Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Terry -- Hi, this is nne and I am four and a half months out from surgery similar to the one you are planning. I had a transfer of the anterior tibial tendon (the one down the front of the leg), a bundling of tendons in the mid-foot, tendon transfers on all toes except the great (along with fusions of toes 2-4) and a fusion of the 1st metatarsal to the cuneiform bone (to flatten the arch). I have had great results and am just beginning serious physical therapy -- have been doing mainly range of motion to date. My foot is actually stronger and steadier than it was before the surgery. Whether or not I will need some kind of bracing isn't known for sure, but it looks like I won't if the PT can strengthen the ankle a little more. Also, I have had a major reduction in pain in the foot due to the fact I'm not walking on the side of it and on the ends of the bones in my toes!! YEAH!. I plan to have the other foot done in about 6-8 months, giving this foot a chance to really heal and get as strong as possible. If you feel confident about your surgeon, I highly recommend the surgery. Just be prepared to be patient as the four to five months to get out of the cast is a challenge. It made me realize how much I'm programmed to want instant results. Best of luck on your surgery and keep us posted. nne Tendon Transfer > > >I am due to have a tendon transfer in about two months. My right ankle provides >me with no support and I walk on the outerportion of my foot. I was fitted with >a hinged brace on the right foot and have worn the hinged brace for about 1 yr. >or so. This kind of worked for awhile, >but I notice more and more that the foot is turning more outward. I can't wear >ANYTHING except a sneaker, and even then it has to be just the right sneaker. >After I have worn them for awhile they seem to stretch out and I keep retying >the laces to make them as tight around the ankle as possible, for this makes it >easier for me to walk, given the fact that the right ankle gives me NO support. > >After this tendon transfer, I was told I might not need a splint on the right >foot, then again I might. My foot is going to be flatter, my foot drop >improved, my toes will be less curled, for the orthopedic dr. is going to do a >few other corrections, on the conservative side due to my age (51). I am trying >to find out what experiences other CMT patients have had with this surgery and >was a big improvement noticed? What if any down sides are there to this surgery? >Is there anyone out there who has had tendon transfer and found they did not >need to wear a splint? I was told I still might need a splint, just a different >kind. Would this ToeOFF splint work? I now have the plastic AFO's, regular on >the left because this foot has foot drop, but the ankle is still strong, thank >god for that. Just dealing with the problems of one really bad foot is enough. > >Any input from others would be greatly appreciated. > >Thanks, > >Terry >littlet@... > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates >as low as 0.0% Intro APR and no hidden fees. >Apply NOW! >http://click.egroups.com/1/975/5/_/616793/_/952435886/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hi,I'm Terry. Thanks so much for the reply. I am so glad that it worked for you, I hope mine is as successful. The orthopedist said I would be out maybe 4 - 6 weeks with this surgerly, however they usually tack on more time than is necessary. However, this surgery may need that time. I did not realize though that I would have to be in a cast, and for that long. Is everyone required to be in a cast and for that length of time. I have not got into the nitty gritty of all the details yet for my surgery, so perhaps I am in for some surprises. Will I need to be in a cast, and for that long? This is going to be on my right foot, how can one drive with a cast and go (drive) to work? Tendon Transfer > > >I am due to have a tendon transfer in about two months. My right ankle provides >me with no support and I walk on the outerportion of my foot. I was fitted with >a hinged brace on the right foot and have worn the hinged brace for about 1 yr. >or so. This kind of worked for awhile, >but I notice more and more that the foot is turning more outward. I can't wear >ANYTHING except a sneaker, and even then it has to be just the right sneaker. >After I have worn them for awhile they seem to stretch out and I keep retying >the laces to make them as tight around the ankle as possible, for this makes it >easier for me to walk, given the fact that the right ankle gives me NO support. > >After this tendon transfer, I was told I might not need a splint on the right >foot, then again I might. My foot is going to be flatter, my foot drop >improved, my toes will be less curled, for the orthopedic dr. is going to do a >few other corrections, on the conservative side due to my age (51). I am trying >to find out what experiences other CMT patients have had with this surgery and >was a big improvement noticed? What if any down sides are there to this surgery? >Is there anyone out there who has had tendon transfer and found they did not >need to wear a splint? I was told I still might need a splint, just a different >kind. Would this ToeOFF splint work? I now have the plastic AFO's, regular on >the left because this foot has foot drop, but the ankle is still strong, thank >god for that. Just dealing with the problems of one really bad foot is enough. > >Any input from others would be greatly appreciated. > >Thanks, > >Terry >littlet@... > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates >as low as 0.0% Intro APR and no hidden fees. >Apply NOW! >http://click.egroups.com/1/975/5/_/616793/_/952435886/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Terry -- I didn't mean to discourage you. I was non-weightbearing for six weeks. After the first two weeks of being in a splint (until the stitches came out), the doctor put me in a soft boot cast which I wore around the clock. However, I could take it off and scratch my leg, wash my leg down to the foot (still had pins in the fusions, so couldn't get my foot wet for six weeks), and do some passive massage of my calf to try to keep it from totally losing muscle tone. (PS: I used crutches and boy did the muscles left in my other leg get toned!) After six weeks, the doctor allow me to start toe touch weight bearing with the crutches until about two and a half months, then said I could begin full weight bearing at three and a half months and begin transition to regular shoes. He then determined that the screw in the mid-foot fusion needed to come out, so after that, I was back in the soft boot cast for two weeks. Actually, today I get the stitches out and can begin transition back to regular shoes. YEAH! My doctor said it would be about five months until I was walking well and as it is four and a half, he was about on the money. Ask your doctor for a time line. Even though it may not turn out to be 100% accurate, it does help with your mental planning on how to deal with recovery. Again, feel free to ask any questions you might have. nne Tendon Transfer > > >> >> >>I am due to have a tendon transfer in about two months. My right ankle >provides >>me with no support and I walk on the outerportion of my foot. I was fitted >with >>a hinged brace on the right foot and have worn the hinged brace for about 1 >yr. >>or so. This kind of worked for awhile, >>but I notice more and more that the foot is turning more outward. I can't >wear >>ANYTHING except a sneaker, and even then it has to be just the right >sneaker. >>After I have worn them for awhile they seem to stretch out and I keep >retying >>the laces to make them as tight around the ankle as possible, for this >makes it >>easier for me to walk, given the fact that the right ankle gives me NO >support. >> >>After this tendon transfer, I was told I might not need a splint on the >right >>foot, then again I might. My foot is going to be flatter, my foot drop >>improved, my toes will be less curled, for the orthopedic dr. is going to >do a >>few other corrections, on the conservative side due to my age (51). I am >trying >>to find out what experiences other CMT patients have had with this surgery >and >>was a big improvement noticed? What if any down sides are there to this >surgery? >>Is there anyone out there who has had tendon transfer and found they did >not >>need to wear a splint? I was told I still might need a splint, just a >different >>kind. Would this ToeOFF splint work? I now have the plastic AFO's, >regular on >>the left because this foot has foot drop, but the ankle is still strong, >thank >>god for that. Just dealing with the problems of one really bad foot is >enough. >> >>Any input from others would be greatly appreciated. >> >>Thanks, >> >>Terry >>littlet@... >> >> >>------------------------------------------------------------------------ >>GET A NEXTCARD VISA, in 30 seconds! Get rates >>as low as 0.0% Intro APR and no hidden fees. >>Apply NOW! >>http://click.egroups.com/1/975/5/_/616793/_/952435886/ >>------------------------------------------------------------------------ >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 thanks nne, I definitely plan to............... Tendon Transfer > > >> >> >>I am due to have a tendon transfer in about two months. My right ankle >provides >>me with no support and I walk on the outerportion of my foot. I was fitted >with >>a hinged brace on the right foot and have worn the hinged brace for about 1 >yr. >>or so. This kind of worked for awhile, >>but I notice more and more that the foot is turning more outward. I can't >wear >>ANYTHING except a sneaker, and even then it has to be just the right >sneaker. >>After I have worn them for awhile they seem to stretch out and I keep >retying >>the laces to make them as tight around the ankle as possible, for this >makes it >>easier for me to walk, given the fact that the right ankle gives me NO >support. >> >>After this tendon transfer, I was told I might not need a splint on the >right >>foot, then again I might. My foot is going to be flatter, my foot drop >>improved, my toes will be less curled, for the orthopedic dr. is going to >do a >>few other corrections, on the conservative side due to my age (51). I am >trying >>to find out what experiences other CMT patients have had with this surgery >and >>was a big improvement noticed? What if any down sides are there to this >surgery? >>Is there anyone out there who has had tendon transfer and found they did >not >>need to wear a splint? I was told I still might need a splint, just a >different >>kind. Would this ToeOFF splint work? I now have the plastic AFO's, >regular on >>the left because this foot has foot drop, but the ankle is still strong, >thank >>god for that. Just dealing with the problems of one really bad foot is >enough. >> >>Any input from others would be greatly appreciated. >> >>Thanks, >> >>Terry >>littlet@... >> >> >>------------------------------------------------------------------------ >>GET A NEXTCARD VISA, in 30 seconds! Get rates >>as low as 0.0% Intro APR and no hidden fees. >>Apply NOW! >>http://click.egroups.com/1/975/5/_/616793/_/952435886/ >>------------------------------------------------------------------------ >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 thanks nne, I definitely plan to............... Tendon Transfer > > >> >> >>I am due to have a tendon transfer in about two months. My right ankle >provides >>me with no support and I walk on the outerportion of my foot. I was fitted >with >>a hinged brace on the right foot and have worn the hinged brace for about 1 >yr. >>or so. This kind of worked for awhile, >>but I notice more and more that the foot is turning more outward. I can't >wear >>ANYTHING except a sneaker, and even then it has to be just the right >sneaker. >>After I have worn them for awhile they seem to stretch out and I keep >retying >>the laces to make them as tight around the ankle as possible, for this >makes it >>easier for me to walk, given the fact that the right ankle gives me NO >support. >> >>After this tendon transfer, I was told I might not need a splint on the >right >>foot, then again I might. My foot is going to be flatter, my foot drop >>improved, my toes will be less curled, for the orthopedic dr. is going to >do a >>few other corrections, on the conservative side due to my age (51). I am >trying >>to find out what experiences other CMT patients have had with this surgery >and >>was a big improvement noticed? What if any down sides are there to this >surgery? >>Is there anyone out there who has had tendon transfer and found they did >not >>need to wear a splint? I was told I still might need a splint, just a >different >>kind. Would this ToeOFF splint work? I now have the plastic AFO's, >regular on >>the left because this foot has foot drop, but the ankle is still strong, >thank >>god for that. Just dealing with the problems of one really bad foot is >enough. >> >>Any input from others would be greatly appreciated. >> >>Thanks, >> >>Terry >>littlet@... >> >> >>------------------------------------------------------------------------ >>GET A NEXTCARD VISA, in 30 seconds! Get rates >>as low as 0.0% Intro APR and no hidden fees. >>Apply NOW! >>http://click.egroups.com/1/975/5/_/616793/_/952435886/ >>------------------------------------------------------------------------ >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Hi Terry, my name is and I had done the transfer of the tibialis-posterior tendon (th tendon of the muscle in the calf) and a achilles-tendon lengthening on both feet in January this year. This surgery was done to make the pes cavus disappear and to help me to lift up my feet again. Two days after the surgery I tried to stand up again but it didn' t work because I hadn' t enough strength after the anaesthesia. On the fourth day I started walking and after 14 days I could leave the hospital. The doctors told me that probably I would be able to leave the hospital without crutches but for me it didn' t work. I now have five scars on every foot but there were no stitches to betaken away because they did a special kind of stitching. I also didn' t have a plast and I was able to put weight on my feet immediately. The only big problem I had was a lost of balance after the surgery and because of this walking out of the hospital without crutches was not able. After the hospital I started with physiotherapy and lymphatic massage (because of my swollen feet). But because of the lost balance learning how to walk is very difficult. I don' t need crutches but I have to hold on to somebody or something. The surgery now was done 7 weeks ago and I progress very little every day. But this seems to be normal as my doctor here told me because it is a " hard " surgery. I hope that I will be able to go to work again in about 4 to 6 weeks. I don' t need afos after the surgery. I only need insoles for my shoes. My feet look better now (no pes cavus anymore) and I am able to lift them up. The doctors told me that in six month I will be able to walk again in a more secure way than before. And I hope this statement of the doctors is right :-) Best wishes, > > > I am due to have a tendon transfer in about two months. My right ankle provides > me with no support and I walk on the outerportion of my foot. I was fitted with > a hinged brace on the right foot and have worn the hinged brace for about 1 yr. > or so. This kind of worked for awhile, > but I notice more and more that the foot is turning more outward. I can't wear > ANYTHING except a sneaker, and even then it has to be just the right sneaker. > After I have worn them for awhile they seem to stretch out and I keep retying > the laces to make them as tight around the ankle as possible, for this makes it > easier for me to walk, given the fact that the right ankle gives me NO support. > > After this tendon transfer, I was told I might not need a splint on the right > foot, then again I might. My foot is going to be flatter, my foot drop > improved, my toes will be less curled, for the orthopedic dr. is going to do a > few other corrections, on the conservative side due to my age (51). I am trying > to find out what experiences other CMT patients have had with this surgery and > was a big improvement noticed? What if any down sides are there to this surgery? > Is there anyone out there who has had tendon transfer and found they did not > need to wear a splint? I was told I still might need a splint, just a different > kind. Would this ToeOFF splint work? I now have the plastic AFO's, regular on > the left because this foot has foot drop, but the ankle is still strong, thank > god for that. Just dealing with the problems of one really bad foot is enough. > > Any input from others would be greatly appreciated. > > Thanks, > > Terry > littlet@... > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/975/5/_/616793/_/952435886/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 thanks for the input . Re: Tendon Transfer Hi Terry, my name is and I had done the transfer of the tibialis-posterior tendon (th tendon of the muscle in the calf) and a achilles-tendon lengthening on both feet in January this year. This surgery was done to make the pes cavus disappear and to help me to lift up my feet again. Two days after the surgery I tried to stand up again but it didn' t work because I hadn' t enough strength after the anaesthesia. On the fourth day I started walking and after 14 days I could leave the hospital. The doctors told me that probably I would be able to leave the hospital without crutches but for me it didn' t work. I now have five scars on every foot but there were no stitches to betaken away because they did a special kind of stitching. I also didn' t have a plast and I was able to put weight on my feet immediately. The only big problem I had was a lost of balance after the surgery and because of this walking out of the hospital without crutches was not able. After the hospital I started with physiotherapy and lymphatic massage (because of my swollen feet). But because of the lost balance learning how to walk is very difficult. I don' t need crutches but I have to hold on to somebody or something. The surgery now was done 7 weeks ago and I progress very little every day. But this seems to be normal as my doctor here told me because it is a " hard " surgery. I hope that I will be able to go to work again in about 4 to 6 weeks. I don' t need afos after the surgery. I only need insoles for my shoes. My feet look better now (no pes cavus anymore) and I am able to lift them up. The doctors told me that in six month I will be able to walk again in a more secure way than before. And I hope this statement of the doctors is right :-) Best wishes, > > > I am due to have a tendon transfer in about two months. My right ankle provides > me with no support and I walk on the outerportion of my foot. I was fitted with > a hinged brace on the right foot and have worn the hinged brace for about 1 yr. > or so. This kind of worked for awhile, > but I notice more and more that the foot is turning more outward. I can't wear > ANYTHING except a sneaker, and even then it has to be just the right sneaker. > After I have worn them for awhile they seem to stretch out and I keep retying > the laces to make them as tight around the ankle as possible, for this makes it > easier for me to walk, given the fact that the right ankle gives me NO support. > > After this tendon transfer, I was told I might not need a splint on the right > foot, then again I might. My foot is going to be flatter, my foot drop > improved, my toes will be less curled, for the orthopedic dr. is going to do a > few other corrections, on the conservative side due to my age (51). I am trying > to find out what experiences other CMT patients have had with this surgery and > was a big improvement noticed? What if any down sides are there to this surgery? > Is there anyone out there who has had tendon transfer and found they did not > need to wear a splint? I was told I still might need a splint, just a different > kind. Would this ToeOFF splint work? I now have the plastic AFO's, regular on > the left because this foot has foot drop, but the ankle is still strong, thank > god for that. Just dealing with the problems of one really bad foot is enough. > > Any input from others would be greatly appreciated. > > Thanks, > > Terry > littlet@... > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/975/5/_/616793/_/952435886/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Hi, Lamar ... I just wanted to say thank you for your intelligent, insightful comments and answers. I was wondering ... what are your qualifications? Are you in the medical field? Just curious. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Hi, Lamar ... I just wanted to say thank you for your intelligent, insightful comments and answers. I was wondering ... what are your qualifications? Are you in the medical field? Just curious. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Terry, Lamar here First what does the Dr. say? Second, this could be early symptoms of RSD (Reflex Sympathetic Dystrophy) , especially if accompanied by a purplish discoloration and pain. RSD follows an injury, including surgery for some unknown reason. Why some develop it and others do not is not known. Numbness and a tingly feeling may be entirely normal following surgery of this type, and can also be from CMT. I recommend you ask your doctor, and it would not hurt to ask him about RSD FW: Tendon Transfer > I was wondering if anyone out there has experienced what I am experiencing > now. Had a tendon transfer on my right foot on 4/26. I was in a hard > cast for 6 weeks and then a week later was put in a compression splint for > 2 more weeks because of swelling (had to stay off of work and keep my > feet raised above my heart. I am now experiencing swelling around the > inner/and outer ankle. I went back to work last Wed. I am still > experiencing alot of numbness in all my toes, however my big toe is very > numb and tingly. Has anyone experienced this? How long does it last, is > there a possibility that it will not disappear. Has anyone experienced a > big problem with swelling? I am going for an AFO fitting tomorrow and I > am concerned about this swelling and will it greatly affect the splint? I > am going for PT on Wed., although I do have a few exercises that I can do > at my desk. > > Anyone out there who has experienced the same/or similar surgery and could > enlighten me on if this is unusual or par for the course, it would be > greatly appreciated. Sometimes I feel that the doctors do not let you know > what to expect from week to week (long term). If anyone could answer my > questions, I would forever be greatful. > > Thanks so much, > > Terry Little > littlet@... ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Terry, Lamar here First what does the Dr. say? Second, this could be early symptoms of RSD (Reflex Sympathetic Dystrophy) , especially if accompanied by a purplish discoloration and pain. RSD follows an injury, including surgery for some unknown reason. Why some develop it and others do not is not known. Numbness and a tingly feeling may be entirely normal following surgery of this type, and can also be from CMT. I recommend you ask your doctor, and it would not hurt to ask him about RSD FW: Tendon Transfer > I was wondering if anyone out there has experienced what I am experiencing > now. Had a tendon transfer on my right foot on 4/26. I was in a hard > cast for 6 weeks and then a week later was put in a compression splint for > 2 more weeks because of swelling (had to stay off of work and keep my > feet raised above my heart. I am now experiencing swelling around the > inner/and outer ankle. I went back to work last Wed. I am still > experiencing alot of numbness in all my toes, however my big toe is very > numb and tingly. Has anyone experienced this? How long does it last, is > there a possibility that it will not disappear. Has anyone experienced a > big problem with swelling? I am going for an AFO fitting tomorrow and I > am concerned about this swelling and will it greatly affect the splint? I > am going for PT on Wed., although I do have a few exercises that I can do > at my desk. > > Anyone out there who has experienced the same/or similar surgery and could > enlighten me on if this is unusual or par for the course, it would be > greatly appreciated. Sometimes I feel that the doctors do not let you know > what to expect from week to week (long term). If anyone could answer my > questions, I would forever be greatful. > > Thanks so much, > > Terry Little > littlet@... ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 , Lamar here, for you and new ones, I am a 52 y/o with CMT (at least third generation) living in south GA. I had 30 years working in various aspects of mental health care that ended three years ago due to my CMT. My main work was in inpatient treatment where we worked with medical as well as mental problems. I was also in charge of infection control for our hospital. I am still an RN, with Mental Health, Mental Retardation, and Substance Abuse certification (RNC). I am also a certified HIV counselor and trainer, Substance abuse counselor, and certified in several types of group and individual therapy. My work included medication education to clients and families. That's my medical background, not counting me also being an EMT. I also have studied various forms of " alternative " medicine. (I prefer the term " conjunctive " .) My work in mental health does not make me immune to the psychological aspects of CMT. I have the same anxiety, frustration, and depression we all experience. I grew up seeing a mother and grandmother with it, and what it did as it progressed. I am divorced (8 yr.) and have one son 15 that lives with his mother. No other real family except cousins that I have seen a few times in my life (several have CMT, but are not in my area). I helped care for my mother and grandmother as theirs progressed to where they could not transfer from a chair without assistance. All in my family have followed that pattern, and mine is still progressing as theirs did. Therefore, I am pretty sure what lies ahead, and it is not pleasant. I am blessed by having a decent retirement income as well as SSD, medical insurance and Medicare. This is what helps me survive to this point, considering I had to absorb well over 30,000 of uncovered medical expenses from my late mother's final three months, and got " taken " by a " fiancee " for over 20,000. After she disappeared while I was gone to clinic I found there had been five before me that had experienced the same. She has basically supported herself that way for years. Oh well, lesson learned. I am more than glad to assist with answering questions I know, or utilize resources I have to find out. I can not recommend any medication or treatment, but can legally share my personal experiences and experiences of others I am aware of. We are all finding out what some doctors do not know about CMT!! If I do help others in any way, I am still doing some of the things I was trained to do, and that became a big part of my heart and life. Re: FW: Tendon Transfer Hi, Lamar ... I just wanted to say thank you for your intelligent, insightful comments and answers. I was wondering ... what are your qualifications? Are you in the medical field? Just curious. ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 , Lamar here, for you and new ones, I am a 52 y/o with CMT (at least third generation) living in south GA. I had 30 years working in various aspects of mental health care that ended three years ago due to my CMT. My main work was in inpatient treatment where we worked with medical as well as mental problems. I was also in charge of infection control for our hospital. I am still an RN, with Mental Health, Mental Retardation, and Substance Abuse certification (RNC). I am also a certified HIV counselor and trainer, Substance abuse counselor, and certified in several types of group and individual therapy. My work included medication education to clients and families. That's my medical background, not counting me also being an EMT. I also have studied various forms of " alternative " medicine. (I prefer the term " conjunctive " .) My work in mental health does not make me immune to the psychological aspects of CMT. I have the same anxiety, frustration, and depression we all experience. I grew up seeing a mother and grandmother with it, and what it did as it progressed. I am divorced (8 yr.) and have one son 15 that lives with his mother. No other real family except cousins that I have seen a few times in my life (several have CMT, but are not in my area). I helped care for my mother and grandmother as theirs progressed to where they could not transfer from a chair without assistance. All in my family have followed that pattern, and mine is still progressing as theirs did. Therefore, I am pretty sure what lies ahead, and it is not pleasant. I am blessed by having a decent retirement income as well as SSD, medical insurance and Medicare. This is what helps me survive to this point, considering I had to absorb well over 30,000 of uncovered medical expenses from my late mother's final three months, and got " taken " by a " fiancee " for over 20,000. After she disappeared while I was gone to clinic I found there had been five before me that had experienced the same. She has basically supported herself that way for years. Oh well, lesson learned. I am more than glad to assist with answering questions I know, or utilize resources I have to find out. I can not recommend any medication or treatment, but can legally share my personal experiences and experiences of others I am aware of. We are all finding out what some doctors do not know about CMT!! If I do help others in any way, I am still doing some of the things I was trained to do, and that became a big part of my heart and life. Re: FW: Tendon Transfer Hi, Lamar ... I just wanted to say thank you for your intelligent, insightful comments and answers. I was wondering ... what are your qualifications? Are you in the medical field? Just curious. ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 , Lamar here, for you and new ones, I am a 52 y/o with CMT (at least third generation) living in south GA. I had 30 years working in various aspects of mental health care that ended three years ago due to my CMT. My main work was in inpatient treatment where we worked with medical as well as mental problems. I was also in charge of infection control for our hospital. I am still an RN, with Mental Health, Mental Retardation, and Substance Abuse certification (RNC). I am also a certified HIV counselor and trainer, Substance abuse counselor, and certified in several types of group and individual therapy. My work included medication education to clients and families. That's my medical background, not counting me also being an EMT. I also have studied various forms of " alternative " medicine. (I prefer the term " conjunctive " .) My work in mental health does not make me immune to the psychological aspects of CMT. I have the same anxiety, frustration, and depression we all experience. I grew up seeing a mother and grandmother with it, and what it did as it progressed. I am divorced (8 yr.) and have one son 15 that lives with his mother. No other real family except cousins that I have seen a few times in my life (several have CMT, but are not in my area). I helped care for my mother and grandmother as theirs progressed to where they could not transfer from a chair without assistance. All in my family have followed that pattern, and mine is still progressing as theirs did. Therefore, I am pretty sure what lies ahead, and it is not pleasant. I am blessed by having a decent retirement income as well as SSD, medical insurance and Medicare. This is what helps me survive to this point, considering I had to absorb well over 30,000 of uncovered medical expenses from my late mother's final three months, and got " taken " by a " fiancee " for over 20,000. After she disappeared while I was gone to clinic I found there had been five before me that had experienced the same. She has basically supported herself that way for years. Oh well, lesson learned. I am more than glad to assist with answering questions I know, or utilize resources I have to find out. I can not recommend any medication or treatment, but can legally share my personal experiences and experiences of others I am aware of. We are all finding out what some doctors do not know about CMT!! If I do help others in any way, I am still doing some of the things I was trained to do, and that became a big part of my heart and life. Re: FW: Tendon Transfer Hi, Lamar ... I just wanted to say thank you for your intelligent, insightful comments and answers. I was wondering ... what are your qualifications? Are you in the medical field? Just curious. ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 7/17/2000 6:13:45 PM Pacific Daylight Time, lls@... writes: << Lamar here, for you and new ones, I am a 52 y/o with CMT (at least third generation) living in south GA. I had 30 years working in various aspects of mental health care that ended three years ago due to my CMT. >> Well you talk to me and I am pretty mental. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Hi, Lamar ... Thanks for the nice letter. As always, intelligently written. My best ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Hi, Lamar ... Thanks for the nice letter. As always, intelligently written. My best ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 Hi Terry, I had the tendon transfer done in January. Until June my feet were swollen. My doctor prescribed me lymphatic drainage (kind of massage) and I made a bandage for compression on both feet every day. When the pain was not to bear anymore I took ice-cold showers (only on the feet). The swelling is normal because a lot of lymph nodes and so on has been hurt because of the operation. And it could take nearly 3-6 months until everything is ok again. Yesterday I had my post-surgery-diagnosing. My feet are ok, but my brain has to work on the fact that the transferred tendon has to work differently now. It could take another six months until my brain knows it. Don' t lose your hope I know what you are going through. It will be better but takes its time. And you are right: the doctors never tell how long it really will take. Best wishes from Germany, " Little, Terry (CSR) " schrieb: > > I was wondering if anyone out there has experienced what I am experiencing > > now. Had a tendon transfer on my right foot on 4/26. I was in a hard > > cast for 6 weeks and then a week later was put in a compression splint for > > 2 more weeks because of swelling (had to stay off of work and keep my > > feet raised above my heart. I am now experiencing swelling around the > > inner/and outer ankle. I went back to work last Wed. I am still > > experiencing alot of numbness in all my toes, however my big toe is very > > numb and tingly. Has anyone experienced this? How long does it last, is > > there a possibility that it will not disappear. Has anyone experienced a > > big problem with swelling? I am going for an AFO fitting tomorrow and I > > am concerned about this swelling and will it greatly affect the splint? I > > am going for PT on Wed., although I do have a few exercises that I can do > > at my desk. > > > > Anyone out there who has experienced the same/or similar surgery and could > > enlighten me on if this is unusual or par for the course, it would be > > greatly appreciated. Sometimes I feel that the doctors do not let you know > > what to expect from week to week (long term). If anyone could answer my > > questions, I would forever be greatful. > > > > Thanks so much, > > > > Terry Little > > littlet@... > > ------------------------------------------------------------------------ > Get great brand name shoes with just the click of a mouse. Check out > the huge selection at Zappos.com, the Web's Most Popular Store! > http://click.egroups.com/1/6994/13/_/616793/_/963845585/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 Hi Terry, I had the tendon transfer done in January. Until June my feet were swollen. My doctor prescribed me lymphatic drainage (kind of massage) and I made a bandage for compression on both feet every day. When the pain was not to bear anymore I took ice-cold showers (only on the feet). The swelling is normal because a lot of lymph nodes and so on has been hurt because of the operation. And it could take nearly 3-6 months until everything is ok again. Yesterday I had my post-surgery-diagnosing. My feet are ok, but my brain has to work on the fact that the transferred tendon has to work differently now. It could take another six months until my brain knows it. Don' t lose your hope I know what you are going through. It will be better but takes its time. And you are right: the doctors never tell how long it really will take. Best wishes from Germany, " Little, Terry (CSR) " schrieb: > > I was wondering if anyone out there has experienced what I am experiencing > > now. Had a tendon transfer on my right foot on 4/26. I was in a hard > > cast for 6 weeks and then a week later was put in a compression splint for > > 2 more weeks because of swelling (had to stay off of work and keep my > > feet raised above my heart. I am now experiencing swelling around the > > inner/and outer ankle. I went back to work last Wed. I am still > > experiencing alot of numbness in all my toes, however my big toe is very > > numb and tingly. Has anyone experienced this? How long does it last, is > > there a possibility that it will not disappear. Has anyone experienced a > > big problem with swelling? I am going for an AFO fitting tomorrow and I > > am concerned about this swelling and will it greatly affect the splint? I > > am going for PT on Wed., although I do have a few exercises that I can do > > at my desk. > > > > Anyone out there who has experienced the same/or similar surgery and could > > enlighten me on if this is unusual or par for the course, it would be > > greatly appreciated. Sometimes I feel that the doctors do not let you know > > what to expect from week to week (long term). If anyone could answer my > > questions, I would forever be greatful. > > > > Thanks so much, > > > > Terry Little > > littlet@... > > ------------------------------------------------------------------------ > Get great brand name shoes with just the click of a mouse. Check out > the huge selection at Zappos.com, the Web's Most Popular Store! > http://click.egroups.com/1/6994/13/_/616793/_/963845585/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 In a message dated 7/17/00 10:49:37 PM Eastern Daylight Time, jacee17@... writes: << Lamar here, >> Hello Lamar Here, man that's a funny name. We have a bit in common, I worked for the Dept. of Mental Retardation for 25 yrs. By the way, you never say 52 yrs old. You say 52 yrs of age E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 In a message dated 7/17/00 10:49:37 PM Eastern Daylight Time, jacee17@... writes: << Lamar here, >> Hello Lamar Here, man that's a funny name. We have a bit in common, I worked for the Dept. of Mental Retardation for 25 yrs. By the way, you never say 52 yrs old. You say 52 yrs of age E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2000 Report Share Posted July 28, 2000 Hi everyone, I am curious. I have noticed that the foot I had the tendon transfer on is now larger. The foot lays flatter on the ground and the toes are straighter, which would account for the size being larger. I was fitted for a new AFO but it needs to be redone because it is not correct. Needs to be positioned so my foot is turning more inward, not outwards. What I am asking is this...............has anyone experienced the same problem. Perhaps I should go out and buy a larger pair of shoes (perhaps 1/2 size larger or 1 size larger) just to get me by for now. I am wearing an old pair that is the largest size I own, but they are not the greatest. If I do this, I see another problem. The left foot is still the same, so if I wear the bigger size on the left foot, it is going to be too big. Has anyone experienced this problem. I was also told by the ortho dr. that the plan is to eventually not wear any brace at all. That is the plan, but who knows how long that will take or if it will happen. I am quite discouraged. I am aware that Nordstrom sells two different sizes of shoes to the public, but right now I feel that I am in an in between stage for buying shoes and everyone knows how costly these shoes are. I have so many pair in my closet now, unable to wear alot of them because of changes in my CMT. What is frustrating is that I am not sure what to do. Any help/advice would be welcomed right now. Terry Little Littlet@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Terry, Just FYI- Nordstrom will sell two different size shoes, but there has to be a two size difference between each shoe. L Tendon Transfer Hi everyone, I am curious. I have noticed that the foot I had the tendon transfer on is now larger. The foot lays flatter on the ground and the toes are straighter, which would account for the size being larger. I was fitted for a new AFO but it needs to be redone because it is not correct. Needs to be positioned so my foot is turning more inward, not outwards. What I am asking is this...............has anyone experienced the same problem. Perhaps I should go out and buy a larger pair of shoes (perhaps 1/2 size larger or 1 size larger) just to get me by for now. I am wearing an old pair that is the largest size I own, but they are not the greatest. If I do this, I see another problem. The left foot is still the same, so if I wear the bigger size on the left foot, it is going to be too big. Has anyone experienced this problem. I was also told by the ortho dr. that the plan is to eventually not wear any brace at all. That is the plan, but who knows how long that will take or if it will happen. I am quite discouraged. I am aware that Nordstrom sells two different sizes of shoes to the public, but right now I feel that I am in an in between stage for buying shoes and everyone knows how costly these shoes are. I have so many pair in my closet now, unable to wear alot of them because of changes in my CMT. What is frustrating is that I am not sure what to do. Any help/advice would be welcomed right now. Terry Little Littlet@... ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Hi Terry, I had exactly the same problem after the surgery. In March/April I went to different shoe shops and fonud out that my size didn' t fit anymore. So I didn't buy any shoes. I had the feeling my feet were larger so that I needed one size more. But - and this is a good but - this wasn' t so. After a few weeks I went to the shops again to buy some sandales (it was very hot here in Germany) and I took one in my old size and they fit. I guess the problem is because the feet are swollen even if you think they look normal. Since January I wear one pair of shoes, sports shoes, and it is difficult for me the get my feet used on other shoes. Two weeks ago I was at my post-surgery diagnosing and the doctor told me that the transferred tendons are particularly still working the way they did before. This means my brain is still working on the fact that the tendons have a different work to do. Because of this I still have " problems " (not enough strength to walk longer). But this is not unusual because adults need longer as for example kids do. I told him my shoe problem and he advised me to wear my sports shoes as long as possible because very new shoe (it doesn' t matter if he really is new or just new for the feet) confuses the brain. I could imagine that you have nearly the same problems. Bye, > Tendon Transfer > > Hi everyone, > > I am curious. I have noticed that the foot I had the tendon transfer on is > now larger. The foot lays flatter on the ground and the toes are > straighter, which would account for the size being larger. I was fitted for > a new AFO but it needs to be redone because it is not correct. Needs to be > positioned so my foot is turning more inward, not outwards. What I am > asking is this...............has anyone experienced the same problem. > Perhaps I should go out and buy a larger pair of shoes (perhaps 1/2 size > larger or 1 size larger) just to get me by for now. I am wearing an old > pair that is the largest size I own, but they are not the greatest. If I do > this, I see another problem. The left foot is still the same, so if I wear > the bigger size on the left foot, it is going to be too big. Has anyone > experienced this problem. I was also told by the ortho dr. that the plan is > to eventually not wear any brace at all. That is the plan, but who knows > how long that will take or if it will happen. I am quite discouraged. I am > aware that Nordstrom sells two different sizes of shoes to the public, but > right now I feel that I am in an in between stage for buying shoes and > everyone knows how costly these shoes are. I have so many pair in my closet > now, unable to wear alot of them because of changes in my CMT. What is > frustrating is that I am not sure what to do. Any help/advice would be > welcomed right now. > > Terry Little > Littlet@... > > ------------------------------------------------------------------------------ > > ------------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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