Full hip replacement coming soon

Hi new on here but have had cmt for 30plus years just wondering if anyone has gone through this how hard was your recovery etc. I have a severe case of ostio arthritis and have already had breakage of bone due to arthritis told could expect problems just wondering what and if any have experience d told has to be done no matter what or I will be wheelchair bound and in pain

15 Replies

  • Hello to Busyma......

    Just a little note of caution ?

    Is your your Canadian Consultant Orthopaedic Surgeon, aware that you

    have already been diagnosed with the clinical genetic disease, called Charcot Marie Tooth (Cmt) + (if so what sub-type) disease:

    Remember, that the majority of our own UK NHS Professional's have never seen one 'single-case' of Cmt in their whole medical career !

    Most regrettably today UK surgical procedures require a strict management of

    your local NHS Health Board's funding:

    Be very cautious, because if you state, "I have Cmt Disease", they then may reverse their decision, to operate, and then adopt a, "let's wait and see policy", for any future, and further developments:

    Their is no proven medical link between Cmt and osteoarthritis, and the pain relief you are seeking for your arthritic hip joint:

    Go for it, as the physiotherapists will have you up, and mobile within 48 hours:

    No ! you are not "heading into a wheelchair", if you were your orthopaedic surgeon would then decide, not to operate on you:

    Best of health......

    John (Glasgow)......



    However, never forget that your Cmt Disease will never go away, and it still will cause your remaining lower limb's muscles to 'Atrophy' (waste-away), ever so slowly throughout your remaining lifespan:

    This is entirely due to your damaged "peripheral-nervous-system" (neuropathy):

    Cmt Type 1A - Where this sufferer has defective 'myelin' sheathing' (nerve-insulation), which 'leaks', resulting in a severe loss of velocity (speed) of any stimulating electrical "wave-signals" required from your brain to your 'lower-limbs':

    Best of health......


  • Thanks so much I am in Canada so I am covered no matter what for surgery and he is very much aware of my CMThe stated because of it I may have complications because of it such as lesser mobility I have had this for well over 2 years and finally found a specialist who says your not to young lol and he said I have such damage now that I need it no matter what. Possible phantom pain from it do to cmt just waiting on a date and my blood work hemoglobin to go up as I have been anemic for past year or so :( but thanks for encouragement really need that I'm scared enough with just going under lol

  • Forgot to say in last reply john but its very rare for any doctor to know about CMT usually its oh okay but my surgeon seems to have a lot of knowledge on it my family doctor read up and researched it after I told her about it so she was very frustrated with the first surgeon I saw that said 5 years . as I have such a rapid case of arthritis that within 6 months it went from very little to severe and she couldn't believe it now my knee has done same thing but my hip is first like I said if does get done soon there will nothing they can do for me its gone that far I'm sure if everything else about me was strong and healthy he would have done it that day so kinda scary for me as I have never complained or talked about my wows of CMT or any other pain as I don't like self putty but for some reason that's where I find myself going so frustrating for me to have to rely on anyone and hate seeing my children watch me be in pain 24/7 any ways will update as I go along sorry for venting :)

  • Hi busyma,

    I have CMT type 2 and had a total hip replacement in July 2014 because of osteoarthritis. The first surgeon I saw refused to do the surgery because of my condition, but he referred me to his colleague who did more complex procedures. I was told by the surgeon that it would take me quite a bit longer than normal to recover and that was the case. Only now, 18 months later do I feel recovered., just in time for the other hip to begin bothering me! There was pain, but just the normal post surgical pain and that didn't last long. I had a special hip replacement put in, one with a locking ring, in order to decrease the possibility of dislocation because of the weak muscles around the hip joint. And I had to spend a few extra days in hospital until the physio was sure I was mobile enough to go home. Overall it has been an ok experience and the joint isn't painful any more. I have been very fortunate to have an excellent follow up service, so that any problems which arose were seen to right away by the surgeon or the joint replacement nurses. Good luck!

  • Thank you I figure it will take a lot longer so thanks for comment it helps

  • Hi from the UK, I have type 1A. I had a total hip replacement last June 2015. There was never a question about doing the surgery. I had to work around my poor balance but with the aid of walking sticks it was not a problem. I do feel though that some of my mobility was lost but its better than constant pain. Good luck.

  • hi,

    I had op in August last year and I was up next day and was surprised how quickly I got moving.Yes the first steps were painful but it got better quicker than expected. I have less pain now and have been sleeping better .

    ive had cmt since birth and am 50 years old ,so I think its worth having done.


  • Hi everyone, I am seeing a surgeon soon as i osteoarthritis in both hip joints, one is more painful than the other. I have CMT 1A so have followed this post with interest.

  • I will keep yous posted on my surgery date and progress as I'm sure there is a lot of people in our situation with CMT but just don't ask :) thanks for all your comments puts me a little more at ease as my doctor has said it must be done no choice for me which is okay can hardly wait to walk without a walker also to be pain free

  • Well I go in one week so he wasn't kidding when he said immediately

  • I hope all will go well for you !

  • Hi had a hip replacement 4yrs ago,and although I have had cmt for 40yrs plus got over it ok,since then I had a knee replacement 2yrs ago,can't say I'm out of pain with them both,but the pain isn't has bad has it was.i have Pes Cavas feet and numerous operations since the first op when I was 11years old,I am now 69y.

    Good luck with your hip replacement.

  • Well all done 6 days ago home 3 days now yes pain is there . but I have movement and night times the worse my muscles tighten so quickly but I am getting through it better than I let my imagination was saying lol best thing was getting up and walking hopefully I will continue to heal I'll keep you up to date I will say don't delay if doctor says needs done do it don't wa8t won't get any easier and puts you at higher risk

  • Its been 8 weeks now doing great using a cane only but healing nicely I can walk without the cane but do limp since I have drop feet takes extra effort to pick up my feet so I do error on the side of caution I would do it again if I was told I needed it done even withe risks because my pain was almost intolerable.

  • I'm really glad you are doing so well !

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