Where to start

Hello everyone, I was diagnosed at the age of 26 with cmt x linked, my way of coping was to block it out. I went to see my consultant who gave the impression it wasn't a major disability and just get on with it. I saw a physio and also had some material foot supports. Over the years I noticed a slow progression, needing to wear my splints all the time and if out for longer walks I wore my blue rockers AFO's. I'm now 34 have had 3 children and still try a live a normal life.

I went to my doctor a couple of weeks ago to ask if I could finally have some help, I am not happy with my AFO's and said they have been hurting my knee and I felt that it was due to the imbalance on the ground and pushing my knee out. I also mention the pain I was in through hammer toes. My doctor has referred me to have a orthopaedic assessment. I'm hoping to be able to get some funding for SAFO's, I have done some research and think these are the way ahead for me.

I have my appointment in 2 weeks but in the mean time I walked up to get my daughter from school, I cut through a little wood, which wasn't flat but while wearing my blue rocker AFO's my knee dislocated and I fell to the ground. I can not tell you how scared I was, alone in the wood looking down to see something very wrong with my knee. Help arrived and my knee cap was relocated, I was taken to A&E been x-rayed, I have been put into a full leg brace and have a follow up appointment on Monday. They are concerned I have done more damage that will need surgery. I am off my feet but when the time comes to get back on my feet I am very scared that it will happen again. I do believe my knee wasn't right due to ill fitting AFO's, I do believe this is why my knee dislocated. Although apprehensive to have surgery I want the problem fixed and don't want to be in this situation again.

Should I be doing anything else? Is surgery the way forward? Is there any other splints better than a SAFO which aren't as big or invasive as the AFO's I've had?

Any help would be much appreciated.

11 Replies

  • Hello there, I also have CMT X linked. I was diagnosed at 13 (in 1976!). Now, before I give you my very personal take on treating CMT, I should say that each CMT case is quite specific to the individual and therefore what works for one may not be the best way forward for another. Also, in my family, the effect of the disease on the male members has been considerably worse than the females. I'm currently discussing the issues of living with CMT with my 3 children (1 daughter and 2 sons). If you would like me to discuss any of this in more detail please let me know. I wish you a speedy recovery from your knee injury and please don't let this scare you in any way, all the issues of CMT can be, in some form, overcome or worked around.

  • Thank you for your reply ajs6000, I am aware of the difference between male and females with x linked cmt and as a female I'm less effected. I am the 1st in my family which I find difficult because I know no one else who is going through this. I would be very greatful for any advice. I should add I have 3 girls to which I hope have my good X!

  • Hello again,

    I was the first to be diagnosed with CMTx in my family so I have some idea of how you feel.

    However as it turned out, all the members of my family (except my Father) including my Mother’s Sisters (3 of them) and their families (all their children) have CMT x linked, so now some 37 years later I have lots of people to talk to about the condition and how it effects them, both male and female.

    I had Triple arthrodesis surgery on both ankles when I was 15 (1979) and it resolved all my ankle and foot drop issues and is still fine today, although as the calf muscles have now wasted away almost completely I find my balance is an issue as it’s like walking on stilts! Another plus of surgery is that you will never rick your ankles again!

    The only drawbacks of the surgery, from my experience, is the recovery time (6 weeks) and the pain for the first 2 or 3 days after surgery. I’m not sure how I would deal with the recovery time if I was having the surgery today, with work, school runs etc. However as I had the surgery 35 years ago they may have developed better procedures that have a quicker recovery time. You could also opt to have only one ankle operated on at a time which reduces recovery time.

    I would ask to be referred to an orthopaedic surgeon who specialises in this type of procedure on Monday when you have your follow up appointment for your knee injury. She/he could then at least give you all the options available to you.

    Obviously having surgery when you are 15 is, I believe, much easier than when you’re an adult, so consider all your options and discuss them with friends and family before making a choice.

  • Thank you for your reply. It's very reassuring to know your surgery was successful and hasn't reversed. From the orthopaedic consultant I saw this week he suggested any surgery is still 6 weeks recovery which is something we would have to think and possibly plan. We have 3 very young children and my husband is in the services and due to deploy next year.

    If I don't get the answers on Monday I have a orthopaedic assessment on the 24th October.

    Do you wear supports? AFO's etc? I'm currently looking into SAFO's and very reluctant to wear the ones I already have as I believe they are a tributing factor for the dislocation.

  • Hi there, sorry to hear ur troubles. I've got cmt & have had problems with my knees dislocating since I was 21. I'm now 46. With me, it's happened when my ankles have been unstable but mainly has occurred when I have twisted, lent my knee against something without thinking or sat down too quickly. A consultant years ago, & a doctor more recently said there is some type of procedure where they adjust the knee cap ligament but that it's complicated & my doctor actually paused when he said that which has put me off (I'm also a chronic bronchial asthmatic, so that might be an issue for an operation). Anyway, I'm still putting it off. Actually dislocated my knees about 9 times in 20 years. But more recently I wear ski strap supports (when I go outside anywhere) which are a good idea if you don't want to be stuck on the floor after a dislocation. If you move awkwardly they've got spiral metal stays in them which remind the cap & you to return to a more normal position, so it can give u time to quickly correct your footing. I have had several incidences like that in the kitchen where I've been able to prevent it happening. For me, knowing I can do it at anytime makes me always wary of how I move & what I'm doing through the day, I find thinking through how I approach chores for instance before I do them helps but it is a worry. Hope you get on ok. Forgot to mention that I've never worn afos etc. & still dislocated knees

  • Thanks for your reply and I'm sorry to hear of your knee problems, yes you must be on edge wondering if a move will cause another dislocation. I had my visit to the fracture clinic on Monday, everything is back in place and no damage has been done to need surgery. I am relieved but at the same time I know I am at higher risk of this happening again.

    I'm having physio who have said I have some muscle wastage around my knee which may have been the cause. The main thing the doctors and physio have said is treat it as an injury which needs to heal, forget about the fear of it possibly happening again because that's what's scaring me.

    This has given me the wake up call not to ignore my situation. I have orthopaedics next week so hopefully between us we can sort some splints out, I'd like some SAFO's!

  • Hi, sorry to hear of your knee problems. I have type 1a CMT and, like Lilybet, have been prone to knee dislocations for a number of years. It's usually due to twisting on one leg, particularly with a heavy object like a suitcase in one hand or leaning over something with a sideways pressure on the knee. I believe it's to do with muscle wastage around the knee, I don't wear any ankle bracing such as AFOs or SAFOs, just MBT rocker soled sports shoes which help my gait. The only positive side is that I find it doesn't hurt that much when it happens, just unpleasant, and they go back in again very easily allowing me to continue standing/walking after just a couple of minutes recovery (and a few Anglo-Saxon words) with no lasting discomfort. I'd be interested to know if this is typical? Apart from being aware of the risk of injury during the inevitable fall, I just accept it as part of my life and get on with it, that's the best thing we with CMT can do in my mind. I'm still skiing at 60 and don't find CMT too much of an impediment, though my balance is getting worse these days. I do hope you find a solution which works for you.

  • Thank you and I'm so sorry I have taken so long to reply, I did respond to your message but who knows where it went!

    I've heard good things about MBT Shoes and spoke about them at my last orthotic appointment, I'm not sure I'd be any good because of my balance but going to give them a try. The problem is I can't walk well without any orthotics and my old ones are what have caused my knee dislocation, I've been back and they have ordered new AFO's and agreed if I try them and still want SAFO's then they will support funding. I'm very pleased because I really think they will help. The one problem I'm having is after 4 weeks I'm still waiting on AFO's to be delivered, this means I can't try new suitable footwear without orthotics.

    I'm feeling so low at the moment and not being able to get out and about the way I'd like because of lack of support. You start to think this is how life will be but I'm so hoping with better support I could get back to pre dislocation. It's been nearly 3 months since my injury and my physio is amazed at the strength I have but still without walking devices I'm frightened to go out on my own with my children in case I can't look after them properly, run after them if I need to!

    Oh well I keep telling myself this is the kick up the behind I need to make myself strong and fit to give myself the best start, sometimes easier said.

    I hope everyone has had a wonderful Christmas, our children have been amazed by the whole magical experience. You think Christmas is great as a child but I think it's a whole lot better when you have children.

    Happy new year to all. X

  • Gotta jump in here - if your ankles are unstable, especially with your knee problems, DO NOT go for MBT shoes - they will only make your ankles more unstable. Very very highly NOT recommended.....


  • It be honest In my opinion surgery makes it worse I had an operation when my knee goes it's now more painful as feels like scares going to rip open Ino how painful it is I have had it happen since the age of 7 am now25 x

  • Thank you for your response, it's nice to know other people are struggling with simular problems.

    I didn't go for MBT's, I have bullied my orthotist into funding SAFO's and have found a very light weight trainer which is great.

    I'm lucky I didn't need surgery, I can still feel a noticeable weakness but I'm building up the strength slowly. It must be horrible for you to keep dislocating it. They say it's not linked to CMT but it doesn't seem like it on this site!!!

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