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}

The chiro I was working with has been doing a specific adjustment that particularly helped me around the CT junction or T1. It has significantly reduced the the dowagers hump that was starting to form in that area and improved my posture. He has me sitting and I put my hands behind my head and he leans me slowly back and cracks my upper back from like t1 to t4.

For some reason this maneuver has helped me immensely.

Shelley

my hips are uneven too so mine does hip adjustments and T spine along with the upper back and TOS type stuff.
T3/4/5 - i think might be tilted a bit or they get jammed up.

one is-
lay on my side and he finds the bad ones {t spine} and then he crosses my arms a certain way and I exhale and then he leans down and gives a push in the right direction - then moves to the next one same thing.

sometimes I lay flat on stomach and he just goes down the T spine with moderate pushes upward towards the head - it seems like it spaces them or unjams them.

then another one for the hips- laying on side legs bent he pushes on the hips one way and the shoulders the other a twisting stretch.

here 's a few more chiro videos-
http://www.classicchiro.com/cms/video.htm
if you have a hour this is a Chinese style of chiro/body work- some of it looks a bit uncomfortable-
http://video.google.com/videoplay?do...ulations&hl=en

Update- went to see dr jordan again today (he said to come back before Feb if I started to hurt, and when I called to make an appt today they had a cancellation so I got right in, VERY lucky)

Anyhow, we traced back the arm pain and ignored the back pain and decided that the botox had worked, just not particularly well and he wants to try a higher dose. So in 2 weeks I am going to get that, however he was happy to incorporate the info from the PT about the pec minor being very very tight and said if there were other areas around my rib cage that seemed overly tight he could put a little in there too so that it would help the PT along. : )

also ordered mri's of the spine to make sure the back spasms aren't related to some other problem.

I feel like I won the lottery, as I was dreading having to wait several weeks to get in to see him.

Update: My botox from Jan 17 has definitely kicked in. I still feel pretty crappy compared to a normal person...but I feel GREAT for me!!!

I even painted this weekend...just a little wall, but it was such a relief to get it done. : )

I really hope it lasts for a while.

Johanna