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The CMT Surgeries That Changed My Life
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- Опубликовано: 18 авг 2024
- Hi! My name is Bethany Meloche. I am a writer who also makes videos about living with CMT. I hope you'll subscribe and join me on the journey :-)
Instagram: @bethanymeloche
Facebook: / bethanymelocheauthor
Website: www.bethanymelo...
learn more about CMT: www.cmtausa.org
buy my book: www.amazon.com...
I saw your other video where you were using a walker and noticed the feet still dropping the same as all of us with this disease. The reason I mention this is I had experimental surgery in the late 70's, what they did was tighten the tendons running on top of the foot. Each foot took 8 hrs to complete and they did them both a day apart. After the casts came of months later the arch seemed to be straighter but it wasn't long until they dropped again, I wish I hadn't had the surgeries, they were painful and within a yr my feet looked like they use to, completely concaved. I also notice your hands are very weak, I'm lucky mine didn't start to show serious weakness until my late 40, I am now 60 and although I consider myself to be pretty steady with them I have very few muscles to tightly grip things when it come to say pulling a power tool battery out of the tool because it requires squeezing and pulling. I know I am lucky and thank God everyday for what he has given me, we could have gotten something much worse, I may have been deaf and never heard my children laugh, been blind and never seen how beautiful they are. I truly believe what helped me for so long was tossing the braces after 1 yr using them as a teen, my Mother kicking my butt not to feel sorry for myself (she had it too), and keeping busy outdoors fighting falling down on uneven ground, pushing myself to trudge on, I of course fell many times but I got back up and went on. I know a walker is in my future, I lie to co-workers saying I limp because of an ankle injury so that I don't get a pity party. I date and after it looks like the person is someone I think I'd like to be with I tell them the truth of what's wrong and let them know if it's too much I want them to move on without guilt because there's always something about ppl in our life that is just too big of a burden to take on. I was married for 24 yrs, he left because of his issues, not mine and I have been dating someone for 8 yrs now going strong. The best thing you can do is not give up on doing things for yourself, and thank God for the blessings in your life. Lastly I was on different muscle relaxers and pain meds for decades, but finally 2 yrs ago I decided no more pain meds and it wasn't as hard to live without them as I thought, also a few yrs ago I started a different muscle relaxer that seems to help better than all the other ones without side affects it's called Tinzanidine and works really well to prevent muscle cramps.
Thank you my boyfriend has this and I’ve been encouraging him to get his feet fixed! He is 40 and shouldn’t wait any longer.
I waited, but I found the right surgeon and I am glad I waited until I just couldn't cope with the chronic pain & the pressure ulcers, but having a good surgeon is key. Good luck to him.
this video makes me so comfortable knowing i’m not the only one with this :)
Yay! It's amazing the power of feeling understood.
Hey Gabriel! The same way I felt until I found Bethany!
Thank you for being such a great support for all patients.
Thank you for this sweet comment!
I have CMT my grandson also have CMT your foot is just like his . We have. been trying to talk to e about having surgery but he wants to have his leg removed. I hope your story will change his mind. Thank you for sharing.
Sending love to you and your grandson. I do know of a couple people with CMT who have gone the amputation route, but typically after other surgical intervention has failed.
A very excellent explanation of the surgeries. I am in my 40's, I had my 1 of 3 surgeries in 2016, on my 4th (just had it a week ago). I opted for an "experimental" surgery -- one to twist my foot over to the right using wires drilled in to the bone. This will be my final fix as an ankle fusion is not a good option for me. If this procedure does not correct my walking, then I will opt for a forefoot amputation. I am wondering if your ankles have arthritis too? I have CMT Type 1A and so did my dad, my sister and my son. The one thing I have noticed is just how differently it has affected all of these people - it's really mind blowing. I am in Eastern Canada, not a lot of doctors know about CMT & for the most part, they have no idea just how debilitating and life changing it is for those affected by it. Thanks for sharing your story. Also, AFO's & splints never worked for me either, my feet were just too difficult to keep on, despite the constant modifications & For the last 3 years I had been wearing a cast boot for daily walking just to keep my foot straight, this came with it's own set of ortho problems. I look forward to hearing more about your CMT. Kes :)
Hi Kes, sorry for the slow response! How were the results from your last surgery? While I hope it was successful - you've certainly been through a lot - if you do have to pursue forefoot amputation, I know someone who recently had that done and I'm sure she'd be happy to talk to you.
I don't believe I have any arthritis in my ankles, knock on wood!
I’m glad to hear a positive account of tendon transfers, I think you might be the only person I’ve heard an account from that isn’t regret.
I had mine in 2002 when I was 16 and it was not a good time haha... I never needed braces until my surgeries. It did relax my arches but oh man... I managed to continue walking with crutches until about six years ago. I’m thankful for that at least 🖤
Thanks to you all for sharing your CMT journey's. From what I am reading, Dr. Pfeffer seems to be the one with the most experience. Can anyone comment on successful surgeries with Dr. Pfeffer, including how long ago their surgery was and how it is holding up?
Dr Pfeffer has definitely done a lot of CMT surgeries. Are you on Facebook? If so this would be a great questions for one of the big CMT Facebook groups!
I will be getting this surgery in about a month, thank you so so much for these videos ❤️
I'm so glad it was helpful, wishing you wonderful results and easy recovery!!
How are you doing after surgery? I am getting it soon. I have been dealing with it for 16 years and can't stand it anymore.
Wish I never had mine done ore at least found a better doctor but I was a kid what did I know, glad yours turned out better.
I hear you, I was 14, state hospital, Ins, would not pay
Yes, I consider myself lucky and hope I don't unintentionally suggest surgery is *always* the answer. I'm so sorry you had bad results :(
I have CMT 1A. I was officially diagnosed in 2017 via DNA test. I dealt with this my whole life. I’m 40 now. CMT really showed it’s nasty face in my early 30’s. I’m about to have this surgery now. I’ve had several prior because I kept getting ulcers on my feet and I eventually just collapsed at work, because I went into septic shock(Septicemia) also osteomyelitis. I lost the metatarsal in my left pinky toe. I’ve tried every shoe you could think of. The only shoes that are sorta ok are New Balance wide 9 1/2 E. You can forget wearing anything with memory foam, and super soft shoe souls. I have a nice set of Carbon Fiber AFO’s, but even those are worn out now. Insurance makes you wait 3 years every time you get a new set. I’m sure I’ll have a third set after recovery. My neuropathy is out of this world and the only way to describe the pain or feeling is by saying it feels like being plug into a light socket over and over all day long. I hate the medicine they use to treat it Gabapentin, Cymbalta, and Lyrica. The outcome of the medication is way worse than the positives of the medicine. I gained almost 100 lbs (Lost that thank goodness.), and the drugs made me extremely angry, because the drugs they use to treat this is an antidepressant. I don’t suffer from any mental health issues and I think the drugs had an adverse effect on me. Had to stop and return to the shock. I made so many people angry with me. I couldn’t help it. I’m currently waiting on a few ulcers to heal on both feet. They did a Biopsy last week, so hopefully good news and we’ll carry on with the surgery.
Hey! I also have 1A, I'm 14 and currently recovering from the surgery. I hope it goes well for you!
I wear swim shoes as they are wicked flat & the width is comfortable. Not very good for support, but it covers my weird feet.
@@sobble821 I’m sorry I didn’t know you had said something. I hope your surgery went well. Mine did, but it was extremely painful. I had mine done in may of this year. Still using my AFO to train my ankle, and it swells pretty good sometimes. I’m glad you are getting this done now while you can be at home with family. Good luck.
@@kestraavalon I’ve done some swim shoes before. They aren’t bad. I like that they don’t get twisty turny on you. Finding shoes are a nightmare.
Great video! Thank you!
I had a tendon transfer on both feet.
My left foot the Dr also fused the ankle ..
And my surgery date was before you were born ...😊
My scars on my left foot is in the same place as your only difference he used Staples
That started to back out
Had to get them removed ...
Oof, that's a lot to go through! I hope the results have been well worth it :-)
Are you happy with the results and fused ankle?
Hi! Thanks so much for sharing all your experience with your surgery. I also have Cmt A1 and I just had surgery a month ago and I have done similar things as you did, so far I still in recovery and I haven’t started physical therapy but I want to ask you something did you have your foot and ankle numb after your surgery and if you did for how long you have it because I still have my foot and ankle numb and my doctor says it will eventually come back to normal feeling but I will like to know from some one with experience like you and I also will like to know if you have use ankle strengthening or stabilizer to help straightening your ankle because even after my surgery my ankle still looking a little twisted, please 🙏🏼 let me know when you can. Thanks and God bless you with good health and help you to go through all this pain.
Thank you so much, we are trying to get a diagnosis, but CMT is the most likely...he is 16 and his onset has been quite rapid. Im trying to learn all i can and i really appreciate your video's...im learning so much
Genetic Testing, CMT is so funny in how it shows up but if he has it, he was born with it. My feet were "good" as a kid, but I still could never do sports or dance as I had poor co-ordination, terrible reflexes, I tripped and fell a lot, so there were always signs, mine got really progressive after turning 30. Good luck to him.
Hi Mike, I'm so glad the vids are helpful! Any luck with a definitive diagnosis?
i am 15 and getting this in 4 days
Thinking of you! You got this!!!
@@BethanyMeloche thank you, it’s done now and I’m at home, in a lot of pain but will be worth it
@@skoovee The pain was so brutal the first 2-3 days. Hopefully you are through the worst of it and getting some reprieve. And it's the best feeling when they take that cast off and you see your new, straight foot for the first time!!
@@BethanyMeloche thank you!
I'm heading back to the MDA clinic at Duke University in January to see if they'll be able to recommend surgery on my feet, or at least my right foot. I've been wearing AFOs for 14 years now, but I can't walk at all without them, & I need to sit in the shower.
Hey there, I'm curious if you ended up having surgery? If so, I hope you are happy with the result!
Not yet, but I'm still positive I need it... I've been dealing with other health issues as well, & had to have cataract surgery on my right eye last year (I had a retinal occlusion, a stroke basically in my eye in 2016, although they never could figure out why), so the feet got put on hold. I'm kinda scared tho, because as a teacher, I can only schedule these things in the summer so I can recover, but I also need to be able to drive my kids places all summer-esp. because my oldest wants to start college tours.😬
@@theartfuldodger5326 Oh no, so sorry to hear that! Totally makes sense you put the foot on hold... one surgery at a time! 😅re: driving post surgery, hm, that definitely complicates things. I wonder how expensive installing hand controls into your car would be. Might be worth looking into?
My 3 yr old is newly diagnosed with cmt mutation nefl. Do you have to wait for surgery until they are a certain age or done growing?
That's an interesting question. I'd say these procedures are intended to be corrective, not preventative, and so wouldn't be appropriate on a young child whose feet haven't progressed yet (and as you pointed out, has a lot of growing still to do!).
I am planning to have the same surgery as you soon. My doctor wants to fuse my ankle, though.
Wishing you a smooth recovery and worthwhile results!
I’ve just recently been told that I’m a great candidate for tendon transfers in my hands. It’s like hearing of a miracle. It’s scheduled for March 23. I’m excited and scared. Have you ever considered transfers in your hands?
Hello, I'm 72, and have had many cmt operations, ankles in 1964 when l was 14.....at age 24 had tendon transfers in my legs 1974. they were experimental back then also had bone taken out of the instep of my feet to straighten out foot better, helped a little, at age 32 my left thumb was useless, couldn't hold a glass, had a tendon transplant on it and it was miraculous...l hope your surgeries went well, l tear up when young ladies get this disease..God bless
@@klartavaHey, I'm 14 now and currently recovering from my first surgery! It feels really nice to know kw someone else has gone through something like this before and I'm not alone
CMT center of excellence? Can i have more info on this plz? I have never heard of this. I had corrective surgery on both feet at once in 1988. My feet looked just like yours, I had both heels done and they pinned both great toes. I have no calf muscles so i did not under go any thing to the calf.
Yes! Check it out: www.cmtausa.org/living-with-cmt/find-help/cmta-centers-of-excellence/?_ga=2.176526373.1696198569.1583086914-1602744351.1582575580
@@BethanyMeloche Thank you so much for your videos. I have never met anyone outside my family with CMT. It helps me so much to hear from others with CMT.
PXT3003.?
Hi! Is your insurance pay for that? And how much is that cost for you? Thanks.
Hi there thanks for this informative video. Can you please share the name of your surgeon in Michigan?
I live in SW MI and had surgery in Dec '18 and June '19 at Northwestern. I can give you contact details if you would like.
@@jamisonbennett thank you that would be great!
@@jamisonbennett Dr Arthur Manoli!!
@@MeatOnYourBones Dr Arthur Manoli!