Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Do you know where your feet are, Faith? I fall down, too. I can't feel my feet, so I never know where they are with regard to the rest of my weight. Proprioception, I think that's what it's called. I have none with my feet. I watch them when I walk, but if I stand too long in one spot, I start swaying because I forget to look. As for the rest, malpractice is a strong word, and unless there is serious harm done, most lawyers shy away from it. Someone I know was harmed (apparently not seriously enough) and was told that unless someone dies or you have an instrument left inside you, it isn't necessarily malpractice. That doesn't mean you shouldn't pursue this with all you have. Just thought I'd mention what I found to be really interesting. I would think any damage done by a doctor that wouldn't have been done had good care been extended would be a case for malpractice. Do you self-cath? If not, maybe you should so you can go at regular intervals and then your bladder would be empty more often, and hopefully less chance of going in your pants. --- Faith wrote: > Hi Everyone, > You may remember my story, the menengitis a week and > a half after the > detether and resection on lipoma. Some > complications. When they flew > me via emergency flight to UC , only to have > then discharge me > Christmas Eve with a voucher for a taxi to go to the > Greyhound > station and a voucher to take the Greyhound bus, > with my 45lb > suitcase, to Arcata where my mother picked me up. I > plan to send a > letter to the administrator, and then some. > > anyway, wanted to let everyone know that I'm okay. I > still have the > same problems. It's only been two weeks, and the > menengitis set me > back some, but I have no improvement and I have a > left numb thigh > which I didn't have before. I thought the > incontinence was better, > but I was was wrong. Its intermitant, but its there. > > > Speaking of which, I would like to mention that I > tried depends. They > really suck. At least for me. Serenety full panty > are the best. > Hardly any panty line, and very good at keeping you > from wet spots on > your pants, if you know what I mean. They remind me > of those diaper > type things where the kids sing " I'm a big kid now " . > You know, pull > ups. > > I finaly got my bed wedge, but I'm not sure how to > use it or if I > should. My nurse will be here Wednesday and the > physical therapist of > thursday, so I'll get it all worked out. > > For all of you who seemed as pissed off as I was > about the way the > medical community treated me, and the shit I had to > go through......I > wrote a letter to Kr. Kim Kee and sent a copy to the > State of > California Health Department;in that letter I asked > straight out why > did he lie to me about not having menengitis. I also > sent a letter to > Dr. Luu and a copy to the State of California Health > Department. > Telling him straight out that he was negligent. They > both were. That > was what I figured my resources were as far as any > action to make > sure it didn't go unnoticed. I know I have other > resources such as > malpractice but that is a strong word, and I have no > idea what it > involves, so by no means do I know what action I > will take next. But > I will not let this go. As most of you said to me: > Don't let them get > away with that, it wasn't fair, it wasn't > satifactory medical care. > > Just wanted to check in with that stuff. Oh, my > double vision has > gone. I think it was a side effect of Neurotin that > goes away with > regular use. But I still fall down. I can walk just > fine, then out of > no where my knees buckle, or my body leans its > weight the wrong way. > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hi , I haven't self cathed yet. I just hate catheters. But my roommate in the hospital where I had the laminectomy said she got relaly good at it and it became very easy. See, I'm not sure what is wrong with the incontinence. I mean its intermitant, so right now the serenity pads will do. Its very hard for me to know when my bladder is empty. I don't know if cath would help me in that area, plus theres the timing. When do you know when to cath? Its all so confusing. And new. And I hate it. All this is making me cry almost everyday. Literally. I hate this, as I'm sure everyone else who suffers does. thanks for your response Faith > > > Hi Everyone, > > You may remember my story, the menengitis a week and > > a half after the > > detether and resection on lipoma. Some > > complications. When they flew > > me via emergency flight to UC , only to have > > then discharge me > > Christmas Eve with a voucher for a taxi to go to the > > Greyhound > > station and a voucher to take the Greyhound bus, > > with my 45lb > > suitcase, to Arcata where my mother picked me up. I > > plan to send a > > letter to the administrator, and then some. > > > > anyway, wanted to let everyone know that I'm okay. I > > still have the > > same problems. It's only been two weeks, and the > > menengitis set me > > back some, but I have no improvement and I have a > > left numb thigh > > which I didn't have before. I thought the > > incontinence was better, > > but I was was wrong. Its intermitant, but its there. > > > > > > Speaking of which, I would like to mention that I > > tried depends. They > > really suck. At least for me. Serenety full panty > > are the best. > > Hardly any panty line, and very good at keeping you > > from wet spots on > > your pants, if you know what I mean. They remind me > > of those diaper > > type things where the kids sing " I'm a big kid now " . > > You know, pull > > ups. > > > > I finaly got my bed wedge, but I'm not sure how to > > use it or if I > > should. My nurse will be here Wednesday and the > > physical therapist of > > thursday, so I'll get it all worked out. > > > > For all of you who seemed as pissed off as I was > > about the way the > > medical community treated me, and the shit I had to > > go through......I > > wrote a letter to Kr. Kim Kee and sent a copy to the > > State of > > California Health Department;in that letter I asked > > straight out why > > did he lie to me about not having menengitis. I also > > sent a letter to > > Dr. Luu and a copy to the State of California Health > > Department. > > Telling him straight out that he was negligent. They > > both were. That > > was what I figured my resources were as far as any > > action to make > > sure it didn't go unnoticed. I know I have other > > resources such as > > malpractice but that is a strong word, and I have no > > idea what it > > involves, so by no means do I know what action I > > will take next. But > > I will not let this go. As most of you said to me: > > Don't let them get > > away with that, it wasn't fair, it wasn't > > satifactory medical care. > > > > Just wanted to check in with that stuff. Oh, my > > double vision has > > gone. I think it was a side effect of Neurotin that > > goes away with > > regular use. But I still fall down. I can walk just > > fine, then out of > > no where my knees buckle, or my body leans its > > weight the wrong way. > > > > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Have you considered having a Urologist evaluate? A Re: post-surgery 11/30/05 Hi , I haven't self cathed yet. I just hate catheters. But my roommate in the hospital where I had the laminectomy said she got relaly good at it and it became very easy. See, I'm not sure what is wrong with the incontinence. I mean its intermitant, so right now the serenity pads will do. Its very hard for me to know when my bladder is empty. I don't know if cath would help me in that area, plus theres the timing. When do you know when to cath? Its all so confusing. And new. And I hate it. All this is making me cry almost everyday. Literally. I hate this, as I'm sure everyone else who suffers does. thanks for your response Faith > > > Hi Everyone, > > You may remember my story, the menengitis a week and > > a half after the > > detether and resection on lipoma. Some > > complications. When they flew > > me via emergency flight to UC , only to have > > then discharge me > > Christmas Eve with a voucher for a taxi to go to the > > Greyhound > > station and a voucher to take the Greyhound bus, > > with my 45lb > > suitcase, to Arcata where my mother picked me up. I > > plan to send a > > letter to the administrator, and then some. > > > > anyway, wanted to let everyone know that I'm okay. I > > still have the > > same problems. It's only been two weeks, and the > > menengitis set me > > back some, but I have no improvement and I have a > > left numb thigh > > which I didn't have before. I thought the > > incontinence was better, > > but I was was wrong. Its intermitant, but its there. > > > > > > Speaking of which, I would like to mention that I > > tried depends. They > > really suck. At least for me. Serenety full panty > > are the best. > > Hardly any panty line, and very good at keeping you > > from wet spots on > > your pants, if you know what I mean. They remind me > > of those diaper > > type things where the kids sing " I'm a big kid now " . > > You know, pull > > ups. > > > > I finaly got my bed wedge, but I'm not sure how to > > use it or if I > > should. My nurse will be here Wednesday and the > > physical therapist of > > thursday, so I'll get it all worked out. > > > > For all of you who seemed as pissed off as I was > > about the way the > > medical community treated me, and the shit I had to > > go through......I > > wrote a letter to Kr. Kim Kee and sent a copy to the > > State of > > California Health Department;in that letter I asked > > straight out why > > did he lie to me about not having menengitis. I also > > sent a letter to > > Dr. Luu and a copy to the State of California Health > > Department. > > Telling him straight out that he was negligent. They > > both were. That > > was what I figured my resources were as far as any > > action to make > > sure it didn't go unnoticed. I know I have other > > resources such as > > malpractice but that is a strong word, and I have no > > idea what it > > involves, so by no means do I know what action I > > will take next. But > > I will not let this go. As most of you said to me: > > Don't let them get > > away with that, it wasn't fair, it wasn't > > satifactory medical care. > > > > Just wanted to check in with that stuff. Oh, my > > double vision has > > gone. I think it was a side effect of Neurotin that > > goes away with > > regular use. But I still fall down. I can walk just > > fine, then out of > > no where my knees buckle, or my body leans its > > weight the wrong way. > > > > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hi I'm Judy, haven't been on for a while. I had tethered cord surgery to detach in 1999. Re-attached within one year. I have no bladder or bowel control. I take Levbid for the bowel, it helps some. Last year I saw a urogynocologist (brand new field in this area) He said he can implant a wire into the bladder to help with the control. 50% chance of working. I have had so much pain, tests, etc., I just couldn't handle anymore, so I didn't have it done. I an now thinking about it as my pain and symptons have gotten much worse in the past 6 month. You may want to check into this procedure. I don't remember the medical term though. Also, I need some suggestions from anyone. As I said my pain has returned and increased recently. I am also having knee pain (never had that before) MRI showed slight tear in the ligament, first ortho said that is not the problem it is tendinitis, didn't do anything for me, second ortho said it is arthritis, gave me a steriod injection, that didn't work. The pain is really hard to take, narcotics are not even helping. My family dr said they may both be wrong and it is a nerve problem from my spinal cord. (the sore knee is on the good side of my body) mild nerve damage on that side. HAS ANYONE HAD KNEE PROBLEMS RELATED TO TETHERED CORD? I would appreciate any input. Thanks, Judy > >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 01:02:07 -0000 > >Hi , >I haven't self cathed yet. I just hate catheters. But my roommate in >the hospital where I had the laminectomy said she got relaly good at >it and it became very easy. > >See, I'm not sure what is wrong with the incontinence. I mean its >intermitant, so right now the serenity pads will do. Its very hard >for me to know when my bladder is empty. I don't know if cath would >help me in that area, plus theres the timing. When do you know when >to cath? Its all so confusing. And new. And I hate it. > >All this is making me cry almost everyday. Literally. I hate this, as >I'm sure everyone else who suffers does. > >thanks for your response >Faith > > > > > > > > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > Speaking of which, I would like to mention that I > > > tried depends. They > > > really suck. At least for me. Serenety full panty > > > are the best. > > > Hardly any panty line, and very good at keeping you > > > from wet spots on > > > your pants, if you know what I mean. They remind me > > > of those diaper > > > type things where the kids sing " I'm a big kid now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > State of > > > California Health Department;in that letter I asked > > > straight out why > > > did he lie to me about not having menengitis. I also > > > sent a letter to > > > Dr. Luu and a copy to the State of California Health > > > Department. > > > Telling him straight out that he was negligent. They > > > both were. That > > > was what I figured my resources were as far as any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin that > > > goes away with > > > regular use. But I still fall down. I can walk just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 JUDY JEROME wrote: >Also, I need some suggestions from anyone. As I said my pain has returned >and increased recently. I am also having knee pain (never had that before) >MRI showed slight tear in the ligament, first ortho said that is not the >problem it is tendinitis, didn't do anything for me, second ortho said it is >arthritis, gave me a steriod injection, that didn't work. The pain is >really hard to take, narcotics are not even helping. My family dr said they >may both be wrong and it is a nerve problem from my spinal cord. (the sore >knee is on the good side of my body) mild nerve damage on that side. >HAS ANYONE HAD KNEE PROBLEMS RELATED TO TETHERED CORD? >I would appreciate any input. Thanks, Judy > > Hi Judy, This gives me the opportunity to tell all about a book I am reading. It is called " Pain Free " by Pete Egoscue, sells for $15.00 USD where ever Bantam Books are sold. I know a local guy that suffered severe back injuries from a motorcycle accident several years ago. He was in bad shape, could not stand straight and was in severe pain. He went to San Diego to see Pete about 7 years ago and was cured in two weeks and has been fine ever since. The lady that owns our local book store says that she cant keep this book on the shelf strictly from word-of-mouth by those that have read the book, benefited from the information, and told someone else. The first three chapters deal with muscle/bone anatomy, the why's of what causes pain. For instance why your knee hurts if your hips are out of alignment. Your hips could be out of alignment for any number of reasons including tethered cord (he didnt say that, I did). The rest of the book deals with simple " e-cises " that get your body all lined up and ALLOW it to heal itself. I sent one of Pete's associates an email asking how can I do those e-cises when I have no muscular function in that area, such as from nerve damage. I will tell ya what he says as soon as I hear from him. I think everyone should stop by their local book store, browse the first three chapters of " Pain Free " and see if it might be worth spending $15 on to take it home and try some of the e-cises. I have not actually tried any of them yet but some are the same as what I do in PT. I am going to discuss these with my PT on Monday. To specifically answer your question, YES, tethered cord can be the indirect cause of your knee pain. I had knee pain too, but corrected it with orthotics. Now I have shoulder pain from overcompensating those muscles due to weak back and leg muscles. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Judy, I agree with Rick - I know of several people whose back or hip injuries have led to misalignment of other joints and subsequent damage to them. Particularly interesting is the fact that it is the knee on the " good side " . It could well be that you are intentionally or unintentionally shifting weight to the good side since it is more reliable or less painful. Good luck, --- Rick wrote: > JUDY JEROME wrote: > > >Also, I need some suggestions from anyone. As I > said my pain has returned > >and increased recently. I am also having knee pain > (never had that before) > >MRI showed slight tear in the ligament, first ortho > said that is not the > >problem it is tendinitis, didn't do anything for > me, second ortho said it is > >arthritis, gave me a steriod injection, that didn't > work. The pain is > >really hard to take, narcotics are not even > helping. My family dr said they > >may both be wrong and it is a nerve problem from my > spinal cord. (the sore > >knee is on the good side of my body) mild nerve > damage on that side. > >HAS ANYONE HAD KNEE PROBLEMS RELATED TO TETHERED > CORD? > >I would appreciate any input. Thanks, Judy > > > > > > Hi Judy, > > This gives me the opportunity to tell all about a > book I am reading. It > is called " Pain Free " by Pete Egoscue, sells for > $15.00 USD where ever > Bantam Books are sold. > I know a local guy that suffered severe back > injuries from a motorcycle > accident several years ago. He was in bad shape, > could not stand > straight and was in severe pain. He went to San > Diego to see Pete about > 7 years ago and was cured in two weeks and has been > fine ever since. The > lady that owns our local book store says that she > cant keep this book on > the shelf strictly from word-of-mouth by those that > have read the book, > benefited from the information, and told someone > else. > > The first three chapters deal with muscle/bone > anatomy, the why's of > what causes pain. For instance why your knee hurts > if your hips are out > of alignment. Your hips could be out of alignment > for any number of > reasons including tethered cord (he didnt say that, > I did). The rest of > the book deals with simple " e-cises " that get your > body all lined up and > ALLOW it to heal itself. I sent one of Pete's > associates an email asking > how can I do those e-cises when I have no muscular > function in that > area, such as from nerve damage. I will tell ya what > he says as soon as > I hear from him. > > I think everyone should stop by their local book > store, browse the first > three chapters of " Pain Free " and see if it might be > worth spending $15 > on to take it home and try some of the e-cises. I > have not actually > tried any of them yet but some are the same as what > I do in PT. I am > going to discuss these with my PT on Monday. > > To specifically answer your question, YES, tethered > cord can be the > indirect cause of your knee pain. I had knee pain > too, but corrected it > with orthotics. Now I have shoulder pain from > overcompensating those > muscles due to weak back and leg muscles. > > Rick > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Dear Judy, I read your post and had to answer. I have had 2 spinal surgeries. One by a spine " specialist " for spinal stenosis who knew I had a tethered cord from spina bifida at birth. He operated anyway and hit my spinal cord halfway through the surgery and stopped. I had been having significant knee pain prior to the surgery along with numbing and sciatic pain down my left leg. When I awoke from the surgery I can remember yelling " someone is hammering nails into my knee! " They kept me sedated pretty heavily with morphine while in the hospital and for about 6 weeks after discharge. I thought I was doing pretty well until I tried to come off the morphine. Beside the withdrawal symptoms, every bit of pain came back and even worse...especially the knee pain. That happened in 2003. I set out to research for the best doctor I could find and came up with a neurosurgeon on Long Island who had done 600 tethered cord surgeries 400 on infants and 200 on adults. He told me I was in the right place, made a remark about the other doctor knowing my condition and " exploring " me anyway. In 2004 a year later this neuro operated on me. It took 6 hours. I felt immediate improvement upon waking up and it's been all uphill from there. I know I still have some problems with numbness and slight pain when I sit for long periods. But the pain, numbness and coordination difficulties have diminished markedly and continues to do so. The point I'm making is that your knee pain very much can be caused be nerve damage and pressure from a tethered cord. I wish you well and don't give up...there ARE doctors out there who really know their stuff and can help you. Judy Re: post-surgery 11/30/05 >>Date: Thu, 19 Jan 2006 01:02:07 -0000 >> >>Hi , >>I haven't self cathed yet. I just hate catheters. But my roommate in >>the hospital where I had the laminectomy said she got relaly good at >>it and it became very easy. >> >>See, I'm not sure what is wrong with the incontinence. I mean its >>intermitant, so right now the serenity pads will do. Its very hard >>for me to know when my bladder is empty. I don't know if cath would >>help me in that area, plus theres the timing. When do you know when >>to cath? Its all so confusing. And new. And I hate it. >> >>All this is making me cry almost everyday. Literally. I hate this, as >>I'm sure everyone else who suffers does. >> >>thanks for your response >>Faith >> >> >> >> >> >> >> >> > >> > > Hi Everyone, >> > > You may remember my story, the menengitis a week and >> > > a half after the >> > > detether and resection on lipoma. Some >> > > complications. When they flew >> > > me via emergency flight to UC , only to have >> > > then discharge me >> > > Christmas Eve with a voucher for a taxi to go to the >> > > Greyhound >> > > station and a voucher to take the Greyhound bus, >> > > with my 45lb >> > > suitcase, to Arcata where my mother picked me up. I >> > > plan to send a >> > > letter to the administrator, and then some. >> > > >> > > anyway, wanted to let everyone know that I'm okay. I >> > > still have the >> > > same problems. It's only been two weeks, and the >> > > menengitis set me >> > > back some, but I have no improvement and I have a >> > > left numb thigh >> > > which I didn't have before. I thought the >> > > incontinence was better, >> > > but I was was wrong. Its intermitant, but its there. >> > > >> > > >> > > Speaking of which, I would like to mention that I >> > > tried depends. They >> > > really suck. At least for me. Serenety full panty >> > > are the best. >> > > Hardly any panty line, and very good at keeping you >> > > from wet spots on >> > > your pants, if you know what I mean. They remind me >> > > of those diaper >> > > type things where the kids sing " I'm a big kid now " . >> > > You know, pull >> > > ups. >> > > >> > > I finaly got my bed wedge, but I'm not sure how to >> > > use it or if I >> > > should. My nurse will be here Wednesday and the >> > > physical therapist of >> > > thursday, so I'll get it all worked out. >> > > >> > > For all of you who seemed as pissed off as I was >> > > about the way the >> > > medical community treated me, and the shit I had to >> > > go through......I >> > > wrote a letter to Kr. Kim Kee and sent a copy to the >> > > State of >> > > California Health Department;in that letter I asked >> > > straight out why >> > > did he lie to me about not having menengitis. I also >> > > sent a letter to >> > > Dr. Luu and a copy to the State of California Health >> > > Department. >> > > Telling him straight out that he was negligent. They >> > > both were. That >> > > was what I figured my resources were as far as any >> > > action to make >> > > sure it didn't go unnoticed. I know I have other >> > > resources such as >> > > malpractice but that is a strong word, and I have no >> > > idea what it >> > > involves, so by no means do I know what action I >> > > will take next. But >> > > I will not let this go. As most of you said to me: >> > > Don't let them get >> > > away with that, it wasn't fair, it wasn't >> > > satifactory medical care. >> > > >> > > Just wanted to check in with that stuff. Oh, my >> > > double vision has >> > > gone. I think it was a side effect of Neurotin that >> > > goes away with >> > > regular use. But I still fall down. I can walk just >> > > fine, then out of >> > > no where my knees buckle, or my body leans its >> > > weight the wrong way. >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > >> > >> > __________________________________________________ >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 I can't feel my bladder until it is REALLLLLLYYYYYY full, so I cath at specific times. And because I cath, my bladder is as empty as it can get when I'm done. Cathing isn't a big deal. I know some people really hate it, but to me, it's so much easier than when I didn't cath. I get few infections. I never wet my pants at all anymore. I never have to interrupt a good movie because I get an urge that I can't fight. And I know when I go to the bathroom, so there are no surprises. I still have dreams that I can pee the normal way, but I'm not sad that I have to cath. It was this or horrid infections that caused me so much pain I wanted to die. None of this is any fun. It is very common for people with chronic conditions to get depressed. Don't feel like you should be strong and stoic. If you are sad and depressed, talk to someone about it, a professional. Get help. We all need help getting through this. For some of us, this list is all we need. For others, it takes more reinforcements. ((((HUGS)))) --- Faith wrote: > Hi , > I haven't self cathed yet. I just hate catheters. > But my roommate in > the hospital where I had the laminectomy said she > got relaly good at > it and it became very easy. > > See, I'm not sure what is wrong with the > incontinence. I mean its > intermitant, so right now the serenity pads will do. > Its very hard > for me to know when my bladder is empty. I don't > know if cath would > help me in that area, plus theres the timing. When > do you know when > to cath? Its all so confusing. And new. And I hate > it. > > All this is making me cry almost everyday. > Literally. I hate this, as > I'm sure everyone else who suffers does. > > thanks for your response > Faith > > > > > > > > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week > and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to > have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to > the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me > up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm > okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have > a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its > there. > > > > > > > > > Speaking of which, I would like to mention that > I > > > tried depends. They > > > really suck. At least for me. Serenety full > panty > > > are the best. > > > Hardly any panty line, and very good at keeping > you > > > from wet spots on > > > your pants, if you know what I mean. They remind > me > > > of those diaper > > > type things where the kids sing " I'm a big kid > now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how > to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had > to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to > the > > > State of > > > California Health Department;in that letter I > asked > > > straight out why > > > did he lie to me about not having menengitis. I > also > > > sent a letter to > > > Dr. Luu and a copy to the State of California > Health > > > Department. > > > Telling him straight out that he was negligent. > They > > > both were. That > > > was what I figured my resources were as far as > any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I > have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to > me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin > that > > > goes away with > > > regular use. But I still fall down. I can walk > just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Judy, I'm a Mom of a 25 yr old son with a tethered cord. He was born with it, and had surgery to treat the symptoms, but not the source....He has been detethered twice, once in 2001, and then again a year later. He seems to be worse off then before the surgeries. He has severe leg cramping, bowel problems(which he has had for years) and urinary incontinence as well. I don't know who to turn to, and am sadly watching him get worse.....He does have joint pain too, all related to nerves I'm sure.... Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 01:02:07 -0000 > >Hi , >I haven't self cathed yet. I just hate catheters. But my roommate in >the hospital where I had the laminectomy said she got relaly good at >it and it became very easy. > >See, I'm not sure what is wrong with the incontinence. I mean its >intermitant, so right now the serenity pads will do. Its very hard >for me to know when my bladder is empty. I don't know if cath would >help me in that area, plus theres the timing. When do you know when >to cath? Its all so confusing. And new. And I hate it. > >All this is making me cry almost everyday. Literally. I hate this, as >I'm sure everyone else who suffers does. > >thanks for your response >Faith > > > > > > > > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > Speaking of which, I would like to mention that I > > > tried depends. They > > > really suck. At least for me. Serenety full panty > > > are the best. > > > Hardly any panty line, and very good at keeping you > > > from wet spots on > > > your pants, if you know what I mean. They remind me > > > of those diaper > > > type things where the kids sing " I'm a big kid now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > State of > > > California Health Department;in that letter I asked > > > straight out why > > > did he lie to me about not having menengitis. I also > > > sent a letter to > > > Dr. Luu and a copy to the State of California Health > > > Department. > > > Telling him straight out that he was negligent. They > > > both were. That > > > was what I figured my resources were as far as any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin that > > > goes away with > > > regular use. But I still fall down. I can walk just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 If you don't mind me asking, who was the neurosurgeon on Long Island who did your surgery? Re: post-surgery 11/30/05 Dear Judy, I read your post and had to answer. I have had 2 spinal surgeries. One by a spine " specialist " for spinal stenosis who knew I had a tethered cord from spina bifida at birth. He operated anyway and hit my spinal cord halfway through the surgery and stopped. I had been having significant knee pain prior to the surgery along with numbing and sciatic pain down my left leg. When I awoke from the surgery I can remember yelling " someone is hammering nails into my knee! " They kept me sedated pretty heavily with morphine while in the hospital and for about 6 weeks after discharge. I thought I was doing pretty well until I tried to come off the morphine. Beside the withdrawal symptoms, every bit of pain came back and even worse...especially the knee pain. That happened in 2003. I set out to research for the best doctor I could find and came up with a neurosurgeon on Long Island who had done 600 tethered cord surgeries 400 on infants and 200 on adults. He told me I was in the right place, made a remark about the other doctor knowing my condition and " exploring " me anyway. In 2004 a year later this neuro operated on me. It took 6 hours. I felt immediate improvement upon waking up and it's been all uphill from there. I know I still have some problems with numbness and slight pain when I sit for long periods. But the pain, numbness and coordination difficulties have diminished markedly and continues to do so. The point I'm making is that your knee pain very much can be caused be nerve damage and pressure from a tethered cord. I wish you well and don't give up...there ARE doctors out there who really know their stuff and can help you. Judy Re: post-surgery 11/30/05 >>Date: Thu, 19 Jan 2006 01:02:07 -0000 >> >>Hi , >>I haven't self cathed yet. I just hate catheters. But my roommate in >>the hospital where I had the laminectomy said she got relaly good at >>it and it became very easy. >> >>See, I'm not sure what is wrong with the incontinence. I mean its >>intermitant, so right now the serenity pads will do. Its very hard >>for me to know when my bladder is empty. I don't know if cath would >>help me in that area, plus theres the timing. When do you know when >>to cath? Its all so confusing. And new. And I hate it. >> >>All this is making me cry almost everyday. Literally. I hate this, as >>I'm sure everyone else who suffers does. >> >>thanks for your response >>Faith >> >> >> >> >> >> >> >> > >> > > Hi Everyone, >> > > You may remember my story, the menengitis a week and >> > > a half after the >> > > detether and resection on lipoma. Some >> > > complications. When they flew >> > > me via emergency flight to UC , only to have >> > > then discharge me >> > > Christmas Eve with a voucher for a taxi to go to the >> > > Greyhound >> > > station and a voucher to take the Greyhound bus, >> > > with my 45lb >> > > suitcase, to Arcata where my mother picked me up. I >> > > plan to send a >> > > letter to the administrator, and then some. >> > > >> > > anyway, wanted to let everyone know that I'm okay. I >> > > still have the >> > > same problems. It's only been two weeks, and the >> > > menengitis set me >> > > back some, but I have no improvement and I have a >> > > left numb thigh >> > > which I didn't have before. I thought the >> > > incontinence was better, >> > > but I was was wrong. Its intermitant, but its there. >> > > >> > > >> > > Speaking of which, I would like to mention that I >> > > tried depends. They >> > > really suck. At least for me. Serenety full panty >> > > are the best. >> > > Hardly any panty line, and very good at keeping you >> > > from wet spots on >> > > your pants, if you know what I mean. They remind me >> > > of those diaper >> > > type things where the kids sing " I'm a big kid now " . >> > > You know, pull >> > > ups. >> > > >> > > I finaly got my bed wedge, but I'm not sure how to >> > > use it or if I >> > > should. My nurse will be here Wednesday and the >> > > physical therapist of >> > > thursday, so I'll get it all worked out. >> > > >> > > For all of you who seemed as pissed off as I was >> > > about the way the >> > > medical community treated me, and the shit I had to >> > > go through......I >> > > wrote a letter to Kr. Kim Kee and sent a copy to the >> > > State of >> > > California Health Department;in that letter I asked >> > > straight out why >> > > did he lie to me about not having menengitis. I also >> > > sent a letter to >> > > Dr. Luu and a copy to the State of California Health >> > > Department. >> > > Telling him straight out that he was negligent. They >> > > both were. That >> > > was what I figured my resources were as far as any >> > > action to make >> > > sure it didn't go unnoticed. I know I have other >> > > resources such as >> > > malpractice but that is a strong word, and I have no >> > > idea what it >> > > involves, so by no means do I know what action I >> > > will take next. But >> > > I will not let this go. As most of you said to me: >> > > Don't let them get >> > > away with that, it wasn't fair, it wasn't >> > > satifactory medical care. >> > > >> > > Just wanted to check in with that stuff. Oh, my >> > > double vision has >> > > gone. I think it was a side effect of Neurotin that >> > > goes away with >> > > regular use. But I still fall down. I can walk just >> > > fine, then out of >> > > no where my knees buckle, or my body leans its >> > > weight the wrong way. >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > >> > >> > __________________________________________________ >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hi, this is Faith, One of my biggest problems are with my knees. The tips of the knee caps are so sensative, constantly painful. They give out occasionally. But the pain area is like the size of a quarter on each cap. Even a small tap on the cap hurts extremely bad. I do have spurs, according to an x-ray, but I was told that was nothing to worry about. Anyway, yeah, knee problems are associated with TSC Faith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Saw a Urologist once. They said they couldn't find anything wrong. they measured what was in my bladder after I went to the bathroom and said it was all good. Faith > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > Speaking of which, I would like to mention that I > > > tried depends. They > > > really suck. At least for me. Serenety full panty > > > are the best. > > > Hardly any panty line, and very good at keeping you > > > from wet spots on > > > your pants, if you know what I mean. They remind me > > > of those diaper > > > type things where the kids sing " I'm a big kid now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > State of > > > California Health Department;in that letter I asked > > > straight out why > > > did he lie to me about not having menengitis. I also > > > sent a letter to > > > Dr. Luu and a copy to the State of California Health > > > Department. > > > Telling him straight out that he was negligent. They > > > both were. That > > > was what I figured my resources were as far as any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin that > > > goes away with > > > regular use. But I still fall down. I can walk just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Hi Judy It might be worth having a rheumatologist or a rehabilitation doctor evaluate your knee to see if they believe there is any intrinsic knee problem or figure out if the pain is coming from other issues. And, to examine your joints and evaluate how you walk and use that knee in motion. Some orthopedics look at joints as a " surgical or non-surgical issue " and if they didn't think it was a surgical issue (like an unstable knee from severe ligament tear) then maybe the pain is coming from another source like people have mentioned here (I.e. nerves, hip, feet). If the pain is from a ligament tear it would usually hurt more with use than at rest, and you might have a sensation of it being unstable. If you have excruciating pain at rest, I'd suspect it could be nerve pain (if arthritis has been ruled out). If the pain is worse with walking and use of the knee, then it would make sense to look into your walking and body mechanics. Either way, over the last year I've learned by trial and error and with help of a good physical therapist (my 2nd one after #1 almost left me paralized in my R leg from traction), that although my pain is mainly nerve pain, I can manage it better with strengthening exercises, improving posture and being very careful about what shoes I wear. Any heels, even small or a closed tighter shoe will make my feet and legs burn and cause a bad flare up. Over the summer I used some over the counter shoe inserts with arch support inside a comfortable well padded shoe and that helped a lot. Has anyone had to change their shoes a lot and noticed shoe issues? I have my sister's wedding coming up, the idea of wearing a dress shoe seems traumatic. At least now there are some out there that are more user friendly like naturalizer, aerosoles. There not a fancy but at least I can walk in them. I THINK I'VE MENTIONED THIS BEFORE BUT FOR ANYONE WITH TSC, DON'T EVER ALLOW ANY TYPE OF TRACTION ON YOUR LEGS, UNLESS YOUR ABSOLUTELY SURE IT'S INDICATED. Before I knew I had tsc, my symptoms were mainly R leg pain and tingling so the PT assumed I had " pinched nerve " and really injured that leg by traction. I talked with Dr. Yamada describes some of the things that can trigger tsc to become symptomatic in his articles... " 1. Increasing sports activity or heavy labor causes repeated stress to the spinal cord in the mechanism mentioned above. Sudden stretching of the spinal cord due to violent blow to the spine or fall on the back can cause structural damage in addition to the already oxidative-metabolically impaired neurons. 2. Changes in the spinal column from osteoarthritic spondylosis or herniated disc restricts cephalad movement of the spinal cord and accentuates its stretching on each flexion and extension of the spine2,6,7. 3. Unusually rapid growth after 18 years of age may cause stretching of the spinal cord, which is unable to grow as fast as the spinal column. " Good luck Keep us posted. A Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 01:02:07 -0000 > >Hi , >I haven't self cathed yet. I just hate catheters. But my roommate in >the hospital where I had the laminectomy said she got relaly good at >it and it became very easy. > >See, I'm not sure what is wrong with the incontinence. I mean its >intermitant, so right now the serenity pads will do. Its very hard >for me to know when my bladder is empty. I don't know if cath would >help me in that area, plus theres the timing. When do you know when >to cath? Its all so confusing. And new. And I hate it. > >All this is making me cry almost everyday. Literally. I hate this, as >I'm sure everyone else who suffers does. > >thanks for your response >Faith > > > > > > > > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > Speaking of which, I would like to mention that I > > > tried depends. They > > > really suck. At least for me. Serenety full panty > > > are the best. > > > Hardly any panty line, and very good at keeping you > > > from wet spots on > > > your pants, if you know what I mean. They remind me > > > of those diaper > > > type things where the kids sing " I'm a big kid now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > State of > > > California Health Department;in that letter I asked > > > straight out why > > > did he lie to me about not having menengitis. I also > > > sent a letter to > > > Dr. Luu and a copy to the State of California Health > > > Department. > > > Telling him straight out that he was negligent. They > > > both were. That > > > was what I figured my resources were as far as any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin that > > > goes away with > > > regular use. But I still fall down. I can walk just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Thank you so much. You gave me some hope. It is really discouraging when a doctor doesn't know what a tethered cord is. I am glad to hear someone has some relief. I have been thinking about going elsewhere, no surgeon in Albany will touch me. Thanks again. Judy > >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 08:50:36 -0500 > >Dear Judy, >I read your post and had to answer. I have had 2 spinal surgeries. One by >a spine " specialist " for spinal stenosis who knew I had a tethered cord >from >spina bifida at birth. He operated anyway and hit my spinal cord halfway >through the surgery and stopped. I had been having significant knee pain >prior to the surgery along with numbing and sciatic pain down my left leg. >When I awoke from the surgery I can remember yelling " someone is hammering >nails into my knee! " They kept me sedated pretty heavily with morphine >while in the hospital and for about 6 weeks after discharge. I thought I >was doing pretty well until I tried to come off the morphine. Beside the >withdrawal symptoms, every bit of pain came back and even >worse...especially >the knee pain. That happened in 2003. >I set out to research for the best doctor I could find and came up with a >neurosurgeon on Long Island who had done 600 tethered cord surgeries 400 on >infants and 200 on adults. He told me I was in the right place, made a >remark about the other doctor knowing my condition and " exploring " me >anyway. >In 2004 a year later this neuro operated on me. It took 6 hours. I felt >immediate improvement upon waking up and it's been all uphill from there. >I >know I still have some problems with numbness and slight pain when I sit >for >long periods. But the pain, numbness and coordination difficulties have >diminished markedly and continues to do so. >The point I'm making is that your knee pain very much can be caused be >nerve >damage and pressure from a tethered cord. I wish you well and don't give >up...there ARE doctors out there who really know their stuff and can help >you. >Judy > Re: post-surgery 11/30/05 > >>Date: Thu, 19 Jan 2006 01:02:07 -0000 > >> > >>Hi , > >>I haven't self cathed yet. I just hate catheters. But my roommate in > >>the hospital where I had the laminectomy said she got relaly good at > >>it and it became very easy. > >> > >>See, I'm not sure what is wrong with the incontinence. I mean its > >>intermitant, so right now the serenity pads will do. Its very hard > >>for me to know when my bladder is empty. I don't know if cath would > >>help me in that area, plus theres the timing. When do you know when > >>to cath? Its all so confusing. And new. And I hate it. > >> > >>All this is making me cry almost everyday. Literally. I hate this, as > >>I'm sure everyone else who suffers does. > >> > >>thanks for your response > >>Faith > >> > >> > >> > >> > >> > >> > >> > >> > > >> > > Hi Everyone, > >> > > You may remember my story, the menengitis a week and > >> > > a half after the > >> > > detether and resection on lipoma. Some > >> > > complications. When they flew > >> > > me via emergency flight to UC , only to have > >> > > then discharge me > >> > > Christmas Eve with a voucher for a taxi to go to the > >> > > Greyhound > >> > > station and a voucher to take the Greyhound bus, > >> > > with my 45lb > >> > > suitcase, to Arcata where my mother picked me up. I > >> > > plan to send a > >> > > letter to the administrator, and then some. > >> > > > >> > > anyway, wanted to let everyone know that I'm okay. I > >> > > still have the > >> > > same problems. It's only been two weeks, and the > >> > > menengitis set me > >> > > back some, but I have no improvement and I have a > >> > > left numb thigh > >> > > which I didn't have before. I thought the > >> > > incontinence was better, > >> > > but I was was wrong. Its intermitant, but its there. > >> > > > >> > > > >> > > Speaking of which, I would like to mention that I > >> > > tried depends. They > >> > > really suck. At least for me. Serenety full panty > >> > > are the best. > >> > > Hardly any panty line, and very good at keeping you > >> > > from wet spots on > >> > > your pants, if you know what I mean. They remind me > >> > > of those diaper > >> > > type things where the kids sing " I'm a big kid now " . > >> > > You know, pull > >> > > ups. > >> > > > >> > > I finaly got my bed wedge, but I'm not sure how to > >> > > use it or if I > >> > > should. My nurse will be here Wednesday and the > >> > > physical therapist of > >> > > thursday, so I'll get it all worked out. > >> > > > >> > > For all of you who seemed as pissed off as I was > >> > > about the way the > >> > > medical community treated me, and the shit I had to > >> > > go through......I > >> > > wrote a letter to Kr. Kim Kee and sent a copy to the > >> > > State of > >> > > California Health Department;in that letter I asked > >> > > straight out why > >> > > did he lie to me about not having menengitis. I also > >> > > sent a letter to > >> > > Dr. Luu and a copy to the State of California Health > >> > > Department. > >> > > Telling him straight out that he was negligent. They > >> > > both were. That > >> > > was what I figured my resources were as far as any > >> > > action to make > >> > > sure it didn't go unnoticed. I know I have other > >> > > resources such as > >> > > malpractice but that is a strong word, and I have no > >> > > idea what it > >> > > involves, so by no means do I know what action I > >> > > will take next. But > >> > > I will not let this go. As most of you said to me: > >> > > Don't let them get > >> > > away with that, it wasn't fair, it wasn't > >> > > satifactory medical care. > >> > > > >> > > Just wanted to check in with that stuff. Oh, my > >> > > double vision has > >> > > gone. I think it was a side effect of Neurotin that > >> > > goes away with > >> > > regular use. But I still fall down. I can walk just > >> > > fine, then out of > >> > > no where my knees buckle, or my body leans its > >> > > weight the wrong way. > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > >> > > >> > __________________________________________________ > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Thanks for the info Rick, I will definetly get that book. Keep me posted. Judy > >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 01:31:22 -0700 > >JUDY JEROME wrote: > > >Also, I need some suggestions from anyone. As I said my pain has >returned > >and increased recently. I am also having knee pain (never had that >before) > >MRI showed slight tear in the ligament, first ortho said that is not the > >problem it is tendinitis, didn't do anything for me, second ortho said it >is > >arthritis, gave me a steriod injection, that didn't work. The pain is > >really hard to take, narcotics are not even helping. My family dr said >they > >may both be wrong and it is a nerve problem from my spinal cord. (the >sore > >knee is on the good side of my body) mild nerve damage on that side. > >HAS ANYONE HAD KNEE PROBLEMS RELATED TO TETHERED CORD? > >I would appreciate any input. Thanks, Judy > > > > > >Hi Judy, > >This gives me the opportunity to tell all about a book I am reading. It >is called " Pain Free " by Pete Egoscue, sells for $15.00 USD where ever >Bantam Books are sold. >I know a local guy that suffered severe back injuries from a motorcycle >accident several years ago. He was in bad shape, could not stand >straight and was in severe pain. He went to San Diego to see Pete about >7 years ago and was cured in two weeks and has been fine ever since. The >lady that owns our local book store says that she cant keep this book on >the shelf strictly from word-of-mouth by those that have read the book, >benefited from the information, and told someone else. > >The first three chapters deal with muscle/bone anatomy, the why's of >what causes pain. For instance why your knee hurts if your hips are out >of alignment. Your hips could be out of alignment for any number of >reasons including tethered cord (he didnt say that, I did). The rest of >the book deals with simple " e-cises " that get your body all lined up and >ALLOW it to heal itself. I sent one of Pete's associates an email asking >how can I do those e-cises when I have no muscular function in that >area, such as from nerve damage. I will tell ya what he says as soon as >I hear from him. > >I think everyone should stop by their local book store, browse the first >three chapters of " Pain Free " and see if it might be worth spending $15 >on to take it home and try some of the e-cises. I have not actually >tried any of them yet but some are the same as what I do in PT. I am >going to discuss these with my PT on Monday. > >To specifically answer your question, YES, tethered cord can be the >indirect cause of your knee pain. I had knee pain too, but corrected it >with orthotics. Now I have shoulder pain from overcompensating those >muscles due to weak back and leg muscles. > >Rick > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Im a Mom of a son aged 14 with tethered cord.Like your son he was born with it but we didnt know until 2003 when he woke one morning to find himself incontinent of urine.He had various tests and MRI and they found he had a Lipomylomeningocele and was tethered L5 to S1. He also has bowel problems since birth but we had been led to beleive these were food intollerance issues(how wrong could they have been).He was given a Mitroffanof in 2004 and now caths every 4 hours and takes ditropan.He had his cord detethered in April 05 before the op he had mild back pain now he has constant leg pains and numbness and pins and needles in both legs,he cant sit for very long,but his bladder/bowl remain unchanged. He had a new MRI in Dec and that has shown he has already retethered I dont know what to do for the best he doesnt want further surgery but i am scared for the future if he doesnt.His ns says as he is now 14 he has the choice so at the moment we are in limbo. And to top it all I have 3 other children and they all had MRIs as a precautionary messure and we have just been told the youngest whose 3 has an anomaly on the scan.We dont know what? no one will say but we get to see the ns on the 8th Feb. Sorry I seem to be rambling I have no answers like you I am looking for them.I hope you find yours. Alison mom to 14 lipo l5/s1/ mitroffanof -kerry 17-Liam 9 and 3 Kenaura@... wrote: Judy, I'm a Mom of a 25 yr old son with a tethered cord. He was born with it, and had surgery to treat the symptoms, but not the source....He has been detethered twice, once in 2001, and then again a year later. He seems to be worse off then before the surgeries. He has severe leg cramping, bowel problems(which he has had for years) and urinary incontinence as well. I don't know who to turn to, and am sadly watching him get worse.....He does have joint pain too, all related to nerves I'm sure.... Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 01:02:07 -0000 > >Hi , >I haven't self cathed yet. I just hate catheters. But my roommate in >the hospital where I had the laminectomy said she got relaly good at >it and it became very easy. > >See, I'm not sure what is wrong with the incontinence. I mean its >intermitant, so right now the serenity pads will do. Its very hard >for me to know when my bladder is empty. I don't know if cath would >help me in that area, plus theres the timing. When do you know when >to cath? Its all so confusing. And new. And I hate it. > >All this is making me cry almost everyday. Literally. I hate this, as >I'm sure everyone else who suffers does. > >thanks for your response >Faith > > > > > > > > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > Speaking of which, I would like to mention that I > > > tried depends. They > > > really suck. At least for me. Serenety full panty > > > are the best. > > > Hardly any panty line, and very good at keeping you > > > from wet spots on > > > your pants, if you know what I mean. They remind me > > > of those diaper > > > type things where the kids sing " I'm a big kid now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > State of > > > California Health Department;in that letter I asked > > > straight out why > > > did he lie to me about not having menengitis. I also > > > sent a letter to > > > Dr. Luu and a copy to the State of California Health > > > Department. > > > Telling him straight out that he was negligent. They > > > both were. That > > > was what I figured my resources were as far as any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin that > > > goes away with > > > regular use. But I still fall down. I can walk just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 So sorry to hear you go through all this, Alison...there are a lot of helpful people in this group so you're in the right place.... I was thinking what might help and I came up with this idea below ...in addition to considering having your son communicate with other teens that might have these issues or at least meet other doctors that might be able to help him and then possibly make a decision about what his options are...if he's completely against seeing any doctors it might take some time for him to process the information, it's so hard to be a teen with all the regular teen issues plus this. It might make sense to work with a spine rehabilitation doctor and/or neurology to handle the mechanical and pain issues and help him feel better before re-visiting surgical options that might just seem terrifying right now after he had a bad result last time. A few months ago there was someone on here that mentioned difficulties handling her teen son adjusting to tsc, some people mentioned talking to a therapist too...don't give up...it might just take time... It might be very helpful if those people on here that have had success or positive experiences with their NS shared the names. For pediatric neurosurgery, I was given these names by a friend of a friend who had TSC surgery, I can't say for sure that they would be the person to consult for a 2nd surgery but if we start compiling a list of surgeons that people in the group might know with tsc experience (without holding it against anyone, I.e. since every case is so different not every surgeon is the right one for each person). These are the names I was given for pediatric NS: Miami Dr. Ragheb Chicago Dr. Arthur Di Patri 1800-kids-doc Washington DC Children's Hospital Dr Bruce Adult neurosurgery town University Dr. Fraser s Hopkins When I called, they told me to see Dr. Jallo A Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 01:02:07 -0000 > >Hi , >I haven't self cathed yet. I just hate catheters. But my roommate in >the hospital where I had the laminectomy said she got relaly good at >it and it became very easy. > >See, I'm not sure what is wrong with the incontinence. I mean its >intermitant, so right now the serenity pads will do. Its very hard >for me to know when my bladder is empty. I don't know if cath would >help me in that area, plus theres the timing. When do you know when >to cath? Its all so confusing. And new. And I hate it. > >All this is making me cry almost everyday. Literally. I hate this, as >I'm sure everyone else who suffers does. > >thanks for your response >Faith > > > > > > > > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > Speaking of which, I would like to mention that I > > > tried depends. They > > > really suck. At least for me. Serenety full panty > > > are the best. > > > Hardly any panty line, and very good at keeping you > > > from wet spots on > > > your pants, if you know what I mean. They remind me > > > of those diaper > > > type things where the kids sing " I'm a big kid now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > State of > > > California Health Department;in that letter I asked > > > straight out why > > > did he lie to me about not having menengitis. I also > > > sent a letter to > > > Dr. Luu and a copy to the State of California Health > > > Department. > > > Telling him straight out that he was negligent. They > > > both were. That > > > was what I figured my resources were as far as any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin that > > > goes away with > > > regular use. But I still fall down. I can walk just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 I had my cord released by Dr. Jallo at s Hopkins and he was top notch! I would recommend him highly! Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 01:02:07 -0000 > >Hi , >I haven't self cathed yet. I just hate catheters. But my roommate in >the hospital where I had the laminectomy said she got relaly good at >it and it became very easy. > >See, I'm not sure what is wrong with the incontinence. I mean its >intermitant, so right now the serenity pads will do. Its very hard >for me to know when my bladder is empty. I don't know if cath would >help me in that area, plus theres the timing. When do you know when >to cath? Its all so confusing. And new. And I hate it. > >All this is making me cry almost everyday. Literally. I hate this, as >I'm sure everyone else who suffers does. > >thanks for your response >Faith > > > > > > > > > > > > Hi Everyone, > > > You may remember my story, the menengitis a week and > > > a half after the > > > detether and resection on lipoma. Some > > > complications. When they flew > > > me via emergency flight to UC , only to have > > > then discharge me > > > Christmas Eve with a voucher for a taxi to go to the > > > Greyhound > > > station and a voucher to take the Greyhound bus, > > > with my 45lb > > > suitcase, to Arcata where my mother picked me up. I > > > plan to send a > > > letter to the administrator, and then some. > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > still have the > > > same problems. It's only been two weeks, and the > > > menengitis set me > > > back some, but I have no improvement and I have a > > > left numb thigh > > > which I didn't have before. I thought the > > > incontinence was better, > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > Speaking of which, I would like to mention that I > > > tried depends. They > > > really suck. At least for me. Serenety full panty > > > are the best. > > > Hardly any panty line, and very good at keeping you > > > from wet spots on > > > your pants, if you know what I mean. They remind me > > > of those diaper > > > type things where the kids sing " I'm a big kid now " . > > > You know, pull > > > ups. > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > use it or if I > > > should. My nurse will be here Wednesday and the > > > physical therapist of > > > thursday, so I'll get it all worked out. > > > > > > For all of you who seemed as pissed off as I was > > > about the way the > > > medical community treated me, and the shit I had to > > > go through......I > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > State of > > > California Health Department;in that letter I asked > > > straight out why > > > did he lie to me about not having menengitis. I also > > > sent a letter to > > > Dr. Luu and a copy to the State of California Health > > > Department. > > > Telling him straight out that he was negligent. They > > > both were. That > > > was what I figured my resources were as far as any > > > action to make > > > sure it didn't go unnoticed. I know I have other > > > resources such as > > > malpractice but that is a strong word, and I have no > > > idea what it > > > involves, so by no means do I know what action I > > > will take next. But > > > I will not let this go. As most of you said to me: > > > Don't let them get > > > away with that, it wasn't fair, it wasn't > > > satifactory medical care. > > > > > > Just wanted to check in with that stuff. Oh, my > > > double vision has > > > gone. I think it was a side effect of Neurotin that > > > goes away with > > > regular use. But I still fall down. I can walk just > > > fine, then out of > > > no where my knees buckle, or my body leans its > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Alison, As you said, your son doesn't want any more surgeries, but what to do? I have 3 other children, all younger with no problems. My son also has hammer toes, so after his last surgery, they put pins in his toes, and lengthened his achilles tendon. But his toes are curled up once again. We saw most of the major problems when he started to grow at 16. So keep an eye on your son......... All the best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Judy, Yes,I have pain in my left knee all the time,and was told by every doctor I saw,it was coming from my spinal cord,it was nerve pain from the spina bifida..I was in so much pain in my body,I had a pain pump ,put into my abdomen,with a cathetar , that is put into my spinal cord.I still have pain but not as bad as it was before I had the pump.The pump has Dilaudid in it. It is supposed to be 4 times stronger than Morphine. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi all Thanks for all your replys Alison Kenaura@... wrote: Alison, As you said, your son doesn't want any more surgeries, but what to do? I have 3 other children, all younger with no problems. My son also has hammer toes, so after his last surgery, they put pins in his toes, and lengthened his achilles tendon. But his toes are curled up once again. We saw most of the major problems when he started to grow at 16. So keep an eye on your son......... All the best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 thank you, I have three drs telling me three different things. I don't know about you, but sometimes they blame the tethered cord for pain that is caused by something else. It is hard to deal with. I have never taken anything stronger than Lortab, now that does not work either. Thanks again for responding. Judy >From: MoeMcd4@... >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: post-surgery 11/30/05 >Date: Sun, 22 Jan 2006 14:01:35 EST > >Hi Judy, > Yes,I have pain in my left knee all the time,and was told by >every doctor I saw,it was coming from my spinal cord,it was nerve pain from >the >spina bifida..I was in so much pain in my body,I had a pain pump ,put into >my >abdomen,with a cathetar , that is put into my spinal cord.I still have pain >but not as bad as it was before I had the pump.The pump has Dilaudid in it. >It >is supposed to be 4 times stronger than Morphine. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 I know exactly how you feel. 30 years ago a neuro surgeon knew I had this and did not tell me. Maybe he didn't know what it was, but if he had mentioned the tether, I could have gone to Boston, etc. and saved years of nerve damage. Now I have no doctor, other than my family dr. I asked him if I should try the incontinence wire (I think it is only done on women) he said as far as he knew there was only a 20% chance of it working. Why go through it. It must be much worse for a man your son's age. Thank God for Levbid, or I would not be able to leave the house at all. I heard there is a good neuro surgeon in Long Island, I don't know his name. I think someone on this website mentioned it. I would call there. Did they tell you it may retether? I guess there is a 50% or higher of it happening. I was never told that. All I got from my surgery was a year of less pain, now I am much worse. Not sure what is going on. I started a new pain management this week, at least I have some relief from meds. I hope he does a MRI just to make sure nothing else is going on. I also have a cyst inside my cord that they would not remove. If that gets larger, I will be in big trouble. Tell your son to hand in there, keep in touch with this website. It is very difficult having this problem, when you have a new pain or sympton, the drs automatically think it is the cord. I am sure many things are missed. The people are great and informative. Write directly if you have any information or questions. JJEROME14@... >From: Kenaura@... >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: post-surgery 11/30/05 >Date: Thu, 19 Jan 2006 17:22:23 -0500 > >Judy, > >I'm a Mom of a 25 yr old son with a tethered cord. He was born with it, and >had surgery to treat the symptoms, but not the source....He has been >detethered twice, once in 2001, and then again a year later. He seems to be >worse off then before the surgeries. He has severe leg cramping, bowel >problems(which he has had for years) and urinary incontinence as well. I >don't know who to turn to, and am sadly watching him get worse.....He does >have joint pain too, all related to nerves I'm sure.... > > > > Re: post-surgery 11/30/05 > >Date: Thu, 19 Jan 2006 01:02:07 -0000 > > > >Hi , > >I haven't self cathed yet. I just hate catheters. But my roommate in > >the hospital where I had the laminectomy said she got relaly good at > >it and it became very easy. > > > >See, I'm not sure what is wrong with the incontinence. I mean its > >intermitant, so right now the serenity pads will do. Its very hard > >for me to know when my bladder is empty. I don't know if cath would > >help me in that area, plus theres the timing. When do you know when > >to cath? Its all so confusing. And new. And I hate it. > > > >All this is making me cry almost everyday. Literally. I hate this, as > >I'm sure everyone else who suffers does. > > > >thanks for your response > >Faith > > > > > > > > > > > > > > > > > > > > > Hi Everyone, > > > > You may remember my story, the menengitis a week and > > > > a half after the > > > > detether and resection on lipoma. Some > > > > complications. When they flew > > > > me via emergency flight to UC , only to have > > > > then discharge me > > > > Christmas Eve with a voucher for a taxi to go to the > > > > Greyhound > > > > station and a voucher to take the Greyhound bus, > > > > with my 45lb > > > > suitcase, to Arcata where my mother picked me up. I > > > > plan to send a > > > > letter to the administrator, and then some. > > > > > > > > anyway, wanted to let everyone know that I'm okay. I > > > > still have the > > > > same problems. It's only been two weeks, and the > > > > menengitis set me > > > > back some, but I have no improvement and I have a > > > > left numb thigh > > > > which I didn't have before. I thought the > > > > incontinence was better, > > > > but I was was wrong. Its intermitant, but its there. > > > > > > > > > > > > Speaking of which, I would like to mention that I > > > > tried depends. They > > > > really suck. At least for me. Serenety full panty > > > > are the best. > > > > Hardly any panty line, and very good at keeping you > > > > from wet spots on > > > > your pants, if you know what I mean. They remind me > > > > of those diaper > > > > type things where the kids sing " I'm a big kid now " . > > > > You know, pull > > > > ups. > > > > > > > > I finaly got my bed wedge, but I'm not sure how to > > > > use it or if I > > > > should. My nurse will be here Wednesday and the > > > > physical therapist of > > > > thursday, so I'll get it all worked out. > > > > > > > > For all of you who seemed as pissed off as I was > > > > about the way the > > > > medical community treated me, and the shit I had to > > > > go through......I > > > > wrote a letter to Kr. Kim Kee and sent a copy to the > > > > State of > > > > California Health Department;in that letter I asked > > > > straight out why > > > > did he lie to me about not having menengitis. I also > > > > sent a letter to > > > > Dr. Luu and a copy to the State of California Health > > > > Department. > > > > Telling him straight out that he was negligent. They > > > > both were. That > > > > was what I figured my resources were as far as any > > > > action to make > > > > sure it didn't go unnoticed. I know I have other > > > > resources such as > > > > malpractice but that is a strong word, and I have no > > > > idea what it > > > > involves, so by no means do I know what action I > > > > will take next. But > > > > I will not let this go. As most of you said to me: > > > > Don't let them get > > > > away with that, it wasn't fair, it wasn't > > > > satifactory medical care. > > > > > > > > Just wanted to check in with that stuff. Oh, my > > > > double vision has > > > > gone. I think it was a side effect of Neurotin that > > > > goes away with > > > > regular use. But I still fall down. I can walk just > > > > fine, then out of > > > > no where my knees buckle, or my body leans its > > > > weight the wrong way. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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