Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 I have learned I can exercise, get enough sleep, cook healthy tasty treats, eat healthy foods, express feelings, look better, and feel better. What a wonderful success story !!! Your hard work has paid off. Congratulations! I'm going to look into that cookbook you mentioned, thanks. Regina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 What a great story! THANK YOU for sharing, C! Peace Tyra Kasamba Spiritual Experthttp://www.kasamba.com/Tyra-O My Story Everyone, Everyone has a story. This is my story. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 Kathy, Your story was very helpful. I will let you know how it goes. Thanks very much and all the best. ________________________________ To: tetheredspinalcord Sent: Sun, March 21, 2010 8:16:16 AM Subject: Re: My story  Hi Steve, I am 48, was diagnosed with Lipomeningocele at 37, and have had five untethering surgeries over an approximate 8-10 year period. This is my story. Before the initial untethering, I exercised almost every day and I exercised hard - I was raising four children, worked full-time as a teacher and was enjoying everything in my left except bladder leaking and a left leg that would not build muscle no matter how hard I worked-out. They thought the leaking was from a prolapsed bladder (four children) and I had a bladder tuck surgery which never healed correctly. I could not empty my bladder after this surgery which finally led me to a very smart uro who noticed my flabby left leg and also noted hyper reflexes in my left and right legs/clonus in my ankles and a positive Babinski. He sent me to a neurologist who did an MRI that showed the Lipo. Neuro sent me to a neurosurgeon (nsg) who explained what Lipomeningocele is, why I needed surgery (to possibly return bladder function, to reverse muscle wasting) and what the reflexes and Babinski meant (screwed up nervous system from the tether). I had surgery, woke up in agony, and unfortunately, the pain did not leave - it faded a bit for a while, I went back to work, but couldn't keep up and retired early. My bladder function did not return and within months, other " areas " started to show signs of neuro decline - progressive spasticity, bowel issues, etc. My nsg sent me, with new MRI's in tow to a specialist at Mass Gen. Hosp. This nsg said I never should have had the first untethering - he went on to explain because I had been tethered since birth (obviously before), that my nervous system had rewired at some point to allow for the problems that the tether presented. Because there were not any surgical interventions as a child (I did have odd problems as a child that no one put blame on a tether that my parents knew about, but never told me; thankfully), basically once I reached full height, because these problems I had as a kid had settled down (peeing when I laughed, orthotic problems that were not a big deal), he felt that once I had been untethered, my nervous system tried to 're-heal " , unwired, rewired and rewired incorrectly. Hence pain signals to areas where nothing was wrong (legs, hips, back, buttocks, genital area, feet, etc), bladder/bowel problems, spasticity, etc. That said - he did say I was stuck at that point though. I had had the surgery - was left with decline and needed to decide if I felt another painful surgery was worth the risks - he said he didn't know at that point only time would tell. He just said he was sorry and wished I had come to him first because many adults do not have a full childhood history taken and looked at - if I had, my nsg would have realized I had symptoms as a child that stopped once I reached full height which would have (hopefully) given him pause. I went back to Maine and had another untethering for a spinal cord stuck to scar tissue on the left side. I desperately wanted my body and life back. I so badly wanted it back - because each surgery brought some relief for a time, then decline and more decline than I had before the surgery, I kept chasing this body that was not going to return. I had two spinal fluid leaks (not the kind that can be corrected with blood patches) and needed lengthy surgeries for repairs. After the fourth surgery, I started to lose function once cold air hit me. It would slowly return once warm. This became much worse the more I was exposed to bitter cold air - for whatever reason it sent my nervous system into overdrive. I was housebound in the winter and fall (and some Springs), showered every night, but dreaded the temperate change I was going to experience in the shower, plus the water hitting me hurt. Sheets touching me hurt - socks, pants, etc. Botox injections in my legs helped a lot, but didn't touch the cold weather problem. I had a fifth untethering and the same as above occurred. We had had it - our son, our youngest was a freshman in high school and we decided that once he left for college, we were moving to a southern state, near a good hospital. We waited and four years ago moved to NC. The best thing we ever did and the way things fell in place for us once we put our home on the market in Maine - we should have known how this move was meant to be. Fast-forward - I found a great pain clinic and joined a study for a pain pump filled with gabapentin (an anti-seizure med). It took probably 70% of my back pain away, made my legs less sensitive, but didn't help any other problems. However, without that debilitating back pain, I returned to teaching. I am now losing the use of my right leg, have incredible pain in my legs - to the point where nothing is really helping except laying in bed after work and most of Saturday, then the cycle starts again Monday (work). I am retethered on the right side; hence the right leg loss and back pain has increased but still helped by intrathecal gabapentin. I had a myleogram done in Dec.and my nsg has not recommended surgery " until " I lose the use of my leg or just before (if I can figure that point out). He also offered me a new surgery that has been discussed at length on the list recently. He does not recommend surgery for many reasons - he said the surgery is horrendous on someone that has as much scar tissue as I have - no amount of monitoring helps - he said the outcome rate is not good, and that because of my surgical outcome history, he would also not recommend surgery until the above point. That said, pretty much every area that can be affected is and has been for a while - I forgot to mention the feeling that I lost after the first surgery - lost from my left butt cheek down - a spiraling sensation loss that is permanent in my right leg and now my legs go completely dead - no feeling at all - once Tuesday is here. My right leg drags behind me by Tuesday/Wed. and my left foot drops. No idea why and all my nsg could do was give me hypothesis of why. They're not God and I came to realize that years ago. After each untethering - and as the symptoms returned and more problems came - I would see another nsg in Boston for a second opinion (the one I first saw had retired). Some would say they recommended further surgery - some said no way. No one agreed. I also have a Chiari malformation that thankfully has not needed surgery. I finally realized that for my situation, if I saw a good nsg, one who had a lot of experience, had a decent bed-side manner and was one that I trusted and could talk with - I was not going to run around and get different opinions any longer which is why I am staying put with no surgery right now. I don't know how long I can put it off - I will have surgery, I guess, once I feel that my leg is on its way out or I lose it. I'll be honest, the surgery is painful and although they say you forget pain, for whatever reason, the pain I experience after untetherings is not something I forget even though it only lasts at that level for maybe two days. I do want to emphasize and reiterate, this is my story only. Everyone is different and those that have been on this long enough and still experience problems will tell you this also - for the most part, only those of us with problems remain on the list. Those that get better after surgery usually leave the list eventually - there are a couple that have thankfully remained. However, remember, this is a bit of a lop-sided membership. Let us know what you decide and I hope your pain mgt. group is aggressive in treating the pain. Once it gets ahead of you it's harder to control ... I wish I had been like you though and waited, listened to others, and I wish I had seen more than one nsg. My nsg that did my surgeries is fantastic and never did one thing wrong - but that initial intake may have put me in a different spot. I don't dwell on that at all though and am thankful for many, many things. Good luck - Kathy My story I am a 56 year old male who was diagnosed with TCS about two years ago. Previously to that, i had never experienced any back issues others than the occassional stiffness of aging in an active lifestyle. Two years ago, i woke one morning with severe nerve pain in the lower left back, left buttock and genital area. After failures to get satisfactory answers from my GP, i made my way to a 'pain doctor' who conducted MRI and provdied me with the diagnosis and directed me to a neurosurgeon. This surgeon supported the diagnosis and said that he would not operate 'on his brother' if he had same diagnosis. I left very dejected but not unwilling to pursue the quest for satisfactory answers and physical solutions. Fast forward over the past two years, I have wored to ensure the pain wouldn't alter my lifestyle but it has eventually crept in with more severity (especially during and after sitting) and long stints of standing leaves my 56 year old legs a little weak but standing does relieve the pain a good degree. During these two years, I have seen 3 more neurosurgeons and each of them has been open to surgery and feels like this could lead to relieving pain. They also say that surgery could lead to some paralysis and bladder/bowel dimished function but they go on to say that these are low risk. Each indicate that following surgery, there will not be any adjustments to lifestyle in terms of being able to do and have the same level of physical activity I do currently. I love to golf and exercise regularly and don't want to risk that. ly, these are factors at the core of my considerations. So that said, I searching through this group to find adults with similar situations who have had surgery and what were outcomes and also find individuals who have elected not to have surgery and if their condition has progressed. Thank you in advance for your feedback. SJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 Hi Steve - welcome to the group! I am 45 yrs old and was detethered two years ago. I do have less aching in my legs from the surgery (this took over a year to see the benefits) but I'm still left with low back and leg pain while walking, bending and lifting and a weak left leg with nerve damage and muscle wasting. No b & b issues before or after the surgery. However, I do have other underlying issues (spondylolisthesis) for which I am contemplating a spinal fusion. So, I am not a perfect specimen for judging how well the surgery worked for me as my spondo is likely also contributing to many of my symptoms. I have had back problems since the age of 18 but managed to lead and extremely active life until about 10 + years ago. As mentioned to you already - everyone's situation is different - this medical condition seems to affect everyone slightly differently and there are several forms of TC. Mine was a tight/fatty filum which is a less risky surgery to " correct " than say a tether involving a lipoma. Nina, one of our group members wrote has a good website explaining the different types of TC that she wrote years ago. Here is the link: http://www.btinternet.com/~tetheredcordresources/ Basically, all you can do is way to pros and cons of doing the surgery versus not doing the surgery - and make sure you are seeing a NS who is experienced with this surgery - very important! If you have no neurological decline you are in a good position to wait if you don't want to go ahead with it right now, and can be carefully monitored. Nerve damage is difficult to reverse once it's been going on for awhile. There have been many people who've come and gone on this site who have had good results, and unfortunately some that have not done so well. Dee To: tetheredspinalcord From: stevegray54@... Date: Sun, 21 Mar 2010 06:49:47 -0700 Subject: Re: My story Kathy, Your story was very helpful. I will let you know how it goes. Thanks very much and all the best. ________________________________ To: tetheredspinalcord Sent: Sun, March 21, 2010 8:16:16 AM Subject: Re: My story Hi Steve, I am 48, was diagnosed with Lipomeningocele at 37, and have had five untethering surgeries over an approximate 8-10 year period. This is my story. Before the initial untethering, I exercised almost every day and I exercised hard - I was raising four children, worked full-time as a teacher and was enjoying everything in my left except bladder leaking and a left leg that would not build muscle no matter how hard I worked-out. They thought the leaking was from a prolapsed bladder (four children) and I had a bladder tuck surgery which never healed correctly. I could not empty my bladder after this surgery which finally led me to a very smart uro who noticed my flabby left leg and also noted hyper reflexes in my left and right legs/clonus in my ankles and a positive Babinski. He sent me to a neurologist who did an MRI that showed the Lipo. Neuro sent me to a neurosurgeon (nsg) who explained what Lipomeningocele is, why I needed surgery (to possibly return bladder function, to reverse muscle wasting) and what the reflexes and Babinski meant (screwed up nervous system from the tether). I had surgery, woke up in agony, and unfortunately, the pain did not leave - it faded a bit for a while, I went back to work, but couldn't keep up and retired early. My bladder function did not return and within months, other " areas " started to show signs of neuro decline - progressive spasticity, bowel issues, etc. My nsg sent me, with new MRI's in tow to a specialist at Mass Gen. Hosp. This nsg said I never should have had the first untethering - he went on to explain because I had been tethered since birth (obviously before), that my nervous system had rewired at some point to allow for the problems that the tether presented. Because there were not any surgical interventions as a child (I did have odd problems as a child that no one put blame on a tether that my parents knew about, but never told me; thankfully), basically once I reached full height, because these problems I had as a kid had settled down (peeing when I laughed, orthotic problems that were not a big deal), he felt that once I had been untethered, my nervous system tried to 're-heal " , unwired, rewired and rewired incorrectly. Hence pain signals to areas where nothing was wrong (legs, hips, back, buttocks, genital area, feet, etc), bladder/bowel problems, spasticity, etc. That said - he did say I was stuck at that point though. I had had the surgery - was left with decline and needed to decide if I felt another painful surgery was worth the risks - he said he didn't know at that point only time would tell. He just said he was sorry and wished I had come to him first because many adults do not have a full childhood history taken and looked at - if I had, my nsg would have realized I had symptoms as a child that stopped once I reached full height which would have (hopefully) given him pause. I went back to Maine and had another untethering for a spinal cord stuck to scar tissue on the left side. I desperately wanted my body and life back. I so badly wanted it back - because each surgery brought some relief for a time, then decline and more decline than I had before the surgery, I kept chasing this body that was not going to return. I had two spinal fluid leaks (not the kind that can be corrected with blood patches) and needed lengthy surgeries for repairs. After the fourth surgery, I started to lose function once cold air hit me. It would slowly return once warm. This became much worse the more I was exposed to bitter cold air - for whatever reason it sent my nervous system into overdrive. I was housebound in the winter and fall (and some Springs), showered every night, but dreaded the temperate change I was going to experience in the shower, plus the water hitting me hurt. Sheets touching me hurt - socks, pants, etc. Botox injections in my legs helped a lot, but didn't touch the cold weather problem. I had a fifth untethering and the same as above occurred. We had had it - our son, our youngest was a freshman in high school and we decided that once he left for college, we were moving to a southern state, near a good hospital. We waited and four years ago moved to NC. The best thing we ever did and the way things fell in place for us once we put our home on the market in Maine - we should have known how this move was meant to be. Fast-forward - I found a great pain clinic and joined a study for a pain pump filled with gabapentin (an anti-seizure med). It took probably 70% of my back pain away, made my legs less sensitive, but didn't help any other problems. However, without that debilitating back pain, I returned to teaching. I am now losing the use of my right leg, have incredible pain in my legs - to the point where nothing is really helping except laying in bed after work and most of Saturday, then the cycle starts again Monday (work). I am retethered on the right side; hence the right leg loss and back pain has increased but still helped by intrathecal gabapentin. I had a myleogram done in Dec.and my nsg has not recommended surgery " until " I lose the use of my leg or just before (if I can figure that point out). He also offered me a new surgery that has been discussed at length on the list recently. He does not recommend surgery for many reasons - he said the surgery is horrendous on someone that has as much scar tissue as I have - no amount of monitoring helps - he said the outcome rate is not good, and that because of my surgical outcome history, he would also not recommend surgery until the above point. That said, pretty much every area that can be affected is and has been for a while - I forgot to mention the feeling that I lost after the first surgery - lost from my left butt cheek down - a spiraling sensation loss that is permanent in my right leg and now my legs go completely dead - no feeling at all - once Tuesday is here. My right leg drags behind me by Tuesday/Wed. and my left foot drops. No idea why and all my nsg could do was give me hypothesis of why. They're not God and I came to realize that years ago. After each untethering - and as the symptoms returned and more problems came - I would see another nsg in Boston for a second opinion (the one I first saw had retired). Some would say they recommended further surgery - some said no way. No one agreed. I also have a Chiari malformation that thankfully has not needed surgery. I finally realized that for my situation, if I saw a good nsg, one who had a lot of experience, had a decent bed-side manner and was one that I trusted and could talk with - I was not going to run around and get different opinions any longer which is why I am staying put with no surgery right now. I don't know how long I can put it off - I will have surgery, I guess, once I feel that my leg is on its way out or I lose it. I'll be honest, the surgery is painful and although they say you forget pain, for whatever reason, the pain I experience after untetherings is not something I forget even though it only lasts at that level for maybe two days. I do want to emphasize and reiterate, this is my story only. Everyone is different and those that have been on this long enough and still experience problems will tell you this also - for the most part, only those of us with problems remain on the list. Those that get better after surgery usually leave the list eventually - there are a couple that have thankfully remained. However, remember, this is a bit of a lop-sided membership. Let us know what you decide and I hope your pain mgt. group is aggressive in treating the pain. Once it gets ahead of you it's harder to control ... I wish I had been like you though and waited, listened to others, and I wish I had seen more than one nsg. My nsg that did my surgeries is fantastic and never did one thing wrong - but that initial intake may have put me in a different spot. I don't dwell on that at all though and am thankful for many, many things. Good luck - Kathy My story I am a 56 year old male who was diagnosed with TCS about two years ago. Previously to that, i had never experienced any back issues others than the occassional stiffness of aging in an active lifestyle. Two years ago, i woke one morning with severe nerve pain in the lower left back, left buttock and genital area. After failures to get satisfactory answers from my GP, i made my way to a 'pain doctor' who conducted MRI and provdied me with the diagnosis and directed me to a neurosurgeon. This surgeon supported the diagnosis and said that he would not operate 'on his brother' if he had same diagnosis. I left very dejected but not unwilling to pursue the quest for satisfactory answers and physical solutions. Fast forward over the past two years, I have wored to ensure the pain wouldn't alter my lifestyle but it has eventually crept in with more severity (especially during and after sitting) and long stints of standing leaves my 56 year old legs a little weak but standing does relieve the pain a good degree. During these two years, I have seen 3 more neurosurgeons and each of them has been open to surgery and feels like this could lead to relieving pain. They also say that surgery could lead to some paralysis and bladder/bowel dimished function but they go on to say that these are low risk. Each indicate that following surgery, there will not be any adjustments to lifestyle in terms of being able to do and have the same level of physical activity I do currently. I love to golf and exercise regularly and don't want to risk that. ly, these are factors at the core of my considerations. So that said, I searching through this group to find adults with similar situations who have had surgery and what were outcomes and also find individuals who have elected not to have surgery and if their condition has progressed. Thank you in advance for your feedback. SJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2010 Report Share Posted March 22, 2010 Hello SJ, I'm a 54 year old female just diagnoised with Lipoma with tethered spinal cord, over the past year the pains in my legs have gotten bad I don't even have to be moving them and I will still feel pain shooting down my legs, exercize seems to make it worst even walking, sitting causes more pain, but for me and this is my own opionion I would never risk the surgery to go from one problem to another extreme problem with bladder and bowel issues and the recouperation that it will take to recover....I can still do things but in moderation, I rather take pain medication then have the operation..... Sharon ________________________________ To: tetheredspinalcord Sent: Sun, March 21, 2010 7:50:25 AM Subject: My story  I am a 56 year old male who was diagnosed with TCS about two years ago. Previously to that, i had never experienced any back issues others than the occassional stiffness of aging in an active lifestyle. Two years ago, i woke one morning with severe nerve pain in the lower left back, left buttock and genital area. After failures to get satisfactory answers from my GP, i made my way to a 'pain doctor' who conducted MRI and provdied me with the diagnosis and directed me to a neurosurgeon. This surgeon supported the diagnosis and said that he would not operate 'on his brother' if he had same diagnosis. I left very dejected but not unwilling to pursue the quest for satisfactory answers and physical solutions. Fast forward over the past two years, I have wored to ensure the pain wouldn't alter my lifestyle but it has eventually crept in with more severity (especially during and after sitting) and long stints of standing leaves my 56 year old legs a little weak but standing does relieve the pain a good degree. During these two years, I have seen 3 more neurosurgeons and each of them has been open to surgery and feels like this could lead to relieving pain. They also say that surgery could lead to some paralysis and bladder/bowel dimished function but they go on to say that these are low risk. Each indicate that following surgery, there will not be any adjustments to lifestyle in terms of being able to do and have the same level of physical activity I do currently. I love to golf and exercise regularly and don't want to risk that. ly, these are factors at the core of my considerations. So that said, I searching through this group to find adults with similar situations who have had surgery and what were outcomes and also find individuals who have elected not to have surgery and if their condition has progressed. Thank you in advance for your feedback. SJ Quote Link to comment Share on other sites More sharing options...
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