I have just reached the stage where my toes have curled under to the extent that my weight is on the ends of some of them, rather than the pads. It can be jolly painful. For many years it has been very difficult to slide my feet into shoes unless the inside is extremely smooth, as the toes catch on any hint of texture, and can get bent underneath (excruciating !) , but this is a new problem.
Have you any suggestions that would help, please ?
I know just how painful this can be. Visit your podiatrist and have him make you some silicone pads which lift your toes just a little bit and you will once again be pain free.
Thank you for your understanding and suggestion, Collip,
I have just had a session with my podiatrist - last week - and she was confident that it would be fine when she had trimmed the nails - only it isn't . I suppose i'll have to wait another 4 months now as it isn't exactly what they'd call an emergency.
I have been wondering whether there was any point in trying the orthotist, as he did rather unenthusiastically give me an arch-supporting insole for my NHS ankle boots on my last visit - but it was an off-the-shelf thing and it hurts too much to wear it.
I've had that Amanita, & I've had surgery to straighten them which has been a great help. I had some last about a year ago, my toes were so curled I was tripping over them, my GP referred me to an orthopeadic surgeon who booked me in. I was only in an afternoon, they did it under local anaesthetic and it only took a couple of hours. It didn't hurt at all, I just sat and read a book whilst the surgeon operated (you can't see cos they put a screen in front of you). When you've finished you have a special surgical shoe on & bandages & you are taught to walk on your heels and not allowed to walk far. I used crutches for a while, then a walking stick. You get the stitches taken out at your local surgery & then get a couple of follow up appointements.
I thought it was great and it does help pain & walking.
Thank you, Spabbygirl,
Maybe I'll try and see if the orthotist can help in the shortish term at least . Then I'd consider surgery if he (or the podiatrist in 4 months' time) can't help, or if the problem gets significantly worse.
I should be quite worried about the added mobility problem in the weeks (months ?) following any surgery, as I already need an elbow crutch for balance outside the house, at least. The other consideration is that living alone and depending on being able to drive it could all be rather difficult logistically . But it may have to be the solution as a last resort. So thanks for giving me an idea of what's involved.
I had the same problems as you, I have had all my toes straightend and the joints removed and have had no problems since a little exstreme but did the job
Hi Amanita, you can buy toe pads the sit under the toes were the bend is, they have a band across them so they hold in place when you're on the move.
Best wishes
Doug
It may be a sign of bigger things. It sounds like "maybe" CMT, Charcot Marie Tooth Disease. Definitely go to a podiatrist!!
Hello to barkinatbirds, and Amanita .....
So sorry, your recent advice/post, that Amanita goes to see a 'Podiatrist', is totally 'flawed', and entirely wrong ! ! !
The only UK's NHS medical professional, who is fully qualified to diagnose if a patient has Charcot-Marie-Tooth Disease, and more importantly, 'what-type' they have, is a NHS Consultant Neurologist !
Your GP if asked, should refer on to you to your local NHS Trust Hospital, where a Neurologist will arrange the following tests....
1) Examine the patients previous medical history:
1) A full examination of the patient, to check their body(s) relex points:
2) Look for signs of any muscle atrophy (wasting-away) in the patient:
3) Arrange for Nerve Conduction (speed) tests, to confirm nerve damage:
4) Arrange for 'specialist' blood sample to be analyzed:
5) These tests are usually done by a 'specialised' university laboratory:
Note: Many Neurologists today may be reluctent to instruct these blood tests, as they are very expensive to your local NHS Healthboard:
6) A full diagnosis and result, will usually take 5 / 7 weeks:
A podiatrist can only offer a patient, a temporary measure to relieve pain:
If a patient is willing to accept this ongoing/continous, and "temporary" treatment, that is their own decision ?
However, if the patient is agreeable, they then could be referred to an Consultant Orthopadic Surgeon, who will explain the various options available to the patient:
Hello to the patient ! it's now entirely your own personal decision, either accept, and continue with a podiatrist's temporary, and limited care, or seriously consider a toe straightening procedure offered by an Orthopaedic Surgeon, who with todays medical advancements, could do this procedure as a "Day-Surgery" procedure ? ? ?
Hello to patient !
It is now your decision time, and is totally down to your own individual choice, whether or not, to accept, and live with this disability, or tackle it 'head-on' ? ? ?
Sorry. I meant a podiatrist maybe to start with. My guy was the 1st Dr I saw to give me advice to go to a neurologist. I just meant as a starting point to lead someone in the right direction, or where to go. I am sorry I upset you so bad. As I have it myself, I know about all the fun that goes with it. As curling toes "may" be a sign, like mine do (curl). If you actually had read what I typed it says, "MAYBE" C.M.T. And since it was a podiatrist who pointed me in the right direction, and that they know about it than a regular Dr, "might" be a place to start. But anyway, since the toes are technically part of the foot, YES. They probably should go to a foot Dr. Again, sorry to bunch your knickers, but it was a "SUGGESTION". NOT a diagnosis. Ass clown.
Oh. Ya. That message was for "JOHN1945". The guy who randomly trolls around, to do nothing, but try to twist other people's words around.
Thanks for the replies :
Keefer - I'll thoroughly investigate non-invasive options before even thinking about enquiring about surgery, so it's useful to know that pads for toes exist . It is a recent development for me and not yet painful all the time, but no doubt will become so.
Carpy - if I do have to resort to surgery, I'll be encouraged by your experience
Barkinatbirds - it certainly is CMT ! I just put up with it from childhood and got on with my life for ever so many years, until by 2011 it got too intrusive, and I sought help. I had had an unofficial diagnosis (but absolutely no help or advice) some 20 years earlier, so at least I was able to tell my baffled GP what was wrong, and that I needed to see a neurologist. I was officially diagnosed (type 1A) in 2012.
John - the main problem about surgery, if it should ultimately turn out to be the best option, is how on earth to cope on my own while it is healing. Also I read somewhere that day-surgery isn't generally recommended for CMT patients (not sure why).
So I very much hope that a "temporary" solution will do for a good long time.
I shall have to wait another 3 months to see the podiatrist again, but need to make an appointment with the orthotist quite soon, so shall initiate enquiries with him.
Hello again Amanita.....
Patients with Cmt who require any kind of medical procedure, that requires them to have a "general-anesthetic", are kept usually kept in hospital for a further 24hrs (approx) observation:
The drugs and gasses used used during the operation , are slower to leave the Cmt sufferer's body:
Therefore, your anesthetist may wish to keep you in overnight, to ensure that the effects of the anesthetic they administered, are totally clear of your body:
Best of luck.....
John (Glasgow) !
Ps !
However, do not be surprised if your medical team offer you the option of a "nerve-blocker" procedure ?
This modern option, in which you will be fully awake can also be done as a "day-surgery" procedure, with a more rapid return to normal ?
Thanks, John,
If you read my posts below ("an update" and the one following), you will see that I have been given a temporary solution by the orthotist - which helps a little, but is difficult to put on. I have also had a well-meaning but completely unusable "solution" from the podiatrist.
The orthotist didn't think any orthopaedic surgeon would even consider operating ( and I have not been referred to one anyway).
My main worry about surgery, if it ever did come to that, is how on earth I would be able to cope at home and getting around completely on my own while it was healing, but in the circumstances that seems a purely academic consideration.
Hello to Amanita.....
'Day-Surgery' is today's more modern way to approach any medically invasive procedure(s):
The NHS now recognise that having a "post-operational" patient, lying in a bed after surgery, is not advisable for their body's circulation system ?
It is now more generally recognised that a recovering patient is far better to be out of bed, and as active ASAP, to prevent the possibilty of blood clots forming etc:
Also as Cmt patients medical needs are now becoming more widely recognised, therefore your NHS Anaesthetist may insist that you stay in hospital for a further 24hrs, as the anesthetic administerd may be retained, in your blood/respitatory systems for a longer period, than is nornal:
This has happened to me twice in the last 8 years, and I never questioned the NHS Consultants, request/advice ! ! !
I am fairly confident that your any 'post-operative' recovery, will be less demanding than you think:
Ask your Orthopaedic Consultant, "what is my prognosis" ? and how long will I require crutches ? and when can I put my both foot/feet on the ground, and do you propose to do one foot at a time ? ? ? (one at a time is my advice) ?
Take care....
John (Glasgow)
Thank you, John.
I am still hoping it won't come to that, but thanks so much for all the information. I can't get an orthotics appointment until January, so I'll have to wait until then to see if there's an alternative (as suggested by Collip and Keefer) that will keep the problem at bay. The thought of having to try to keep a foot off the ground is too scary .
An update -
I had a rather unsatisfactory session with the orthotist. He watched me walking without my boots, (but with ankle supports and socks) and said my toes curled under intermittently - which he attributed to sporadic activity of reflexes ( is that possible ? None of my reflexes reacted when first tested in 2011). He just said that there was nothing he could do about it.
I asked whether he could at least create some insoles that would be soft for my toes to burrow into (hoping for something custom-moulded) , and he produced a flat piece of foam for the technician to cut out to fit inside my boots. It wasn't noticeably any better than before, so I asked if there was any kind of gel device to protect my toes ( thank you, Collip and Keefer). He reluctantly gave me a sort of single toe-sock with a gel cushion at the end - then found another when I reminded him both feet were affected.
I asked him if he thought there would be any benefit from getting them straightened, and his response was extremely unenthusiastic. He said I could ask my GP for a referral to an orthopaedic surgeon, but he was pretty sure the surgeon wouldn't do it.
Oh well, the toe-socks do reduce the pain quite a lot, but it takes nearly 10 minutes to put each of them on with weak fingers, and toes which just buckle. That is in addition to the time spent wrestling with my ankle supports. I'll see if the podiatrist can come up with something better.
My podiatrist did indeed mould me something to go under my toes. They are made from something a bit like dentists' moulds, so although a bit bendy, there is no "give" in them. I had to wait until the next day to try them, as they had to be completely set.
They are so extremely painful to walk with that I had to take them off after 15 minutes. So it's back to my battle to get the gel-cushioned tubes on.
i have just had surgery for this very problem whereby they have broken 3 toes taken out tendons and put pins in to straighten them out. Not sure how successful it is going to be yet as the pins dont come out until next week.
Hi, Bev,
Very best of luck with the recovery and I do hope the surgery will have very good results for you.
Shortly after my last comment on this topic, the unhelpful orthotist left and his replacement is a wonderful contrast. He made me a pair of AFOs (heaps more effective than the old elastic and Velcro supports) with soles that go right to the end of my toes and with ankle straps to fasten before putting my boots on. This way my toes can't get caught as I slide them in. Meanwhile eventually my podiatrist gave me the details of a mail order firm that sells gel toe supports, and I got a supply. They are working pretty well at the moment, though they are quite a challenge to put on. My toes are kind of floppy with a tendency to curl under rather than actually being stuck in bent position - I guess not bad enough for something as drastic as surgery.
Amanita, I wear a wider shoe to accommodate my AFOs. This also give more space for my hammertoes. I also purchase a shoe (English call them trainers I believe) with a cloth/mesh toe box. That gives more space for hammertoes than a hard leather. Let the fashion police come after me. I'm all about getting the most comfort I can with these wonky feet.
Thanks, Beachwine,
My NHS AFOs fit my NHS boots (super-wide with deep toe boxes and soles that are thicker at the outer edge) . Together these solved a number of problems, but the AFOs had only a very thin layer of foam rubber padding at the toe end and even with the gel supports my toes were increasingly pressing in to the foam and hurting. Only last week I finally managed to persuade my orthotist to put thicker padding in - seems to have done the trick for now : time will tell. My boots are anything but elegant, but who cares! They are black leather, and with my black AFOs and black Smart Knit socks don't draw too much attention to themselves.
UPDATE - MY REPLY TO MEMAMBE
How can you diagnose CMT ?
Peripheral Neuropathy pain