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: