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. ----- Original Message ----- From: oregonpapa@... egroups Sent: Monday, July 17, 2000 2:18 PM Subject: 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 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! > 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 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 October 27, 2004 Report Share Posted October 27, 2004 Hi Gretchen, thanks for the feedback. I have tried P.T. and gave up on it because my foot felt worse the next day. Honestly, I dont think I gave it a fair shake (about 3 sessions). Maybe this is old school CMT but I can remeber my mother saying that too much exersice can make CMT worse. I have also tried orthotics(500 dollors worth) and hate them. I like wearing the cheap ones from Walmart better. Thats great that you parents found a doctor who knew what to do so long ago.WOW. The doc I am seeing is @ Mercy hosp. in land. I know I do need to get a second opinion. Maybe in Phila or Hershy. Ill keep you posted. Thanks again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 I had tendon transfers in 1990 and within 2 years my feet were worse. I have had 4 more surgeries since, all failed. There is no guarentee with any surgery so don't expect it to always work. I know of others who have had success. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 I had tendon transfers done on my fingers about 30 yrs ago and they did not work. I have foot drop on both feet. I have been wearing an AFO. It is so hard to find decent looking shoes thaat will fit with that. I am considering an ankle fusion. Does anyone have AFO that they wear . How do you find shoes that don't look like orthopedic shoes. I could really use some help. I am from a small town near Green Bay Wisconsin. There are no doctors that I know of that know to much about CMT. How do you find one? I would love some advice. Thanks, Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Dr. Friedman is a great doctor. Went to school with his sister. sorry about your mom. I cannot think of the doctor that I went to but I will look up his name. I know it is not Dr. Jeng. I am not a candidate because on both my feet by outer foot and my inner foot are both very weak so there is no place to take a tendon from to transfer. Do you have foot drop? The AFOs really help with foot drop. I got my first pair 20 years ago and only wore them when I wanted to walk long distances. I just started wearing them full time in the last 2 years because my foot drop is so severe. I think you will find if you wear the AFOs with tennis shoes or something like those you will find a lot of support. for dress, I wore them with shoe boots. I will write back when I find the name of the doctor I went to. He is a surgeon and is on the CMT suggested doctors list. Jackie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.