Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Kristi, After an extensive surgery in which my neurosurgeon had to cut out scar tissue that tangled most of my nerves that fed my lower extremities. Having said that was left with quite a bit of neuropathy. I was/still am an active person so this has been a challenge physically. But I take 100mg of Lyrica three times a day (it is like neurontin) and Cymbalta 20mg twice daily, it is an anti-depressant but also is being used for neuropathy. I hope this helps. Also has anyone had continued or increased back pain after a spinal cord has been detethered? l am able to deal with the leg pain but my back pain never lets up. I have tried multiple efforts, i.e. physical therapy, meditation, acupuncture, massage (although just from my husband..... hmmm maybe I better get someone who is licensed??? No but seriously does anyone have thoughts or suggestions? Peace, Leg Pain My legs hurt so bad, I would call it severe pain...do any of you have leg pain that is severe? If so, what helps it? Thanks! Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Thank you for the response! I was just diagnosed at the end of March at TCI. I am scheduled for fusion/extraction + decompression there in early October. I thought that they usually tackled the TC first? Maybe I am different and they want me to go backwards. My report says I show clinical evidence of TC, but it doesn't say what type/how. I would think that it would be a lolt easier lying on your belly without your neck being fused. I am having a heck of a time getting proper treatment locally. Last night I wanted to cut my legs off. Do you have the same type of pain as you did before your surgery? Did you take the same meds, and they helped pre op too? How long ago was your surgery? Thanks again! Kristi In a message dated 6/12/2006 1:20:37 AM Eastern Daylight Time, lindafilipi@... writes: Kristi, After an extensive surgery in which my neurosurgeon had to cut out scar tissue that tangled most of my nerves that fed my lower extremities. Having said that was left with quite a bit of neuropathy. I was/still am an active person so this has been a challenge physically. But I take 100mg of Lyrica three times a day (it is like neurontin) and Cymbalta 20mg twice daily, it is an anti-depressant but also is being used for neuropathy. I hope this helps. Also has anyone had continued or increased back pain after a spinal cord has been detethered? l am able to deal with the leg pain but my back pain never lets up. I have tried multiple efforts, i.e. physical therapy, meditation, acupuncture, massage (although just from my husband..... hmmm maybe I better get someone who is licensed??? No but seriously does anyone have thoughts or suggestions? Peace, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Hi Kristi, I'm interested in hearing the responces you get too. I went to TCI in April. Suspected Tethered cord to go along with my Chiari. Was decompressed in Dec '02 but am reherniated 4 mm again. Dr B suspects its the tethered cord pulling the tonsils. The leg pain is out of this world. Lower back too. On 50 mg topamax for ICP ( with all the rain we've had I have no way of knowing if topamax is working, my head won't stop pounding ) on 300 mg neurontin 3 times a day now. Cymbalta was recommended at TCI, but isn't available here so on neurontin again. So far its not touching the nerve pain. Have a question to add tho. I get the numbness and tingling in feet and hands, legs and arms...but this weekend I noticed it in my breasts, anyone else had it there ? The genital area has been numb for almost 15 years, but now its my breasts, any other woman ? I try to look for a positive in a negative - my positive to this - maybe now when I get a ' let down ( yes I have had breast milk for 4 years for ' no reason ' ) maybe I won't feel it. There - found my positive ! Any other women get numbness in their breasts tho ? > > Kristi, > > After an extensive surgery in which my neurosurgeon had to cut out scar tissue that tangled most of my nerves that fed my lower extremities. Having said that was left with quite a bit of neuropathy. I was/still am an active person so this has been a challenge physically. But I take 100mg of Lyrica three times a day (it is like neurontin) and Cymbalta 20mg twice daily, it is an anti-depressant but also is being used for neuropathy. I hope this helps. > > Also has anyone had continued or increased back pain after a spinal cord has been detethered? l am able to deal with the leg pain but my back pain never lets up. I have tried multiple efforts, i.e. physical therapy, meditation, acupuncture, massage (although just from my husband..... hmmm maybe I better get someone who is licensed??? No but seriously does anyone have thoughts or suggestions? > > Peace, > > Leg Pain > > > > My legs hurt so bad, I would call it severe pain...do any of you have leg > pain that is severe? If so, what helps it? Thanks! > > Kristi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Thanks for the response! I sent another message to the group, I don't know why it didn't go through????? I was on Neurontin a few years ago for the tingling in my feet, and I felt like I had drank a case of beer, after only one pill. I tried to tough it out, but I couldn't bear the side effects, so I quit it after a month. I wish it didn't do that to me, I have heard from other people that it works for that type of pain. What are the other two meds that you mentioned? Do you happen to know what they are called in the US? I have Vicodin ES, and it helps, but only for about an hour. My doc told me that it was " extended release " and I can only take it once every 8 hours. I also have Chiari and EDS. I have been on the Vicodin for almost a year, and I think my body has become dependant on it. He won't even give me and NSAID or Zofran to help with the nausea. No surgery yet, I was just dx'ed two months ago. I am scheduled for fusion/extraction +decompression in October (the 6th) This leg pain is so bad, I just want to cut my legs off! Here is my other e-mail to the group, I'll try sending it with this one: ............................................................................... .................................................. Thank you for the response! I was just diagnosed at the end of March at TCI. I am scheduled for fusion/extraction + decompression there in early October. I thought that they usually tackled the TC first? Maybe I am different and they want me to go backwards. My report says I show clinical evidence of TC, but it doesn't say what type/how. I would think that it would be a lolt easier lying on your belly without your neck being fused. I am having a heck of a time getting proper treatment locally. Last night I wanted to cut my legs off. Do you have the same type of pain as you did before your surgery? Did you take the same meds, and they helped pre op too? How long ago was your surgery? Thanks again! Kristi In a message dated 6/12/2006 1:07:54 PM Eastern Daylight Time, beate.garmannslund@... writes: Hei Norway calling! Yes, i have a lot of pain in my legs.... and for me.. neurontin helps toghether with a painciller called pinex or panodil. And in the evening i also have to take some med. called sarotex, that helps me relax in the night and helps me sleep better. Have you been through surgery??? I have.. if you want to know more about the results... please e mail me. Take care. Best regards from beate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Hei Norway calling! Yes, i have a lot of pain in my legs.... and for me.. neurontin helps toghether with a painciller called pinex or panodil. And in the evening i also have to take some med. called sarotex, that helps me relax in the night and helps me sleep better. Have you been through surgery??? I have.. if you want to know more about the results... please e mail me. Take care. Best regards from beate > > > My legs hurt so bad, I would call it severe pain...do any of you have leg > pain that is severe? If so, what helps it? Thanks! > > Kristi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 hei Have you used neurontin earlier.... im on neurontin but my doctor has asked me if i would like to try lyrica.. im on a kind of anti-depressant as well... also used for neuropain. Do you think lyrica is the best.. or.. best regard from Beate in Norway > > Kristi, > > After an extensive surgery in which my neurosurgeon had to cut out scar > tissue that tangled most of my nerves that fed my lower extremities. Having > said that was left with quite a bit of neuropathy. I was/still am an active > person so this has been a challenge physically. But I take 100mg of Lyrica > three times a day (it is like neurontin) and Cymbalta 20mg twice daily, it > is an anti-depressant but also is being used for neuropathy. I hope this > helps. > > Also has anyone had continued or increased back pain after a spinal cord > has been detethered? l am able to deal with the leg pain but my back pain > never lets up. I have tried multiple efforts, i.e. physical therapy, > meditation, acupuncture, massage (although just from my husband..... hmmm > maybe I better get someone who is licensed??? No but seriously does anyone > have thoughts or suggestions? > > Peace, > > > Leg Pain > > My legs hurt so bad, I would call it severe pain...do any of you have leg > pain that is severe? If so, what helps it? Thanks! > > Kristi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Hi Beate, I tried Neurontin even at a high dose. Lyrica is similar to neurontin but is supppose to be better. I think it is. The only thing is it is expensive. I also take a antidepressant called Cymbalta. It is for neuropathy. I have numbness and pain in my legs and feet. But my back pain is the worst. The neurosurgeon thinks I am having some sciatica problems since surgery. He is recommending cortisone injections. So I pray this works. My best regards concerning your meds. Peace, Leg Pain > > My legs hurt so bad, I would call it severe pain...do any of you have leg > pain that is severe? If so, what helps it? Thanks! > > Kristi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Hi there Vicodin works on opiod receptors, not as good for nerve pain as some others, the advantage is that it works quick but won't give you much of a " maintanence " pain relief for nerve pain. Unfortunately with tcs we get pain that might need to be attacked from multiple angles (I.e. different types of drugs, receptors). For nerve pain, if you cannot tolerate the Neurontin in the usual 600-1200 mg, it sometimes takes some gradual increments to be able to tolerate it, like starting even as low as 100-200 mg at dinner and gradually building to the dose you can tolerate or that helps your pain. After 2 weeks most people can get by the drowsy/dizzy part. If Neurontin is definitely out, they might want to consider some of the others people have mentioned here, Lyrica, Cymbalta, Elavil, Ultracet, Topamax, etc. NSAIDs might be helpful to address bone and muscle pain from tcs (like Aleve 2 twice a day or Motrin). Other things to try could be heating pad, TENS unit, whirlpool, acupuncture. Muscle relaxants (Flexeril, Soma, Norflex, etc) might help if you get leg or back spasms... Another thing is trying to get or maintain some strength with a PT program prior to surgery. Do you have a pain specialist in your area or someone willing to work with you on the pain? Best wishes ia Re: Leg Pain Thanks for the response! I sent another message to the group, I don't know why it didn't go through????? I was on Neurontin a few years ago for the tingling in my feet, and I felt like I had drank a case of beer, after only one pill. I tried to tough it out, but I couldn't bear the side effects, so I quit it after a month. I wish it didn't do that to me, I have heard from other people that it works for that type of pain. What are the other two meds that you mentioned? Do you happen to know what they are called in the US? I have Vicodin ES, and it helps, but only for about an hour. My doc told me that it was " extended release " and I can only take it once every 8 hours. I also have Chiari and EDS. I have been on the Vicodin for almost a year, and I think my body has become dependant on it. He won't even give me and NSAID or Zofran to help with the nausea. No surgery yet, I was just dx'ed two months ago. I am scheduled for fusion/extraction +decompression in October (the 6th) This leg pain is so bad, I just want to cut my legs off! Here is my other e-mail to the group, I'll try sending it with this one: ............................................................................ ................................................. Thank you for the response! I was just diagnosed at the end of March at TCI. I am scheduled for fusion/extraction + decompression there in early October. I thought that they usually tackled the TC first? Maybe I am different and they want me to go backwards. My report says I show clinical evidence of TC, but it doesn't say what type/how. I would think that it would be a lolt easier lying on your belly without your neck being fused. I am having a heck of a time getting proper treatment locally. Last night I wanted to cut my legs off. Do you have the same type of pain as you did before your surgery? Did you take the same meds, and they helped pre op too? How long ago was your surgery? Thanks again! Kristi In a message dated 6/12/2006 1:07:54 PM Eastern Daylight Time, beate.garmannslund@... writes: Hei Norway calling! Yes, i have a lot of pain in my legs.... and for me.. neurontin helps toghether with a painciller called pinex or panodil. And in the evening i also have to take some med. called sarotex, that helps me relax in the night and helps me sleep better. Have you been through surgery??? I have.. if you want to know more about the results... please e mail me. Take care. Best regards from beate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 I had severe excruciating pain in my legs before surgery, now it's improving, I still can't remember a pain free day but it's more manageable A Leg Pain My legs hurt so bad, I would call it severe pain...do any of you have leg pain that is severe? If so, what helps it? Thanks! Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Do you know why you are having back pain? Muscles? Disc? Same old tsc? Is it worse with sitting, standing, coughing, other triggers? My back pain is gone after surgery but I always had much worse leg pain than back pain. I guess core strengthening hasn't helped? Lidoderm? A Leg Pain My legs hurt so bad, I would call it severe pain...do any of you have leg pain that is severe? If so, what helps it? Thanks! Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Hi In regards to back pain... It starts right after I get up in the morning. Upon sitting or standing. The lower right side of my back is worse. It does send a zing down my right leg occassionally upon standing and gets worse with more exertion. I just saw my neurosurgeon and my MRI reveals no new retethering. Whew!!! That was a relief. He thinks I have a case of sciatica and is treating it with a tapperind dose of methylprednisolone and cortisone shots in my back. I hope it works. I did try Lidoderm. I don't really think that helped too much... but what has helped is a TENS machine. Have you tried this? It is the only thing that has helped besides pain meds... which I don't want to rely on. Thanks for you help. Peace, Leg Pain My legs hurt so bad, I would call it severe pain...do any of you have leg pain that is severe? If so, what helps it? Thanks! Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 , I have been using a TENS for about half a year now. Sometimes I wonder if it really helps or the effect is just pyschological.....I guess that is irrelevant as long as it works! Do you wear your TENS continously? At night? Take care, --- Filipi wrote: > Hi > In regards to back pain... It starts right after I > get up in the morning. Upon sitting or standing. > The lower right side of my back is worse. It does > send a zing down my right leg occassionally upon > standing and gets worse with more exertion. I just > saw my neurosurgeon and my MRI reveals no new > retethering. Whew!!! That was a relief. He thinks > I have a case of sciatica and is treating it with a > tapperind dose of methylprednisolone and cortisone > shots in my back. I hope it works. I did try > Lidoderm. I don't really think that helped too > much... but what has helped is a TENS machine. Have > you tried this? It is the only thing that has > helped besides pain meds... which I don't want to > rely on. Thanks for you help. > Peace, > > Leg Pain > > My legs hurt so bad, I would call it severe > pain...do any of you have leg > pain that is severe? If so, what helps it? Thanks! > > Kristi > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Hi What did you fine that worked? thanks jackie Re: leg pain When I was on neurontin it never helped at all I tried for months. This message was sent from an iphone and may not display correctly. > Hi again. Sorry for all of the questions. I am currently on > neuronton for nerve pain in the legs. Today I am having really bad > pain in my legs. So bad it hurts to stand on my legs. Is it possible > to have this pain even though I am taking the neuronton 3 times a > day. I take it in the morning, supper time and bed time. This pain > started at like lunch time today and it is no better. It is worsen > by standing but still is there when sitting some > thanks jackie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Hei I used to use Neurontin for many years. Since 2006 i have used Lyrica... and I have less pain.. and my days are easier to cope with... Regards Beate in Norway 2008/3/11, Jackie : > > Hi again. Sorry for all of the questions. I am currently on neuronton > for nerve pain in the legs. Today I am having really bad pain in my legs. So > bad it hurts to stand on my legs. Is it possible to have this pain even > though I am taking the neuronton 3 times a day. I take it in the morning, > supper time and bed time. This pain started at like lunch time today and it > is no better. It is worsen by standing but still is there when sitting some > thanks jackie > > Quote Link to comment Share on other sites More sharing options...
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