Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 Kathy, did you get my email? ________________________________ To: tetheredspinalcord Sent: Tue, October 19, 2010 8:49:27 PM Subject: Re: Experience  , Can we talk privately? My email is kmoulton@... Thanks! Kathy Experience > > > > Hi my name is e,, I am 38 yrs old and have recently had a tethered >cord > > > release surgery for the third time,, The question is has anyone else had it >done > > > that many times? Also, since surgery I have had numbness in my feet and legs >and > > > buttocks area.. I am applying for disability and was wondering if anyone here > > > > > had ever gotten disability based on this condition? > > Thanks > > e > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 This is very interesting -- when I was on neurontin I had similiar symptoms -- especially the loss of time and blanking out for what seemed like long periods of time but may in the end have only been 15 minutes. My hands and arms also got heavy and I had dizziness that never went away. It got tothe point where the fogginess and " loss of time " was too much - paired with the extreme swelling - I went off of it all together -- and these symptoms disapated. I took neurontin for almost 3-4 months at final dose of 1200 mg I believe. I am highly sensitive to medications - and am prone to the most extreme of reactions -- normally when reading the side effects and it will say " such and such only occurs in less than 1-2 % of the population .. this will be me. When I went to the ER they also thought I was imagining things b/c there was no " by the book " diagnosis they could make for what was happening. Especially, the arm and lower extremity numbness/partial paralysis/vertigo/low blood pressure - glazed eyes - after having ice applied to my neck/shoulders/back after PT session. Still don't have an answer for this. Would love to talk to you both more offlist... hoping you're both well -- Kathy and . Warmly, > > > > > > I've had five since 1997 and I am now 48 years old (last one about seven > >years ago). First one was for Lipomeningocele. > > > > > > Kathy > > > > > > Experience > > > > > > Hi my name is e,, I am 38 yrs old and have recently had a tethered > >cord > > > > > release surgery for the third time,, The question is has anyone else had it > >done > > > > > that many times? Also, since surgery I have had numbness in my feet and legs > >and > > > > > buttocks area.. I am applying for disability and was wondering if anyone here > > > > > had ever gotten disability based on this condition? > > > Thanks > > > e > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 I have a bit of memory loss with Neurontin, however I have no more nerve pain in my legs... So for me it has been working. I am however having increased numbness- pelvis, fingers, buttocks.. Do you think this could be caused be Neurontin or over working myself >This is very interesting -- when I was on neurontin I had similiar symptoms -- especially the loss of time and blanking out for what seemed like long periods of time but may in the end have only been 15 minutes. My hands and arms also got heavy and I had dizziness that never went away. It got tothe point where the fogginess and " loss of time " was too much - paired with the extreme swelling - I went off of it all together -- and these symptoms disapated. I took neurontin for almost 3-4 months at final dose of 1200 mg I believe. > >I am highly sensitive to medications - and am prone to the most extreme of reactions -- normally when reading the side effects and it will say " such and such only occurs in less than 1-2 % of the population .. this will be me. When I went to the ER they also thought I was imagining things b/c there was no " by the book " diagnosis they could make for what was happening. Especially, the arm and lower extremity numbness/partial paralysis/vertigo/low blood pressure - glazed eyes - after having ice applied to my neck/shoulders/back after PT session. Still don't have an answer for this. > >Would love to talk to you both more offlist... hoping you're both well -- Kathy and . Warmly, > > >> > > >> > > I've had five since 1997 and I am now 48 years old (last one about seven >> >years ago). First one was for Lipomeningocele. >> > > >> > > Kathy >> > > >> > > Experience >> > > >> > > Hi my name is e,, I am 38 yrs old and have recently had a tethered >> >cord >> > >> > > release surgery for the third time,, The question is has anyone else had it >> >done >> > >> > > that many times? Also, since surgery I have had numbness in my feet and legs >> >and >> > >> > > buttocks area.. I am applying for disability and was wondering if anyone here >> > >> > > had ever gotten disability based on this condition? >> > > Thanks >> > > e >> > > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 I have a bit of memory loss with Neurontin, however I have no more nerve pain in my legs... So for me it has been working. I am however having increased numbness- pelvis, fingers, buttocks.. Do you think this could be caused be Neurontin or over working myself >This is very interesting -- when I was on neurontin I had similiar symptoms -- especially the loss of time and blanking out for what seemed like long periods of time but may in the end have only been 15 minutes. My hands and arms also got heavy and I had dizziness that never went away. It got tothe point where the fogginess and " loss of time " was too much - paired with the extreme swelling - I went off of it all together -- and these symptoms disapated. I took neurontin for almost 3-4 months at final dose of 1200 mg I believe. > >I am highly sensitive to medications - and am prone to the most extreme of reactions -- normally when reading the side effects and it will say " such and such only occurs in less than 1-2 % of the population .. this will be me. When I went to the ER they also thought I was imagining things b/c there was no " by the book " diagnosis they could make for what was happening. Especially, the arm and lower extremity numbness/partial paralysis/vertigo/low blood pressure - glazed eyes - after having ice applied to my neck/shoulders/back after PT session. Still don't have an answer for this. > >Would love to talk to you both more offlist... hoping you're both well -- Kathy and . Warmly, > > >> > > >> > > I've had five since 1997 and I am now 48 years old (last one about seven >> >years ago). First one was for Lipomeningocele. >> > > >> > > Kathy >> > > >> > > Experience >> > > >> > > Hi my name is e,, I am 38 yrs old and have recently had a tethered >> >cord >> > >> > > release surgery for the third time,, The question is has anyone else had it >> >done >> > >> > > that many times? Also, since surgery I have had numbness in my feet and legs >> >and >> > >> > > buttocks area.. I am applying for disability and was wondering if anyone here >> > >> > > had ever gotten disability based on this condition? >> > > Thanks >> > > e >> > > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 I have a bit of memory loss with Neurontin, however I have no more nerve pain in my legs... So for me it has been working. I am however having increased numbness- pelvis, fingers, buttocks.. Do you think this could be caused be Neurontin or over working myself >This is very interesting -- when I was on neurontin I had similiar symptoms -- especially the loss of time and blanking out for what seemed like long periods of time but may in the end have only been 15 minutes. My hands and arms also got heavy and I had dizziness that never went away. It got tothe point where the fogginess and " loss of time " was too much - paired with the extreme swelling - I went off of it all together -- and these symptoms disapated. I took neurontin for almost 3-4 months at final dose of 1200 mg I believe. > >I am highly sensitive to medications - and am prone to the most extreme of reactions -- normally when reading the side effects and it will say " such and such only occurs in less than 1-2 % of the population .. this will be me. When I went to the ER they also thought I was imagining things b/c there was no " by the book " diagnosis they could make for what was happening. Especially, the arm and lower extremity numbness/partial paralysis/vertigo/low blood pressure - glazed eyes - after having ice applied to my neck/shoulders/back after PT session. Still don't have an answer for this. > >Would love to talk to you both more offlist... hoping you're both well -- Kathy and . Warmly, > > >> > > >> > > I've had five since 1997 and I am now 48 years old (last one about seven >> >years ago). First one was for Lipomeningocele. >> > > >> > > Kathy >> > > >> > > Experience >> > > >> > > Hi my name is e,, I am 38 yrs old and have recently had a tethered >> >cord >> > >> > > release surgery for the third time,, The question is has anyone else had it >> >done >> > >> > > that many times? Also, since surgery I have had numbness in my feet and legs >> >and >> > >> > > buttocks area.. I am applying for disability and was wondering if anyone here >> > >> > > had ever gotten disability based on this condition? >> > > Thanks >> > > e >> > > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 I have a bit of memory loss with Neurontin, however I have no more nerve pain in my legs... So for me it has been working. I am however having increased numbness- pelvis, fingers, buttocks.. Do you think this could be caused be Neurontin or over working myself >This is very interesting -- when I was on neurontin I had similiar symptoms -- especially the loss of time and blanking out for what seemed like long periods of time but may in the end have only been 15 minutes. My hands and arms also got heavy and I had dizziness that never went away. It got tothe point where the fogginess and " loss of time " was too much - paired with the extreme swelling - I went off of it all together -- and these symptoms disapated. I took neurontin for almost 3-4 months at final dose of 1200 mg I believe. > >I am highly sensitive to medications - and am prone to the most extreme of reactions -- normally when reading the side effects and it will say " such and such only occurs in less than 1-2 % of the population .. this will be me. When I went to the ER they also thought I was imagining things b/c there was no " by the book " diagnosis they could make for what was happening. Especially, the arm and lower extremity numbness/partial paralysis/vertigo/low blood pressure - glazed eyes - after having ice applied to my neck/shoulders/back after PT session. Still don't have an answer for this. > >Would love to talk to you both more offlist... hoping you're both well -- Kathy and . Warmly, > > >> > > >> > > I've had five since 1997 and I am now 48 years old (last one about seven >> >years ago). First one was for Lipomeningocele. >> > > >> > > Kathy >> > > >> > > Experience >> > > >> > > Hi my name is e,, I am 38 yrs old and have recently had a tethered >> >cord >> > >> > > release surgery for the third time,, The question is has anyone else had it >> >done >> > >> > > that many times? Also, since surgery I have had numbness in my feet and legs >> >and >> > >> > > buttocks area.. I am applying for disability and was wondering if anyone here >> > >> > > had ever gotten disability based on this condition? >> > > Thanks >> > > e >> > > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 I have a bit of memory loss with Neurontin, however I have no more nerve pain in my legs... So for me it has been working. I am however having increased numbness- pelvis, fingers, buttocks.. Do you think this could be caused be Neurontin or over working myself >This is very interesting -- when I was on neurontin I had similiar symptoms -- especially the loss of time and blanking out for what seemed like long periods of time but may in the end have only been 15 minutes. My hands and arms also got heavy and I had dizziness that never went away. It got tothe point where the fogginess and " loss of time " was too much - paired with the extreme swelling - I went off of it all together -- and these symptoms disapated. I took neurontin for almost 3-4 months at final dose of 1200 mg I believe. > >I am highly sensitive to medications - and am prone to the most extreme of reactions -- normally when reading the side effects and it will say " such and such only occurs in less than 1-2 % of the population .. this will be me. When I went to the ER they also thought I was imagining things b/c there was no " by the book " diagnosis they could make for what was happening. Especially, the arm and lower extremity numbness/partial paralysis/vertigo/low blood pressure - glazed eyes - after having ice applied to my neck/shoulders/back after PT session. Still don't have an answer for this. > >Would love to talk to you both more offlist... hoping you're both well -- Kathy and . Warmly, > > >> > > >> > > I've had five since 1997 and I am now 48 years old (last one about seven >> >years ago). First one was for Lipomeningocele. >> > > >> > > Kathy >> > > >> > > Experience >> > > >> > > Hi my name is e,, I am 38 yrs old and have recently had a tethered >> >cord >> > >> > > release surgery for the third time,, The question is has anyone else had it >> >done >> > >> > > that many times? Also, since surgery I have had numbness in my feet and legs >> >and >> > >> > > buttocks area.. I am applying for disability and was wondering if anyone here >> > >> > > had ever gotten disability based on this condition? >> > > Thanks >> > > e >> > > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 e, I was told to take 50mg in the morning and at night and 100mg 2x a day. But I'm taking 100mg 3x a day because 50 isn't enough. I tried taking 100mg at bedtime (Dr's suggestion) but I slept for 10 hours and didn't continue. I'm going to ask for 100mg 4x a day. I take Tylenol PM at night but I could always take an extra 50mg instead, if the Dr. agrees. Thanks for your input. >I am lyrica,, 300 mgs daily and I was told I can take another 150 if needed.. >I take 150 in the am and then depending on how much nerve pain I am having I >take 300 at night,, if i take 300 in the am i feel high.. Pregablin is lyrica,, >it is similar to neurotin,,, thats what my doc at Duke told me.. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 Hello ! I hope you're well. It's been a while since we've spoken. Will email you off list soon. ox E > > > > > > > > I've had five since 1997 and I am now 48 years old (last one about seven > > >years ago). First one was for Lipomeningocele. > > > > > > > > Kathy > > > > > > > > Experience > > > > > > > > Hi my name is e,, I am 38 yrs old and have recently had a tethered > > >cord > > > > > > > release surgery for the third time,, The question is has anyone else had it > > > > >done > > > > > > > that many times? Also, since surgery I have had numbness in my feet and > >legs > > > > >and > > > > > > > buttocks area.. I am applying for disability and was wondering if anyone > >here > > > > > > > > > had ever gotten disability based on this condition? > > > > Thanks > > > > e > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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