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Lycra Splints for people with cerebral palsy

GeorgieGeorgie Posts: 31Member Listener
edited May 2016 in Cerebral Palsy
Hi,

I was wondering if anyone could tell me whether you have to pay for new lycra splints? I'm 24 and when I'm 25 I will be discharged from the place that currently provide my lycra splints.

I was told once I'm discharged I will have to go to my GP and they will refer me to orthoics if I ever need new lycra splints, but I'm not sure if you have to pay for the splints or not, and if I do how much it would cost?

Thank you for reading

Georgie

Replies

  • Debbie_ScopeDebbie_Scope Posts: 947Member Pioneering
    Hi Georgie,

    We're not sure if there is a definitive answer to your question because much will depend on the local NHS Trust in your area and whether they are able to provide the funding for this. Talk to your GP and they will be able to tell you more.

    Also check out http://www.secondskin.com.au/ to see if you have a clinic near you.

    Hope this helps

  • GeorgieGeorgie Posts: 31Member Listener
    Thank you very much for your help

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    Hi Georgie,

    Please let us know how you get on with you Lycra splints, they sound really interesting. Do they correct your foot position, and improve your gait? Do they get very hot? Sorry lots of questions, I also have CP and have hinged plastic AFO's, but always looking for new lighter solutions that allow one to have normal size shoes!

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    Hi Noah,

    I was asked to try lycra splints a few years ago because I'm able to walk normally. The problem I have is because I've walked on my toes all of my life due to CP, I struggle remembering to walk normally. Lycra splints don't stop me walking on my toes, but I find I'm able to balance a lot better with them.

    They do tend to get hot in the summer, but I used to wear plastic splints as a child, and the lycra splints don't get anywhere near as hot as they used to. The lycra splints are a lot more comfortable to wear, and I don't notice I'm wearing them, and I only have to go one shoe size above my normal size.

    Sorry for the long reply. I hope I managed to help

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    Thanks for that - very helpful information and a huge help. :)
  • GeorgieGeorgie Posts: 31Member Listener
    I'm glad I could help

    Georgie
  • StayceStayce Posts: 275Member Pioneering
    edited August 2015
    Hi Georgie,
    The likelihood is that your GP will send a letter to your local NHS hospital commissioning board requesting the item to be funded locally

    I use DMO Ltd Lycra splints https://www.dmorthotics.com. Privately a Lycra sock costs around €300

    Hi Noah,

    I thought this maybe helpful. I am able to wear normal sized shoes with Lycra splinting. Very light weight improves sensory feedback. If choose the right colour not that hot in the summer months.
  • GeorgieGeorgie Posts: 31Member Listener
    Thanks Stayce. What colour do you choose so they don't get too hot in the summer months?
  • StayceStayce Posts: 275Member Pioneering
    edited August 2015
    For summer months I find beige is the best material as it is less dense and slightly more lightweight and breathable. Darker colour (black, blue etc) lycra I have found will last longer and need less repairs because of the dye process of the material.
  • GeorgieGeorgie Posts: 31Member Listener
    Thank you. I've never tried any other colour other than blue. I'll have to try beige
  • StayceStayce Posts: 275Member Pioneering
    No problem, I hope it helps. I also have my lycra sock made with a complete soft toe portion, so as not to have to wear another sock over the top of the lycra splint, which may also help with heat.
  • GeorgieGeorgie Posts: 31Member Listener
    Brilliant. I will speak to them about that too because I have to put another sock over my splints
  • StayceStayce Posts: 275Member Pioneering
    edited August 2015
    Great - Let me know how you get on and if I can be of any further help, just message me via this forum. I have been wearing lycra splints for 6 years and have learnt some tricks :) Good luck
  • GeorgieGeorgie Posts: 31Member Listener
    Thank you very much. I've only been wearing them for around 4 years
  • StayceStayce Posts: 275Member Pioneering
    No problem, if you are going to ask for a toe panel to be added - ask for a soft toe panel. Don't let them add a toe panel made of lycra as this will increase the muscle tone in your toes. Good luck
  • GeorgieGeorgie Posts: 31Member Listener
    Thank you. I will do
  • NoahNoah Posts: 430Member Pioneering
    Thank you for all your comments, not sure how I missed a lot of this conversation. Anymore feedback on lycra splints? I'm currently carrying out some research as I would definitely like to try them out and see how they compare to my plastic hinged afo's.

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    I love my lyrch splints. They're easy to put on, and once you get used to them, you can't feel you're wearing them. Before I had my lyrch splints I had plastic splints. They were very difficult because you had to get your foot into them at the right angle, you had to get shoes 2 sizes bigger than your foot size, in the summer they got very hot and hard to walk in. Lyrch splints don't get as hot in the summer as my plastic splints did
  • StayceStayce Posts: 275Member Pioneering
    edited November 2015
    Hi Noah and Georgie - Hope you are both well.

    I too love my lycra splints. I would definitely encourage giving them a try. Best piece of orthotic kit I own. Having right sided Hemi I have a lycra sock and glove. Noah - I think for anyone thinking about trying lycra splints I would ask them What would you like to get out of them that you currently don't from your current splinting option? What is your sensation like in affected limbs? What is your muscle tone like?

    I have reduced sensation in my right side - the lycra gives me some sensation back, and proseptive awareness of where my foot and hand are.

    My muscle tone is high - with lycra splinting you can feel the muscle tone physically dropping. You also get some carry over affects once you have removed garment too.

    Basically the garments are stitched in a variety of panels - panels which will reduce tone in high tone areas and other panels which will attempt to activate muscle that maybe don't work so well, providing some strength/ support

    I wear a neuro template insole in my shoe as well as lycra Sock and do not need to increase my shoe size at all.

    Noah if you need any further help with this or have any further questions please get in touch. Happy to help with this. I have done a lot of research on this. Hope this is helpful

    Best wishes
    Stayce


  • NoahNoah Posts: 430Member Pioneering
    Thanks Stayce,

    It all sounds most interesting and hopefully I will have the opportunity of trying some out. My muscle tone is also very high, in both my legs.

    I love the idea of being able to have greater sensation in my legs, and not having to wear shoes that are 1 size to big!

    Did you have to go private? or did you get them on the NHS?

    Thanks also for your great comments on my other post, you really have provided us with some very valuable information, I will be adding to that post soon the things that I have also found helpful in managing my CP.

    Kind regards

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    edited November 2015
    Hi Noah,

    I got my lyrach splints through the Young Adult Team. However, next year I will have reached their age limit, so will no longer be able to see them. I asked if I would be referred to another team for over 25s, and they said there isn't one. When I stop seeing them, I don't know if I will be able to get replacement lyrach splints on the NHS or whether I will have to get them privately. I'm sorry I can't be of any help

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    edited November 2015
    You have been a great help Geogie. Thank you. Maybe see if your young adult team can referr.you to a foot and ankle specialist and an orthotic department to try and ensure you can continue to get the lycra splints post 25.

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    Thanks Noah

    That's a great idea. I'm seeing the Young Adult Team for the last time in February, so I'll see if they can refer me to anyone else who can help

    Thanks again

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    edited November 2015
    Your welcome - that's what this community is all about, sharing ideas to hopefully enable individuals to have a better quality of life.

    Let us know how you get on in February.

    Before your consultation it can be helpful to make a few notes, to ensure everything is covered.

    Explain to your consultant what outcomes you are trying to achieve, and make it clear you need their help to reach them.

    All the very best

    Thanks for your help to with the lycra splints info.


    Noah
  • NoahNoah Posts: 430Member Pioneering
    Another little tip.......make it clear to your consultant that you are happy to travel to a hospital in another area, and can they refer you to somewhere else if they don't have the right specialist locally. I travel 140 miles each way to see my consultant.

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    Thank you. I hadn't thought about asking to travel somewhere else if they didn't have the right specialist

    Thanks again

    Georgie
  • StayceStayce Posts: 275Member Pioneering
    edited November 2015
    Hi All -

    Noah - I get my lycra splints through the NHS. Where do you live? If you are based in London I would recommend RNOH. I travel miles too for my consultants. I am thinking of writing a Rough Guide to Orthotics in the UK :) I would talk to your GP about how you could be referred ( so many rules these days :) I also get one set made privately because I like
    the luxury of wearing clean socks (the splints are machine washable so ideally need a spare while one dries). Both my NHS and private sock are made by DM Orthotics Ltd - they run regional clinics https://www.dmorthotics.com/services/clinics. This URL gives you details to contact a clinician direct (email or phone) I have found them to be very helpful and fair, they will tell you if they don't think something will work. Perhaps give them a call / or drop them a line, they will also be able to tell you which NHS Hospitals they serve in your region as their clinicians train NHS orthotists/ physios and OTs how to measure for the lycra splints.
    Georgie - which company are your current lycra socks made by DMO or Second Skin? This maybe a way to find out where best to be referred post 25. If you know which other hospitals that will supply your current splints you can go to your GP or consultant with some options for a referral that are more likely to be what you need.

    Great post everyone - lets keep on chatting great to hear from everyone

    Best wishes

    Stayce
  • StayceStayce Posts: 275Member Pioneering
    edited November 2015
    Just remembered this from Paralympics 2012 which I thought might be of interest regarding lycra splints https://www.dmorthotics.com/news/dm-orthotics-increase-performance-paralympian/
  • GeorgieGeorgie Posts: 31Member Listener
    Hi Stayce

    I'm not sure what company make my lyrca splints, but I'm seeing the Young Adult Team for the last time in February as I'm not 25 until April, so I'll know more then

    Georgie
  • StayceStayce Posts: 275Member Pioneering
    edited November 2015
    Hi Georgie - There should be a logo stitched on your lycra splints most likely at the top of your shin if it is either Second Skin or DMO? Or if your lycra splints were made years ago before they both started the branding, but that would be many years ago now - is the washing instruction label still visible this will have a manufacturer details printed either DMO limited or Second Skin most likely? Failing that I would bet that you have a Jobskin lycra splint as these don't carry a logo. Let us know.
    If you are still unsure I would definitely ask the Young Adult Team when you go in February and make sure you make a note of it in case you need to talk with consultant/ GP about getting another one post 25. I find the more you know about what works for you the better equipped you can be at getting it -
    - you know the old saying of "knowledge is power" :)

    Let us know how you get on. Hope that helps

    Best wishes Stayce

  • NoahNoah Posts: 430Member Pioneering
    edited November 2015
    That's a great idea, doing a rough guide to Orthotics in the UK. Let us know if you want any help with that.

    Most encouraging to hear that you would recommend the RNOH, as in 3 weeks time I have my first appointment with a Dr Jim Ashwoth-Beaumont at that very hospital to discuss different options for improving efficiency and reducing bulk of my hinged plastic AFO's :-)

    I have also recently had a private consultation with Crispin Orthotics in Leeds to discuss them making me some Carbon Fibre AFO's, its all rather exciting, and I already have a design! Which I'm sharing with all the my consultants for their input and feedback.

    Earlier today, I rang and spoke to DM orthotics, just to discuss with them what they can offer, i was very impressed, they have suggested sending them some photos of my feet so the can assess if the lyrcia solution may be suitable.

    I'm also interested in some of their other products to that may help improve my bad posture that I'm working so hard on.

    I agree with you that going armed with knowledge of what is available, possible and helpful to you, when attending consultations, always is a great help, it increases your chances of getting what you need, and I think the consultants enjoy working with informed patients who are trying their best to achieve more.

    Thanks to you and Georgie for contributing to a most interesting discussion, and please let us know how you get on in February with your consultation.

    Noah

  • GeorgieGeorgie Posts: 31Member Listener
    I've looked on my lyrca splints and the logo DMO is on there

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    Maybe it is worth contacting DMO just to find out what the costs would be, to supply you with another lyrca splint, as they should have all your details, so you probably wouldn't have to pay for the measuring, design and consultation stage.

    The NHS is great at providing what people need, yet sometimes it makes sense to go private, if that option is available, especially if it means you can achieve greater efficiency and not have to wait as long for appointments etc. I fully understand though that the luxury of going private is not available to everyone.

    I wish you the very best, and I hope you get the outcome you are looking for.

    Noah
  • StayceStayce Posts: 275Member Pioneering
    Hi Noah - That's great news about your appointment at RNOH. JAB is one of the two orthotic leads there. I see the other one Eileen. When I first started there I was under another orthotist who had undertaken a PhD in lycra splinting and CP. I learnt so much from him.

    If you are going to Stanmore - Do you drive? As if you don't and are going by public transport you can pick up a hospital based shuttle bus from Stanmore Underground Station that will take you to the hospital and through the grounds as the orthotic department is at the furthest possible point. There should be a timetable on the RNOH website

    Glad you were impressed with DMO. If you hear back from them before you go to RNOH you could take the info with you and see if you can get them on the NHS if they think it is a suitable option, as DMO have a contract with RNOH. Please do let me know how you get on with both RNOH and DMO.

    DMO do have some good postural products on offer. I too am working hard on my posture - Alexander Technique lessons have really helped me here (will start a separate post on that soon)

    I am interested in the DMO E-Step https://www.dmorthotics.com/medical/products/e-step/ Only been tested on couple of subjects so far, so early days.

    I have been following your recent threads on carbon fibre AFO - it sounds very exciting indeed. I should imagine carbon fibre would give you quite a springy step which would conserve energy, especially given carbon fibre is used in blades for paralympic sprinters. Keep us posted on this. What is Leeds Crispin Orthotics like? What made you choose them? Have you contacted Ottobock (Germany orientated firm but also global) they work with Carbon fibre AFOs

    http://professionals.ottobockus.com/cps/rde/xchg/ob_us_en/hs.xsl/3306.html

    We clearly do have similar interests here. Keep in touch

    Best wishes

    Stayce


  • StayceStayce Posts: 275Member Pioneering
    edited November 2015
    Hi Georgie - Welcome to the DMO club :) What I meant is call or email DMO and explain your current situation and ask them which NHS hospitals do they supply to in your area, stressing you wish to continue to receive these on the NHS then you can inform your GP/ consultant of potentially some of the best options for your continuity of care. Hope it all works out. Best wishes Stayce
  • NoahNoah Posts: 430Member Pioneering
    Hi Stayce.

    Thanks for your comments, all most helpful, including your tips for getting to the RNOH.

    I chose Crispin Orthotics as they are the only company in the UK that I'm aware of that make bespoke carbon fibre AFO's in house. I had the privilege of having a consultation with Mark Thuxter the owner and managing director a few weeks ago. So much work in progress!! I was extremely impressed with the scanning technology they are using to design, the AFO's, it certainly is a big step forward on the traditional plaster cast methods! He really knew his stuff, and the build quality was also a very high standard.

    My feet are such that 'off the shelf' or 'generic' products simply do not work, fit, or are effective in providing enough support.

    The e step product looks interesting, and I look forward to reading your post on Alexander Technique lessons and how this has helped you.

    Noah
  • StayceStayce Posts: 275Member Pioneering
    Hi Noah - I understand exactly what you mean. I can't wear "off the peg" items either. All my orthotics are custom made, even the DMO is not the generic dorsiflexion sock. In-house facilities are key for me too, I always need so many adjustments made at fittings. Good news is RNOH have in-house work room. Is Crispin Orthotics using CADCAM technology?
  • NoahNoah Posts: 430Member Pioneering
    edited November 2015
    Rather than trying to answer your question myself, I thought I would provide you with a couple of links http://www.crispinorthotics.com/carbon-fibre-orthotics-2/

    http://www.crispinorthotics.com/orthotics/products/quality-and-construction/

    Hopefully this helps,

    I guess AFO's made from carbon fibre, is not the right solution for everyone, and its about finding what works for an individual.

  • GeorgieGeorgie Posts: 31Member Listener
    Thank you Noah and Stayce for all your help. They are all really appreciated. I will be following up everything with the Young Adult Team in February, and with my GP. The Young Adult Team are providing me with new lyrca splints in February, so I will have a year or 2 to consult with my GP about the next way forward. However, I will be speaking to my GP sooner rather than later so that I know what my options are

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    Your welcome Georgie,

    I've had it explained to me recently by my gp that consultants, sometimes have better success when making referrals than gp 's do.

    Just thought I'd mention it as you may get a better outcome if your young adult team refer you to a specialist consultant.

    Maybe try and get referred to the RNOH.

    All the very best

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    That's a great idea. I will definitely ask them to refer me to a specialist consultant.

    Thank you again for all your help. With this information, I shouldn't have as many problems as other people have because I know what to ask for.

    Thank you again.

    Georgie
  • StayceStayce Posts: 275Member Pioneering
    edited November 2015
    Hi Noah - The construction of your carbon fibre AFO sounds amazing. They are using CADCAM tech. Hope you have the opportunity to see some of the production as the 3D modelling software is very impressive. Carbon fibre AFOs may not be the solution for everyone as you say, but I like to think striving for developments like this, as you are, will push the whole orthotic industry. I will be interested in your progress with this, keep us updated

    Hi Georgie - Noah is right sometimes consultants can cut through some of the "red tape" that GPs can't. Perhaps also ask the Young Adult Service where the majority of their 25+ patients get referred to ( they must collect some transition service statistics) Do let us know how you get on. Best of luck

    Thanks to both of you for a most interesting discussion

    Best wishes

    Stayce
  • NoahNoah Posts: 430Member Pioneering
    edited November 2015
    I was very impressed with the 3D modeling software that Mark at Crispin Orthotics used, while I was visiting. He was able to adjust the angle of my feet on the computer and it automatically adjusted all the different volume measurements. I understand the scanner and software combined, cost in the region of £40k!

    CAD/CAM should create a product that is right first time, without the chance of a plaster mould changing shape etc!!

    I have lost count of the number of times I have got all excited about an AFO fitting, waited ages for an appointment, taken time off work, to then get there, to find that something had gone wrong with the manufacturing process and it doesn't fit!

    Hopefully in the future all NHS orthotic departments will have access to the latest technology, to allow them to be far more efficient and get the design and manufacturing right, first time, thus reducing the number of visits that a patient needs to make.

    Noah

  • GeorgieGeorgie Posts: 31Member Listener
    Thank you Stayce and Noah for your comments. I will definitely see what the Young Adult Team say in regards to my next options when I see them in February.

    Thank you again to you both

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    Today is the day of my appointment at the RNOH. I'm very excited about it, got everything prepared - and I have read up as much as I could about JAB, he sounds like an incredible person.

    Thanks again for all your help guys, the detail you provided was excellent. I now know what colour to request if lycra splints are decided the right solution me!

    Kind regards


    Noah
  • StayceStayce Posts: 275Member Pioneering
    Hi Noah
    Wishing you the best of luck for today's appointment, hope it all goes well for you. Let us know how you get on. Stayce
  • GeorgieGeorgie Posts: 31Member Listener
    Hi Noah

    I hope your appointment goes well. I have blue lycra splints, and they work great for me. If you are able to have lycra splints it might be worth asking what colours they provide, and if a particular colour is better in the summer

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    edited December 2015
    Thank you - it was a very successful consultation. We are going to try some bespoke insoles along with lycra splints, and I have requested beige colour to try and keep my legs cool! :-)

    Thanks again for all your help and support guys, if it wasn't for this scope community discussion I wouldn't have known about lycra splints.


    Noah
  • StayceStayce Posts: 275Member Pioneering
    Hi Noah - That's great. It sounds like you had a good experience. I have the same combination bespoke neuro insoles and lycra splints and they work really well for me. I will be interested to hear your thoughts on the lycra splints, I went on about how great they felt for weeks :) When will you get your new orthotics? Best wishes Stayce
  • GeorgieGeorgie Posts: 31Member Listener
    I'm glad the consultion went well and that you're getting lycra splints. I hope they work really well for you. When do you get them?

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    Not until the first week of Feb. Maybe an earlier cancellation appointment will become available. I was very impressed with the orthotic department at the RNOH, first class.
  • StayceStayce Posts: 275Member Pioneering
    That's good, I'm glad you were impressed. Let us know how you get on. Best wishes Stayce
  • GeorgieGeorgie Posts: 31Member Listener
    Hopefully an earlier appointment will become available. It would be great to hear how you get on with your lycra splints
  • NoahNoah Posts: 430Member Pioneering
    Thanks again - will keep you posted. JAB was interested to hear your thoughts on how beige colour seems to keep legs cooler.

    You may of have already covered this, so apologies in advance, but JAB suggested that wearing them without soaks was most effective. Does that mean the lycra splints will need washing every night? I already struggle to keep athlete's foot at bay due to the plastic afo's getting very hot, and I take cleaning my feet very seriously as a preventive measure. Including drying them everyday with a hair dryer!
  • StayceStayce Posts: 275Member Pioneering
    edited December 2015
    I have had numerous colours beige, black and blue and red combination lycra splints. I have found the beige to be cooler in summer months. The dye process for the darker/ richer colour garments makes them a bit more dense /thicker fabric.

    I wear my lycra splint without socks, but I have a soft toe portion added so it is a complete sock (most lycra socks will normally end at metatarsal heads) This is something I suggested to Georgie to further reduce heat and eliminate extra bulk of another Sock over the top. Don't worry if you think this is something that you might want - they can easily get this added after you have tested it.

    The lycra splints are machine washable. I get away with washing them every two days. They dry pretty quickly, if leave them in airing cupboard over night they would be ready next morning.

    Hope this helps, any further questions just drop me a line. Happy to help

    Best wishes

    Stayce
  • GeorgieGeorgie Posts: 31Member Listener
    I've never worn beige lycra splints before, and I do have to wear a sock over my splints. I'm going to see if the Young Adult Team can get me beige lycra splints and ones where I don't have to wear a sock over them. Good luck with your splints when you get them. If you have anymore questions I'll do my best to answer them

    Georgie
  • samantha106samantha106 Posts: 3Member Listener
    hello I had splints and cast they never charged me
  • StayceStayce Posts: 275Member Pioneering
    Hi Samantha - welcome to the community. I hope you enjoy meeting people here. We are a friendly bunch :) As you will see from the rest of this discussion on lycra splints. These are a different type of splint that are available on the market which don't involve casting, instead they require intricate measurements and sometimes it is not always possible for everyone to get these on the NHS and go private, if they are able to. Hope this helps and welcome

    Best wishes
  • NoahNoah Posts: 430Member Pioneering
    Thanks so much for all your help guys, I will probably have a few more questions when I finally get the lycra splints in Feb. Although JAB very kindly suggested that he maybe able to post the lycra splints to me earlier to try! I've got to buy some new shoes my actual size, 8 instead of 10 before my appointment. Great timing being January sales :-)

    Welcome Samantha106 to the Scope community. What type of splints do you wear? Feel free to ask any questions and we will do our best.

    Enjoy the holiday season

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    That's great Noah. At least you can take advantage of the January sales.

    Welcome Samantha. If you have any questions, I'll do my best to answer them, as I'm sure the others on this forum will too. I hope you enjoy Christmas and New Year.

    Georgie
  • StayceStayce Posts: 275Member Pioneering
    That will be very exciting to go down in shoe size. Great that you can take advantage of the sales.

    Merry Christmas guys and happy holidays :)

    Best wishes
  • StayceStayce Posts: 275Member Pioneering
    edited March 2016
    Hi all

    Hope all well

    Noah - How are things with your lycra splints? How did you get on with your review?

    Georgie - Did you manage to get new lycra splints set up through an adult service?

    Best wishes

  • GeorgieGeorgie Posts: 31Member Listener
    Hi Stayce

    I haven't got any new lyrca splints yet, but if the Adult service haven't rang me to make an appointment by the end of next week I'm going to ring them and chase it up
  • StayceStayce Posts: 275Member Pioneering
    Hi Georgie - Hope you get them soon. Did you get referred somewhere new local to you?

    I pick up new ones myself tomorrow

    Best wishes
  • GeorgieGeorgie Posts: 31Member Listener
    No I haven't been referred anywhere else
  • StayceStayce Posts: 275Member Pioneering
    edited March 2016
    That's good must have made things a lot easier then, this time at least.

    Hope you get them soon

    Best wishes
  • GeorgieGeorgie Posts: 31Member Listener
    Thank you. I hope your new lyrca splints are OK
  • StayceStayce Posts: 275Member Pioneering
    Came across this really nice news story for anyone following this discussion on CP footballer and use of lycra splints

    https://www.dmorthotics.com/news/dmo-glove-assists-future-england-cp-football-star/
  • GeorgieGeorgie Posts: 31Member Listener
    That's a great article, and shows that anyone can take part in sport with or without a disability.
  • NoahNoah Posts: 430Member Pioneering
    Hi Stayce, 

    Sorry for taking an age to get back to you, I'm still getting use the new Forum layout, and life has been extremely busy recently.

    Yes my review at the RNOH was a success, unfortunately we couldn't get the lyrica splints to work with both my feet. So it has been decided to design some new AFO's which hopefully will be less bulky and allow more function. I'm really impressed with the team at the RNOH, so professional with a very 'can do attitude'. 

    Even tho the lyrica splints have not worked for me, It has not been a waste of time, as I have learnt how a compression garment can improve function and sensory feedback, and I'm hopefully we still maybe able to get them working with both feet in the future.

    In the mean time I have been looking for some regular lyrica compression socks that I could wear with my AFO's. Any suggestions on that front would be very welcome.

    Hope your keeping well, did you get a hands free assessment? Have things improved with your RSI? I would be most interested to know how you have got on.

    Georgie - Have you manged to make progress with you lyrica splints yet? I know how frustrating it can be to have to wait so long, my advice is keep emailing and calling the hospital and explain how important it is to you and how by not having them is effecting your quality of life. Try and build relationships with those that are in charge of making the appointments so they know exactly who you, and why you need that appointment so much, and they know you, not just your NHS number!

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    Hi Noah,

    I've not heard anything more about my lycra splints, and the Young Adult Team have discharged me as I'm now 25. I'm trying at the moment to find the right place to phone about getting new lycra splints, but am not having much luck. I need to also find out how much they will cost to have made.

    Georgie
  • StayceStayce Posts: 275Member Pioneering
    edited April 2016
    Hi Noah - It's a shame the lycra splints have not worked for you, they really don't work for everyone, but I agree with you if you don't try these things you miss out on learning key lessons about CP as a condition in terms of sensory feedback, increased function with tonal changes. 

    Perhaps you could use the lycra splints just @ home for few hours as part of physio regime to help with lowering tone?

    I wonder whether DMO could make you a thin Sock sleeve that you could wear in an AFO - worth asking @ RNOH or email DMO and enquire as I would think this would be quite a common request. 

    Is the main problem that you need more support than the DMO socks give you - if it is and you really want to be able to wear lycra splint I would have a look @ second skin (they make much sronger garments but they are extremely expensive)

    In terms of compression socks I will do some further research, I have a pair of 1000 mile compression socks for long haul flights from physio room which would do a  similar type job for you. http://www.physioroom.com/product/1000_Mile_Ultimate_Compression_Socks/2242/38252.html

    Georgie - Keep chasing them. May be worth getting in touch with patient liason service @ the hospital you were originally at - should be on their website. As in much earlier post  a DMO lycra Sock would roughly cost €300 privately.

    Hope this helps. Keep in touch, let us know how you get on.

    Best wishes
  • GeorgieGeorgie Posts: 31Member Listener
    Hi Stayce

    I've left a message with the physio I was with until I reached 25. I'm hoping he will get back to me early next week.  If he doesn't, I'll try him again on Wednesday. If I don't hear anything more after that I will try and get in touch with the hospital I was orignally with. I'm not in desperate need of new lycra splints just yet, but it would be good to know who I need to get in touch with when the time comes, and with what's happening in terms of me getting funding for them or having to pay myself privately.

    Noah, I'm really sorry the lycra splints didn't work for you. I hope you find the right garments to support you in the very near future.

    Georgie
  • NoahNoah Posts: 430Member Pioneering
    Stacye - I will defiantly do some research into second skin. we were only able to get the DM Orthotic lycra sock working with my left foot, even with ankle braces, insoles and extra straps we could not get enough lateral support for the right foot. 

    Georgie - Your GP should be able to advise you on how you can get a referral to your hospital orthotic department, they can probably refer you directly, although sometimes you have be refereed via an consultant. I would recommend the RNOH in London, I have experience of several hospital orthotic departments and RHOH is the best I have been to so far. Very high standard of care, and staff that are focused on trying to achieve the very best possible outcomes.    

    Noah
  • GeorgieGeorgie Posts: 31Member Listener
    That's great, thanks Noah. If the physio I had doesn't get back to me by the end of next week, I will certainly ring the doctors and get an appointment with my GP to try and get referred to the hospital.

    I'm sorry the lycra splints didn't work well on your right foot. I hope you manage to find something more suitable. I've never had lycra splints from second skin before, so I'm not sure how good they are.

    Georgie
  • StayceStayce Posts: 275Member Pioneering
    Noah - I have not worn second skin either but have done a fair bit of research for an article I am trying to get published and have been to a second skin demo and held garments definitely appear stronger - have a look http://www.secondskin.com.au/Content/Products/Dynamic-Splints/Lower-Limb-Splints/Foot-Splints. But as I say extremely expensive. RNOH don't have contract with second skin. 

    Georgie  - since you know DMO works for you, probably best see if you can get referred as Noah suggests unless your physio can help sort it out for you.

    Best wishes
  • GeorgieGeorgie Posts: 31Member Listener
    I'm definitely going to stay with DMO because their splints work really well for me. Hopefully my physio will be able to help with a referral.

    Georgie
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