braces/splints/supports - general questions

[Superstottie]

Thank you Nemonie - I quite like the look of that and I really like the price! So many of them that I have been looking at have been at least £50 each, and when I need a pair that gets a bit ridiculous!!! Might have to buy one and see how I get on with it, then buy the other side if it works.

Thanks again! x x

[Rosie]

Hi all

Do have a look at this thread. It is a bit long but does mention the exolite braces, and if I remember correctly, there is also a link to a similar brace but different make that is a bit cheaper. I use them for both wrists and they are the best ones I have found for me. I particularly like the fact that they are lightweight, and much less sweaty in hot weather!

Rosie

[AbiSmith_97]

Hey,
im new to all of this but have HMS/EDS Type 3 and have dislocated my knee cap/ knee collapsed several times in the past few weeks, and have been told by consultant i need a 'donjoy brace'. has anybody ever had one of these and know what they actually are?

thanks,
AbiSmith_97

[Rosie]

Hi Abi

If you use the search tool on 'donjoy' you will see that they are discussed on several threads, like this one.

Rosie

[LazyHaze]

Hi abi smith, know how you feel on the knee front , it depends on what one you get really, some a hinged and some are more like a material brace with a hinge, it depends how bad they think your knee is.

[pinkiepunksmummy]

Hi, DS was given a leg splint which was 'off the shelf' by his physio. It was sent out to us and I was told to start using it straight away. He was not measured for it and it was different to the one I was told he would be receiving. I phoned to query this, was told to use it, it would be fine and it would be checked at the next appointment (which never came). I reluctantly used it, but it was causing him pain and discomfort rather than helping. I showed it to his orthotist, who said it was completely unsuitable, "cruel" and "would not do the job it was prescribed to do" and advised not to use it anymore.
DS is now waiting for knee splints, which I was told were 'off the shelf' whilst in the clinic. We have waited weeks for them to arrive, but now I have been told they are actually 'a specialist order' so will take a long time.
Now, surely if something is a 'specialist order' then it would need to be made from detailed measurements??? Because the only measurements taken were very brief.

So, is this normal? To send out a splint, in the post, without the child being measured properly/at all, without assessing the fit/suitability, without ever seeing the child wearing the splint??? DS was given a wrist splint to wear when he broke his hand, after the plaster came off. The fit wasn't checked, it cut into his skin and has left a scar. None of this seems right to me, when he needs new insoles/boots he is properly measured/fitted/assessed in 2-3 appointments. So ho could something as major as a splint over a joint be so casually sent out?????

[RainbowsButterflies]

A couple of questions...

1) any ideas on some kind of splint I can use to stop my hip subluxing almost every night - that wouldn't be too uncomfortable to sleep in?

2) I'm getting so much pain in my elbows and knees now that I think it's time to try supports for bad days - what kind would you recommend trying to start with?

3) Any tips for SI pain? (I've had this since I was about 20 weeks pregnant with my 4 year old )

[Superstottie]

For SI joint problems I use a serola SI belt, this one - http://www.pregnancybackcare.co.uk/ and it really does help to hold everything together! I find it helps when sitting, standing, walking - pretty much everything.

For the hip - I am still trying to find one myself, but a friend of mine has a foot splint that has a bar that comes out to the side in order to stop the leg from rotating outwards when lying on the back.

Hope that helps! x

[Rosie]

Hi all

pinkiepunksmummy, I do think it sounds like your son has had a rough deal. Splints and braces do need to fit well to be able to do their job, so sending one through the post is a bit strange. It does sound like the physio does nto understnd that HMS/EDS-H can mean that skin is fragile, so a good fit is vital. They can't expect your son, or anyone for that matter, to wera a splint that causes pain. Would it be possible for you to ask the orthotist to supply the splints instead? Or to get him/her to contact the physio to discuss the problems?
Let us know how it goes withthe knee braces.

RainbowsButterflies - there is a thread on knees and supports here that you may find useful, many of us have knee splints. There is also a good thread about SI joints in the Personal & Sensitive area, so worth asking for access to there again soon.

Rosie

[pinkiepunksmummy]

Hi Rosie, thanks for the reply.
My son's orthotist has offered to supply the splints, and told me to ask the physio for a referral to him. She had agreed to do this, nearly a year ago. I have chased, reminded, asked nicely, asked firmly, explained my son's knees are getting worse and worse. In early December we saw her and she said she would supply the splints herself (a different kind to the ones the orthotist had recommended, which I am not happy about) but didn't seem to think he needed them at all. He knees are literally bending side to side as well as bending like they should. He is walking with a limp a lot of the time due to the pain when his knees give way.
My son's legs now look like this >< instead of like this || from the front.....the physio tried to tell me this is something that happens to all little boys as they grow. I don't know any other 8 year olds with knees like these.
I am now worried that if these splints ever turn up, they will be either poorly fitting or unsuitable. (We waited over a year for insoles for my daughter from the same physio which far too small when they eventually turned up, even though I had phoned regularly to chase and give DD's new shoe size.) This woman makes me so tired, the only things she does consistently is lie to me. None of my children have had any actual physio since we were transferred to her.
I think I will try to get my GP to refer son to his orthotist to assess the knee splints or lack of!

[Gramalkyn]

In 2006 I woke up with what I could only described as a 'dead arm'... thought I'd slept on it badly.... after a week of numbness, tingling & wierd achyness, I went to the docs who told me to rest it as I'd probably trapped a nerve, take anti-inflammatorys and come back in a fortnight. So, 2 weeks later, I went back and saw a different doctor who sent me for an x-ray, and subsequently an mri, then nerve conduction testing (this appointment ended in the first diagnosis of HMS...) It was decided that I had golfer's elbow, and 6 months later went for nerve decompression surgery (I won't even go into the trauma that occured during that surgery!! ) Safe to say, it didn't work... I still have altered sensation, numbness and weakness (& an awful scar) and often, excruciating pain eminating from my elbow....
Today is one of those days
I find that having a crepe bandage in a figure of 8 on my elbow 'eases' it to a degree... I wear wrist splints often and have custom made rigid wrist/forearm splints to sleep in (terrible habit of over-curling my wrists whilst I sleep!), but its my elbow that exaspirates my wrists/hands on a bad day...

I know the cold doesn't help, I have Raynauds, but take nefedipine during the cold times.
I also have Fentanly patches as a constant (originally prescribed for compacted vertebrae & herniated discs), codeine if its really bad, and oramorph when its horrendous. I'm already at the codeine level today.

So I'm wondering, what about an elbow support? Does anyone use one? Has anyone got any recommendations?

Thanks in advance,
Fee

[Rosie]

Hi Fee

Have a look through this thread earlier, I think elbow supports are talked about on page 3.

Rosie

[trekster]

I've been prescribed splints to wear at night for my carpel tunnel. They are OK to wear but my left hand is completely numb in the morning before i take that splint off. Is this related?

[Superstottie]

What sort of splint is it? Is it those stretchy elastic material type ones? If so maybe you are doing it up a bit tight, and cutting the circulation a bit. I was using those as my Physio gave me one she managed to find when they told me I needed them for my carpal tunnel but couldn't supply them, but found them worse than wearing nothing. I then bought myself an exolite brace which doesn't need to be tight at all to give support as its rigid plastic, and it helps so much with my symptoms and no extra numbness!! With he fabric ones I was still able to bend my wrist, and sort of cause a crease at the bend, cutting circulation!! it's amazing what positions you can get into in your sleep I find!!

[trekster]

It was supplied by my physio under similiar circumstances to yours. Mines my writing hand so it could be that im compensating
by doing it up tighter with my other hand? Was wondering if that could be an issue. I have a mild latex allergy and there could be
latex in these but i doubt thats the problem. Cheers will try loosening it.