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

Other possible diagnosis??

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Unread 02-01-2008, 12:53 PM   #1
KLS2007
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Default Other possible diagnosis??

My doctor told me yesterday that he doesn't think it's TOS because my CT, ultrasound, and EMG all came back negative. He said for me to do some research on my own and bring to him in 2 weeks and maybe we can figure out what's wrong with me. I already have a lot of TOS info and was wondering if anyone knows of any good web sites of conditions that are similar to TOS? BTW, 3 physical therapists think I have TOS despite what the doctor says. Also has anyone had much success with yoga? The doctor recommended that I try yoga classes 3-5 times a week and I'm just not convinced that's a good idea as I can only tolerate very minimal stretching at PT at this point.
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Unread 02-01-2008, 02:41 PM   #2
humorme
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What are your sx?
Yoga has good and bad in it for TOS. I did and still do some Yoga poses/stretches but I know which are okay for me and which are not. Yoga actually helped me start to find stretches and remedies that provided relief. The PT work incorporated many Yoga stretches/poses without even knowing that I do Yoga. Again, listen to your body and IT will tell you what IS or IS NOT good for it. For me OPENING the chest was okay...but anything that required shoulder to bear a load was not good...also anything that would increase the compression was not good...so for example eagle pose is a definite no-no for me. Down Dog requires loading the shoulder...a no-no.
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Unread 02-01-2008, 03:16 PM   #3
KLS2007
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My symptoms are:
constant throbbing pain in right shoulder with random stabbing pains
right arm aches and feels like it just doesn't "fit" right
right hand gets cold with elevation or use
numbness & tingling in right pinky & ring finger
stabbing, burning pain in underarm area
tenderness over clavicle and pec area
scalene muscle has feeling of tightness
headaches that start at back of head & over right side of head
feeling that left side of throat is being "slashed"
dizziness when I move my head
loss of dexterity in right hand
burning pain over scapula
swelling in right hand
color changes in right hand


tests that have been done:
MRI of rotator cuff - normal
cervical xrays - normal
EMG - normal (did not do with arm in positions that cause symptoms)
CT - normal (was done with arm down at side)
ultrasound - normal (the tech who did this had no clue what she was doing, she had a book out and even said she didn't understand how to position me)
shoulder xray - normal

I've had 17 sessions of PT since October and have only been able to tolerate very minimal stretching....chin tucks, shoulder shrugs, that sort of thing.
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Unread 02-01-2008, 04:15 PM   #4
humorme
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It couldn't hurt, IMHO, to try my favorite....get the foam roller lie on it with your butt on one end and your head on the other. Legs bent, feet on floor. Hold stomach in so lower back is somewhat flat against foam roller. Allow shoulders to drape back around the roundness of the roller opening chest. Try some yogic breathing with abs (not chest). If that helps..you have a start to self remedy.
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Unread 02-01-2008, 05:56 PM   #5
kellysf
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Your sxs sure sound a lot like mine. I had left rib resection in 2005 and am worse for it. Like you, I had normal nerve conduction studies, relatively normal cervical MRIs, normal xrays. I did have the 3D MRI/MRA study with Dr. Collins, which showed TOS.

I tried yoga at the beginning of this journey. I liked it for the mental aspect, but I couldn't take all the arm forward and above positions. So I just do abdominal breathing -- often on my foam roller.

Good luck.
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Unread 02-02-2008, 02:51 AM   #6
tshadow
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At this point, I would go to Denver and see two of the three top docs there and get a definitive diagnosis. They see TOS so constantly and so often, that for me, that would stop the merry-go-round, which I was also on, here in So. Cal. And EMG is only worth the skill of the person who does it. Dr. Togut says EMGs aren't even made to test for TOS, the scientific reasons behind that statement are too hard for me to understand but DiMarie has posted it before. So I'd want to be seen, touched and "decided" by one of the top docs.
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Unread 02-02-2008, 04:36 AM   #7
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Default foam roll

Information on the foam roll

There are very different opinions about the use of the foam roll and tos.

I will only give you my experience.

I was fortunate enough to have a session with the physical therapist Dr.Peter Edgelow. He is considered the tos expert of physical therapy.

When my session was over he asked if I wanted to stay and sit in on the sessions of other tos patients(with their permission)

It was very informative.

Peter Edgelow's protocol for thoracic outlet is a very slow and careful progression through some very gentle and unusual exercises.

Before you can progress to the next exercise you must make sure that it is not harming your body.

They way he checks to see if the you are ready for the next exercise is to use a device to check the temperature of your coldest finger before and after you do the exercise.

It's like a biofeedback device only it is an indoor/outdoor thermometer that you can buy at radio shack. It had a long cord that you tape on your finger. It measures the temperature of your finger in a few seconds.

He had this patient who was ready to progress to the next exercise which was the foam roll.

He checked the temperature of her coldest finger with the indoor/outdoor thermometer before using the foam roll and recorded the result.

He next had her use the foam roll with his direction.

Then after she was done he checked the temperature of her coldest finger. It had dropped in temperature several degrees!

It was his conclusion that she was NOT ready to progress to the foam roll. The drop in her finger temperature was a sign that the foam exercise was putting a stress on her body.

Edgelow is very willing to talk to patients and work with physical therapists on what he knows about tos patients.

www.edgelow.com

People with tos are so different, what is ok for one is disasterous for another.

Just my experience.
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Unread 02-02-2008, 09:14 AM   #8
tshadow
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I've never ever heard a doctor to tell me to go get info. for us to discuss.

It just has never happened. They usually have an opinion (right or wrong) made up before they even open up their mouth to me.

None of us are doctors. Even if we were, there'd be the conflict of interest of "working on" oneself...

This doc doesn't sound right to me in the least.
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Unread 02-02-2008, 11:32 AM   #9
KLS2007
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Quote:
Originally Posted by tshadow View Post
At this point, I would go to Denver and see two of the three top docs there and get a definitive diagnosis. They see TOS so constantly and so often, that for me, that would stop the merry-go-round, which I was also on, here in So. Cal. And EMG is only worth the skill of the person who does it. Dr. Togut says EMGs aren't even made to test for TOS, the scientific reasons behind that statement are too hard for me to understand but DiMarie has posted it before. So I'd want to be seen, touched and "decided" by one of the top docs.
I would love to go to Denver but right now that's out of the question financially. Since this all started in early October, I've only received 3 weeks of TTD checks and have already completely wiped out my meager savings. At this point I don't even know how I'm going to be able to pay my rent this month. Maybe someday in the future......
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Unread 02-02-2008, 11:35 AM   #10
KLS2007
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Quote:
Originally Posted by ocgirl View Post
Information on the foam roll

There are very different opinions about the use of the foam roll and tos.

I will only give you my experience.

I was fortunate enough to have a session with the physical therapist Dr.Peter Edgelow. He is considered the tos expert of physical therapy.

When my session was over he asked if I wanted to stay and sit in on the sessions of other tos patients(with their permission)

It was very informative.

Peter Edgelow's protocol for thoracic outlet is a very slow and careful progression through some very gentle and unusual exercises.

Before you can progress to the next exercise you must make sure that it is not harming your body.

They way he checks to see if the you are ready for the next exercise is to use a device to check the temperature of your coldest finger before and after you do the exercise.

It's like a biofeedback device only it is an indoor/outdoor thermometer that you can buy at radio shack. It had a long cord that you tape on your finger. It measures the temperature of your finger in a few seconds.

He had this patient who was ready to progress to the next exercise which was the foam roll.

He checked the temperature of her coldest finger with the indoor/outdoor thermometer before using the foam roll and recorded the result.

He next had her use the foam roll with his direction.

Then after she was done he checked the temperature of her coldest finger. It had dropped in temperature several degrees!

It was his conclusion that she was NOT ready to progress to the foam roll. The drop in her finger temperature was a sign that the foam exercise was putting a stress on her body.

Edgelow is very willing to talk to patients and work with physical therapists on what he knows about tos patients.

www.edgelow.com

People with tos are so different, what is ok for one is disasterous for another.

Just my experience.

That makes a lot of sense. I honestly don't think I'm ready for a foam roll yet, even just using a small towel rolled up is too much for me right now.
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