[rjewels13]

Hello all! I thought it was time to share my experience with PT and how I have improved in the past year!

To make a long story short, I was diagnosed in with Neurogenic TOS in October 2011. Went to see Dr. Thompson in November and had scalene block/pec minor block first visit. Let's just say that in my report from him I had 100% range of motion PRE scalene block/pec minor block. Days later I had ZERO range of motion and couldn't lift my arm in front of, out to the side, or def not above my head.

He wanted me to start PT immediately and I did. In December, my arm was in major pain and on a return visit, I begged for an MRI of the shoulder. He said it was postural and that it was normal with TOS. However, I didn't have a problem moving my arm until the muscle blocks. MRI said I had bursitis which they told me was "nothing". My PT said that bursitis is painful and even though it was "nothing" to the doc, it still causes pain and swelling.

I went to PT 1x per week for 3 months, then 2x per week for 2 months and have been going 1x per month for the past few months. I have made EXTREME progress with PT and I can not praise her enough for helping me. Between stretching exercises, manual therapy, and kineseo tape, I feel lots better!!

I have one problem, though. From springtime until now, I have felt amazing. The weather warmed up and I felt so normal. A cold front came through last weekend and BAM! Muscles are tight again, numbness, cold, and weak in my TOS arm happens again. Do any of you have any experience with cold weather making your symptoms instantly worse? And, if so, what have you done to help with that?

Dr. Thompson suggested I do the supraclavicular decompression surgery plus pectoralis minor tenotomy. I kept talking him out of it and trudging along with PT and I am so glad I did. So for all those of you that are ready to give up, don't!

I hope my story inspires and encourages some of you to keep on trying the conservative route. Personally, I don't ever want to have this surgery! My past experiences with surgery haven't been pleasant b/c my body doesn't heal well. After my hysterectomy I had a wound vac for 15 days. Whatever complications "could" happen, always do for me! Surgery scares me to death especially when I am not guaranteed that I will be healed.

My gut instinct still tells me there's something more than TOS....and it's usually right. Too bad I don't have psychic powers and can figure it out myself. I am going to just continue with PT for as long as I can and avoid doctors and tests b/c I am tired of paying doctor bills for tests that say I'm "healthy".

JD

[Jomar]

Yes!
I get the cooler & damp weather effects too.
I usually spend more time doing stretches , heating pad, IF stim & hot showers to get me going in the mornings. And coffee..with cream & sugar.

If really uncomfortable I use Aleve or/generic naproxen, usually in the evening.
I tend to get some restless leg syndrome once in awhile so it helps for that too.

[chroma]

Yes, being cold can make me worse. Others on these forums have reported the same thing. You are not alone. Aids that have worked for me:

-- hot showers
-- switch to warmer clothes like long sleeves or thicker pants
-- brandy. not kidding
-- hot tea. regular or herbal
-- pacing and squats to warm up from within
-- eat a snack if it's been awhile since I ate
-- heat water and swish in mouth if I don't feel like drinking anything (my jaw can get tight)

I guess we could categorize those as:
-- add warmth (from an external source)
-- create warmth (internally from your body)
-- trap warmth

Basically as someone with TOS, you have to manage your warmth more than a non-TOS person.

HTH

[Iris]

I feel the same as you- I don't do well with surgery and so I am trying to do anything possible to avoid it. I have been having pt twice weekly since may and I am much better. going to have a test that measures blood flow repeated in a few weeks and then back to the surgeon for a re-eval. I also have gotten good relief with using a pillow to rest my arm on while I am working.

Originally Posted by chroma

Yes, being cold can make me worse. Others on these forums have reported the same thing. You are not alone. Aids that have worked for me:

-- hot showers
-- switch to warmer clothes like long sleeves or thicker pants
-- brandy. not kidding
-- hot tea. regular or herbal
-- pacing and squats to warm up from within
-- eat a snack if it's been awhile since I ate
-- heat water and swish in mouth if I don't feel like drinking anything (my jaw can get tight)

I guess we could categorize those as:
-- add warmth (from an external source)
-- create warmth (internally from your body)
-- trap warmth

Basically as someone with TOS, you have to manage your warmth more than a non-TOS person.

HTH

[Woodstock3]

Originally Posted by rjewels13

Hello all! I thought it was time to share my experience with PT and how I have improved in the past year!

To make a long story short, I was diagnosed in with Neurogenic TOS in October 2011. Went to see Dr. Thompson in November and had scalene block/pec minor block first visit. Let's just say that in my report from him I had 100% range of motion PRE scalene block/pec minor block. Days later I had ZERO range of motion and couldn't lift my arm in front of, out to the side, or def not above my head.

He wanted me to start PT immediately and I did. In December, my arm was in major pain and on a return visit, I begged for an MRI of the shoulder. He said it was postural and that it was normal with TOS. However, I didn't have a problem moving my arm until the muscle blocks. MRI said I had bursitis which they told me was "nothing". My PT said that bursitis is painful and even though it was "nothing" to the doc, it still causes pain and swelling.

I went to PT 1x per week for 3 months, then 2x per week for 2 months and have been going 1x per month for the past few months. I have made EXTREME progress with PT and I can not praise her enough for helping me. Between stretching exercises, manual therapy, and kineseo tape, I feel lots better!!

I have one problem, though. From springtime until now, I have felt amazing. The weather warmed up and I felt so normal. A cold front came through last weekend and BAM! Muscles are tight again, numbness, cold, and weak in my TOS arm happens again. Do any of you have any experience with cold weather making your symptoms instantly worse? And, if so, what have you done to help with that?

Dr. Thompson suggested I do the supraclavicular decompression surgery plus pectoralis minor tenotomy. I kept talking him out of it and trudging along with PT and I am so glad I did. So for all those of you that are ready to give up, don't!

I hope my story inspires and encourages some of you to keep on trying the conservative route. Personally, I don't ever want to have this surgery! My past experiences with surgery haven't been pleasant b/c my body doesn't heal well. After my hysterectomy I had a wound vac for 15 days. Whatever complications "could" happen, always do for me! Surgery scares me to death especially when I am not guaranteed that I will be healed.

My gut instinct still tells me there's something more than TOS....and it's usually right. Too bad I don't have psychic powers and can figure it out myself. I am going to just continue with PT for as long as I can and avoid doctors and tests b/c I am tired of paying doctor bills for tests that say I'm "healthy".

JD

Great to hear about another person who has been able to avoid surgery thru PT and other measures. What credentials does the PT have - did they have experience with TOS? Can you elaberate more on methods that were used. I am in the process of looking for a competent PT in the hopes that I can avoid surgery. Thanks for sharing your experience! Another bright spot...

[Anne4tos]

I've had success with PT, but it's been PT that all my TOS experts would not have prescribed for me. I came to the conclusion that if something isn't working, even though the Doctors have told me to do it, get off that train and hop on to something else!

I've regained a fair amount of function through myofascial release, but I've come to the point where I need strengthening and neuro-muscular re-education. I met a PT, who I'm working with now in conjunction with my myofascial PT, to help retrain my muscles. Where he differs from ANYONE else I have met through this arduous process is he is "militant" (originally used the word a-nal but it got censored) about what the rest of my body is doing when I'm given an exercise. Many others have given me wall angels, dead bug and other scapula work and I've had no success. In contrast, this PT cares about what my arms are doing during the exercises, but more importantly, everything from my pelvic floor to the top of my head MUST be stable and multiple things need to be going on (ie. breathing correctly, pelvic floor engaged, etc) before I move my arms. When this happens, I can move without negative repercussions, because the correct muscles are doing the work. When I use the correct muscles, the tension literally melts from my neck.

The negative/positive of being able to increase function is experiencing a lot of problems with my lower back (a previous injury to TOS). I'm not stable because of compensation and spending years unable to do much of anything. Before, I couldn't cook. Now I can throw dinner parties. Before I couldn't go to a store and buy a plant. Now I can buy the plant and dig a hole for it in the garden. All of this twisting and turning is something my body is not use to and the correct muscles are not firing to support me. My homework for the week is to get these muscles sparked up and engaged.

From my experience, I have yet to meet a PT who has all the talents needed to treat TOS wrapped up in one package. You need a team. I don't think you read a lot of success stories about TOS PT, because the time and financial toll to amass a team is daunting. Keeping positive and knowing a door will always open is my answer to this syndrome.

[Jomar]

So true.
Often it is THE person (PT, DC, or DO or other) that makes the difference not the letters after their name or any set PT protocol/ideas. Some are just very good at seeing/knowing what we need and communicating that also.

Some can be lax about following up, correct positioning and just let you muddle thru and you won't be improving at all , just paying for the time...that is a waste! Those are the ones you run away from.


Each of us has our own variation of TOS and /or other issues, so the whole person needs to be looked at and the "plan" adjusted as needed.
I always got questioned at the start of every session as to how I was feeling since the previous session, and they adjusted up or backed off if needed.

Some can only help to a point , then you need to move on to another and so on. After you go thru a few PTs you will learn who is good for you and who is not a fit. Plus reading other experiences helps too.

Plus much " homework" many x's a day between sessions.

[vthomas]

SO I have a question for y'all...
Since you guys have been successful and I am just starting in the process of PT and I refuse to even let the option of surgery come into play. My PT has lots of TOS experience but says I have the worse flares he has ever seen especially for my age I am only 24. We can't even get to working my muscles my nerves are so inflamed and tight. Did any of y'all start at this point? I need some hope because right now I am more than a little frustrated, the only thing that keeps me going back is the fact that my PT has really warm hands and he can work my arms to the point that I can move them comfortably for about an hour than I am back to square one. And he's hot.
~Tory

[nospam]

Originally Posted by vthomas

SO I have a question for y'all...
Since you guys have been successful and I am just starting in the process of PT and I refuse to even let the option of surgery come into play. My PT has lots of TOS experience but says I have the worse flares he has ever seen especially for my age I am only 24. We can't even get to working my muscles my nerves are so inflamed and tight. Did any of y'all start at this point?

I was where you were earlier this year. I had a cervical fusion surgery last year and I did not want any more surgery!

Like you, I became so inflamed and tight that therapy was not helping. When I started getting even worse from therapy, I found therapists who specialized in TOS and keeping folks out of surgery (Drs. Ando & Spousa). Unfortunately, they were not able to improve me (my 1st rib would not budge) and surgery became my last resort.

When I started consulting vascular surgeons, I learned that I had arterial compression in the stick-em-up position and venous compression with my arms overhead (positions I had been exercising in recovering from my cervical fusion). In surgery, the surgeon found that the costoclavicular space was extremely narrow. I had a ton of scar tissue and the brachial plexus was actually fused to the rib and had to be surgically separated and repaired (neurolysis). No amount of conservative treatment would have reversed this. I am getting back to my normal self because of both surgery and therapy.

My point to this long post is that avoiding surgery at all costs is the right approach. However, sometimes surgery is necessary and you need to do your due diligence regarding your condition and explore all avenues. You have to be your own advocate in researching and navigating this journey. Every case of TOS is unique in some or many ways, so you can't simply follow someone else's path.

[chroma]

Originally Posted by Anne4tos

... I met a PT, who I'm working with now in conjunction with my myofascial PT, to help retrain my muscles. Where he differs from ANYONE else I have met through this arduous process is he is "militant" (originally used the word a-nal but it got censored) about what the rest of my body is doing when I'm given an exercise. Many others have given me wall angels, dead bug and other scapula work and I've had no success. In contrast, this PT cares about what my arms are doing during the exercises, but more importantly, everything from my pelvic floor to the top of my head MUST be stable and multiple things need to be going on (ie. breathing correctly, pelvic floor engaged, etc) before I move my arms. When this happens, I can move without negative repercussions, because the correct muscles are doing the work. When I use the correct muscles, the tension literally melts from my neck.
...

Would you care to name these PTs and their locations (city, state) for the benefit of others? (Or maybe you have in other threads and I missed it.)