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    Old 04-23-2009, 08:12 AM   #1
    Titennek2breath
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    Breathing difficulties

    Can anyone explain how it is neccessary to tighten my neck brace (which I have to wear at all times) to enable me to breath when this should cause me to choke. When the neck brace is released, choking and breathing problems occur, including problems with speaking and swallowing. I have cervical damage to several points on my spinal cord. I would be grateful to have any answers you may have to this question I have had for eight and a half years. This puzzles any of the neurologists and others who I see along with the parasympathetic (+ RSD) damage which I have also.

    Thankyou!

     
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    Old 04-23-2009, 01:03 PM   #2
    Lynnetter
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    Re: Breathing difficulties

    Quote:
    Originally Posted by Titennek2breath View Post
    Can anyone explain how it is neccessary to tighten my neck brace (which I have to wear at all times) to enable me to breath when this should cause me to choke. When the neck brace is released, choking and breathing problems occur, including problems with speaking and swallowing. I have cervical damage to several points on my spinal cord. I would be grateful to have any answers you may have to this question I have had for eight and a half years. This puzzles any of the neurologists and others who I see along with the parasympathetic (+ RSD) damage which I have also.

    Thankyou!

     
    Old 04-23-2009, 01:07 PM   #3
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    Re: Breathing difficulties

    I am not an expert--and if it baffles the Drs who am I?--but just a thought, the phrenic nerve is from C3-4--is there some instability there? The phrenic nerve goes to the diaphragm and is responsible for respiration

    Sounds like you have been in the brace a long time, even with my short time in the brace, I feel "funny" when I first take it off to shower--more light headed.

    Have you tried working with a respiratory therapist for breathing exercises and weaning from your collar?

     
    Old 04-24-2009, 09:30 AM   #4
    Titennek2breath
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    Re: Breathing difficulties

    Quote:
    Originally Posted by Lynnetter View Post
    I am not an expert--and if it baffles the Drs who am I?--but just a thought, the phrenic nerve is from C3-4--is there some instability there? The phrenic nerve goes to the diaphragm and is responsible for respiration

    Sounds like you have been in the brace a long time, even with my short time in the brace, I feel "funny" when I first take it off to shower--more light headed.

    Have you tried working with a respiratory therapist for breathing exercises and weaning from your collar?
    Thank you for your explanation and good advice, which I will take up.

    Regards,

    Vince

     
    Old 04-25-2009, 09:35 AM   #5
    Lynnetter
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    Re: Breathing difficulties

    Hi--got your request for friend, don't know how it works. Have you worked with breathing exercises. If you have RSD there is an imbalance with the autonomic nervous system--which can be affecting the breathing. Breathing also comes from the brain stem--do you have any compression from the upper areas?

     
    Old 04-25-2009, 09:51 AM   #6
    Titennek2breath
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    Re: Breathing difficulties

    Quote:
    Originally Posted by Lynnetter View Post
    Hi--got your request for friend, don't know how it works. Have you worked with breathing exercises. If you have RSD there is an imbalance with the autonomic nervous system--which can be affecting the breathing. Breathing also comes from the brain stem--do you have any compression from the upper areas?
    Thank you very much. Oh, I do have RSD and parasympathetic problem too. I am still confused as to why I need pressure on my neck and not release the pressure to enable me to breathe. As to friendship, I am not sure either.
    Thank you very much.

    Vince

     
    Old 04-26-2009, 08:40 AM   #7
    feelbad
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    Re: Breathing difficulties

    not taking in all the other things that you have there(i too have damage to my symp and RSD along with cord damage) the mere fact that you have been wearing that brace for so very long,the muscle there would not be stable at all. too much time with not using any muscle, it just atrophys away pretty quickly too. the muscles under where your collar is are probably in desperate need of an in depth type of rehab program. another thing that can occur when you are wearing that type of brace very tightly around your neck, and for so long, is it DOES create a bit of 'traction" to a certain degree so while everything is nice and tight, everything stays normal with your breathing and everything else, but when that collar is removed, the vertebrae settle back on themselves again(could be affecting nerve or cord). you could have some level of endplate issues meaning the discs have kind of seperated a bit over time kind of thing? this could also affect the cord to a certain degree as well. "something" within that c spine area would have to also be unstable in some way just to even affect your breathing when that collar is removed. it is when the 'stability" is there, everything is fine, but taken away, its not kind of thing?

    just exactly where is your RSD located? how severe is it?

    i would seriously discuss with your docs about trying like heck to regain just that muscle stability again so you could possibly just ween off having to even use it anymore,you know what i mean? have you had a more recent MRI of that c spine area just to really see how everything "looks" in there? it would really be interesting if they could actually do one MRI with that collar on and one with it off, just to really see how much real traction is being placed upon those vertebre up there. but i really DO think a big part of underlying problem is more than likely massive muscle loss,among other factors. this is what i would look into the most right now. marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

    Last edited by feelbad; 04-26-2009 at 08:42 AM.

     
    Old 04-26-2009, 10:00 AM   #8
    Titennek2breath
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    Re: Breathing difficulties

    Quote:
    Originally Posted by feelbad View Post
    not taking in all the other things that you have there(i too have damage to my symp and RSD along with cord damage) the mere fact that you have been wearing that brace for so very long,the muscle there would not be stable at all. too much time with not using any muscle, it just atrophys away pretty quickly too. the muscles under where your collar is are probably in desperate need of an in depth type of rehab program. another thing that can occur when you are wearing that type of brace very tightly around your neck, and for so long, is it DOES create a bit of 'traction" to a certain degree so while everything is nice and tight, everything stays normal with your breathing and everything else, but when that collar is removed, the vertebrae settle back on themselves again(could be affecting nerve or cord). you could have some level of endplate issues meaning the discs have kind of seperated a bit over time kind of thing? this could also affect the cord to a certain degree as well. "something" within that c spine area would have to also be unstable in some way just to even affect your breathing when that collar is removed. it is when the 'stability" is there, everything is fine, but taken away, its not kind of thing?

    just exactly where is your RSD located? how severe is it?

    i would seriously discuss with your docs about trying like heck to regain just that muscle stability again so you could possibly just ween off having to even use it anymore,you know what i mean? have you had a more recent MRI of that c spine area just to really see how everything "looks" in there? it would really be interesting if they could actually do one MRI with that collar on and one with it off, just to really see how much real traction is being placed upon those vertebre up there. but i really DO think a big part of underlying problem is more than likely massive muscle loss,among other factors. this is what i would look into the most right now. marcia
    Thanks for this reply!

    RSD is located on my hands, head and body, but not severe, as I lack signifigant feeling! Unsure whether my RSD may have caused my recent strokes (is this possible).

    I had an MRI about three years ago. I have tried removing the neck brace, but at that point I can't breath. I need to have the neck brace extremely tight to breath at all- no fear of strangulation!! When it is removed, my right lung barks and causes severe secondary physical trauma for 5 days. Happened 9 times. Can't figure out why this is the case, big puzzle.

    Last edited by Titennek2breath; 04-26-2009 at 10:03 AM.

     
    Old 04-27-2009, 08:26 AM   #9
    feelbad
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    Re: Breathing difficulties

    i am just wondering what placed you in that collar in the very first place? did you have a c spine surgery that required it or what? if you did indeed have a c spine surgery,how bad were things for you pre op and what prompted it,any real cord contact?

    who actually dxed you RSD, what type of doc and what symptoms of RSD are you having or have had? do you know just where(location) exactly your sympathetic was damaged? mine for instance was within my cord when they "hit" it and really messed it up, which you already know just causes a host of insane symptoms and changes in your body. sorry for all the questions but it really would help to know this stuff in order to try and help you. Marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 04-27-2009, 10:10 AM   #10
    Titennek2breath
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    Re: Breathing difficulties

    Cetainly - I will try to explain.
    I twisted the upper part of my body when I fell in a roadworks and subsequent movement of my arms or turning of my neck exacerbates my neck problem.

    I am tetraplegic/quadraplegic with little feeling below top half of my neck and restricted movement both physically and timewise. I have no movement of my arms sideways nor vertically in forward direction at elbows nor individual finger movement vertically either and they tire easily too - I have tried many and highest doses of pain killers to move all parts of my body at beginning but ended up bed-ridden for my efforts with very little movement anywhere so I have to restrict my movement a little. My left thumb moves sideways and right thumb moves in all directions. The RSD developed quite soon and my pulses have been confirmed missing around body by cardio-vascular team especially to legs - cold and signs of lack of nutrients. Parasympathetic damage seems to leave my legs up for approx. 10 minutes after lifted.

    Thank you for your interest and helpful suggestions which I am already investigating but our NHS is limited. Please ask more if useful to you.

    Kind regards

    Vince

     
    Old 04-27-2009, 10:30 AM   #11
    Lynnetter
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    Re: Breathing difficulties

    Hi Vince--

    you have had significant damage--sounds like the collar preserves any stability to your spine you have. Access to good rehabilitation is key--and all systems have limits. Do they ever have respiratory or physical therapy work with you--to build your tolerance in different positions--this sounds like what is needed. Can you work with some breath work--even by a hypnosis tape--would not be out of the collar without a medical person in the room. Do you know what level injury --may give an idea. Is there another forum on here for more involved spinal cord injury for you--this one is for people that are not as involved--you might get better advice there.

    Take care

     
    Old 04-28-2009, 04:15 AM   #12
    Titennek2breath
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    Re: Breathing difficulties

    Quote:
    Originally Posted by Lynnetter View Post
    Hi Vince--

    you have had significant damage--sounds like the collar preserves any stability to your spine you have. Access to good rehabilitation is key--and all systems have limits. Do they ever have respiratory or physical therapy work with you--to build your tolerance in different positions--this sounds like what is needed. Can you work with some breath work--even by a hypnosis tape--would not be out of the collar without a medical person in the room. Do you know what level injury --may give an idea. Is there another forum on here for more involved spinal cord injury for you--this one is for people that are not as involved--you might get better advice there.

    Take care
    Hi Lyn,

    Thanks for advice - will try to follow it ASAP. I would like to know what level is your injury and do you have RSD or sympathetic injuries.

    Regards

    Vince

     
    Old 04-28-2009, 10:01 AM   #13
    Lynnetter
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    Re: Breathing difficulties

    Hi Vince--what I have is a piece of cake compared to what you have going on. They call myelopathy a spinal cord injury--the most common--but rarely does it cause paralysis--unless undetected and then you get injured.

    I had a congenital (at birth) fusion of C3-4. Then I have been in about 7 car accidents, not my fault. 2 cars were totaled, and one I was sitting on a bus bench and a car jumped the curb, hitting me and sending me into the intersection. I was young and mainly fractured my right leg, some ribs, and 3rd degree sprains of both ankles.

    Over time the bones compressed--and what sent me to the Dr was right leg burning pain (set off by neck positions, not low back). I knew I had an ugly neck on X-ray--they did MRI's and found C4-5 and 5-6 were compressing the spinal cord and there was some cord damage from the compression. Also with bending my neck there was some movemnt at C4 and C7. No neck pain, but progressing weakness and spasticity in my left arm and leg.

    Don't know if the RSD caused the strokes--but the sympathetic nervous system is involved--affects the blood flow and blood to the nerves--thus pain and circulation are affected. Are you on meds for this--do the meds also contribute to your breathing issues?

    Take care

     
    Old 04-28-2009, 12:03 PM   #14
    Titennek2breath
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    Smile Re: Breathing difficulties

    Hi Lynne,

    Cannot quite agree you have a piece of cake with all that's happened to you but you have thought it out well and shown resilience to all that has happened to you.

    Meds do not seem to contribute to my breathing issue but RSD may do so.

    My medical condition is as follows:

    Paraplegia since 2000
    Caudal injection sin 2001 which suspended spinal operations
    Tetraplegia/Quadraplegia since 2002
    Cyanosis, skin, feet/toes since 2003
    RSD/parasympathetic- 2004
    Lack of pedal & other pulses- 2004
    Loss of skin especially large area at bottom of front of trunk and top of legs-2000-2005
    Brain volume loss- 2008 MRI
    1 or 2 small non-specific white matter changes-2008 MRI
    Degenerative changes at C5/C6- 2008 plain x/rays & MRI
    Slight deformity of the spinal cord at C3/4- 2008
    Some foraminal narrowing at that level
    Some degenerative disc changes in the thoracic spine- 2008
    Abnormal signal at T5/7- need axial views of this at that level- 2008
    Canal stenosis (at least narrowing at L3/4 and L4/5, especially on the right) in the lumbar region- 2008
    Facet joint disease at L5/S1- 2008
    High blood pressure
    High cholestrol
    Strokes

    Apart from these, I am oki dokey.

    Thank u very much for your help and do ask if you have any more questions.


    Vince...


    Quote:
    Originally Posted by Lynnetter View Post
    Hi Vince--what I have is a piece of cake compared to what you have going on. They call myelopathy a spinal cord injury--the most common--but rarely does it cause paralysis--unless undetected and then you get injured.

    I had a congenital (at birth) fusion of C3-4. Then I have been in about 7 car accidents, not my fault. 2 cars were totaled, and one I was sitting on a bus bench and a car jumped the curb, hitting me and sending me into the intersection. I was young and mainly fractured my right leg, some ribs, and 3rd degree sprains of both ankles.

    Over time the bones compressed--and what sent me to the Dr was right leg burning pain (set off by neck positions, not low back). I knew I had an ugly neck on X-ray--they did MRI's and found C4-5 and 5-6 were compressing the spinal cord and there was some cord damage from the compression. Also with bending my neck there was some movemnt at C4 and C7. No neck pain, but progressing weakness and spasticity in my left arm and leg.

    Don't know if the RSD caused the strokes--but the sympathetic nervous system is involved--affects the blood flow and blood to the nerves--thus pain and circulation are affected. Are you on meds for this--do the meds also contribute to your breathing issues?

    Take care

     
    Old 04-28-2009, 02:40 PM   #15
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    Re: Breathing difficulties

    Hi Vince--

    * removed *

    Hopefully you can get more answers and help. Have a good day

    Last edited by hb-mod; 04-28-2009 at 02:52 PM. Reason: Please don't post links and instructions regarding Internet websites as per Posting Policy. Thanks.

     
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