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Author Topic: Getting to my wits end with these problems, any advice, experiences to share?  (Read 1361 times)

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Offline DRJAD

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Background: right leg weakness around knee for several years, caliper (full length) on and off for some time.  Now caliper full time.   Below knee iron on left leg to stabilise ankle which was getting increasingly loose becasue of lots of twists and sprains.   Right calf pain only relieved by boot shaped internally to keep foot pointing downwards by about 30 degrees, so left boot is raised to compensate.   

Now: calf pain in right leg has returned with a vengeance, together with pain on outer side of right foot after standing for more than 10 mins., foot feels as though it needs to turn in and further downwards.   Many cramps each night.   Excruciating pain from right knee when moved, and from right ankle.   Much Naproxen together with cocodamol seems only to mitigate it a little.

GP has talked briefly of knee replacement, but I'm too young to be offered it - and, anyway, it wouldn't deal with the foot/ankle problems.    Wearing a caliper all the time (except at night) is a pain, with rubbing in laces, etc..   Pain and caliper/BK iron are really very disabling.

Now at my wits end as to what to do, what to request, what to pursue.

Any ideas would be welcome.
1958: Polio, caliper until age 16, then OK until ...
1990: RL full length caliper, LL below knee double iron + raise to accommodate RL tendon contracture
2004-now: Violent RL knee/ankle pain continuous.

Offline Nettan

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You need to see a OS specialized both on knees and ankles if you haven't done that to rule out what's best options for you. A GP can be useful but not when it comes to this.
Hope you can get help with it.

hugs nettan  8)
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline DRJAD

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Thanks Nettan.    Over the years, as it's got worse, I've seen a succession of orthopaedic surgeons.   That's how I had the caliper and BK iron prescribed.

They always seem to want to approach it as a 'not makng it worse' option, but it gets worse on it's own.   There is also, seemingly, a problem in describing the severity of the pain from it, i.e. I don't seem able adequately to describe it!

I've just moved to a new part of the UK, but it's rather remote from major centres.   However, perhaps a referral will, by chance, put me in touch with an orthopaedic surgeon who will listen and make a difference.

As far as bracing and footwear is concerned, it's very difficult to get surgeons and orthotists to understand that now is not the right time for correction: if one is to get as active a life as possible, the problems need to be eliminated or braced in such a way that minimal pain results, rather than maximum correction (which in my experience increases the pain.)     (Is it possible, I wonder, to devlop a semi-clubfoot condition in adult life?)

Thanks again.

D.
1958: Polio, caliper until age 16, then OK until ...
1990: RL full length caliper, LL below knee double iron + raise to accommodate RL tendon contracture
2004-now: Violent RL knee/ankle pain continuous.

Offline DRJAD

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I might add that I'm no longer looking for a cure, etc., would would be perfectly happy with the chance to become more active with less pain and inconvenience!

With diminishing muscle strength in the leg, a cure seems unlikely.
1958: Polio, caliper until age 16, then OK until ...
1990: RL full length caliper, LL below knee double iron + raise to accommodate RL tendon contracture
2004-now: Violent RL knee/ankle pain continuous.

Offline Nettan

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You say you don't have time for correction right now and rather would like bracing to get pain down.
But in the post you also say you don't like the bracing. Maybe you need first before getting the referal determine what you want yourself. Has anyone mention correction and also getting pain down by correction ?
Maybe you need to get to a clinic where all work together to get best results, not only one doc.
If you have big problems with pain maybe a painmanagement clinic or some rehab clinic would be useful for you where they have wider experience and where both different docs and orthotists, pt are working together.
I am a difficult case and I have been both to painmanagement clinic and to neurorehab clinic. Ok, they haven't been able to help with everything but though my life is better now then earlier.
Wish I could help you more !!

Hugs Nettan  8)
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kath

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Hi drjad...I agree with Nettan, that in order for you to get some relief, you need to see the specialists in the field...both knee specialists and pain management.

Have you had surgery on your right leg?  Do you have what's known as "drop foot" from damaged nerves?  Just curious...I don't know a lot about it, but it is strange you need to drop your foot to get pain relief.

kath
Bi-lateral unicompartmental Nov 2004

Offline DRJAD

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Hullo again.  Just returned after some travels.

We've fairly recently moved to a different area of the UK, which means a different health authority.   Therefore getting to see a consultant means a new referral from a GP, and waiting times, etc..   In other words, it feels like starting all over again.  THough I will have to get some kind of referral for orthotic services when my caliper or boots need repairing.

No, I haven't had surgery.   I've rather shied away from the idea, though it has not, as yet, been pushed very much.

I have a bit of a dropped foot on the right, but the adapted boot enables the foot to be angled downward more than the angle of the drop, which alleviates pain from the back of the calf muscle.   I'd like the angle to be increased ruther now, since the pain is starting to return.

Thanks for the advice.   I'm looking really for advice for options I can discuss with a consultant when I get to see one again - an informed discussion is what I'm after.
1958: Polio, caliper until age 16, then OK until ...
1990: RL full length caliper, LL below knee double iron + raise to accommodate RL tendon contracture
2004-now: Violent RL knee/ankle pain continuous.