

4. June '06 I passed a nerve conduction study, and was finally dx'ed as TOS (with different ortho) 12/10 on right side and 8/10 on left side. Pulse disappears very quickly on both.

5. Went to same PT place for TOS PT for 1.5 months. It only made me hurt, so I quit.

6. September '06 Went to see Dr. Jordan at ortho's suggestion to find out about Botox.

7. Dr Jordan gives me scalnene test block, claims that I have improvement and then suggests botox next. I was not quite convinced I had had improvement with the test block, but knew that I would try botox before surgery anyhow, so I went along for the ride.

8. Botox injections hurt very badly for 2 weeks, do nothing until about a month after- at which time I feel markedly better.

9. November '-6 to present- I want to take advantage of my loosened muscles, and I feel like I can't sit up striaght becaus emy whole back is just out of whack. I start seeing chiropractor and hellerworker- Chiro loosens up my neck significantly so that I can look to both shoulders again, explains to me that the weird pains I have been having in my back are muscle spasms (can you say clueless?) and helps work them out. They are presently better but not gone. The Hellerworker finds that my neck muscles and arm muscles are really tight which I expected, he also finds that the muscles on the sides of my ribcage are very tight and tell me he thinks this must certainly be contributing to my problem because he has rarely seen them so tight.

10. SO, on Dec 22 I saw Dr Jordan again, he says my pulse is back in the right arm after being goine for so long, congratulations on the improvement, come back in 2 months he wants to put more botox in before I get back to where I was. I am pretty psyched and ask to be sent back to PT because I know I need some help and feel like I am on the brink of progress.


11. Today I see Joyce Wilkinson and she says some things that really click for me. Therefore I want to share them because I haven't seen anyone else really say much about it and maybe it will cliock for others.
a. The muscles on the sides of my rib cage ARE really tight.
b. Sometimes the muscles of the neck and shoulder get tight because the ribcage is being pushed up from below and that's what really needs to be fixed before the scalenes and pecs have anywhere to lengthen to
c. and this one didn't click but it made me very very happy- there is a spot on my back that is super tight and that spot is probably what makes me feel like I am constantly stuck bending forward (unable to sit up straight). Now why didn't my chiro find that?
d. she found some "disfunction" in my wrists and they are really tight, probably contributes to the burning pain.
e. My pec minor is really really tight and probably has a lot to do with my issues.


SO...I took all of this in and chewed on it this morning. I have a couple of observations in no particular order.

1. Maybe Dr. Sanders is really onto something with his pec minor release surgery process. If others problems are more like mine it really might be a better answer than fixing the scalenes.

2. I think If I stuck with the hellerwork for long enough that might have been the right answer, too, because he was working to put my ribcage back in the right place and loosening the tension in my muscles. He found tension in all the same places as Joyce did, and had similar conslusions.

3. Botox in the scalenes and the pecs and traps alone probably wouldn't fix a problem with tight lats and serratus anterior.

4. My idea that sharon butler was totally on the right page was also right- it was her email FAQ that said for burning wrists you should stretch the lats and the armpits. Those are the areas that are so out of whack for me, and stretching them really does help the wrist pain when I get it.

Anyhow...I might come up with more later, and I'll come and update this. Joyce seems to really be the real deal. If you can't get to a similarly qualified PT, I would highly suggest hellerwork.

As always- this is just some things and thoughts that have worked for me, And I am no doctor. Just read and try to think.

Would also love to hear from anyone who has had pec minor release instead of the rib resection or scalenectomy, or anyone with other interpretations of my thoughts adn dx'es. I am putting it out there because I thought it was interesting and tried to make some connections that might help others.


happy new year!!!

Johanna

I think having more than one person for medical tx & support is a plus, because one can't know it all and a variety of viewpoints can be used to build consensus.
{does that make sense-LOL}

my chiro is very good but the top rib being raised & stuck was found by the advanced PT guy.
{He taught PT at a university & had his own clinic} - he mobilized {dropped} my top ribs in a one time evaluation session.
That was a major fix for my worst arm use symptoms.
My neck was immediately looser and relaxed too.

The severe neck spasms had pulled them up and they kind of stuck raised like that and were pinching things so that even with light use my arms would give me a lot of trouble.

Next chiro visit i mentioned that to him and he checked for it and did a bit of a different adjustment to the top rib also - it felt a bit tweaked at first, but then fine and now any other time it is a little out he does a small adjustment.

It's pretty exciting when things start to click and start making some sense for you - isn't it?

When I read your story and answers it helps me with my problems. I too have TOS bilateral. I have had TOS surgery on the right side by Dr. Sanders and on the left side he took out 4 inches of muscle under my right arm and both surgeries I saw at least 75% improvment. I really like Dr. S. He did my last surgery in 04 but he just called me a month ago to check on me.

My ribs are out of place also. I had a PTer that said that your ribs don't move then I had another one that says they can. They put my ribs back into place about 4 times in my Physical therapy and they still moved again. I spent over 4 years in PTfor everything going on with me on my upper half and at this point I do know I will never get completely well.

I fell too many times and landed on my left side and it was bad then I went to a Osteopathic Dr. and she popped my bones and messed up my right side. It is now 10 times worse then my left. I actually think she broke my right arm. I have had to have 2 rotator cuff surgeries, TOS surgery, Ulner nerve surgery and I'm still looking at surgeries for Triggerfinger syndrome, carpal tunnel syndrome and radial nerve syndrome.

I feel like those Nerve Conduction Studies are a joke. When you talk to people here you will see very few that showed anything positive. The Neurologist that did my 4th one said that if they don't show anything then there is nothing wrong. The Dr. that sent me to him actually called him up and gave him hell for telling me that. He was one of 4 Drs. that had diagnosed me with TOS, RSD, and all of these other nerve problems.

Jo is so right. The more help you have on this the better answers you will find. It took me over 3 years to get diagnosed with the TOS and I can't even remember how many Drs. I saw before I was able to get the diagnoses. Then after you are diagnosed, like RSD, no one knows what to do for it.

When I found Dr. S. he just jumped in and took care of me and worked with my PCP to take care of me. I give him credit for me not killing myself from the mess I was in along with my PCP.

I still have TOS on my right side. I know that but the only time I notice it is when I lift my arms to look at clothes on a clothes rack or hang clothes on a clothes line. I do watch how much I lift. I don't have the numbness and tingling like I had in my hands. I still need the surgery on the left side but I have had to many other medical issues to deal with it but I do know it is going to happen. Dr. S will do it when I'm ready. He knows all I've been through otherwise and he has helped me find Drs. for other problems I have had.

Don't give up on PT but don't let them make you lift and do things you can't do. I ended up with myofasical release therapy and lots of massages. She also pulled on my arms gently to get the muscles and nerves straightened out. I quit 2 PT'ers so you don't have to go to the ones you don't like, remember that.

Tens units are used for TOS and they work good. I used one for years. I also use Lidocaine patches where ever I need them.

My nurses can never get my pulse on my left side but since I had my right side surgery they can find that one now.

Don't get discouraged, TOS takes quite awhile to get any control of and make sure you don't keep going to Drs. that make it worse. If you see they are making it worse, don't go back or tell them.

As I said your story sounds a lot like me, Joanna.

Feel better soon,
Ada

Ditto, Ditto, and Ditto to everyone who has written so far, man I don't even have to type because, again all of you, have gone thru what I have been going thru...

It has taken me 3 years for someone to even mention TOS and I still don't think that I have the right Dr......

Thanks everyone for chiming in.

Jo- I am curious...does your chiro have a name for any of the shoulder adjustments he is doing for you?

Also...one more thought to add to my first post: my wrist. Seems I have a real wrist injury which is somewhat separate from the TOS. However, I have been so caught up in 'referred' pain that I was expecting the wrist pain to go away when I fixed the TOS (yes, please have a good laugh here about the 'fixed' and TOS in the same sentence). Turns out maybe I should have spent some time concentrating on my wrist directly (where the pain IS)

ah well...live and learn.

sure is quiet in here today...everyone back to work?
yippee!!

Johanna

I'll ask at my appt next week.
The one I mentioned about dropping the top ribs is generally called rib mobilization.
A I don't know if the chiro version is just called a top rib adjustment.
He has done little adjustments to my elbows too when they were hypersensitive and bothersome.

the video link I posted the about the deep tissue massage has a section similar to the new thing my chiro has been doing -the position is with my arm around across my lower back and he works around the shoulder and scapula.

Then last month when my neck was tight he did a deep thumb pressure tension on the muscles - stretching downward - it was pretty firm pressure on those - but it did the trick. {levator scapulae, SCM & scalenes most likely}

Wow, there are other people out there that experience the same problems. I think that is one of the most difficult parts about TOS is finding someone who can relate to the problems.

The biggest problems I have had with TOS are not being able to use my right arm as much as I would like and also sensitivity around my right shoulder. I cannot put any weight on my right shoulder without feeling discomfort. Most of all, from time to time, I get a pulsating lump right above my right clavicle. That drives me crazy!

I have done the Botox injections by Dr. Jordan with only temporary relief. I have considered surgery where they remove your top rib.

I have a couple questions...

1) For those who have had the rib surgery, do you recommend it? Will it bring relief to my pulsating lump (or muscle spasm)?

2) For those who experience the pulsating lump, how do you get rid of that?

Hi mothy19 -
I'll move a copy of your post to a new thread - you'll get more replies to your questions that way.

here's the link to it-
http://neurotalk.psychcentral.com/sh...ad.php?t=18674

Since Mothy so kindly pulled up my old thread, it seems like a good place to put and update on my progress. Funny how reading what you wrote about yourself a long time ago can be revealing.

I have now spent 4 months in my second go at PT (2x a week), I continue to see the Hellerworker for double sessions and the Chiropractor for single sessions once a week each. I also had a second round of botox injections that sadly only lasted a few weeks like the first set.
Unfortunately i was also plagued with a very sick toddler for most of the winter and lost weeks at a time to hauling her around (bad) and missing my own PT and stretch/exercise time. I also think I may have further injured myself doing some of that, but not sure. In that time my pain med consumption has increased significantly as has my general pain level, though, i didn't realize how much until this week.

As many of you know, I have been gathering surgical opinions. I just returned from Denver on wednesday where i got opinions 4 and 5. I have decided that I am definitely going for surgery and I'll post my reasons here...to relate directly back to my December thoughts.

Also in the process of the surgical opinions, I have had each doctors "special" favorite analysis. This includes: the
MR Neurography that Dr Filler does,
Scalene blocks and an SSEP for Ahn,
Spiral CT for Brantigan, and
MAC study and scalene block for Sanders.

I also visited Dr Weaver, but he had no special testing requests. I must say that Dr Sanders MAC [medial antibrachial cutaneous nerve conduction study] test was clearly the most traumatic but perhaps the most useful of all of them. I went on this crazy round of visits because I wanted to be comfortable with the course of surgery, And if figured if I visited everyone and got all the test I would know the most about my condition. If I could get whoever i picked to actually look at all of these diagnostics before surgery, I would have the best chance of him/her not being surprised when they open me up.

Either that or I am an insane engineer type on my own private TOS research mission [insert 'mission impossible' music here ] to figure out "who has the best tool for the problem" . If so, you all get to be my peer reveiw group to tell me if I am really clever or simply out of my tree....



<-- remember, this is me on an ordinary day.. read with caution




My First point is this: PT and hellerwork HAVE really helped me. They have helped with the vascular part of my problem so much that when I saw Dr. Sanders this week he refused to believe that I have ever had a circulation issue. So, maybe I don't have one now, but I did in the beginning. I know this (but did not belabor it with him) because in the beginning no dr or practitioner had any trouble making either pulse go away. This includes 2 doctors and 3 pters. (and those first PT'ers were nothing special)

I believe my PT and Hellerworker helped me most effectively because they worked together...SuperJoyce would say..I need [insert muscle name here] to be looser so that I can make [insert body part here] work better. I'd go to Robert the hellerworker and request that he work in that area. He didn't waste any time figuring out what to do, and was much more efficient at loosening muscles that the PT was. For some muscle groups, I was able to maintain the improvements that Robert made. The lats are an example. For others, I have not been able to maintain the improvements. My posture is not great, but it is better. My spine is not completely limber, but it is significantly more limber than it was, My hips are aligned and some of the leg muslce that affect your postue have been adjusted, stretched, and aligned.

This leads me to my second point: Eventually my progress has been limited by the amount my nerves are compromised. Having tried to work on some of the same spots (the knife in my upper left trap/rhomboid areas, for instance) for a few months now and not finding progress, I believe that mynerves are compressed too much for the body work to really get at the trouble spots. I know Di often posts about how when the nerves are feeling threatened or irritated, the muscles around them spasm to protect the nerve from further irritation.

So, even though in my heart I believed everything my hellerworker told me about how he can make any muscle the right length and elasticity again by working on it, that he can't neccessarily fix the 'nerve feeling threatened' part. In my case, I think I have reached the limit of what he can do for me until I get the nerve problem fixed. DOn't et me wrong, he has helped me tremendously, an I intend to have him finish up once I am done getting all these dumb stinking nerves released.....but we definitely hit the limit.

How did I come to that conclusion...? Well, in the same style as TowelHorse, I will have to come back and tell that part of the story when the numbess in my wrist dies down a bit....

talk to you all again soon,
Johanna

Basically, PT Hellerworker and I had great progress jan-mid march. But late february my littlest asthma baby got cold number 3 of 4 really bad practically-in-the-hospital kind of colds this winter. and I didn't have time/strength/energy to keep up with my end of it. I am also not sure i didn't injur myself more during that stretch because at the end of cold number 3 i just knew i was done. PT and Hellerwork became more of a "keep me going" than a "help me make progress" thing. I fooled myself for a while there thinking we were making progress, but looking back I think it was all pretty cirular. I had a good talk last week with SuperJoyce and she pointed out a few things that cemented my own thoughts.

Also, looking back, it was about the time of cold number 3 that I made a decided shift to needing more pain meds. Part of that could have been the wearing off of the second botox injections. or, as i was hypothesizing, that I hurt myself providing all the extra attention that my daughter needed during that time.

Lastly, after feeling the relief in my arm at the left scalene block this past tuesday, I can understand why I (or anyone elses with TOS!!!) am having so much trouble making progress. I could just feel the tension melt out of my arm when the block went in. Something in the way the nerves are compressed makes me hold my arms in a certain tense way. I don't unsertand it, maybe it is a little like when you turn on the IF stimulator a little too high and your muscles all want to contract uncontrollably. Having felt it come and go was so eye opening. I just don't see how you can override that once it is there????

Conveniently, I had been evaluating surgeons since Early March just in case.... so I guess now I just know for sure in my heart that it is time to move on and get it done. Actually, I am looking really really forward to it.

I am about 90% sure of my course of action including surgeon/surgery type. However, I have two more test results I am waiting for from last weeks trip to be 100% sure.

As soon as I get those I will post how I came to choose a surgeon. Maybe I'll do it on a new thread...not sure yet.

I am really rambling. Time to go to bed.


Sweet dreams everyone.

Johanna