[QUAD-L] Pain and AD
William, If you hurt your hip or other joints and latter on you are having trouble extending them or pain. I'd ask your doc about H.O.Heterotopic Ossification. Lots of quads get it. It's basically your joints get calcified. It can be treated with medication. --- I have developed that same problem. My legs tend to stay contracted. I can force them semi-straight, but they bounce right back up. At night they just about kill me. They feel like taut rubberbands that tremble and shake..and hurt. Baclofen helps a bit, but not much. Makes it hell to put on my pants. I too was in a wreck that broke my legs and jammed my hips (1993). I guess the results are now catching me. Wm. Willis
FW: Re: [QUAD-L] Pain and AD
I have developed that same problem. My legs tend to stay contracted. I can force them semi-straight, but they bounce right back up. At night they just about kill me. They feel like taut rubberbands that tremble and shake..and hurt. Baclofen helps a bit, but not much. Makes it hell to put on my pants. I too was in a wreck that broke my legs and jammed my hips (1993). I guess the results are now catching me. Wm. Willis From: Greg [EMAIL PROTECTED] To: Lana Baugh [EMAIL PROTECTED] CC: quad-list@eskimo.com Subject: Re: [QUAD-L] Pain and AD Date: Sun, 21 Aug 2005 13:35:29 -0700 I take Neurontin too, but for me, that only helps with the arm tingling and some arm pain. It does nothing for my real bad body pain. 2 years ago, I went into the ER spamming very bad, hard enough to be grunting. I as breathing hard, but felt like I was not getting enough air. Almost panic attacks. One day I noticed my right leg would not goes perfectly straight, it would if you pushed it, but once you let go my knee would pop up about 4 inches. My right thigh hurt so bad I was going crazy. It felt like it was being crushed by a vice. I would wakeup from nightmares of my leg being on fire. After a bloodclot test, catscan, and MRI, they found I had H.O. (sp? Hepeotopic Ossification) on my hip. A year before I slightly hurt my hip and the bruise on my hip calcified into bone. Grew like tree branches into my muscles. So I guess I was having AD but without the sweating. They got the H.O. to shrink, but the pain is still there. The MRI also showed a Thing on my butt, though under the skin. No sore every broke threw. I changed to a Roho, do more pressure releases, etc. After a year they did a ultrasound and found nothing, but they would not do another MRI. They said it could have been a sore, or some bruising around the bone after 20 years of sitting. They still don't know for sure what is causing the pain. They say neither one of those should cause that bad of pain. I think it's obviously one of those things. Greg - Original Message - Gabe takes 2400mg of neurontin for pain. Recently I increased oral baclofen and pain is reduced significantly. However the AD still appears everyday. We have seen Ad appear over anything. Wrinkled sheets, underware too tight, you name it. I think you're right we need to explore the kidney stones and gall stone. Thanks, Lana Gabe's mom From: Greg [mailto:[EMAIL PROTECTED] Sent: Thursday, August 18, 2005 1:19 PM To: Lana Baugh Subject: Re: [QUAD-L] Pain and AD I'm no expert, but in my 23 years of being a quad, doctors have often said that one thing or another should not cause AD or that much pain. BUT they were wrong. I would guess kidney and gall stones would hurt even if small. My aide had to go to the ER from stomach pain and it was gall stones. I've had AD from small things like my shoes (very loose shoes, but my feet swell), or just my Superpubic cath not clogged but just needing to be moved around. Maybe it gets poking my inner bladder... who knows. Is he on pain meds other than Baclofen? I have to take 40mg of Oxycontin for my pain. I tried all those spasm pills, none worked for me. Oxycontin stopped my spasms completely and helps the pain a lot. Greg - Original Message - From: Lana Baugh To: quad-list@eskimo.com Sent: Tuesday, August 16, 2005 6:59 PM Subject: [QUAD-L] Pain and AD I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the doc's. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it's possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it's the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is.. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. I've made an apt for him to see his rehab doc. Until then I'm going to give him oral baclofen everyday as an experiment
Re: Re: [QUAD-L] Pain and AD
I'm an incomplete para but have the same problems. My legs wouldn't go straight when I wanted them to or would shoot straight and lock when I wanted to bend them. I take 1200mg of neurontin 3x a day and 40mg of baclofen 3x a day. My doc started working zanelfex into it. When I saw the pain specialist, he put me on a low dose of methadone and it helped everything considerably. I still have pain but no where near as bad and helped my spasms. Stacy - Original Message - From: William Willis To: quad-list@eskimo.com Sent: Monday, August 22, 2005 9:14 PM Subject: FW: Re: [QUAD-L] Pain and AD I have developed that same problem. My legs tend to stay contracted. I can force them semi-straight, but they bounce right back up. At night they just about kill me. They feel like taut rubberbands that tremble and shake..and hurt. Baclofen helps a bit, but not much. Makes it hell to put on my pants. I too was in a wreck that broke my legs and jammed my hips (1993). I guess the results are now catching me. Wm. WillisFrom: "Greg" [EMAIL PROTECTED]To: "Lana Baugh" [EMAIL PROTECTED]CC: quad-list@eskimo.comSubject: Re: [QUAD-L] Pain and ADDate: Sun, 21 Aug 2005 13:35:29 -0700I take Neurontin too, but for me, that only helps with the arm tingling and some arm pain. It does nothing for my real bad body pain.2 years ago, I went into the ER spamming very bad, hard enough to be grunting. I as breathing hard, but felt like I was not getting enough air. Almost panic attacks.One day I noticed my right leg would not goes perfectly straight, it would if you pushed it, but once you let go my knee would pop up about 4 inches.My right thigh hurt so bad I was going crazy. It felt like it was being crushed by a vice. I would wakeup from nightmares of my leg being on fire.After a bloodclot test, catscan, and MRI, they found I had H.O. (sp? Hepeotopic Ossification) on my hip. A year before I slightly hurt my hip and the bruise on my hip calcified into bone. Grew like tree branches into my muscles.So I guess I was having AD but without the sweating.They got the H.O. to shrink, but the pain is still there.The MRI also showed a "Thing" on my butt, though under the skin. No sore every broke threw. I changed to a Roho, do more pressure releases, etc. After a year they did a ultrasound and found nothing, but they would not do another MRI. They said it could have been a sore, or some bruising around the bone after 20 years of sitting.They still don't know for sure what is causing the pain. They say neither one of those should cause that bad of pain. I think it's obviously one of those things.Greg- Original Message -Gabe takes 2400mg of neurontin for pain. Recently I increased oral baclofen and pain is reduced significantly. However the AD still appears everyday. We have seen Ad appear over anything. Wrinkled sheets, underware too tight, you name it. I think you're right we need to explore the kidney stones and gall stone.Thanks,LanaGabe's momFrom: Greg [mailto:[EMAIL PROTECTED]Sent: Thursday, August 18, 2005 1:19 PMTo: Lana BaughSubject: Re: [QUAD-L] Pain and ADI'm no expert, but in my 23 years of being a quad, doctors have often said that one thing or another should not cause AD or that much pain. BUT they were wrong.I would guess kidney and gall stones would hurt even if small. My aide had to go to the ER from stomach pain and it was gall stones. I've had AD from small things like my shoes (very loose shoes, but my feet swell), or just my Superpubic cath not clogged but just needing to be moved around. Maybe it gets poking my inner bladder... who knows.Is he on pain meds other than Baclofen? I have to take 40mg of Oxycontin for my pain. I tried all those spasm pills, none worked for me. Oxycontin stopped my spasms completely and helps the pain a lot.Greg- Original Message -From: Lana BaughTo: quad-list@eskimo.comSent: Tuesday, August 16, 2005 6:59 PMSubject: [QUAD-L] Pain and ADI have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the doc's. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it's possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it's the cause.So I started thinking about when was th
Re: [QUAD-L] Pain and AD
I take Neurontin too, but for me, that only helps with the arm tingling and some arm pain. It does nothing for my real bad body pain. 2 years ago, I went into the ER spamming very bad, hard enough to be grunting.I as breathing hard, but felt like I was not getting enough air. Almost panic attacks. One day I noticed my right leg would not goes perfectly straight, it would if you pushed it, but once you let go my knee would pop up about 4 inches. My right thigh hurt so bad I was going crazy. It felt like it was being crushed by a vice. Iwould wakeup from nightmares of my leg being on fire. After a bloodclot test, catscan, and MRI, they found I had H.O. (sp? Hepeotopic Ossification) on my hip. A year before I slightly hurt my hip and the bruise on my hip calcified into bone. Grew like tree branches into my muscles. So I guess I was having AD but without the sweating. They got the H.O. to shrink, but the pain is still there. The MRI also showed a "Thing" on my butt, though under the skin. No sore every broke threw. I changed to a Roho, do more pressure releases, etc. After a year they did a ultrasound and found nothing, but they would not do another MRI. They said it could have been a sore, or some bruising around the bone after 20 years of sitting. They still don't know for sure what is causing the pain. They say neither one of those should cause that bad of pain. I think it's obviously one of those things. Greg - Original Message - Gabe takes 2400mg of neurontin for pain. Recently I increased oral baclofen and pain is reduced significantly. However the AD still appears everyday. We have seen Ad appear over anything. Wrinkled sheets, underware too tight, you name it. I think youre right we need to explore the kidney stones and gall stone. Thanks, Lana Gabes mom From: Greg [mailto:[EMAIL PROTECTED] Sent: Thursday, August 18, 2005 1:19 PMTo: Lana BaughSubject: Re: [QUAD-L] Pain and AD I'm no expert, but in my 23 years of being a quad, doctors have often said that one thing or another should not cause AD or that much pain. BUT they were wrong. I would guess kidney and gall stones would hurt even if small. My aide had to go to the ER from stomach pain and it was gall stones. I've had AD from small things like my shoes (very loose shoes, but my feet swell), or just my Superpubic cath not clogged but just needing to be moved around. Maybe it gets poking my inner bladder... who knows. Is he on pain meds other than Baclofen? I have to take 40mg of Oxycontin for my pain. I tried all those spasm pills, none worked for me. Oxycontin stopped my spasms completely and helps the pain a lot. Greg - Original Message - From: Lana Baugh To: [EMAIL PROTECTED] Sent: Tuesday, August 16, 2005 6:59 PM Subject: [QUAD-L] Pain and AD I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the docs. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says its possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts its the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is . could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. Ive made an apt for him to see his rehab doc. Until then Im going to give him oral baclofen everyday as an experiment. What do you guys think? Im asking you guys because Gabe cant tell me everything thats going on. When it comes to this problem he can just tell me about the pain. Help! Gabes mom
RE: [QUAD-L] Pain and AD
Luke, Thanks for the info. Ill talk to the doc about it. Its one thing we havent checked. Thanks, Lana, Gabes mom From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, August 18, 2005 9:45 AM To: [EMAIL PROTECTED] Subject: Re: [QUAD-L] Pain and AD Lana let me just tell you this is my experience and Gabe may be different. Gabes injury is definitely different from mine, but i'll tell youhow i've overcome and coped. now that i'm off the pump, for 2yrs, i still have spasms (i take baclofen zanaflex). i try to drink all the water i can, along with water i drink juice, ensure w/ fiber (i do not drink soda, it contains caffeine which can take calcium out of your body). eating is also a big part in pain In my experience. i notice that when i don't eat enough my hips and tailbone would hurt bad, i couldn't sit in my chair for more than 30 min. i have a slender build so i try to eat all meals, a snack, and 2 ensures (i still don't gain much). i also found out that i have osteoporosis, which i believe was adding to my pain. my doctor started me on a drug to help slow and possible reverse osteoporosis before i started this med i had horrible back pain that forced me to stay in bed, which isn't good to do. it did not eliminate all my pain, i had to exercise and stretch (stretching was really painful). i use to go to the emergency room all the time thinking my bones were breaking but they never found any. when i do experience pain, i notice it's because i'm not sticking to my routine. i am only telling you what has worked for me. i would ask your doctorabout osteoporosis, mine went undiagnosed for awhile. hope this helps luke WebMD with AOL Health - Drink Too Many Colas, and Your Bones May Pay the Price In a message dated 8/18/2005 3:15:47 AM Central Standard Time, [EMAIL PROTECTED] writes: Luke, Gabe is 32 years old and 10 years post and he has a C-4-5-6-incomplete injury. It was caused by pressure from a seizure producing a spinal cord stroke following a laminectomy. His electric chair tilts and that helps. We fought with the insurance co. and he will get a new manual called tilt in space soon. He gets very worn out when he uses the e-chair so that limits his activities. He uses a ROHO-quatro cushion. The first thing we checked on was a pressure sore and UTI. While his baclofen pump has been a pain in the ass sometimes it has reduced pain significantly. He is on his third pump. Hope I answered the questions. Im desperate here. Any help you can give. Lana Gabes mom
RE: [QUAD-L] Pain and AD
Luke, Gabe is 32 years old and 10 years post and he has a C-4-5-6-incomplete injury. It was caused by pressure from a seizure producing a spinal cord stroke following a laminectomy. His electric chair tilts and that helps. We fought with the insurance co. and he will get a new manual called tilt in space soon. He gets very worn out when he uses the e-chair so that limits his activities. He uses a ROHO-quatro cushion. The first thing we checked on was a pressure sore and UTI. While his baclofen pump has been a pain in the ass sometimes it has reduced pain significantly. He is on his third pump. Hope I answered the questions. Im desperate here. Any help you can give. Lana Gabes mom From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, August 17, 2005 8:58 AM To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] Pain and AD Gabe's Mom, i knowexactly what he is going through. i had the same problem for a number of years. serious pain (in my hips, back, tailbone), dysreflexia, horrible spasms. i really thought i was going to die and everyone that came around me just felt bad because no one could help.iwas always taking pain pills. i also tried the baclofen pump, with poor results and numerous hospital stays trying to find out why it wasn't doing what it is supposed to do.i only had the pump for a couple of years and i had to have a lot of surgeries. (die studies, re-gluing, pump changing) i also found the pump areawould hurt to the touch.after i had the pump removed spinal fluid kept leaking out of my back through the stitches for about a week. what level is your son? how long has it been since his accident?is he incomplete or complete? what kindof wheelchair does he have? does it tilt? What kind of cushion? does he have a pressure sore? answer these questions and I'll see if i can come up with some ideas. i rarely have pain anymore buti still get dysreflexia sometimes and i've found that if i drink plenty of water, more than what i'm thirsty for sometimes,that i don't get dysreflexia as much. luke c-5/6 incomplete, 5yrs post, got hurt when i was 17 riding a dirtbike In a message dated 8/16/2005 9:00:10 PM Central Standard Time, [EMAIL PROTECTED] writes: I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the docs. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says its possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts its the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. Ive made an apt for him to see his rehab doc. Until then Im going to give him oral baclofen everyday as an experiment. What do you guys think? Im asking you guys because Gabe cant tell me everything thats going on. When it comes to this problem he can just tell me about the pain. Help! Gabes mom
RE: [QUAD-L] Pain and AD
John, Thanks for your response. We watch the BP like a hawk. Gabe takes procardia for BP. I was hoping that I could keep some pain down with the baclofen and then he wouldnt have AD and wouldnt need to take procardia. Gabe even has BP stuff equipment and meds in his back pack. Gabe has a syrnyx (sp?) at the level of his injury. It isnt shunted. The info on calcium deposit is good info. Ill take it and the rest of the info to the doc with Gabe. Thanks, Lana Gabes mom From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, August 17, 2005 2:46 PM To: quad-list@eskimo.com Subject: Re: [QUAD-L] Pain and AD Pain is a big time cause of AD. Sometimes it takes a real intuitive Dr. to find the source of the pain and relieve it. After 29 years I've got some deformities from my original accident that can cause AD. Calcium tends to deposit randomly on quads. It leaches from the bones and turns to stones everywhere else. When it does attache to existing bone it often forms spurs which causes a glorious arthritis pain. If had spurs removed because they punctured the skin. I knew a quad that had a stomach ulcer that claimed he had a pain similar to what you described and ittook awhile topinpoint. Keep an eye on his blood pressure during AD and try to have something (baclophin is probably not the best thing to give him) to bring down his BP if it gets to climbing too high. This gives you a chance to try to find the source of the AD. A full bowel or bladder can cause the sameAD response. AD kills most quads. I take a strong pain killer several times a day. I don't get a buzz, but I don't shake and spasm all over. I really hate when my cousin calls me Dr. Strangelove. When the flow of spinal fluid is interrupted it can cause small cyst-like things on the spinal cord (syringomyelia) that can cause a myriad of inexplicable pains. Best Wishes, john In a message dated 8/17/2005 10:59:44 A.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Gabe's Mom, i knowexactly what he is going through. i had the same problem for a number of years. serious pain (in my hips, back, tailbone), dysreflexia, horrible spasms. i really thought i was going to die and everyone that came around me just felt bad because no one could help.iwas always taking pain pills. i also tried the baclofen pump, with poor results and numerous hospital stays trying to find out why it wasn't doing what it is supposed to do.i only had the pump for a couple of years and i had to have a lot of surgeries. (die studies, re-gluing, pump changing) i also found the pump areawould hurt to the touch.after i had the pump removed spinal fluid kept leaking out of my back through the stitches for about a week. what level is your son? how long has it been since his accident?is he incomplete or complete? what kindof wheelchair does he have? does it tilt? What kind of cushion? does he have a pressure sore? answer these questions and I'll see if i can come up with some ideas. i rarely have pain anymore buti still get dysreflexia sometimes and i've found that if i drink plenty of water, more than what i'm thirsty for sometimes,that i don't get dysreflexia as much. luke c-5/6 incomplete, 5yrs post, got hurt when i was 17 riding a dirtbike In a message dated 8/16/2005 9:00:10 PM Central Standard Time, [EMAIL PROTECTED] writes: I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the docs. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says its possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts its the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. Ive made an apt for him to see his rehab doc. Until then Im going to give him oral baclofen everyday as an experiment. What do you guys think? Im asking you guys because Gabe cant tell me
Re: [QUAD-L] Pain and AD
When I was in rehab and I was being manually catheterized before I was able to use condom catheters I had a perpetual UTI. Any time before 3-5 PM I would start to get AD, severe shakes, sweats and posturing of the arms. I take oral Baclofen so I do not know anything about the Baclofen pump but I would seriously consider getting a second opinion from another urologist because of the kidney and bladder stones. Jim
Re: [QUAD-L] Pain and AD
Gabe's Mom, i knowexactly what he is going through. i had the same problem for a number of years. serious pain (in my hips, back, tailbone), dysreflexia, horrible spasms. i really thought i was going to die and everyone that came around me just felt bad because no one could help.iwas always taking pain pills. i also tried the baclofen pump, with poor results and numerous hospital stays trying to find out why it wasn't doing what it is supposed to do.i only had the pump for a couple of years and i had to have a lot of surgeries. (die studies, re-gluing, pump changing) i also found the pump areawould hurt to the touch.after i had the pump removed spinal fluid kept leaking out of my back through the stitches for about a week. what level is your son? how long has it been since his accident?is he incomplete or complete? what kindof wheelchair does he have? does it tilt? What kind of cushion? does he have a pressure sore? answer these questions and I'll see if i can come up with some ideas. i rarely have pain anymore buti still get dysreflexia sometimes and i've found that if i drink plenty of water, more than what i'm thirsty for sometimes,that i don't get dysreflexia as much. luke c-5/6 incomplete, 5yrs post, got hurt when i was 17 riding a dirtbike In a message dated 8/16/2005 9:00:10 PM Central Standard Time, [EMAIL PROTECTED] writes: I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the doc’s. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it’s possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it’s the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is…. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. I’ve made an apt for him to see his rehab doc. Until then I’m going to give him oral baclofen everyday as an experiment. What do you guys think? I’m asking you guys because Gabe can’t tell me everything that’s going on. When it comes to this problem he can just tell me about the pain. Help! Gabe’s mom
Re: [QUAD-L] Pain and AD
Pain is a big time cause of AD. Sometimes it takes a real intuitive Dr. to find the source of the pain and relieve it. After 29 years I've got some deformities from my original accident that can cause AD. Calcium tends to deposit randomly on quads. It leaches from the bones and turns to stones everywhere else. When it does attache to existing bone it often forms spurs which causes a glorious arthritis pain. If had spurs removed because they punctured the skin. I knew a quad that had a stomach ulcer that claimed he had a pain similar to what you described and ittook awhile topinpoint. Keep an eye on his blood pressure during AD and try to have something (baclophin is probably not the best thing to give him) to bring down his BP if it gets to climbing too high. This gives you a chance to try to find the source of the AD. A full bowel or bladder can cause the sameAD response. AD kills most quads. I take a strong pain killer several times a day. I don't get a buzz, but I don't shake and spasm all over. I really hate when my cousin calls me Dr. Strangelove. When the flow of spinal fluid is interrupted it can cause small cyst-like things on the spinal cord (syringomyelia) that can cause a myriad of inexplicable pains. Best Wishes, john In a message dated 8/17/2005 10:59:44 A.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Gabe's Mom, i knowexactly what he is going through. i had the same problem for a number of years. serious pain (in my hips, back, tailbone), dysreflexia, horrible spasms. i really thought i was going to die and everyone that came around me just felt bad because no one could help.iwas always taking pain pills. i also tried the baclofen pump, with poor results and numerous hospital stays trying to find out why it wasn't doing what it is supposed to do.i only had the pump for a couple of years and i had to have a lot of surgeries. (die studies, re-gluing, pump changing) i also found the pump areawould hurt to the touch.after i had the pump removed spinal fluid kept leaking out of my back through the stitches for about a week. what level is your son? how long has it been since his accident?is he incomplete or complete? what kindof wheelchair does he have? does it tilt? What kind of cushion? does he have a pressure sore? answer these questions and I'll see if i can come up with some ideas. i rarely have pain anymore buti still get dysreflexia sometimes and i've found that if i drink plenty of water, more than what i'm thirsty for sometimes,that i don't get dysreflexia as much. luke c-5/6 incomplete, 5yrs post, got hurt when i was 17 riding a dirtbike In a message dated 8/16/2005 9:00:10 PM Central Standard Time, [EMAIL PROTECTED] writes: I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the doc’s. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it’s possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it’s the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is…. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. I’ve made an apt for him to see his rehab doc. Until then I’m going to give him oral baclofen everyday as an experiment. What do you guys think? I’m asking you guys because Gabe can’t tell me everything that’s going on. When it comes to this problem he can just tell me about the pain. Help! Gabe’s mom
Re: [QUAD-L] Pain and AD
Hi Lana, I would say that most certainly central cord pain or even manipulation (moving wrong) can cause AD. My first shunt failure caused SEVERE AD. I thought I'd surely die. I blame the Dr for putting "his shunting idea" above my injury site (C4/5) and that exacerbated it to the extreme. He took that one out (it was at the base of my brain) and put another in to drain into the pleural cavity (lung cavity). BUT he never stitched closed the hole the other shunt made. So I went through 2 weeks of hell with CSF leaks and my BP and heart-rate going off the charts. He corrected his fault and I slowly recovered. But, off on, over the next 3 yrs ... I'd have bouts of AD that I simply knew were cord related despite my MRIs showing my shunt working. I'm still veryhypersensitive when I'm being moved, etc. But never rule out the spine to wreak havoc w/ our autonomic nervous systems. Lori Michaelson C4/5 complete quad, 25 years post Tucson, AZ ---Original Message--- From: Lana Baugh Date: 08/16/05 19:00:20 To: quad-list@eskimo.com Subject: [QUAD-L] Pain and AD I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the doc’s. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it’s possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it’s the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is…. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. I’ve made an apt for him to see his rehab doc. Until then I’m going to give him oral baclofen everyday as an experiment. What do you guys think? I’m asking you guys because Gabe can’t tell me everything that’s going on. When it comes to this problem he can just tell me about the pain. Help! Gabe’s mom
[QUAD-L] Pain and AD
I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the docs. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says its possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts its the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. Ive made an apt for him to see his rehab doc. Until then Im going to give him oral baclofen everyday as an experiment. What do you guys think? Im asking you guys because Gabe cant tell me everything thats going on. When it comes to this problem he can just tell me about the pain. Help! Gabes mom
