Hi nospam, several years ago I saw a Dr. down at UCSF and he didn't think I would benefit from having the rib removed. He thought it was mainly scar tissue causing my problems. In fact, he said the other surgeon made a good call only taking the scalene's out. I had one of those fancy MRI/MRA's that shows everything and that's what he went by, so I decided just to leave things be.

Good luck to your wife. I hope that mitral valve keeps working well for her and she doesn't require surgery.

Done with antibiotics and Picc line
 

Well, I finally got the last dose of IV antibiotics on Friday(vancomycin) and they took the Picc line out on Saturday. I was on antibiotics for seven weeks. It was 11 or 12 days on antibiotics before they could do the heart valve surgery. They had to get me healthy enough first.

I'm not sure how many different doctors I had when I was in the hospital, but I would guess it was about 10 or 15. There were heart doctors, kidney doctors, and infectious disease doctors, and a few others. I couldn't keep track of them.

At first, kidney doctors told me my kidneys were failing and I was going to have to be on dialysis but apparently that all got better. I was constantly getting medicine or tested or scanned for something. It was exhausting but apparently they got it all figured out.

I also had a follow-up visit with my heart surgeon on Friday. He was all smiles and thought I was doing very well. I told him I was tired a lot and he said I can expect that for about a year. In fact, he said I had such a bad infection he wasn't sure if I was going to make it. A lot of people are saying that now that I'm doing better.

I still have a lot of tingling in my left hand.(Nonsurgical side) That really isn't normal for me. The Picc line(IV) was in that arm so I'm hoping that was causing irritation and it will calm down now that it's out. I started doing a lot of joint mobility with that arm and it feels pretty tight, so we'll see what happens. Hopefully it's not a new, different problem.

Getting back on track
 

It's been two months now since I had the heart valve surgery and I'm slowly starting to feel better. My energy and strength is improving but I still have some tingling and weakness in my left arm(nonsurgical side) that hasn't gone away and my rib cage is still pretty sore where they opened me up. Hopefully in time that will get better.

I've been trying to gradually increase my walking because it's supposed to be one of the most important things in helping the heart recover and get stronger. I'm still on warfarin, but the Dr. said hopefully I can get off of that in a month or so.

I just noticed it's been a year already since I started this thread. It went by really fast. I just turned 50 last week and I was hoping to have made more progress with the stretching and joint mobility than I have, but with my lower back flare up, endocarditis, and heart surgery, I've had a lot of setbacks in the last six months. Hopefully I can get back on track now.

Double Clubbin'
 

I finally made it back to using both of my Indian clubs at the same time on Tuesday. With my lower back issues and the heart valve surgery, it's been about five months since I've been able to do that. A nurse told me it takes about three months for the breastbone to heal solidly so I was waiting for that.

It seemed to work out okay. I have a 9 1/2 inch incision down the front of me that's a little sore but my chest didn't crack open and my heart fall out on the floor, or anything, so I guess it's all good.

I also had a heart monitor attached to me for 24 hours last week. I went to the cardiologist on Tuesday and he said everything looks good, so no more warfarin. He also said my blood pressure was perfect. It's been low since I had the surgery, and it was high for many years before that. So that was cool.

I also gained back 15 pounds of the 40 that I lost when I was sick so I'm starting to feel a lot stronger. The strength has come back in my arms and legs and my left arm(nonsurgical side) that was tingling and very weak for a few months is doing better. I think it may have gotten stretched too much while they were doing the surgery or something.

I also have a 5 pound pair of clubbells that I bought about six months ago and haven't had much chance to use them yet. I just started playing around with one of them about a week ago. I'm being really careful and just starting with one club at a time and only adding one exercise at a time. When I first got them I tried using both at once and it was too much. These things are heavy. Baby steps.

Shoulder range of motion
 

When I first started with the joint mobility exercises, over two years ago, my shoulders were super tight. Probably frozen, actually.

I couldn't lock my hands behind my head, touch my hands together behind my back, and couldn't come close to touching my elbows together in front of me. I can do all of that now but it's taken me this long. This is a slow process when you're as tight as I was, but it's fun to see positive progress.

My left side(nonsurgical arm) is still tighter than the right(scalenectomy side). It is also stronger and more muscular. I'm not sure if having the scalenes intact makes that side tighter or it's something that will eventually even out. My left hip is tighter too, so it's everything on that side. It will be interesting to see what happens in another year or so.

I'm tighter on my whole left side as well which is also my TOS side. I don't know if compressed nerves and blood vessels are making the muscles tighter, or the tighter muscles are causing the TOS, or a full circuit, or what. I do about 30 mins of PT and yoga stretches each morning to reduce the tension and even out my body.

honestly i dont get it

i have to stretch nonstop or all my muscles clamp down again and im not even doing anything!

my left side is stronger here too.

When somebody figures this out, let me know. :D

The stretching works temporarily, but I have to do it 1 - 3 X per day which tells me I'm treating the symptom, not the cause.

I am with you chroma. This is the craziest thing ever. How can you feel like your turning the corner one day, and then it is like your back to square one the next moment.

When I went to www.andoaston.com for my free eval, they showed me how nerves can also shorten and tighten up and are often mistaken for tight muscles. It was quite eye-opening and explained many years of stretching frustration.

How do you lengthen the nerves then? Nerve glides?

Nerve specific stretches, gliding and flossing. I think it would be worth the drive for you to see Ando or Sposa at least once. They even give you a login to access all of the modalities online.

Chroma,I've been seeing Dr. Ando too and I drive from Venice-its 50 miles. Luckily the driving doest bother me too much unless I am sitting in Traffic. i think They have a good program. The Rib mobilizations and exercises are really good. The nerve glides are hard for me I have to modify them to not overstrech.After having seen Joyce for 12 visits I wasnt getting anywhere, so for me its worth it. I am only going to do 2-3 more weeks of 2x a week, then once a week.My insurance is finished so I am paying cash, and its $40 cheaper than Joyce .I see Ando and Char. He does things that no other pt does, it kind of hurts but it is harder on women,because the ribs are under our breasts! I actually did the eval and a hands on consultation at the same time, as I didnt want to rive that far for just the 15 min. eval.

Interesting Website
 

This guy is a massage therapist and has a pretty interesting website. He seems to think outside the box. If you type in "Thoracic outlet syndrome" in the search box, he has some stories about people he's treated with TOS.http://saveyourself.ca/articles/mobilizing.php

http://hruskaclinic.com/blog/view/sm...n-his-new-blo/

this is a neat idea on asymmetries. i doubt itll help me but maybe itll help someone out there

Redness and burning in face seems to be gone
 

Ever since I had my TOS surgery(scalenectomy), which was almost 21 years ago now, I've had this redness and burning on the right side of my face and ear when I get a flare up. Sometimes, my right forearm would get the same redness and burning too. I was just thinking I haven't noticed this in quite a while now.

The joint mobility exercises must be helping something heal. I'm not sure what caused the burning, whether it was nerves, circulation, or what. That's the thing with TOS, it's hard to tell exactly what causes certain symptoms but I think it's a good sign. Hopefully I'm not speaking too soon.

I've been doing the joint mobility exercises for about 26 months now and the improvements have come gradually. When I had surgery 21 years ago, I had about three or four weeks of therapy after words and it was all the wrong kind of stuff. Aggressive stretching, weights, bands, etc. I'm still not doing any strengthening exercises, just trying to regain full range of motion in all of my joints.

I'm actually kind of surprised at the progress I've been able to make with the joint mobility exercises this many years later. I think a big part of my problems are tight muscles and adhesions. After this many years, I thought the damage was done and couldn't be reversed, but I may be wrong. It's just a very slow, painstaking process.

I also get an inflamed left ear, mostly the ear lobe. And some pain on the same side of the head. Definitely something going on with circulation there.

Did you ever try the "3 Minutes..." stretch set by Weisberg? It's easy to add as it is only 3 minutes and I found it very helpful for improving my overall body. Another good one I discovered recently was a video by Katy Bowman called "Aligned and Well - From the Shoulders Up".

Intuition
 

On the introduction to the Intu-flow program, Scott Sonnon talks about intuition. Basically what he says is, "You do know best." Your body sends you little clues, and signals, as to what it needs. The longer I do this, the more I understand what he's talking about and I just keep changing my movement program accordingly.

Usually, as one area loosens up, then I find a different tight area and I work on that, and so on and so on. It's kind of like I'm unraveling different layers of muscle fascia a little at a time. Sometimes one area has to release before another area can move freely. It's actually pretty fascinating the way it works. I spend a lot of time studying anatomy and watching people move to give me ideas.

I've been doing this for 27 months now and still making progress. It's one baby step after another. Always just going to the edge of tension, never through it, or into pain. If I do, I pay the price.

Hellothere said he is doing good after 13 months of physical therapy, and it wasn't any one thing that made him better, but a combination of things. I agree with that. The more I focus on my entire body, the better I seem to do. I'm trying to leave no stone unturned.

Police, Fire, and Military
 

I'm not sure if there's any police, fire, or military people on here, but I just thought I'd post this link to his free program. The stuff Scott Sonnon teaches has helped me tremendously so I'm becoming a huge fan.http://www.rmaxinternational.com/om/home.php

Coop42, I am a police officer and just downloaded the program. Thanks. I will try it when I recover from my surgery tomorrow.

Cool. Good luck with your surgery.

Wow! I can turn my head
 

I don't do much driving, but I did some today and I noticed that I can turn my head to check traffic now! I haven't been able to do that since I had surgery 21 years ago. I'm not going to get too excited because it seems like every time I do, something goes wrong, but I am feeling optimistic. I love this joint mobility stuff!

That's great! Appreciate every milestone, no matter how small it may seem. Forward progress is forward progress.

Looking down is getting better too
 

On my last post I mentioned I can turn my head better now. Now, looking down, seems to be getting less painful too.

I did a post about how bad looking down was a while back. I just looked it up and it was a year ago, so it shows how slowly this joint mobility stuff works. I just keep chipping away at it daily. I've been doing it for 28 months now. I've had TOS for more than 30 years now, so it would probably go much faster if you're younger.

I think the reason my neck is starting to move better is my upper back muscles are finally loosening up. I think they were all stuck together, and a lot of the rear neck muscles tie in with them. There's a lot of layers of muscle in the upper back and if they're stuck together it hurts, and you can't move well at all. They don't slide across each other properly. I used to think most of my pain was from damaged nerves and scar tissue, but now I think it's mostly "just" tight muscle fascia and adhesions.

The sounds of joint mobility
 

The last few weeks, I've been getting all these really loud pops, and cracks, when I do my exercises. When I reach overhead with my left arm, sometimes I get this weird ripping sound, sounds like someone pulling tape off of something. I guess it's just muscles coming apart. Crazy.

A few days ago my wife was in the other room and she heard this huge crack. She asked me if I was OK. It was just my shoulder popping, didn't hurt. Crazy stuff. I'm assuming it's good, if it doesn't hurt.

I get a kinds of popping when I roll neck or shoulders. The shoulders get a few loud crack or pop. I am told it is tendons rubbing against or ligaments or bone.

Movement is more effective than foam rollers
 

I came across this video where this Dr. explains that foam rollers don't release tight muscle fascia as well as movement. I agree with that, from my own experience. Foam rollers are overrated, in my opinion.http://www.youtube.com/watch?v=BnYdz...CPvz3hhcque_ow

It has been helpful to me-but I see it as more of a trigger pt release technique. I use it at hom in addition to other exercises and physical therapy.

Lower back and legs
 

I think there's a few other people with lower back issues on here, so I'll put this in. I think sometimes after you've had TOS for a long period of time, it can start to affect your lower back and legs.

Sharon Butler says, "Fascia changes consistency due to injury, surgery or other trauma, like a car accident. The more time that has passed since the original trauma, the more likely it is that the restriction in the fascia has effected a larger and larger area."

I've had two lower back surgeries myself. One in 1990 and one in 1994. I've had chronic pain in my lower back in both legs, ever since.

At the end of last year, I flared my lower back up a really bad doing stretching exercises and had to go to the hospital several times. The pain was unbearable. They finally got it to calm down was some steroids and epidural.

Since then, I've been extremely careful when stretching my back and legs. The Intu-flow exercises have been working well for me at loosening up my hips and legs.

For about a month now, I've been walking 3 miles every morning wearing ankle weights. This helps get my heart rate up a little bit more, which I'm trying to do because I'm also recovering from a heart valve replacement six months ago. When I'm done, I do hip mobility exercises with the ankle weights on. The extra weight seems to help stretch my hips a little better. So far, (knock on wood) it hasn't been irritating the nerves in my legs.

I think a lot of the pain in my legs is from tight muscle fascia because it is improving with the mobility exercises. It's a slow process but I'm not seeing anyone else my age (50) posting much about improving after many years, so I think I'm on the right path. Everything I'm doing is pretty much old school, just simple movement and mobility exercises.

The most effective thing I have found for relaxing back muscles is somatics:

Hanna's landmark book:
http://www.amazon.com/Somatics-Reawa...dp/0738209570/

A book with better photographs and instructions:
http://www.amazon.com/Move-Without-P...dp/1402774591/

A DVD with the strange title of "Yummy Yoga" since there is no yoga an the DVD. It's all somatics:
http://www.amazon.com/Yummy-Yoga-Gen...dp/B00075K846/

It's neat stuff. Fun to learn.

Also, this small, sensible stretch set really opened up my back with no ill side effects:
http://www.amazon.com/Minutes-Pain-F...dp/0743476476/

The reviews for all of the above are informative.

HTH

chroma,
I am new to the group and have been reading your tips on ways you manage your TOS. I actually ordered the Egoscue DVD, but putting pressure or weights on my arms seems to cause flareups (afterwards) I am trying to find ways to cope so I can avoid any surgery. I do think mine is more posture related - since my shoulders are rounded and being pulled forward. My posture was perfect in pics just 2 years ago - so I am just dazed and confused over this peculiar syndrome! Thanks for the helpful suggestions.

Egoscue
 

Chroma: is egoscue good for tos or just lower back? There is an egoscue center near me.

I have tried it and i find it to be mainly core focused (alot of mat work). It seems like it would be benefical if you don't have arm/shoulder problems. It was too much pressure on my arms. If you can do downward dog/cobra yoga poses, planks etc then it would be beneficial. Unfortunately, i felt like i couldn't go alot of the exercises because of the weight to the arms.

I started with Egoscue "Pain Free at the PC" and found it useful. I don't recall any downward facing dog or planks in that one. And you can always skip things that don't work for you.

I still do the "air bench" aka "wall sits".

Another one was laying on your back with your legs propped on a block and your arms out. That was good for getting my head back over my shoulders and stretching my chest which was so tight that just laying like that, I could feel a pull in it.

Another good one was the one where you bring your elbows together in front of your face. I couldn't touch them at first and over time I my upper back opened up.

So I still have a positive perspective of it. If you have a clinic nearby, it could be very informative to have a postural specialist analyze you and prescribe exercises. If you have limitations, just share them and ask if there are modifications or alternatives.

Since we're on this subject, I have to give another call out to the book "3 Minutes..." by Weisberg and the video "Aligned and Well: From the Shoulders Up" by Katie Bowman. I reviewed the latter on Amazon as it did not have enough reviews. I use a different handle, but you'll have no trouble guessing which one is mine. :D

Good luck, everybody.

Ok, i check and i have the Pain Free Workout Series Part 1 for beginners. This one I found does have mat positions putting pressure on the arms and shoulders. Of course i could have skipped them, but silly me decided to punish myself thinking I could do them! I used to do all types of workouts....sigh. I have gotten the Aligned and Well, Shouders Up (based your recommendation) but have not used it yet. Thanks for all of your recommendations. I'm determined to find something that works! I live no where near civilization, but you mentioned a clinic. What would I look for - i can always make the trip to DC if i can find something that might work.

@Woodstock3, what you're essentially looking for is a PT who will eval your TOS and your posture and get you on the right track probably through a combination of manual therapy and prescribed stretches/exercises.

Since you are removed from civ., don't be shy about calling places and asking to talk to the PTs directly. Write down your questions ahead of time.

One thing I experienced earlier on was that whether it was a PT or a chiro that was checking me out, I learned some things about what was wrong with my posture and biomechanics. It's useful to have those expert set of 3rd party eyes have a look-see.

If you want some things right now that are unlikely to flare you up, here are some ideas off the top of my head:

-- corpse pose and variations such as bending the legs or putting the arms in different positions. youtube for details.

-- brugger relief pose/exercise/movement. youtube again.

-- the aligned and well, shoulders up which you already have can be watched in one evening

-- if you think you have muscle tension problems and/or you have TMJD, neck tightness or tension headache, I now highly recommend "The Quieting Reflex" by Charles Stroebel. while waiting for the book, you can google for it and find instructions and start immediately

And maybe you're already doing some or all of these, but I can't tell from here, so thought I would throw them out there.

Good luck.

Keeping pain manageable from mobility exercises
 

You hear people say "No pain, no gain" doesn't apply to TOS. Well, yes and no, in my experience.

I agree that you don't want to push too hard and make your muscles go into spasms. If that happens and you go into a flare, you can't really exercise until it calms down.

Inflammation, however, is another matter. I've been doing these mobility exercises for almost 2 1/2 years now and I still get some inflammation in my shoulders and arms at times. It's not nearly as bad as it was in the beginning, but I still get it. It just means I've stretched some tissues and nerves that aren't used to it. Usually when I do something new. It's actually a good thing. It's necessary for healing, I've learned.

I used to think if I did something like this that caused pain, or exacerbated my symptoms, I shouldn't do it, but when I could hardly move anymore, I realized that my thinking was wrong. If I had to work, I don't think I would've been able to keep this up because in the beginning the pain was pretty bad. There's kind of an art to this. It takes a lot of experimenting. Most of what I've been doing really isn't in a book, or on a DVD, it's just me moving around looking like a dork.

how do you tell the difference between a flare and inflammation? Also between nerve pain and muscle pain ? I tend to stop doing the strengthening when I am in pain,therefore not as much as I should be. maybe I should just power through it.

It's kind of hard to tell the difference between inflammation and a flare because they feel a lot alike. I think the biggest thing is inflammation calms down faster, usually in a day or two. A flare may take a week or two to calm down for me.

Nerve pain for me, is usually more of a burning feeling and a lot of times I get some tingling in my hands. If I have inflammation, or nerve pain or tingling, I usually let it calm down before I exercise again. So when I feel good, I do more, and when there's pain, I don't push things too much. I keep my movements a lot more gentle.

What's the point?
 

What's the point? That was my attitude last week when I woke up at 5:00 AM Friday morning with pain in my neck and shoulders and couldn't sleep. Why even bother? I've been dealing with this crap for more than 30 years. I'm just kidding myself to think I can ever get better. And that may be true. Why do I keep trying?

I think the reason is, because I have made a lot of progress, and I am feeling better than I have in many years. But, it is very discouraging when you think that maybe you can do something, after all this work, and you can't, without a flare up. It's very tempting to throw in the towel, and just say, "I quit". When I started this, I made a vow that would keep going, no matter what. I'm sticking to that, no matter how hard it may be at times.

2 1/2 years seems like a long time, but I guess since I've been dealing with this for more than 30 years, that's not even 10%, so maybe that's not so bad. I have to get my head back in the game and just keep pressing forward.