New TOS'R confused about treatments
 

Hello! I was diagnosed with TOS about a year ago. I have had my rib resections done on both sides and still having pain. My surgeon keeps dragging on with physical therapy. The pain is better but still there. Has this happened to anyone else?:confused:

You will find many TOS'rs in CA. As far as I am concerned, therapy has never really helped me. Often it has made me worse. You have to make sure that the person knows what they are doing and be specialized in TOS therapy. I hope you find some information from this site to help you.

Linda

Often the surgeons and PTs want you to move quickly to strengthening the muscles once the surgery is over. The PTs in Denver (who have sat down with the surgeons and gained a real understandeing of TOS and even observed the surgery, and devised a course of therapy specifically for TOS), have said NOT to attempt to strengthen until all nerve pain symptoms are gone. They focus first on proper positioning and stabilization of the shoulder muscles (once the compression has been adressed) and gentle range of motion exercises. Then they move to isometric exercises on the same side of the body as the arm (each side). Ultra sound to tight areas and massage after therapy are also considered beneficial.

Next step is exercising across the body, again, as long as you don't experience nerve pain, and maintaining correct posture and scapular muscle positions. Finally, after weeks or months, depending on your body's tolerance and progression, begin isometric exercises on same side of body with 1-2 lb. weights for a couple of short sets. Work up to 3 sets of 10 reps, then back off some and add a few cross-body reps with weights, working up to 3 sets of 10 reps of the various exercises as your body tolerates and slowly adding weight. Be careful not to attempt too much weight, as you will be vulnerable to reinjury.

It is very slow and gradual, NOT quick! I believe their contact info is posted on the Dr's and PT's list under Paula Asbaugh PT in CO.

It is difficult to find a PT who really understands this condition and how to best rehab from the surgery.

Many of us find that therabands, handbikes and the like make us worse, not better. If this is the case, speak up and let your PT know! And if everything seems to make you flare up, for some time the only therapy I could do was warm water therapy. The heated pool felt great, and at least I was moving. You will likely see the most benefit from a pool set to the temperature required for arthritis warm water therapy classes - which is around 93 degrees or above I believe. And access to a hot tub to help blast out those trigger points at the end of class is heavenly!


Best wishes,
beth

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TOS Treatments
 

I have had my first ribs removed on both sides. The second surgery caused an excruciating muscle spasm on the opposite side which took six weeks of physical therapy to get under control. Now the left is still showing signs of compression eventhough I have been going to physical therapy. My question is does doing a scalenectomy make it better? I could put the surgery off till summer, since I work at a school, but am afraid that the stress and reaching in my secretarial duties may make it worse. I know that you guys can't make the decision for me, but would love to know what your thoughts are since you know what I am going thru. I have never been on medical disability before and find myself feeling guility about not working but everyone keeps telling me to take care of myself. uugh!!!!:rolleyes:

What kind of testing did your surgeon do before deciding on the rib removal only?
Some do the rib and then go back for the scalenes if needed.
And was the whole rib removed? as opposed to leaving a stump?
If dr didn't clarify I believe you can find the info in the surgical report.

But the thing is - there are numerous places that can cause the compressions. It's not always the top rib alone- but I guess it's the most common thing to try first.

Could be pec minor, scalenes, large bones or ligaments, scar tissue, even over developed muscles or an anomaly in the structures..

The more expensive MRA is supposed to show more details and specifics - but not everyone uses those though.

I see Dr Ahn & Dr Reil. They did an MRI/MRA and some other electrode test to rule out carpal tunnel, fibromyalgia, etc. They used to do the rib resection and scalenctomy all at once but found that only 30% of the patients only needed both. I was the lucky one to fall into that 30%. He also said that after the compression is gone that I will be able to return to normal function. But from the threads I am reading, that doesn't sound like the case..?? I am sure glad to have found some others that are going thru this because it sure makes me "re-evaluate my mental status". Sometimes, I feel like I am asking for too much, not sure if what I am feeling is related to the TOS, or just going stir crazy. It is so difficult to figure out what is best for me. I have been off work since 12/17 and now am afraid to go back and hurt myself more but not sure how long I can be without the income. The disability insurance company doesn't sound like they want to cover this eventhough it wasn't pre-existing and I am eligible. I don't want to put my family in financial hardship either. It is a scary thing for me to be at this point in my life. I have to have more faith and be blessed that I am not as worse off as others...just hard to be positive right now. Thank you for listening, it is GREATLY APPRECIATED!!!;)

Emntlover,
I had bi-lateral rib resections in October of 2006. At first I seemed to get better. I tried to go back to work. I made it 2 1/2 months. Now my doctor has declared me disabled. He says he feels that I probably will never work again. I am a 37 year old mother of four. I tried to do daycare for a little while to supplement my hubby's income, but even that made me worse.
I am now applying for CPP (Canada's form of SSI).
What I am trying to say is lidsten to your body. If I had really listened I wouldn't have gone back to work, and wouldn't be where I am right now. So listen. Every woman has that 6th sense, but we so often ignore it because we don't want to inconvenience anyone.
Care for yourself. There is only one you, and you need to make sure you are healthy. Don't sacrifice your health. Do whatever you need to do to get better.
Trix
P.S. Maybe this was more to me than to you! :D

Thank you Trixlynn I needed to hear that!!! It is so very true that we women ignore our 6th sense because I am always worried about how my illness is affecting other people not me. When you are normally a Type A personality and then get put on medical leave it is very difficult to not be feeling guilty for not going 100 miles an hour! Did you also have the scalenectomy on both sides?

I needed the reminder too. I saw a rehabilitation Dr. today who told me basically that my only problem was tight muscles. Nothing a vigorous massage, and strenuous excercise couldn't cure.:eek:
I cried all the way home. He actually has me second guessing myself. He has made me feel like a drugseeking faker. Is thgis for real, or could he be right?:confused:

According to one of the previous responses in this thread, it doesn't sound like he knows what he is talking about. Sometimes, my massages and ultrasounds make the pain worse. Does he know what TOS is? I can understand your frustration, sometimes the doctors are so sure they know everything they don't listen to the patient or just dismiss them. You could give it a try and see what happens or go get another opinion. You don't have to stick with that dr. There is a response in this thread with a list of drs and pt providers, is there one close to you? If you feel you don't have another choice of dr try the therapy and when it doesn't work give him something to figure out. I am so new at this that I don't have much to offer for advice but HANG IN THERE! Cry if you need to and know that I will be praying for you to have some peace. I wish I could be more help!!!

Trix - Maybe some therapeutic massage and some specific for you muscle work {possibly triggerpoint and myofascial release ??} might be good things to try if you can...
but I'm pretty sure that the Drs suggestion of -"vigorous massage, and strenuous exercise" isn't the answer.

Have either of you tried Sharon Butlers TOS programs?

She has a book that's in libraries {for RSI} but her website programs are specific to conditions of RSI, shoulders or TOS.

oh here's a site I found a long time ago and then I lost the link - but found it again finally ...
explore the whole site it's pretty interesting-
http://www.bodymindresources.com/index.htm

Time may tell
 

EMT. I posted this for trix as well in her thread so I will post in yours. Sometimes it just takes time. You feel like you will never heal or be normal again but for me at least it just took some time. I had left sided rib removal and a scalenectomy on that side and now after 2 1/2 years I am so much better. Im not cured but as long as I watch the typing and driving I have no pain. I clean my house and do everything moms do. This is just my case but something for everyone to think of...Sometimes our bodies just need some time to heal. I'll be thinking of you and hoping yours isnt so long.

EMT- I am having the same thought process as you- I am a patient of Dr AHn, i am having the scalenectomy procedure on monday the 18th. I have been out of work since May, and sometimes i do feel guilty.

Obviously, to go back to work we have to get better...and it doesn't just happen all at once. You start at BAD and go to medium and then to better, then to "can tolerate working" at some point. where to draw the line before going bak to work? well, good question. the disability insurance co wants you to go back asap. My personal feeling is that if you go back before you are well enough, it may work for a year or so, but perhaps they are cementing your fate of eventually not being able to work at all? i don't know what the right answer is, but I was thinking of this...

In CA you are considered disabled after you pass your 36th week of pregnancy. So I asked myself about how i feel right here right now; do I feel better or worse than I did when I was 36+ weeks preggers. I honestly have to answer that I feel a lot worse than i did then....and i felt pretty crappy when i was pregnant (undx'ed thyroid problems and all). I am slower, have less energy, can lift less, can drive less can use the computer less, etc etc. I think until i feel markedly better than i did at that time, i probably belong home on disability. But I have to pump myself up once in a while to not get too down about that. It was somewhat depressing to get approved for LTD and be told i was having and IME to confirm my permenant restrictions. I just had to say to the guy...' you know i haven't given up on myself, right?' then i cried a little when i got off the phone because i felt sort of defeated...even though i should have felt relieved!

This is just my own thought process....i would be interested to hear if anyoen else has any ideas on this. I thought the 36 weeks pregnant analogy might work well with the IME that I have coming up on March 3 for UNUM (the LTD co). I have to figure out some way to explain what I can and can't do...when really I can 'do' almost anything for short periods of time...just the days later side effect that are a problem. It will probably be helpful that they scheduled it exactly two weeks following my scalenectomy...so i'll probably be visibly crappy feeling after that, won't even have my stitches out yet.


Lastly, I have an emailable copy of a book with some very useful stretches and exercises that I can lend to anyone who'd like. Just PM me.

Johanna

EMT - Hi, I'm a she, and yes, I do KNOW what TOS is. I have it bilat, along with severe RSD. I meant ultrasound as in heat treatment, which is what helped me when the nerve was protruding beneath the skin at my armpit following my first rib resection and I made a quick return flight to Denver in a panic. And massage, well, it has to be the right touch - not deep-tissue massage by any means, nothing to aggravate the nerves - just a nice moderate touch to those achy muscles with the triggerpoints. Anyway, that's what works for ME, relieving my nasty headaches for a few days. :)

We are all very individual, and I'm the first one to point that out. But heat is one thing that always helps me (with RSD, ice is verboten!), and I don't tolerate a light touch either (allodynia - I perceive it as painful). This is true of many TOSers due to the sympathetic nerve involvement, I think even more so for some of those who have had it for several years, as long-standing chronic pain causes changes in the part of the spinal cord responsible for sending pain messages to the brain.

My RSD specialist explains those changes, called "central sensitization", by saying, if all my nerve damage could miraculously be cured tomorrow, I would still be in pain for the rest of my life, because my spinal cord is sending constant pain messages to the brain. Because it is "sensitized", normally minorly painful or uncomfortable things (a pinprick) are magnified to very painful, and things that are normally NOT painful, such as a breeze, textured clothing/ sheets, very hot/ cold temps (water or air), even light/heavy touch, are appreciated as painful. I do find I can handle heat - such as ultrasound and hot tubs, hot showers - for short periods of time, while cold just is a killer! But summer heat is getting just as hard to handle as winter cold, which we've had MORE than enough of this year!! :mad:

I've had a 1st rib resection/scalenotomy and a pec minor tenotomy done on the right side. Will probably be heading back for a consult on the left, though I'd hoped to avoid it. I have abnormal EMG's, the neck checks out fine for disk problems and my hand is wasting in the same pattern as the right one. The pain's in all the same places too. :(

I wish you luck in finding what tools work for you. I didn't have good luck with massage for a long time, til I found the people who knew how to give a therapeutic massage, and individualized it to my pain and comfort level. In the right hands, it's a much better alternative than trigger point injections for getting rid of those wicked headaches, although you need massage more frequently to keep the headaches away.

But what works for one may not work for the next, and vice versa - frustrating but true! :rolleyes:

beth

People get mad at me when I post my true feelings about TOS, but I am going to be true to myself.

I feel that neurogenic TOS is not cureable, but we have to find a way to manage it, for both pain, getting along in life, and somehow handling our finances.

I find and believe that it is a progressive, chronic, highly painful condition that is rare, and very little is known by doctors as to the exact nature of the causes (exactly how it happens is still sometimes debated, which it shoudn't be, it's micro compressions and damages over time and / or by one instance), and even less is known in how to treat it, surgically attack it, medicate it, and on and on.

Our goals are to be survivors, to learn all we can and apply it in accordance with our gut, to not allow ourselves to be told something is psychosomatic, etc., when we are sure there is another, real cause(s). Likewise, if our PT hurts, to halt it. And to demand (politely) the proper level of pain care.

If one has TOS, I believe one has probably one of the most, if not the actual most painful conditions known to man, especially if combined with RSD, fibromyalgia or an immune - type illness such as RA, lupus, MS, etc.

We must be brave, and thank GOD for this site and for eachother and never stop praying for a healing while we research constantly for new and possible treatments or cures.