Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Those are good questions Debbie and I think even a neurosurgeon or neurologist would be stumped. But from what I've read about tethered cord, the symptom of pain that goes away when you stop stretching the cord, is a definite tcs. I wouldn't think by not doing that you are in a sense " stopping " the tcs you're just not experiencing that symptom. Sorry to hear about the Ehler-Danlos, that can be tough stuff too. I have a very interesting article I could email you privately on that from some top neuros in the field. Lawliss karen@... creator of www.vitalcard.net mom to 3 great boys Aggravating tethering When you have aggravated the tethered cord area, (ie. pain accross back and can't bend even a little, your hips to the left or right without pain, increased pain down legs with burning and in feet, increasing even more by walking, standing or sitting), will resting cause the area to heal back to how it was before you aggravated it or are you slowly but surly causing irreversible damage? Also I have hammer toes but I also have Ehlers-Danlos and have 6 toes that are almost completely dislocated, also the fatty pads on the bottom of my feet behind my toes are gone and the outer part of my left big toe is has been numb for years, how does a person know if the problems with the feet are due to tcs or the connective tissue disorder? Debbie B Tethered cord not detethered EDS hypermobility type Not Medical Advice. We Are Not Doctors. Need help with the list? Email kathy@...,michelle@..., rick@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hi Debbie When you are moving a tethered cord, the constant pulling and wear and tear IS causing damage. The nerve fibres are like rope fibres, and I visualise the cord as gradually wearing out the fibres. Also the tightness on the cord compromises the blood flow through it and so not enough oxygen gets to the cord, therefore damaging nerve and blood vessel action. The pain that you are feeling is due to aggravation of the nerves and the tensioning on the cord. My advise is to pace yourself and take things easy - even when you don't feel so much pain. The toes: I have hammer toes, pes cavus (highly arched feet) and erythromelalgia which is due to the tethered cord action in the formative years, and then the damage to the nerves which control temperature and vascular control. From what you say about Ehlers-Danlos, I don't know if the hammer toes are due to that, or the TCs but I would say it is the TCS. Please don't take my words as gospel, but this is just my impression of your situation. If your situation is deteriorating it would be best if you consult with a neurosurgeon Best wishes from England Nina Bristol, UK --On 05 March 2006 06:26 +0000 curt_n_debbryant wrote: > When you have aggravated the tethered cord area, (ie. pain accross > back and can't bend even a little, your hips to the left or right > without pain, increased pain down legs with burning and in feet, > increasing even more by walking, standing or sitting), will resting > cause the area to heal back to how it was before you aggravated it or > are you slowly but surly causing irreversible damage? Also I have > hammer toes but I also have Ehlers-Danlos and have 6 toes that are > almost completely dislocated, also the fatty pads on the bottom of my > feet behind my toes are gone and the outer part of my left big toe is > has been numb for years, how does a person know if the problems with > the feet are due to tcs or the connective tissue disorder? > Debbie B > Tethered cord not detethered > EDS hypermobility type > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email > kathy@...,michelle@..., rick@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 I'd love to see that article too if you don't mind and can email it. Thanks ia > >Reply-To: tetheredspinalcord >To: <tetheredspinalcord > >Subject: Re: Aggravating tethering >Date: Sun, 5 Mar 2006 05:34:03 -0500 > >Those are good questions Debbie and I think even a neurosurgeon or >neurologist would be stumped. > >But from what I've read about tethered cord, the symptom of pain that goes >away when you stop stretching the cord, is a definite tcs. I wouldn't >think by not doing that you are in a sense " stopping " the tcs you're just >not experiencing that symptom. > >Sorry to hear about the Ehler-Danlos, that can be tough stuff too. > >I have a very interesting article I could email you privately on that from >some top neuros in the field. > > Lawliss >karen@... >creator of www.vitalcard.net >mom to 3 great boys > Aggravating tethering > > > When you have aggravated the tethered cord area, (ie. pain accross > back and can't bend even a little, your hips to the left or right > without pain, increased pain down legs with burning and in feet, > increasing even more by walking, standing or sitting), will resting > cause the area to heal back to how it was before you aggravated it or > are you slowly but surly causing irreversible damage? Also I have > hammer toes but I also have Ehlers-Danlos and have 6 toes that are > almost completely dislocated, also the fatty pads on the bottom of my > feet behind my toes are gone and the outer part of my left big toe is > has been numb for years, how does a person know if the problems with > the feet are due to tcs or the connective tissue disorder? > Debbie B > Tethered cord not detethered > EDS hypermobility type > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email >kathy@...,michelle@..., rick@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Nina, Thanks for your constant input for the group! It's interesting about temperature and vascular control issues...when I saw the neurologist at Mayo, before I knew for sure that I had tsc, I had a strong suspicion but couldn't find someone to confirm it... he did some million dollar test that picked up that my ability to sense cold in my feet was abnormal and that I had autonomic abnormalities (can translate into vascular findings) so the conclusion was...oh you have " chronic pain and deconditioning or dehydration " ...brilliant...they don't believe in tsc at Mayo unless it's a pediatric case with a more obvious spina bifida. They pretty much laughed at me. I'm not saying Mayo is a bad place, I just didn't have luck with my consultation, most cases are probably well diagnosed for other diseases. I had to go home and see surgeon #6 that I had heard about who confirmed my suspicion. After all this my neurologist at home would like to present my case at some conferences, I think it is good to bring some awareness and teach about it since the majority of adult doctors really don't know about this, even spine specialists...I don't blame them, it's not like you can know about all the rare diseases when you deal with herniated discs and more common issues on a daily basis. I hate being the odd case though b/c if this had been discovered >1 year ago I wouldn't have the damage I have now in my right leg that was mainly stretched really badly at PT with manual traction. I know I've improved alot but the bad nerve pain in my right leg still is there everyday to remind me...and my kids have really had a rough time, I'm trying to put the pieces together slowly. Sorry to whine, just in that mood today... Best wishes for a pain free week to all of you!! AG >From: " AB Bunton, Electrical & Electronic Engineering " > >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: Aggravating tethering >Date: Sun, 05 Mar 2006 16:03:47 +0000 > >Hi Debbie > >When you are moving a tethered cord, the constant pulling and wear and tear >IS causing damage. The nerve fibres are like rope fibres, and I visualise >the cord as gradually wearing out the fibres. Also the tightness on the >cord compromises the blood flow through it and so not enough oxygen gets to >the cord, therefore damaging nerve and blood vessel action. > >The pain that you are feeling is due to aggravation of the nerves and the >tensioning on the cord. My advise is to pace yourself and take things easy >- even when you don't feel so much pain. > >The toes: I have hammer toes, pes cavus (highly arched feet) and >erythromelalgia which is due to the tethered cord action in the formative >years, and then the damage to the nerves which control temperature and >vascular control. From what you say about Ehlers-Danlos, I don't know if >the hammer toes are due to that, or the TCs but I would say it is the TCS. > >Please don't take my words as gospel, but this is just my impression of >your situation. If your situation is deteriorating it would be best if you >consult with a neurosurgeon > >Best wishes from England > >Nina >Bristol, UK > >--On 05 March 2006 06:26 +0000 curt_n_debbryant > wrote: > > > When you have aggravated the tethered cord area, (ie. pain accross > > back and can't bend even a little, your hips to the left or right > > without pain, increased pain down legs with burning and in feet, > > increasing even more by walking, standing or sitting), will resting > > cause the area to heal back to how it was before you aggravated it or > > are you slowly but surly causing irreversible damage? Also I have > > hammer toes but I also have Ehlers-Danlos and have 6 toes that are > > almost completely dislocated, also the fatty pads on the bottom of my > > feet behind my toes are gone and the outer part of my left big toe is > > has been numb for years, how does a person know if the problems with > > the feet are due to tcs or the connective tissue disorder? > > Debbie B > > Tethered cord not detethered > > EDS hypermobility type > > > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > Need help with the list? Email > > kathy@...,michelle@..., rick@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 I would love to see that article as well, if it isn't too much trouble. Aggravating tethering > > > When you have aggravated the tethered cord area, (ie. pain accross > back and can't bend even a little, your hips to the left or right > without pain, increased pain down legs with burning and in feet, > increasing even more by walking, standing or sitting), will resting > cause the area to heal back to how it was before you aggravated it or > are you slowly but surly causing irreversible damage? Also I have > hammer toes but I also have Ehlers-Danlos and have 6 toes that are > almost completely dislocated, also the fatty pads on the bottom of my > feet behind my toes are gone and the outer part of my left big toe is > has been numb for years, how does a person know if the problems with > the feet are due to tcs or the connective tissue disorder? > Debbie B > Tethered cord not detethered > EDS hypermobility type > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email >kathy@...,michelle@..., rick@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 To some extent resting may provide temporary relief. But your Cord will continue to be aggervated by the Tether. But nobody can tell you for sure what that will do to you specifically. Sorry this probably doesn't help you much. Me Nebraska, USA mymocha@... > When you have aggravated the tethered cord area, (ie. pain accross > back and can't bend even a little, your hips to the left or right > without pain, increased pain down legs with burning and in feet, > increasing even more by walking, standing or sitting), will resting > cause the area to heal back to how it was before you aggravated it or > are you slowly but surly causing irreversible damage? Quote Link to comment Share on other sites More sharing options...
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