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


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Old 12-03-2014, 08:37 AM #1
booklover booklover is offline
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Default TOS/nerve damage and sleeping position/surfaces – welcome your ideas

Hi to all my long suffering sleep deprived late night companions,

So these are the problems of daily life once taken for granted 20 yrs ago, and now such an enigma I am trying to unravel. Here goes....

I am in the process of transitioning from sleeping in a recliner full time(for the past 3 years) to spending some time sleeping in a bed. I have a background of TOS (bilateral scalenectomies/ rib resections), and CRPS2 (mostly left upper) with bilateral partial brachial plexus injuries (mostly left-sided long thoracic nerve palsy (LTN) and right-sided radial nerve (RN) palsy and ulnar is also affected). The final blow was damage to the right brachial plexus during TOS surgery 3 years ago, that was my partial weight bearing side. Since then I have been unable to tolerate the pressure of sleeping on the mattress/bed in any position without setting off severe burning pain. Sleeping on my back or either side exacerbates pain due to nerve damage and also allodynia /hyperalgesia related to CRPS2 on left side.

Has anyone else noticed they have difficulty sleeping on their back with TOS or long thoracic nerve injury? Any ideas why? I get severe burning around spine, LTN, sweating, abdominal pain and GI/autonomic symptoms, including bad rebound symptoms the next day. Has anyone else tried three-quarter side lying with much success, if so would be interested in knowing how you support your body (and keep pressure off nerves)?

I have been working with two occupational therapists who came up with a recommendations for different pressure care products for me to trial(such as Roho, Sofflex). We are also considering sleeping positions, bed, sleep angle, options for neck support etc.

I’d be really interested in hearing about other people’s experiences with sleeping positions and how you have tried to avoid unwanted positions, affecting the parts where you have nerve damage/injury whilst you're asleep (e.g. not stretching damaged nerves). I would also love to learn about any relevant knowledge ie I noticed someone posted that back sleeping stretches the scalenes.

Thanks
Booklover

Last edited by booklover; 12-03-2014 at 09:06 AM.
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Old 12-03-2014, 01:57 PM #2
Akash Akash is offline
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Akash Akash is offline
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Quote:
Originally Posted by booklover View Post
Hi to all my long suffering sleep deprived late night companions,

So these are the problems of daily life once taken for granted 20 yrs ago, and now such an enigma I am trying to unravel. Here goes....

I am in the process of transitioning from sleeping in a recliner full time(for the past 3 years) to spending some time sleeping in a bed. I have a background of TOS (bilateral scalenectomies/ rib resections), and CRPS2 (mostly left upper) with bilateral partial brachial plexus injuries (mostly left-sided long thoracic nerve palsy (LTN) and right-sided radial nerve (RN) palsy and ulnar is also affected). The final blow was damage to the right brachial plexus during TOS surgery 3 years ago, that was my partial weight bearing side. Since then I have been unable to tolerate the pressure of sleeping on the mattress/bed in any position without setting off severe burning pain. Sleeping on my back or either side exacerbates pain due to nerve damage and also allodynia /hyperalgesia related to CRPS2 on left side.

Has anyone else noticed they have difficulty sleeping on their back with TOS or long thoracic nerve injury? Any ideas why? I get severe burning around spine, LTN, sweating, abdominal pain and GI/autonomic symptoms, including bad rebound symptoms the next day. Has anyone else tried three-quarter side lying with much success, if so would be interested in knowing how you support your body (and keep pressure off nerves)?

I have been working with two occupational therapists who came up with a recommendations for different pressure care products for me to trial(such as Roho, Sofflex). We are also considering sleeping positions, bed, sleep angle, options for neck support etc.

I’d be really interested in hearing about other people’s experiences with sleeping positions and how you have tried to avoid unwanted positions, affecting the parts where you have nerve damage/injury whilst you're asleep (e.g. not stretching damaged nerves). I would also love to learn about any relevant knowledge ie I noticed someone posted that back sleeping stretches the scalenes.

Thanks
Booklover
I have bilateral TOs. I take sleeping pills and sleep on my back. On the side flares up my tos
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booklover (12-03-2014)
Old 08-03-2015, 03:46 AM #3
Akash Akash is offline
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Join Date: Jul 2014
Posts: 330
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Akash Akash is offline
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Posts: 330
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Quote:
Originally Posted by booklover View Post
Hi to all my long suffering sleep deprived late night companions,

So these are the problems of daily life once taken for granted 20 yrs ago, and now such an enigma I am trying to unravel. Here goes....

I am in the process of transitioning from sleeping in a recliner full time(for the past 3 years) to spending some time sleeping in a bed. I have a background of TOS (bilateral scalenectomies/ rib resections), and CRPS2 (mostly left upper) with bilateral partial brachial plexus injuries (mostly left-sided long thoracic nerve palsy (LTN) and right-sided radial nerve (RN) palsy and ulnar is also affected). The final blow was damage to the right brachial plexus during TOS surgery 3 years ago, that was my partial weight bearing side. Since then I have been unable to tolerate the pressure of sleeping on the mattress/bed in any position without setting off severe burning pain. Sleeping on my back or either side exacerbates pain due to nerve damage and also allodynia /hyperalgesia related to CRPS2 on left side.

Has anyone else noticed they have difficulty sleeping on their back with TOS or long thoracic nerve injury? Any ideas why? I get severe burning around spine, LTN, sweating, abdominal pain and GI/autonomic symptoms, including bad rebound symptoms the next day. Has anyone else tried three-quarter side lying with much success, if so would be interested in knowing how you support your body (and keep pressure off nerves)?

I have been working with two occupational therapists who came up with a recommendations for different pressure care products for me to trial(such as Roho, Sofflex). We are also considering sleeping positions, bed, sleep angle, options for neck support etc.

I’d be really interested in hearing about other people’s experiences with sleeping positions and how you have tried to avoid unwanted positions, affecting the parts where you have nerve damage/injury whilst you're asleep (e.g. not stretching damaged nerves). I would also love to learn about any relevant knowledge ie I noticed someone posted that back sleeping stretches the scalenes.

Thanks
Booklover
There was a member here who noted the exact same thing. Per him, LTN would be irritated by pressure on the shoulderblades so he'd sleep with a foam bolster between his shoulders to take the pressure off when sleeping on his back.
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booklover (08-07-2015)
Old 08-03-2015, 11:29 PM #4
jzp119 jzp119 is offline
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jzp119 jzp119 is offline
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Quote:
Originally Posted by booklover View Post
Hi to all my long suffering sleep deprived late night companions,

So these are the problems of daily life once taken for granted 20 yrs ago, and now such an enigma I am trying to unravel. Here goes....

I am in the process of transitioning from sleeping in a recliner full time(for the past 3 years) to spending some time sleeping in a bed. I have a background of TOS (bilateral scalenectomies/ rib resections), and CRPS2 (mostly left upper) with bilateral partial brachial plexus injuries (mostly left-sided long thoracic nerve palsy (LTN) and right-sided radial nerve (RN) palsy and ulnar is also affected). The final blow was damage to the right brachial plexus during TOS surgery 3 years ago, that was my partial weight bearing side. Since then I have been unable to tolerate the pressure of sleeping on the mattress/bed in any position without setting off severe burning pain. Sleeping on my back or either side exacerbates pain due to nerve damage and also allodynia /hyperalgesia related to CRPS2 on left side.

Has anyone else noticed they have difficulty sleeping on their back with TOS or long thoracic nerve injury? Any ideas why? I get severe burning around spine, LTN, sweating, abdominal pain and GI/autonomic symptoms, including bad rebound symptoms the next day. Has anyone else tried three-quarter side lying with much success, if so would be interested in knowing how you support your body (and keep pressure off nerves)?

I have been working with two occupational therapists who came up with a recommendations for different pressure care products for me to trial(such as Roho, Sofflex). We are also considering sleeping positions, bed, sleep angle, options for neck support etc.

I’d be really interested in hearing about other people’s experiences with sleeping positions and how you have tried to avoid unwanted positions, affecting the parts where you have nerve damage/injury whilst you're asleep (e.g. not stretching damaged nerves). I would also love to learn about any relevant knowledge ie I noticed someone posted that back sleeping stretches the scalenes.

Thanks
Booklover
I couldn't live a normal life until I stopped sleeping in beds. First 2 years of TOS I slept in a soft bed and could hardly move my shoulders would hurt so bad. I now sleep on hard wood with an extremely thin pillow flat with my neck completely neutral lying flat on my back. I refuse to sleep in a bed so long as I have TOS, so it's looking like I won't be getting in to one ever again. I would recommend sleeping on the floor! I love it now.
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