Guest guest Posted April 3, 2011 Report Share Posted April 3, 2011 I have a friend who has very severe spine problems in her lower back and more recently in her neck. She had to have neck surgery and is only gradually recovering from it and regaining use of her arms etc... But soon after surgery, she began having pain in her buttocks that was a burning pain -- not related to a skin condition and the doctor thinks it neurological. Now she is having more and more burning pain in other parts of her body and also gets hot and flushed at times. She is already on very high neurontin that she began for burning in her feet years ago. She wonders if there might be something the doctors are missing that can be corrected. She asked me to research it for her. I say B12 deficiency mentioned somewhere. But I'm looking for other ideas to try to help her. What treatments, tests, diagnoses might be considered? Her pain doctor seems to have given up on it just saying it is from the spine and nothing else can be done. Another doctor suggested botox injections. Any thoughts would be greatly appreciated. She is barely getting by using frequent ice packs, but is still in agony a lot of the time, since the rehab place is overloaded. The nurses often aren't as helpful as they might be or come to her assistance as often as she needs them. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2011 Report Share Posted April 3, 2011 I had one of my doctors request a thiamine level. At the time the only lab that did it was Quest. I take a supplement called Neuremedy which is supposed to help with the health of the nerves. In addition to my recent laminectomy, I have had multiple decompressive surgeries in my legs for nerve entrapments. ________________________________ From: " kzd1000@... " <Jcwat101@...> spinal problems Sent: Sun, April 3, 2011 1:20:16 PM Subject: burning pain  I have a friend who has very severe spine problems in her lower back and more recently in her neck. She had to have neck surgery and is only gradually recovering from it and regaining use of her arms etc... But soon after surgery, she began having pain in her buttocks that was a burning pain -- not related to a skin condition and the doctor thinks it neurological. Now she is having more and more burning pain in other parts of her body and also gets hot and flushed at times. She is already on very high neurontin that she began for burning in her feet years ago. She wonders if there might be something the doctors are missing that can be corrected. She asked me to research it for her. I say B12 deficiency mentioned somewhere. But I'm looking for other ideas to try to help her. What treatments, tests, diagnoses might be considered? Her pain doctor seems to have given up on it just saying it is from the spine and nothing else can be done. Another doctor suggested botox injections. Any thoughts would be greatly appreciated. She is barely getting by using frequent ice packs, but is still in agony a lot of the time, since the rehab place is overloaded. The nurses often aren't as helpful as they might be or come to her assistance as often as she needs them. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2011 Report Share Posted April 3, 2011 So sorry to hear about your friend. I agree with Janice, please research arachnoiditis. There is a group called COFWA, circle of friends with arachnoiditis. You will find a lot of good information there. Sharon > > Has anyone ever mentioned Arachnoiditis to you. When you get to the point where you are having to have more than 2 or 3 surgeries you must begin to suspect that Arachnoiditis may be the answer. Scar tissue wrapped around the nerves of the spine slowly cutting them off and with them there is plenty of pain and more surgery can make it worse. I just wonder if anyone has ever mentioned it. > Janice > burning pain > > > I have a friend who has very severe spine problems in her lower back and more > recently in her neck. She had to have neck surgery and is only gradually > recovering from it and regaining use of her arms etc... > > But soon after surgery, she began having pain in her buttocks that was a burning > pain -- not related to a skin condition and the doctor thinks it neurological. > Now she is having more and more burning pain in other parts of her body and also > gets hot and flushed at times. > > She is already on very high neurontin that she began for burning in her feet > years ago. > > She wonders if there might be something the doctors are missing that can be > corrected. She asked me to research it for her. > > I say B12 deficiency mentioned somewhere. But I'm looking for other ideas to try > to help her. > > What treatments, tests, diagnoses might be considered? Her pain doctor seems to > have given up on it just saying it is from the spine and nothing else can be > done. Another doctor suggested botox injections. > > Any thoughts would be greatly appreciated. She is barely getting by using > frequent ice packs, but is still in agony a lot of the time, since the rehab > place is overloaded. The nurses often aren't as helpful as they might be or come > to her assistance as often as she needs them. > > Joyce > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Thanks for the comments. I do recall that she has been diagnosed with arachnoiditis and it seems her pain doctor doesn't think he can do anything more for her besides high amounts of narcotics and neurontin (she can't tolerate nsaids). But it seems to me she needs further treatment and she is desperate for it. In my research just this morning, I've seen that oral or injected steroids are sometimes used. Of course there are negatives for those. But her life is not tolerable the way it is now. So, something more needs to be done. Does anyone know of good neurologists in the Los Angeles area? We have already applied to join COFWA but while waiting, I thought I'd ask this group if they know someone they'd recommend or have further comments. Reading about arachnoiditis and knowing its relationships to surgeries, it does sure sound like her situation. It seemed to have begun after the spinal surgery, her 3rd procedure and it has gotten markedly worse after the surgery on her cervical spine that she had to have so she did not become a paraplegic. Thanks for any further ideas or doctor's names. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Joyce please contact me I have Arachnoiditis and I would love to talk to you about it. Janice faraway1@... Re: burning pain Thanks for the comments. I do recall that she has been diagnosed with arachnoiditis and it seems her pain doctor doesn't think he can do anything more for her besides high amounts of narcotics and neurontin (she can't tolerate nsaids). But it seems to me she needs further treatment and she is desperate for it. In my research just this morning, I've seen that oral or injected steroids are sometimes used. Of course there are negatives for those. But her life is not tolerable the way it is now. So, something more needs to be done. Does anyone know of good neurologists in the Los Angeles area? We have already applied to join COFWA but while waiting, I thought I'd ask this group if they know someone they'd recommend or have further comments. Reading about arachnoiditis and knowing its relationships to surgeries, it does sure sound like her situation. It seemed to have begun after the spinal surgery, her 3rd procedure and it has gotten markedly worse after the surgery on her cervical spine that she had to have so she did not become a paraplegic. Thanks for any further ideas or doctor's names. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 Hi Joyce - Sorry to hear of your Moms problems! Just a comment - While Arachnoiditis can come from many surgeries it is far more likely to come from too many steroidal and other injections it seems. They are thought to be the leading reason for archnoiditis as I understand it! I wish there was better news on treatment for it!! prayers for pain free days! Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 I have Arachnoiditis I was diagnosed in 1996 but I probably had it much longer the doctor said. I had 5 surgeries and many injections. I believe that it came from the surgeries but who cares at this point it's to late to worry about it. The best thing I can do is to tell people about this disease and tell them they can get Arachnoiditis from the injections and please research this before letting a surgeon tell you it's perfectly safe. It is not safe the injection even 1 can and has caused this disease that will leave you in pain for life the kind of pain you do not want. I am calling myself an advocate trying to help those who will listen, Janice Re: Re: burning pain Hi Joyce - Sorry to hear of your Moms problems! Just a comment - While Arachnoiditis can come from many surgeries it is far more likely to come from too many steroidal and other injections it seems. They are thought to be the leading reason for archnoiditis as I understand it! I wish there was better news on treatment for it!! prayers for pain free days! Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 I have arachnoiditis also. My neuro will only give me steroids as a last choice because steroids are truly horrible drugs. They do major damage to your body. Long term use can cause fractures which could compound the problems with the arachnoiditis. They do make me feel better for about a week, but not with the chance of winding up with more fractures later, and not to mention all the other immediate side effects (mood changes, weight gain which is not good for back pain, etc.). I would caution anyone about steroids. Research them before you use them. Unfortunately there is no cure for arachnoiditis and you just have to learn which combo of medications work well enough for you to have some type of life. It is unending pain and it is progressive so it will not get better. Sad but true. I hope she finds a better pain doctor or the right combination of pain meds. It took me awhile but I finally have a decent combination that allows me to have somewhat of a life around the pain. I still hurt but I don't want to increase my med's because I don't want to be zoned out all the time. Barb > > > Thanks for the comments. I do recall that she has been diagnosed with arachnoiditis and it seems her pain doctor doesn't think he can do anything more for her besides high amounts of narcotics and neurontin (she can't tolerate nsaids). But it seems to me she needs further treatment and she is desperate for it. In my research just this morning, I've seen that oral or injected steroids are sometimes used. Of course there are negatives for those. But her life is not tolerable the way it is now. So, something more needs to be done. > > Does anyone know of good neurologists in the Los Angeles area? We have already applied to join COFWA but while waiting, I thought I'd ask this group if they know someone they'd recommend or have further comments. Reading about arachnoiditis and knowing its relationships to surgeries, it does sure sound like her situation. It seemed to have begun after the spinal surgery, her 3rd procedure and it has gotten markedly worse after the surgery on her cervical spine that she had to have so she did not become a paraplegic. > > Thanks for any further ideas or doctor's names. > Joyce > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 I have Arachnoiditis have had it for many years and yes there is no cure. The only treatment is pain control. I saw a pain doctor when I lived in Tucson AZ. many years ago and he said to me if I would let him experiment with me on different narcotics that together we would help me for the rest of my life. About month 7 he hit the nail on the head it was methdone cheap old been around forever methadone only 20 mg.s in the morning in 20 more at night and I have since moved back to CA. to a great doctor who didn't change a thing and for the last 8 years I have been totally pain free unless I stand to long or walk to far. I am on steroids right now and have been for more than a year but it was for lung problems not the Arachnoiditis but I have taken them for my back and they didn't do much for me. They are dangerous I have had osteoporosis since I was in my 40's I am now 60 years old. I am very careful about my movements. I do not want to die of a broken hip from a fall. My sister also has osteoporosis due to steroids also she now has a broken back that will never heal and she is in pain 24/7.She is only 58 years old. I have also had the injections. Please do not try them they may helf for a short time but they cause more damage in the long run. Arachnoiditis is progressive and can and will get worse and if you take the injections the progression will get worse very quickly. Please listen to the people here they know what their talking about. Janice Re: burning pain I have arachnoiditis also. My neuro will only give me steroids as a last choice because steroids are truly horrible drugs. They do major damage to your body. Long term use can cause fractures which could compound the problems with the arachnoiditis. They do make me feel better for about a week, but not with the chance of winding up with more fractures later, and not to mention all the other immediate side effects (mood changes, weight gain which is not good for back pain, etc.). I would caution anyone about steroids. Research them before you use them. Unfortunately there is no cure for arachnoiditis and you just have to learn which combo of medications work well enough for you to have some type of life. It is unending pain and it is progressive so it will not get better. Sad but true. I hope she finds a better pain doctor or the right combination of pain meds. It took me awhile but I finally have a decent combination that allows me to have somewhat of a life around the pain. I still hurt but I don't want to increase my med's because I don't want to be zoned out all the time. Barb > > > Thanks for the comments. I do recall that she has been diagnosed with arachnoiditis and it seems her pain doctor doesn't think he can do anything more for her besides high amounts of narcotics and neurontin (she can't tolerate nsaids). But it seems to me she needs further treatment and she is desperate for it. In my research just this morning, I've seen that oral or injected steroids are sometimes used. Of course there are negatives for those. But her life is not tolerable the way it is now. So, something more needs to be done. > > Does anyone know of good neurologists in the Los Angeles area? We have already applied to join COFWA but while waiting, I thought I'd ask this group if they know someone they'd recommend or have further comments. Reading about arachnoiditis and knowing its relationships to surgeries, it does sure sound like her situation. It seemed to have begun after the spinal surgery, her 3rd procedure and it has gotten markedly worse after the surgery on her cervical spine that she had to have so she did not become a paraplegic. > > Thanks for any further ideas or doctor's names. > Joyce > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 I am sorry I forgot the most important part of the message. Find a doctor who knows what Arachnoiditis is and who is not afraid to experiment with different drugs in different doses until you and he/she have found the ideal drug and the ideal dose that fits just you. Stick with the doctor and you hopefully get lifelong pain relief.My doctor is only about 30 so I have it made if were careful I have a few more years and he will outlive me so he will treat me until the end. Janice Re: burning pain I have arachnoiditis also. My neuro will only give me steroids as a last choice because steroids are truly horrible drugs. They do major damage to your body. Long term use can cause fractures which could compound the problems with the arachnoiditis. They do make me feel better for about a week, but not with the chance of winding up with more fractures later, and not to mention all the other immediate side effects (mood changes, weight gain which is not good for back pain, etc.). I would caution anyone about steroids. Research them before you use them. Unfortunately there is no cure for arachnoiditis and you just have to learn which combo of medications work well enough for you to have some type of life. It is unending pain and it is progressive so it will not get better. Sad but true. I hope she finds a better pain doctor or the right combination of pain meds. It took me awhile but I finally have a decent combination that allows me to have somewhat of a life around the pain. I still hurt but I don't want to increase my med's because I don't want to be zoned out all the time. Barb > > > Thanks for the comments. I do recall that she has been diagnosed with arachnoiditis and it seems her pain doctor doesn't think he can do anything more for her besides high amounts of narcotics and neurontin (she can't tolerate nsaids). But it seems to me she needs further treatment and she is desperate for it. In my research just this morning, I've seen that oral or injected steroids are sometimes used. Of course there are negatives for those. But her life is not tolerable the way it is now. So, something more needs to be done. > > Does anyone know of good neurologists in the Los Angeles area? We have already applied to join COFWA but while waiting, I thought I'd ask this group if they know someone they'd recommend or have further comments. Reading about arachnoiditis and knowing its relationships to surgeries, it does sure sound like her situation. It seemed to have begun after the spinal surgery, her 3rd procedure and it has gotten markedly worse after the surgery on her cervical spine that she had to have so she did not become a paraplegic. > > Thanks for any further ideas or doctor's names. > Joyce > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 Thanks so much for all of your replies. I would be interested to know what are some of the combinations of medications people have found to work for them for their arachnoiditis? A big part of the problem for my friend is that she is already on high doses of narcotics and has a very high tolerance. Also, does anyone else experience facial flushing along with their condition -- and feeling very hot all over? Is there anything that can be done for that? Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2011 Report Share Posted April 8, 2011 Profuse sweating especailly in the head is common in people with Arachnoiditis. I have talked to hundres of us and we all said the same thing about sweating. I sweat so bad it's embarassing when it rolls out of my head and runs off my ears and neck. Janice Re: burning pain Thanks so much for all of your replies. I would be interested to know what are some of the combinations of medications people have found to work for them for their arachnoiditis? A big part of the problem for my friend is that she is already on high doses of narcotics and has a very high tolerance. Also, does anyone else experience facial flushing along with their condition -- and feeling very hot all over? Is there anything that can be done for that? Joyce Quote Link to comment Share on other sites More sharing options...
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