Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 Hi, I'm 18 years old. I had my achilles tendoms lengthened when I was about 5 years old, and as the time passed, the doctors said that I'll have to go through the surgery when I'll finish growing. All that was before I wad diagnosed with CMT, last year when I started asking about the surgery, the doctors send me to an EMG test (which, by the way was really painful..), and after that, and the DNA tets showed that I have CMT, the doctors said that they don't recommand on the surgery anymore. I'd like to know if anyone here had talked with his doctors about that, if so do they recommand on it, despite the CMT? If there are people here that went through this surgery, I'd like to know, did it approve your walking? less falling, and sprains? My doctors, recommanded on both feet together, at the time, they said that since I'm young it would be about 3 weeks in cast (for adults they said it could be twice as much time), and then physiotherapy. Tanks in advance for the information, Chen HI Chen, I also had the heel cord lengthening. I was 7. I have been told by several Drs that they don't do that anymore. It makes your feet weaker. I have had my arches lowered , bones fused. ankles fused , heels fused. Etc... From all the fusions I can't go up steps or a curb. My new PT think no surgery should be done at all. She says it puts to much stress on the over worked muscles. Just her opinion. Kids shouldn't be fused if it can be helped. IMO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 Hi, I'm 18 years old. I had my achilles tendoms lengthened when I was about 5 years old, and as the time passed, the doctors said that I'll have to go through the surgery when I'll finish growing. All that was before I wad diagnosed with CMT, last year when I started asking about the surgery, the doctors send me to an EMG test (which, by the way was really painful..), and after that, and the DNA tets showed that I have CMT, the doctors said that they don't recommand on the surgery anymore. I'd like to know if anyone here had talked with his doctors about that, if so do they recommand on it, despite the CMT? If there are people here that went through this surgery, I'd like to know, did it approve your walking? less falling, and sprains? My doctors, recommanded on both feet together, at the time, they said that since I'm young it would be about 3 weeks in cast (for adults they said it could be twice as much time), and then physiotherapy. Tanks in advance for the information, Chen HI Chen, I also had the heel cord lengthening. I was 7. I have been told by several Drs that they don't do that anymore. It makes your feet weaker. I have had my arches lowered , bones fused. ankles fused , heels fused. Etc... From all the fusions I can't go up steps or a curb. My new PT think no surgery should be done at all. She says it puts to much stress on the over worked muscles. Just her opinion. Kids shouldn't be fused if it can be helped. IMO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Barbara- I had my ankles fused at around age 9- The only thing i can tell you about was my recuperating time. I had two leg casts that I was unable to put any weight on for two weeks- For some odd reason my parents didnt get a wheelchair for me- they just carried me- and I remember the pain as my casts clunked together pretty painful. And I swear they used to ignore me when I would yell I had to go to bathroom! Mom would lower (I say drop) me into bathtub with my legs hanging . I was sso relieved when they put the walking casts on!! i have no idea if this helps or not...but it has made me giggle reminising about it! Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Barbara- I had my ankles fused at around age 9- The only thing i can tell you about was my recuperating time. I had two leg casts that I was unable to put any weight on for two weeks- For some odd reason my parents didnt get a wheelchair for me- they just carried me- and I remember the pain as my casts clunked together pretty painful. And I swear they used to ignore me when I would yell I had to go to bathroom! Mom would lower (I say drop) me into bathtub with my legs hanging . I was sso relieved when they put the walking casts on!! i have no idea if this helps or not...but it has made me giggle reminising about it! Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Barbara- I had my ankles fused at around age 9- The only thing i can tell you about was my recuperating time. I had two leg casts that I was unable to put any weight on for two weeks- For some odd reason my parents didnt get a wheelchair for me- they just carried me- and I remember the pain as my casts clunked together pretty painful. And I swear they used to ignore me when I would yell I had to go to bathroom! Mom would lower (I say drop) me into bathtub with my legs hanging . I was sso relieved when they put the walking casts on!! i have no idea if this helps or not...but it has made me giggle reminising about it! Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Hi all, I had surgeries to lower my arches when I was 9 and 10. We did one foot per a summer so I was never in 2 casts at once. I actually had 2 surgeries a summer. The first was to do the major reconstruction work and to place a metal pin through my ankle. The second was an outpatient procedure where the pin was removed and a walking cast was put on. My parents did a great job of keeping me entertained and happy. I think the key was to keep me a part of daily family life. Although I was in a cast, I was still expected to do modified chores. For instance, I helped set the table for dinner by using a walker with a bag tied to the front. The one thing that I would caution you about is the reaction of sibling to the " special " and increased amount of attention the child who has the surgery receives. I have two younger sisters who felt very jealous of me because of all the special care I got. I think they felt somewhat ignored and left out. I know this was not intentionally done by my parents and friends, but I know that this still affects my relationship with my sisters. I just want to urge you to involve entire family in the care of the child, but also set aside some quality time for just the siblings away from the house and the child. Sorry for rambling, Thank you for listening, Devin Ann son --- Barbara Ranagan ranagan@...> wrote: > Hi all, Barbara from Bethesda, MD, here. > > Alice's (age 8) surgery has been scheduled for May 3 > in Wilmington, > Delaware at the Alfred I duPont Hospital for > Children. It will be > performed by Dr. Jayakumar, otherwise known as Dr. > Jay. > > In mid February the duPont gait lab performed a 3 > hour gait analysis > on Alice, where she was video-taped by six different > cameras from > different angles simultaneously. They also measured > her respiratory > functions and had her walk on special mats that were > hooked up to > computers that projected her footprints on a > monitor. The footprints > looked like color-coded topigraphical maps showing > the weight bearing > areas of her soles in gradations. It was very cool, > although I have > no idea whether it is valuable or merely hi-tech > hype. > > Anyway, Dr. Jay wants to release the muscles > creating Alice's high > arches (plantar facias) and transfer the posterior > tibial tendon to > the forefoot so the it will lift the front of her > foot (meaning it > performs the job that the peroneal muscles no longer > perform). He > adamantly stated that he would not surgically > lengthen the achilles, > because he felt it would weaken it. Rather, he will > do a series of > post-operative casts that gradually stretch Alice's > achilles tendon. > Initially, he thought he would have to break the > first metatarsal > bones to get Alice's feet to lay flat on the ground > (she now walks on > the outer edges of her feet). After the gait > analysis and x-rays, > however, he no longer thinks he has to do this. He > believes that he > can correct with only soft tissue procedures. > > As some of you know, I have traveled far and wide > (Boston, NJ, DC, > MD)to interview doctors for Alice's surgery. The > last surgical > evaluation, done at s Hopkins left me so > depressed (which I am > prone to anyway). Among other things, the > orthopedist there said > that I had waited too long to move on Alice's > surgery -- that she now > had boney deformities. That doctor wanted to > lengthen the achilles > tendon, calcaneal osteotomies (heel bone surgery) > and a split tendon > transfer using only part of the Posterior tibial > tendon. They were > quite frank that boney surgery at this age would > cause some permanent > rigidities that cause a new set of problems. > > To be honest, I don't know if I am going with duPont > because they > told me what I want to hear or because they really > do know what's > best. I have educated myself about this disease and > its management, > and I felt that the folks at duPont were the most > thorough. (By the > way, I did like the people at Boston Children's too, > but duPont is > closer to us)They were also the only ones who could > pull files on > other patients who have CMT. All I can say is that > I have made a > decision. I hope it is the right one. > > Finally, if any of you have tips on managing the > recuperation period > with a child in two leg casts, I would appreciate > hearing from you. > Thanks. > > Barbara > > ===== Devin Ann son RevDev45@... (314)918-1153 " Faith manages! " --Babylon 5 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Hi all, I had surgeries to lower my arches when I was 9 and 10. We did one foot per a summer so I was never in 2 casts at once. I actually had 2 surgeries a summer. The first was to do the major reconstruction work and to place a metal pin through my ankle. The second was an outpatient procedure where the pin was removed and a walking cast was put on. My parents did a great job of keeping me entertained and happy. I think the key was to keep me a part of daily family life. Although I was in a cast, I was still expected to do modified chores. For instance, I helped set the table for dinner by using a walker with a bag tied to the front. The one thing that I would caution you about is the reaction of sibling to the " special " and increased amount of attention the child who has the surgery receives. I have two younger sisters who felt very jealous of me because of all the special care I got. I think they felt somewhat ignored and left out. I know this was not intentionally done by my parents and friends, but I know that this still affects my relationship with my sisters. I just want to urge you to involve entire family in the care of the child, but also set aside some quality time for just the siblings away from the house and the child. Sorry for rambling, Thank you for listening, Devin Ann son --- Barbara Ranagan ranagan@...> wrote: > Hi all, Barbara from Bethesda, MD, here. > > Alice's (age 8) surgery has been scheduled for May 3 > in Wilmington, > Delaware at the Alfred I duPont Hospital for > Children. It will be > performed by Dr. Jayakumar, otherwise known as Dr. > Jay. > > In mid February the duPont gait lab performed a 3 > hour gait analysis > on Alice, where she was video-taped by six different > cameras from > different angles simultaneously. They also measured > her respiratory > functions and had her walk on special mats that were > hooked up to > computers that projected her footprints on a > monitor. The footprints > looked like color-coded topigraphical maps showing > the weight bearing > areas of her soles in gradations. It was very cool, > although I have > no idea whether it is valuable or merely hi-tech > hype. > > Anyway, Dr. Jay wants to release the muscles > creating Alice's high > arches (plantar facias) and transfer the posterior > tibial tendon to > the forefoot so the it will lift the front of her > foot (meaning it > performs the job that the peroneal muscles no longer > perform). He > adamantly stated that he would not surgically > lengthen the achilles, > because he felt it would weaken it. Rather, he will > do a series of > post-operative casts that gradually stretch Alice's > achilles tendon. > Initially, he thought he would have to break the > first metatarsal > bones to get Alice's feet to lay flat on the ground > (she now walks on > the outer edges of her feet). After the gait > analysis and x-rays, > however, he no longer thinks he has to do this. He > believes that he > can correct with only soft tissue procedures. > > As some of you know, I have traveled far and wide > (Boston, NJ, DC, > MD)to interview doctors for Alice's surgery. The > last surgical > evaluation, done at s Hopkins left me so > depressed (which I am > prone to anyway). Among other things, the > orthopedist there said > that I had waited too long to move on Alice's > surgery -- that she now > had boney deformities. That doctor wanted to > lengthen the achilles > tendon, calcaneal osteotomies (heel bone surgery) > and a split tendon > transfer using only part of the Posterior tibial > tendon. They were > quite frank that boney surgery at this age would > cause some permanent > rigidities that cause a new set of problems. > > To be honest, I don't know if I am going with duPont > because they > told me what I want to hear or because they really > do know what's > best. I have educated myself about this disease and > its management, > and I felt that the folks at duPont were the most > thorough. (By the > way, I did like the people at Boston Children's too, > but duPont is > closer to us)They were also the only ones who could > pull files on > other patients who have CMT. All I can say is that > I have made a > decision. I hope it is the right one. > > Finally, if any of you have tips on managing the > recuperation period > with a child in two leg casts, I would appreciate > hearing from you. > Thanks. > > Barbara > > ===== Devin Ann son RevDev45@... (314)918-1153 " Faith manages! " --Babylon 5 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Hi all, I had surgeries to lower my arches when I was 9 and 10. We did one foot per a summer so I was never in 2 casts at once. I actually had 2 surgeries a summer. The first was to do the major reconstruction work and to place a metal pin through my ankle. The second was an outpatient procedure where the pin was removed and a walking cast was put on. My parents did a great job of keeping me entertained and happy. I think the key was to keep me a part of daily family life. Although I was in a cast, I was still expected to do modified chores. For instance, I helped set the table for dinner by using a walker with a bag tied to the front. The one thing that I would caution you about is the reaction of sibling to the " special " and increased amount of attention the child who has the surgery receives. I have two younger sisters who felt very jealous of me because of all the special care I got. I think they felt somewhat ignored and left out. I know this was not intentionally done by my parents and friends, but I know that this still affects my relationship with my sisters. I just want to urge you to involve entire family in the care of the child, but also set aside some quality time for just the siblings away from the house and the child. Sorry for rambling, Thank you for listening, Devin Ann son --- Barbara Ranagan ranagan@...> wrote: > Hi all, Barbara from Bethesda, MD, here. > > Alice's (age 8) surgery has been scheduled for May 3 > in Wilmington, > Delaware at the Alfred I duPont Hospital for > Children. It will be > performed by Dr. Jayakumar, otherwise known as Dr. > Jay. > > In mid February the duPont gait lab performed a 3 > hour gait analysis > on Alice, where she was video-taped by six different > cameras from > different angles simultaneously. They also measured > her respiratory > functions and had her walk on special mats that were > hooked up to > computers that projected her footprints on a > monitor. The footprints > looked like color-coded topigraphical maps showing > the weight bearing > areas of her soles in gradations. It was very cool, > although I have > no idea whether it is valuable or merely hi-tech > hype. > > Anyway, Dr. Jay wants to release the muscles > creating Alice's high > arches (plantar facias) and transfer the posterior > tibial tendon to > the forefoot so the it will lift the front of her > foot (meaning it > performs the job that the peroneal muscles no longer > perform). He > adamantly stated that he would not surgically > lengthen the achilles, > because he felt it would weaken it. Rather, he will > do a series of > post-operative casts that gradually stretch Alice's > achilles tendon. > Initially, he thought he would have to break the > first metatarsal > bones to get Alice's feet to lay flat on the ground > (she now walks on > the outer edges of her feet). After the gait > analysis and x-rays, > however, he no longer thinks he has to do this. He > believes that he > can correct with only soft tissue procedures. > > As some of you know, I have traveled far and wide > (Boston, NJ, DC, > MD)to interview doctors for Alice's surgery. The > last surgical > evaluation, done at s Hopkins left me so > depressed (which I am > prone to anyway). Among other things, the > orthopedist there said > that I had waited too long to move on Alice's > surgery -- that she now > had boney deformities. That doctor wanted to > lengthen the achilles > tendon, calcaneal osteotomies (heel bone surgery) > and a split tendon > transfer using only part of the Posterior tibial > tendon. They were > quite frank that boney surgery at this age would > cause some permanent > rigidities that cause a new set of problems. > > To be honest, I don't know if I am going with duPont > because they > told me what I want to hear or because they really > do know what's > best. I have educated myself about this disease and > its management, > and I felt that the folks at duPont were the most > thorough. (By the > way, I did like the people at Boston Children's too, > but duPont is > closer to us)They were also the only ones who could > pull files on > other patients who have CMT. All I can say is that > I have made a > decision. I hope it is the right one. > > Finally, if any of you have tips on managing the > recuperation period > with a child in two leg casts, I would appreciate > hearing from you. > Thanks. > > Barbara > > ===== Devin Ann son RevDev45@... (314)918-1153 " Faith manages! " --Babylon 5 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 In a message dated 4/6/00 7:04:18 AM Pacific Daylight Time, whackomom@... writes: << Barbara- I had my ankles fused at around age 9- The only thing i can tell you about was my recuperating time. I had two leg casts that I was unable to put any weight on for two weeks- For some odd reason my parents didnt get a wheelchair for me- they just carried me- and I remember the pain as my casts clunked together pretty painful. And I swear they used to ignore me when I would yell I had to go to bathroom! Mom would lower (I say drop) me into bathtub with my legs hanging . I was sso relieved when they put the walking casts on!! i have no idea if this helps or not...but it has made me giggle reminising about it! Elena >> Why didn't they get you a WC? When I was in the WC after my fusion my Mother hit me so hard I fell out. Ohh such a dear she is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 In a message dated 4/6/00 6:48:07 AM Pacific Daylight Time, ranagan@... writes: << I have educated myself about this disease and its management, and I felt that the folks at duPont were the most thorough. (By the way, I did like the people at Boston Children's too, but duPont is closer to us)They were also the only ones who could pull files on other patients who have CMT. All I can say is that I have made a decision. I hope it is the right one. Finally, if any of you have tips on managing the recuperation period with a child in two leg casts, I would appreciate hearing from you. Thanks. Barbara >> Barbra, This soounds wonderful. If it makes you feel better I would go the same route. Make sure you give Alice her pain meds aboout 20 minutes before they are due so they don't wear off. At first anyway. I went on walks in the wheel chair that helped with the cabin fevor I was getting. I had both feet done at age 7. Paper dolls , coloring books. I took my favorite doll with a suit case for her new hospital clothes that my Mom had made for her. That helped the most. I didn't feel alone. I would have been in heaven if they had computer games back then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 In a message dated 4/5/00 8:47:21 PM Pacific Daylight Time, bigfoot@... writes: << My ortho doc wants to do a triple arthrodesis, tendon transfer, and some other procedure. Has anynone gone through this type of surgery? What can I expect regarding recovery time, pain, and recurring problems? >> ************* Hi, I had a triple arthodesis and tendon transfers when I was 13?. I'm know 38... I'm sure the surgery has improved since then, so I can't give you info on that. But, the triple helped me immensely from turnning my ankles... I used to turn them all the time even in AFO's. After the triple, I no longer turned my ankles. After I got the cast's off it took me about a month to get my legs back under me so that I felt safe walking to work alone. It took about 6 months for me to get used to the different feeling and the different walk. As for the tendon transfers, I noticed no difference myself. There should be no recurring problems, but, everyone is different. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 In a message dated 4/6/00 6:48:06 AM Pacific Daylight Time, ranagan@... writes: << Finally, if any of you have tips on managing the recuperation period with a child in two leg casts, I would appreciate hearing from you. Thanks. >> ****************** Barbara, wow have you done your homework. Good for you. Your probably wanting to know about medical recuperation but this is personal recuperation. As for your daughter's recuperation time. If you don't have a wheelchair, get one with a fully padded seat and it will need to have the legs on it so that they can be elevated to keep the swelling down in her legs. Know now that she will want a knitting needle for inside the cast. No your not susposed to do this..... Anyway that's what they told me.... But, I did it anyway, now you can buy the knitting needles with the crochet tip so that it's not pointed. My mom tried to have games available for me to keep my mind busy. And she would let my friends come over special. One thing that stands out in my mind very vividly is the pain.... My poor mom was so tired from working and taking care of home and total of 4 kids and with me in casts she had no patience left for dealing with me whining about the pain...... Please be patient...... It hurt me so much to be scoulded when I was in such pain..... I know that some kids take advantage of parents when they are sick, I WAS NOT ONE OF THOSE...... Anyway..... Take care, Jeanie ( hi mom, if you read this know that I understand now.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 In a message dated 07/05/00 11:46:41 a.m. Pacific Daylight Time, lheitkem@... writes: << I have had CMT for 35 years. I have recently been recommended to have ankle fusion on one of my ankles. I would appreciate any information on recovery, post-operative pain and long-term benefits of anyone who has had this surgery during mid-life. Thank you, Larry Heitkemper >> Have you looked into AFOs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 In a message dated 07/05/00 11:46:41 a.m. Pacific Daylight Time, lheitkem@... writes: << I have had CMT for 35 years. I have recently been recommended to have ankle fusion on one of my ankles. I would appreciate any information on recovery, post-operative pain and long-term benefits of anyone who has had this surgery during mid-life. Thank you, Larry Heitkemper >> Have you looked into AFOs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 In a message dated 5/7/00 2:46:43 PM Eastern Daylight Time, lheitkem@... writes: << I would appreciate any information on recovery, post-operative pain and long-term benefits of anyone who has had this surgery during mid-life. >> I had mine when I was 62yrs young is that mid life enough. If it is I''ll fill you in on my experience. Also in reference to Jeanie mentioning afo's. For me the alternative to surgery was an afo, but my Doctor said it would be painful and take some time. I chose surgery. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 Larry, this one I can help with. I had my first fusion in the early 70's on my left ankle. They took a bone chip from my hip and kind of wedged it in my ankle. I was in some pain for a couple of days, my hip hurt worse. It was fine for a while. In 1990 I had one done on my right ankle. They placed 2 titanium screws. I was down for about 4-6 weeks. Not much pain but some. No more pain. I can't bend my ankle, but not much of a problem there. Now the one I had in my left is gone. My body somehow absorbed it. I am going to have a rod and screws put in that one around June. If you have any questions my E-mail is murkam@... feel free to write me. Good Luck Martha lheitkem@... wrote: I have had CMT for 35 years. I have recently been recommended to have ankle fusion on one of my ankles. I would appreciate any information on recovery, post-operative pain and long-term benefits of anyone who has had this surgery during mid-life. Thank you, Larry Heitkemper --------------------------------- --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 In a message dated 5/8/00 6:49:10 AM Pacific Daylight Time, lheitkem@... writes: << so >> Larry- I had my ankles fused as a child and they are still hanging in there- so thats over 25 years success rate. The reason I had my ankles fused is that at the time I was wearing the metal brace and snapping them!! My ankle was just putting too much pressure on them so I am sure i would be snapping a plastic afo weekly LOL! Anyway I know you were wanting to hear about those who had surgery later in life but thought you would be interested in that my fusion is still going strong Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Hi Larry, << The orthopedic doctor told me my foot was turned in too much for AFOs, but I may get a second opinion. >> If the orthopedic doctor is a surgeon I suggest asking a physician who is NOT a surgeon. Surgeons cut. That is their training. For example, I was sent to an orthopedic surgeon for another problem and he offered to cut my Achilles Tendons! I walk and drive reasonably well, so I said no thanks. Apparently surgery on a CMTer is much like everything else about CMT - different results for different individuals. Sounds wishy washy, but CMT is so unpredictable it's impossible to know how an individual will react to anything. The condition of the patient and the expertise of the surgeon are variables. What helps one CMTer may not help another. There may be a big difference between surgery on a child and a mature adult. From what I hear in the different CMT email groups. It may take up to a year to recover, and the pain may or may not leave. I hear many different stories about surgery - positive and negative. IF an AFO will help, that would be the least invasive way to go. Or orthotics, but I think they are for less difficult feet. Depending upon what is going on with your particular foot you may or may not have much choice about the surgery. You are wise to consider it carefully. Being in a cast may make that leg weaker than it otherwise may have been. I'm sorry I can't be more specific or more positive. It is too variable, in my opinion. I'm not a medical person. I gather information from CMTers themselves. There may yet be more members who will have ideas for you. Good luck! Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Thanks for your response. I would like to hear more. I am 51 years old. My specific questions are: Did you have ankle fusion or some other surgery? How much pain were you in and for how long? How much work did you miss? How did you get around on crutches with weakness in the other leg? How long was it before you could walk again? Given that the disease is progressive, did the surgery prvide any long term benefit? Please describe? Thanksabunch, larry Re: surgery In a message dated 5/7/00 2:46:43 PM Eastern Daylight Time, lheitkem@... writes: << I would appreciate any information on recovery, post-operative pain and long-term benefits of anyone who has had this surgery during mid-life. >> I had mine when I was 62yrs young is that mid life enough. If it is I''ll fill you in on my experience. Also in reference to Jeanie mentioning afo's. For me the alternative to surgery was an afo, but my Doctor said it would be painful and take some time. I chose surgery. ------------------------------------------------------------------------ eLerts It's Easy. It's Fun. Best of All, it's Free! http://click.egroups.com/1/3864/10/_/616793/_/957747038/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 , Yes, this is what started me down the surgery route. The orthopedic doctor told me my foot was turned in too much for AFO's, but I may get a second opinion. I have terrible background anxiety problems, so I am really scared of the surgery and post-operative pain. I am willing to exhaust every other avenue. Given the overall weakness in my leg muscles and the progressive nature of the disease. I also am questioning whether the surgery will give much long term benefit anyway. Any further insights? Thank you, Larry Re: surgery In a message dated 07/05/00 11:46:41 a.m. Pacific Daylight Time, lheitkem@... writes: << I have had CMT for 35 years. I have recently been recommended to have ankle fusion on one of my ankles. I would appreciate any information on recovery, post-operative pain and long-term benefits of anyone who has had this surgery during mid-life. Thank you, Larry Heitkemper >> Have you looked into AFOs? ------------------------------------------------------------------------ Get your money connected @ OnMoney.com - the first Web site that lets you see and manage all of your finances all in one place. http://click.egroups.com/1/3012/10/_/616793/_/957743743/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 In a message dated 5/8/2000 6:42:25 AM Pacific Daylight Time, lheitkem@... writes: << My specific questions are: Did you have ankle fusion or some other surgery? I had ankel fusion, heel cord legenthning, Osteotomy, arches lowered, triple fasiotmy.. I am not spelling this stuff right I am sure of that. How much pain were you in and for how long? TONS How much work did you miss? If I was working I would say about 3 months.. How did you get around on crutches with weakness in the other leg? I had a walker and the went to crutches. The first surgery I had when i was 7. Then I used a WC. How long was it before you could walk again? When I had only one foot done I walked with a walker out to my car from the hospital. I don't remember the first time. Given that the disease is progressive, did the surgery prvide any long term benefit? Please describe? Ankel fusion is good if you don't want to wear AFOs or can't. In my opinion.. It is like having built in AFOs under your skin. Your foot will be stiff and in one position just like wearing an AFO. I have 3 staples no pins. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 << My 13 year old daughter has CMT. Two doctors haven given two different opinions. >> What type of surgery? CMTers in the group have had a lot of experience, too. Some have kids. Some have had surgery and have stories to tell. Let us know what's happening. Nice to hear from you. Kat/Pixi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 > Does anyone have the name of a Doctor in the So Cal area familiar with CMT? > Have you ever had surgery for CMT? If so, what surgery? How severe is your > case? My 13 year old daughter has CMT. Two doctors haven given two > different opinions. I think I may need a third. Any input would be helpful. > > Thank you. > > jasavant@a... Dear jasavant, Have you seen Dr. Hsu at Rancho los Amigos in Downey. I grew up with a mild case of CMT and starting talking with Dr. Hsu at around age 12 regarding trilple arthodesis/ plantar fasiotomy (sp?). Baiscally ankle fusion and tendon transfers. I wasn't ready personally until I was 18 years old to have the surgery. That was 20 years ago. (Wow!) Anyways, Dr. Hsu is a fine surgeon and the surgeries did improve my ankle stability. I would say that the surgeries gave me an addional 15 years of good walking until the disease began to progress at age 32. If I had it to do all over again, I probably would tell him to forget the tendon transfers. I don't think that part was very useful. It was a very big ordeal for my young life and a very personal choice to make. I hope you find as much information as you need to make an informed decision and I hope that your daughter will be as fortunate as I was to be able to make my own decisions regarding my CMT. It was a big deal for me and I am so grateful that my mother let me decide what the best course of action would be for my own life. The other thing is that Dr. Hsu has a lot of experience, but I remember his bedside manner being a little cool. If there is one thing that I have learned over the years it is that I will no longer let medical professionals talk me into something that does not feel right for me. Even if their years of education dictate otherwise, common sense is often much more valuable than text book theory! Best wishes, Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 > Does anyone have the name of a Doctor in the So Cal area familiar with CMT? > Have you ever had surgery for CMT? If so, what surgery? How severe is your > case? My 13 year old daughter has CMT. Two doctors haven given two > different opinions. I think I may need a third. Any input would be helpful. > > Thank you. > > jasavant@a... Dear jasavant, Have you seen Dr. Hsu at Rancho los Amigos in Downey. I grew up with a mild case of CMT and starting talking with Dr. Hsu at around age 12 regarding trilple arthodesis/ plantar fasiotomy (sp?). Baiscally ankle fusion and tendon transfers. I wasn't ready personally until I was 18 years old to have the surgery. That was 20 years ago. (Wow!) Anyways, Dr. Hsu is a fine surgeon and the surgeries did improve my ankle stability. I would say that the surgeries gave me an addional 15 years of good walking until the disease began to progress at age 32. If I had it to do all over again, I probably would tell him to forget the tendon transfers. I don't think that part was very useful. It was a very big ordeal for my young life and a very personal choice to make. I hope you find as much information as you need to make an informed decision and I hope that your daughter will be as fortunate as I was to be able to make my own decisions regarding my CMT. It was a big deal for me and I am so grateful that my mother let me decide what the best course of action would be for my own life. The other thing is that Dr. Hsu has a lot of experience, but I remember his bedside manner being a little cool. If there is one thing that I have learned over the years it is that I will no longer let medical professionals talk me into something that does not feel right for me. Even if their years of education dictate otherwise, common sense is often much more valuable than text book theory! Best wishes, Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 5/9/2000 6:06:20 PM Pacific Daylight Time, Jasavant@... writes: << Does anyone have the name of a Doctor in the So Cal area familiar with CMT? Have you ever had surgery for CMT? If so, what surgery? How severe is your case? My 13 year old daughter has CMT. Two doctors haven given two different opinions. I think I may need a third. Any input would be helpful. Thank you. jasavant@... >> I went to Dr Saul Bernstein at the Southern Ca Orthopedic institite in Van Nuys. He is a pedictric specialist. He did my surgery. I will send you my phone number you can call me and we can talk. Quote Link to comment Share on other sites More sharing options...
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