Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 10-28-2013, 06:53 PM #1
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Default My TOS success story

This is my first post on any forum regarding my experiences of the past 15 months. I hope that it will help others find the answers to their health questions and possibly let them consider a path that may provide relief for their symptoms.

In July of 2012 I experienced strange nerve sensations: tingling tops of forearms (symmetrical), buzzing tops of feet (symmetrical), tingling cheeks (symmetrical), random bee sting sensations, random muscle twitchiness, electric shock sensations in arms, intense charlie horse-type aches in right triceps (would last for 10 days at a time), lump in throat sensation, tingling on backs of hands, tingling in fingertips, tingling in tips of toes, among other symptoms. Some of the symptoms would shift around every few days, others would just linger.

I had a brain MRI which showed white spots which led my family doctor to diagnose me with MS. I was emotionally rocked by this diagnosis. I then saw a neurologist who, after examining me doubted the MS diagnosis. He re-ordered a brain and spinal MRI with contrast and over-ruled the MS diagnosis. He said some people just have white spots and it doesn't mean MS - and I'm one of them. He said that I had irritated nerves for whatever reason. He hoped the symptoms would fade.

Over the next 6 months I saw him every 6 weeks or so. My symptoms had not improved and I was kind of obsessed that I may in fact have MS. Each time he assured me I did not.

At one point he prescribed Klonopin which I took and it completely fixed my strange nerve sensations. I was a new person, but I did not want to become dependent on Klonopin, so after two weeks I started to ween myself off. The symptoms came back. The neuro suggested that perhaps anxiety over my initial MS diagnosis was driving some of my nerve problems. As unlikely as this sounded, I was willing to consider it. For the next 5 months I was determined to try to just ignore my symptoms and rewire my brain.

It didn't work. Finally in June of 2013 I was in the midst of an intense flare up and could not find relief for my deep and saturating right arm pain. Out of exasperation I sat down on the floor on my knees and curled up like a bug with my forehead on the ground and my arms curled in, fists by my chin. I was astonished that my arm pain vanished. I sat up and my pain returned. I laid down and it went away. It was a major breakthrough!

I did some research and learned about TOS. I went back to the neuro and told him I thought I had TOS. I have the classic slumping posture, head and neck forward, broke both collar bones when I was little, very little shoulder flexibility, hands go numb when I hold them above my head in yoga, etc. I tested positive for TOS and started PT.

The PT sessions have involved stretching everywhere but my shoulders. Spinal twists, hamstring stretches, side bends, cobra, and other exercises have loosened up tight areas in my core, creating more slack for my nerves in my collar bone areas. Directly working on my spine with foam rollers was too intense and caused flare ups that lasted 3-4 days.

Five months later, I experience a mild flare up only once a week that lasts 24 hours. Most of the time I now feel 100 percent. I feel very fortunate. My flare ups pretty much always are triggered by sitting in a theater watching a play, or sitting in a movie theater, or sitting on the sofa. In those scenarios my right arm starts to ache and I can't get relief as long as I'm stuck in a chair. Eventually the right arm aches lead to cheek tingling, feet buzzing, and so on.

I had been an active weight-lifter for the last 20 years. I had been doing lots of yoga throughout the past year thinking it was helping my symptoms. It turns out that with my limited spine flexibility, yoga was actually exacerbating my problems. All of the arm-lifting and down dogs were putting pressure on my TOS nerves.

I have not exercised or done yoga in 5 months. My muscles have atrophied and my flexibility has greatly increased. I miss my muscles but I don't miss my pain.

Had I remained on the Klonopin which masked my nerve pain my symptoms would probably have worsened. I feel very fortunate to have solved this health puzzle.

For all those with nerve issues, researching online can certainly be a blessing and a curse. I was heading down many dark roads before I discovered TOS and eventually diagnosed myself. I hope others on this board find relief for their problems and are able to return to their lives.

Peace.
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Old 10-29-2013, 01:09 AM #2
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Originally Posted by piano1 View Post
This is my first post on any forum regarding my experiences of the past 15 months. I hope that it will help others find the answers to their health questions and possibly let them consider a path that may provide relief for their symptoms.

In July of 2012 I experienced strange nerve sensations: tingling tops of forearms (symmetrical), buzzing tops of feet (symmetrical), tingling cheeks (symmetrical), random bee sting sensations, random muscle twitchiness, electric shock sensations in arms, intense charlie horse-type aches in right triceps (would last for 10 days at a time), lump in throat sensation, tingling on backs of hands, tingling in fingertips, tingling in tips of toes, among other symptoms. Some of the symptoms would shift around every few days, others would just linger.

I had a brain MRI which showed white spots which led my family doctor to diagnose me with MS. I was emotionally rocked by this diagnosis. I then saw a neurologist who, after examining me doubted the MS diagnosis. He re-ordered a brain and spinal MRI with contrast and over-ruled the MS diagnosis. He said some people just have white spots and it doesn't mean MS - and I'm one of them. He said that I had irritated nerves for whatever reason. He hoped the symptoms would fade.

Over the next 6 months I saw him every 6 weeks or so. My symptoms had not improved and I was kind of obsessed that I may in fact have MS. Each time he assured me I did not.

At one point he prescribed Klonopin which I took and it completely fixed my strange nerve sensations. I was a new person, but I did not want to become dependent on Klonopin, so after two weeks I started to ween myself off. The symptoms came back. The neuro suggested that perhaps anxiety over my initial MS diagnosis was driving some of my nerve problems. As unlikely as this sounded, I was willing to consider it. For the next 5 months I was determined to try to just ignore my symptoms and rewire my brain.

It didn't work. Finally in June of 2013 I was in the midst of an intense flare up and could not find relief for my deep and saturating right arm pain. Out of exasperation I sat down on the floor on my knees and curled up like a bug with my forehead on the ground and my arms curled in, fists by my chin. I was astonished that my arm pain vanished. I sat up and my pain returned. I laid down and it went away. It was a major breakthrough!

I did some research and learned about TOS. I went back to the neuro and told him I thought I had TOS. I have the classic slumping posture, head and neck forward, broke both collar bones when I was little, very little shoulder flexibility, hands go numb when I hold them above my head in yoga, etc. I tested positive for TOS and started PT.

The PT sessions have involved stretching everywhere but my shoulders. Spinal twists, hamstring stretches, side bends, cobra, and other exercises have loosened up tight areas in my core, creating more slack for my nerves in my collar bone areas. Directly working on my spine with foam rollers was too intense and caused flare ups that lasted 3-4 days.

Five months later, I experience a mild flare up only once a week that lasts 24 hours. Most of the time I now feel 100 percent. I feel very fortunate. My flare ups pretty much always are triggered by sitting in a theater watching a play, or sitting in a movie theater, or sitting on the sofa. In those scenarios my right arm starts to ache and I can't get relief as long as I'm stuck in a chair. Eventually the right arm aches lead to cheek tingling, feet buzzing, and so on.

I had been an active weight-lifter for the last 20 years. I had been doing lots of yoga throughout the past year thinking it was helping my symptoms. It turns out that with my limited spine flexibility, yoga was actually exacerbating my problems. All of the arm-lifting and down dogs were putting pressure on my TOS nerves.

I have not exercised or done yoga in 5 months. My muscles have atrophied and my flexibility has greatly increased. I miss my muscles but I don't miss my pain.

Had I remained on the Klonopin which masked my nerve pain my symptoms would probably have worsened. I feel very fortunate to have solved this health puzzle.

For all those with nerve issues, researching online can certainly be a blessing and a curse. I was heading down many dark roads before I discovered TOS and eventually diagnosed myself. I hope others on this board find relief for their problems and are able to return to their lives.

Peace.
I'm interested in the symptoms in your feet--how did they relate them to tos? Thanks
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Old 10-29-2013, 09:08 AM #3
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Originally Posted by abegins View Post
I'm interested in the symptoms in your feet--how did they relate them to tos? Thanks
The theory for my symptoms that so far is making sense is this:

The irritation in the nerves in my right arm caused by TOS flares up my whole nervous system. All of the other secondary nerve buzzing, tingling, twitching, etc. are symmetrical. The deep, saturating aches in my right arm are only in my right arm.

The right arm aches are almost always the first sign of trouble for me. If I don't immediately change my posture, do some of my PT stretches, move around in some new ways, etc. I can be assured that soon my cheeks will tingle, both forearms will tingle, the tops of my feet will burn, the arches of my feet will twitch, and so on.

When my right arm starts to hurt and I am able to diffuse it before it really gets going, my other symptoms never happen.

Scenarios pop up that routinely confirm the mechanical nerve issues I have. The other day, I was sitting on the sofa leaning toward my right side, a position that can cause me trouble. I started to feel the familiar "charlie horse" type of pinpoint aching in my right triceps. I noticed that if I bent my head and tipped my right ear down to my right shoulder the pain vanished (when I created slack in the nerves). If I tipped my left ear to my left shoulder, my right triceps pain returned (when I put more stress and stretching on the nerve). I could turn the pain on and off, on and off, over and over again by tipping my head back and forth. Pretty interesting.

I did some right arm nerve gliding exercises followed my some torso/spinal twists. I returned to the same seated position and tried to activate my pain again with my head position. I could not. The stretches freed up whatever impingement was going on.
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Old 11-13-2013, 02:14 AM #4
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Can you describe the torso twisting stretches that your PT had you doing?
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Old 11-13-2013, 10:22 AM #5
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Can you describe the torso twisting stretches that your PT had you doing?
1. Sit upright, hands on chest with elbows flared out. Twist as far as possible to the right (including head) and hold for 10 seconds. Rest, then do it again. Rest, then repeat for other side. 3 sets. My upper spine was very inflexible and this help loosen me up. Working on that part of my spine more directly by lying on a foam roller sent me into flare ups that would last for days. This twisting stretch was more indirect but very effective. I could not lift my arms very straight vertically, but after performing this stretch my vertical arm reach dramatically improved.

2. Sit upright. Hands clasped behind head, elbows flared out. Perform side bend to right (really feel left obliques and lats stretch), hold for 10 seconds. Rest, then do it again. Rest, then repeat for other side. 3 sets. My vertical arm reach again improved dramatically with this stretch.

3. Low cobra stretch on the floor. Include twisting cobra stretches where you try to lift one shoulder up as high as possible off the ground. Then the other.

Here's the weirdest part of the routine: My body had a lot of imbalances, one side could usually stretch further than the other. After checking both sides, we would always work the good side, stretching the most flexible side first. When we would get to the bad side, for some reason the stretching on the good side greatly improved the bad side immediately. It astonishes me every single time that the bad side would improve before actually stretching it directly.
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Old 11-13-2013, 06:54 PM #6
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1. Sit upright, hands on chest with elbows flared out. Twist as far as possible to the right (including head) and hold for 10 seconds. Rest, then do it again. Rest, then repeat for other side. 3 sets. My upper spine was very inflexible and this help loosen me up. Working on that part of my spine more directly by lying on a foam roller sent me into flare ups that would last for days. This twisting stretch was more indirect but very effective. I could not lift my arms very straight vertically, but after performing this stretch my vertical arm reach dramatically improved.

2. Sit upright. Hands clasped behind head, elbows flared out. Perform side bend to right (really feel left obliques and lats stretch), hold for 10 seconds. Rest, then do it again. Rest, then repeat for other side. 3 sets. My vertical arm reach again improved dramatically with this stretch.

3. Low cobra stretch on the floor. Include twisting cobra stretches where you try to lift one shoulder up as high as possible off the ground. Then the other.

Here's the weirdest part of the routine: My body had a lot of imbalances, one side could usually stretch further than the other. After checking both sides, we would always work the good side, stretching the most flexible side first. When we would get to the bad side, for some reason the stretching on the good side greatly improved the bad side immediately. It astonishes me every single time that the bad side would improve before actually stretching it directly.
I don't have any luck with the foam rollers either. The joint mobility exercises that I do involve a lot of twisting and rotational movements. They work really well for me.
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Old 11-13-2013, 08:43 PM #7
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Originally Posted by piano1 View Post
This is my first post on any forum regarding my experiences of the past 15 months. I hope that it will help others find the answers to their health questions and possibly let them consider a path that may provide relief for their symptoms.

In July of 2012 I experienced strange nerve sensations: tingling tops of forearms (symmetrical), buzzing tops of feet (symmetrical), tingling cheeks (symmetrical), random bee sting sensations, random muscle twitchiness, electric shock sensations in arms, intense charlie horse-type aches in right triceps (would last for 10 days at a time), lump in throat sensation, tingling on backs of hands, tingling in fingertips, tingling in tips of toes, among other symptoms. Some of the symptoms would shift around every few days, others would just linger.

I had a brain MRI which showed white spots which led my family doctor to diagnose me with MS. I was emotionally rocked by this diagnosis. I then saw a neurologist who, after examining me doubted the MS diagnosis. He re-ordered a brain and spinal MRI with contrast and over-ruled the MS diagnosis. He said some people just have white spots and it doesn't mean MS - and I'm one of them. He said that I had irritated nerves for whatever reason. He hoped the symptoms would fade.

Over the next 6 months I saw him every 6 weeks or so. My symptoms had not improved and I was kind of obsessed that I may in fact have MS. Each time he assured me I did not.

At one point he prescribed Klonopin which I took and it completely fixed my strange nerve sensations. I was a new person, but I did not want to become dependent on Klonopin, so after two weeks I started to ween myself off. The symptoms came back. The neuro suggested that perhaps anxiety over my initial MS diagnosis was driving some of my nerve problems. As unlikely as this sounded, I was willing to consider it. For the next 5 months I was determined to try to just ignore my symptoms and rewire my brain.

It didn't work. Finally in June of 2013 I was in the midst of an intense flare up and could not find relief for my deep and saturating right arm pain. Out of exasperation I sat down on the floor on my knees and curled up like a bug with my forehead on the ground and my arms curled in, fists by my chin. I was astonished that my arm pain vanished. I sat up and my pain returned. I laid down and it went away. It was a major breakthrough!

I did some research and learned about TOS. I went back to the neuro and told him I thought I had TOS. I have the classic slumping posture, head and neck forward, broke both collar bones when I was little, very little shoulder flexibility, hands go numb when I hold them above my head in yoga, etc. I tested positive for TOS and started PT.

The PT sessions have involved stretching everywhere but my shoulders. Spinal twists, hamstring stretches, side bends, cobra, and other exercises have loosened up tight areas in my core, creating more slack for my nerves in my collar bone areas. Directly working on my spine with foam rollers was too intense and caused flare ups that lasted 3-4 days.

Five months later, I experience a mild flare up only once a week that lasts 24 hours. Most of the time I now feel 100 percent. I feel very fortunate. My flare ups pretty much always are triggered by sitting in a theater watching a play, or sitting in a movie theater, or sitting on the sofa. In those scenarios my right arm starts to ache and I can't get relief as long as I'm stuck in a chair. Eventually the right arm aches lead to cheek tingling, feet buzzing, and so on.

I had been an active weight-lifter for the last 20 years. I had been doing lots of yoga throughout the past year thinking it was helping my symptoms. It turns out that with my limited spine flexibility, yoga was actually exacerbating my problems. All of the arm-lifting and down dogs were putting pressure on my TOS nerves.

I have not exercised or done yoga in 5 months. My muscles have atrophied and my flexibility has greatly increased. I miss my muscles but I don't miss my pain.

Had I remained on the Klonopin which masked my nerve pain my symptoms would probably have worsened. I feel very fortunate to have solved this health puzzle.

For all those with nerve issues, researching online can certainly be a blessing and a curse. I was heading down many dark roads before I discovered TOS and eventually diagnosed myself. I hope others on this board find relief for their problems and are able to return to their lives.

Peace.
It's a comfort to hear you found the answer to your pain, and that you have a better outcome than MS! It gives me hope! :-) I will be researching TOS!
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Old 11-14-2013, 02:35 PM #8
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It's a comfort to hear you found the answer to your pain, and that you have a better outcome than MS! It gives me hope! :-) I will be researching TOS!
Yes. My brief walk down the MS road has given me a profound sense of empathy for anyone dealing with that disease. Just yesterday, I read an article about a race car driver who was just diagnosed and I felt so deeply for him.

Nerve issues are so hard to figure out. My neuro at one point told me that unless the symptoms and tests match well against some well-established profiles like MS or Parkinson's, a lot of times they just don't know enough to figure out what is happening exactly.
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Old 11-14-2013, 03:11 PM #9
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Glad you figured out everything for you. I also have TOS and experience some of the positional situation you talk about. I also do have MS for over 10 years and sometimes wonder if somehow they are related. I having been doing so much better over the last year when I figured out what works best for me.
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Old 11-20-2013, 03:34 PM #10
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1. Sit upright, hands on chest with elbows flared out. Twist as far as possible to the right (including head) and hold for 10 seconds. Rest, then do it again. Rest, then repeat for other side. 3 sets. My upper spine was very inflexible and this help loosen me up. Working on that part of my spine more directly by lying on a foam roller sent me into flare ups that would last for days. This twisting stretch was more indirect but very effective. I could not lift my arms very straight vertically, but after performing this stretch my vertical arm reach dramatically improved.
This sounds great. I'll add it to my routine.

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2. Sit upright. Hands clasped behind head, elbows flared out. Perform side bend to right (really feel left obliques and lats stretch), hold for 10 seconds. Rest, then do it again. Rest, then repeat for other side. 3 sets. My vertical arm reach again improved dramatically with this stretch.
For anyone who has problems with putting their arms overhead, there is a variation of this called the "crescent stretch". You lie down on your back and then put your arms overhead (but they are parallel to your body and the floor, not up in the air) and then curve your body by bringing your feet and hands to the same side.

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3. Low cobra stretch on the floor. Include twisting cobra stretches where you try to lift one shoulder up as high as possible off the ground. Then the other.
What do you mean by "low"? Do you mean the variation where you are on your elbows instead of your hands? Or something else?

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Here's the weirdest part of the routine: My body had a lot of imbalances, one side could usually stretch further than the other. After checking both sides, we would always work the good side, stretching the most flexible side first. When we would get to the bad side, for some reason the stretching on the good side greatly improved the bad side immediately. It astonishes me every single time that the bad side would improve before actually stretching it directly.
That's very interesting. I'll share with my chiro whose very knowledgeable and see if he has anything to add about how this works.

Thanks for your detailed response!
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