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FES Pickle

Hi All,

Advice please…

I went for a FES assessment this evening - very scared as I had no idea as to whether it would stimulate the nerve or whether I had too much damage.

Thank goodness - the nerves were not too damaged and the FES got the dorsifexion going. However, there is too much eversion and my foot kicked out way too much despite the wonderful neuro physio doing her best to make tweaks and adjustments.

Even more marvellous, they have loaned me the FES until Thurs morning as I felt I could not proceed to purchase after 30 mins. I do not struggle too much to walk around a room, sometimes with a crutch and sometimes without - so walking around the room with a FES was not a great measure for me as to its success. What I seek - is distance, being able to walk at least 100 feet and in time, dare I say it, half a mile without the dreaded foot fatigue and drag.

Is this too ambitious? Is this possible? Has anyone been able to achieve this with a FES (in time) with a similar starting point to me (i.e. only being able to walk approx 15 foot before the foot fatigue and drag)?

Realistically, if it cannot assist with distance, I cannot afford to take the loan to purchase it - so, please -any advice, guidance or comments would be gladly received.

Now - the other thing, when I tried it, at home, just - my foot was just so tired and the reaction to it was poor - could not heel strike and toe scuffing galore. The physio warned me, that like any orthosis, the use time needs to be built up slowly as its working the nerves and they will fatigue quickly. I am worried as I have to return it on Thurs morning, so I do not really have the time to work up the use slowly.

I also cannot seem to adapt to the exaggerated eversion. Its an Oddstock MyGait.

Hope someone can help :slight_smile:

Hi Rosey

If you can put up with the wires down your leg, go for the “Pace” unit - I think it is the cheapest unit Odstock Medical offer.
When I got mine (Mar 2012) they set it up in “training mode” which gave me 15 minutes of muscle activation twice a day to build a bit of strength back into the muscle.

The basic idea of the sideways flick before the toe lifts is to minimise the possibility of the toe or foot dragging. I assume that you are in one of the areas where funding is not available. I am lucky in that there was money available in Wiltshire when I was referred to Odstock - I am down there in 2 weeks for my annual check.

What you should think about is not how far you can walk now, but how far you will be able to walk in 2, 3, 4, years time. When i got it first, I was walking with one stick; then it was with two, then with a 3-wheel rollator. Prior to a spell in hospital 9 months back, I could manage 5-600 metres with the rollator. That has dropped off, and I hope that continual physio will bring most of it back. Now, without my FES I would not be able to make it out to the car, and I can only just do without it in the house. It is not just about the distance, it is about moving in safety.

If you want more, PM me.

Geoff

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Hi Rosey,

I agree with Dr G, the Odstock Pace is the cheapest unit. When you are self funding the cost should be £300 for each appointment, with 2 appointments at first, then another 6 weeks later, one at 3 months, one 6 months after that and then annually. This would mean in the first year you’d pay £1500, but after that £300 per year. This includes all the wires, electrodes etc, but not the wireless foot insert, which costs about another £300. So it’s an expensive thing to do initially, and you need to be sure it’ll do the job you want it for.

Unfortunately, I’ve never managed to extend the range I walk, even with the FES. I only use it at home together with a walker for about 10 metres a time, a few times a day. The rest of the time I use a wheelchair. But then I only got it after being a 100% wheelchair user for a couple of years, and that was following a disastrous relapse so my muscles were all but useless. I spent 18 months trying to get the CCG to fund it on the misguided advice from a physiotherapist. (The CCG had a policy of never paying for FES) and that time added to my weakened muscles. So I’ve only had it for just over a year and have never been able to get either my leg muscles or my core strong enough to increase the distance. Every time I’ve tried I’ve ended up overdoing it (even a few extra feet leads to total exhaustion) and being unable to walk at all the next day.

Having said that, I still persevere with the FES; now I’ve paid for the first year, it’s essentially £25 per month and I reckon it’s worth that just to be able to walk a tiny bit in the house, simply for the value of the exercise. If I’d known at the start I was only going to be able to do that I might not have done it, but I’m glad I did.

If you can walk a little bit without an orthotic or FES, then I’m sure you’ll be able to extend the distance and speed much better than me, after all you’re starting in a better place. And with regard to the extra eversion, you may have to play with the placement of the electrodes a bit. The important thing is that the dorsiflexion worked with the electrodes, fine tuning the placement is something you’ll be able to do quite easily. If I were you, see if you can keep the borrowed unit for a few days longer. Two days isn’t really long enough to make a decision to spend such a lot of money, especially if you need a loan to do it. Having said that, if two days is all you’ve got, and can manage to get the placement of the electrodes right, then it’s probably worth it. Lots of people find it changes their life and if your muscles are in a better place than mine to start with, there’s no reason why you won’t be one of those people.

if the problem is too much eversion, then move the top electrode in (towards your other leg), try to test it again, then try moving the bottom one. If that doesn’t work, try moving them up a bit (or down a bit!). Some people even find that swapping the electrode leads over (ie. put the red one at the top electrode and the black at the bottom) works better for them. It’s all a bit trial and error, but after a few weeks, it is easy.

Good luck with it, let us know how you’re getting on and if we can help at all.

Sue

Rosey,

In my case FES has been great. It significantly reduces the effort to walk, therefore it increases my range and the reduced chance of falling has increased my confidence. Whilst I am sure no two cases are the same I would say that in my case it was well worth the cost. Good luck

Mick

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I think The comment no two cases are the same is extremely valid. I have used a SAFO for 10 years and for me the SAFO has been tremendous as counteracting drop foot. I’ve been assessed for a FES on two different occasions and both times unfortunately the FES did nothing for me. The SAFO is £750 or so and has no wires to play with.

derek

Hi, just want to say something…I know some authorities give the FES for free! It annoys me the way some pay and some dont and to be honest I think the amount Sue describes is extortionate!

There!

Pollx

ps I do hope it helps, but wish there was a way to get it cheaper or for nowt…yeh, I`m a Yorkshire lass…

When I got mine, it was £1650 for year one (test appointment, setup appointment, 3 monthly check, 6 monthly check - and the loan of the Pace FES unit). Yes, Odstock Medical retain ownership of the unit.

Then it goes over to annual checkups at £300 a time, but with all consumables included. While the PCT (as it was then) paid the bills, they would only pay for annual checkups.

The problem with the FES is a loophole in the rules. It all hangs on how the FES is classified, so while a consultant may say that it is essential for you, the PCTs (or sucessor CCGs) do not automatically have to pay. Interesting when you consider that Odstock Medical Ltd are an NHS company.

I think that anyone who needs one, and has been refused funding should gather support from the relevant health professionals and challenge the CCG decision.

Geoff

Probably too late, but this document is helpful when trying to avoid too much eversion (a little is good for safe weight bearing)and has a few ideas worth trying. The real expertise is based in Salisbury Hospital (www.odstockmedical.com) and worth a visit if it’s in range.

Indeed,

I managed to get the name of an NHS budget manager and she helped me put a business case together to show how much NHS funding could be saved if less people were housebound or attending A&E due to falls that would be avoided when FES is used. I think I got funding because they worked out it was the only way I would shut up.

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I’m going for a FES assessment in February and my NHS physio is coming along too. I didn’t realise some people had to pay for this! I’ll be much more appreciative of this now especially if it works. It’s so wrong though that some pay for this.

In actual fact, what is even worse than not being able to get FES on the NHS is that my physio was so gung ho about applying to the CCG for funding that she made me think it was possible to get it funded. I failed to realise until more than a year of going for the assessment, getting all kinds of evidence for the application to the CCG, being turned down and not even being told I’d been turned down (that still makes me so angry) for three months. It was not until I’d phoned the CCG to check in the progress of the application that they told me a decision had been made and sent to my GP. They wouldn’t even tell me the result of the application!! I discovered that my CCG have a policy of only funding FES if the circumstances of the individual patient are ‘extraordinary’! As everyone with MS is extraordinary, in fact nobody with MS can get it funded in this CCG area.

Eventually I phoned Odstock and checked what it would cost to self fund. Instead of the £3000 the physio had told me it would cost (I’m so glad she has now retired!) I discovered it was half that. Yes, still a lot of money but ultimately worth it.

But, the 12 to 18 months of the application followed by a wait for an appointment to Odstock, following the year it took to find out about it, during which time I was trying out different orthotic devices, made my disability so much worse. My muscles got weaker and weaker as I tried one thing after another. I now have a major problem with my right hip as well as foot-drop. I have absolutely useless core muscles as I virtually didn’t walk for 2 years. I wasn’t even told about FES when I was first diagnosed with foot-drop, I was just referred to the orthotics department at the hospital where I was given a 15 minute appointment and a Neurodin orthotic (if you have foot drop and are offered one of these, I suggest you don’t bother).

It’s a lot of money to spend, but I really wish I’d been told about FES 4 plus years ago when my foot-drop emerged, given the information that a) my foot-drop was likely to be permanent, b) that FES was the best solution, c) that I wouldn’t get FES funded by the NHS and d) the correct cost of it. I would have gone ahead and paid for it about 3 and a half years ago. Chances are, I would be able to walk a little bit more than the 5-10 metres I was walk now, with the FES and a walker.

Sue

Hi All,

Thanks for the feedback and your experiences. They really are quite varied.

I gave the loaned FES back on Thursday morning and I’m devastated. Devastated because I really thought it would be the answer to being able to gain some element of freedom & independence back but alas…no.

The wonderful neuro physio place did their best to stop the over eversion but when I had it for the 48 hours, I just could not work with it. My bad & good leg just could not form a comfortable walking stride with it despite numerous attempts and plenty of rests inbetween. My legs just got so tired. My walking to way more effort and was clumsy and very unatural. I walk better with a foot up and crutch. I did give me distance, I can walk for around 45 - 60 seconds without resting with a crutch and with the FES, I could do 4 minutes with rests. But it was hard.

After the first assessment, over 9 days ago, my foot just could not lift up after the 2 hour session at all whereas before, I was able to do this until the foot fatigue would set in.

I discussed this with the neruo physio and we both agreed this was due to the first session awakening and straining muscles that have not been active for over 18 months so,naturally, there would be some strain. I agree.

I don’t know whether it’s a case of really having time to play around with it and get used to it but not many places allow that and it was extremely generous of the physio to loan me their assessment unit. How can anyone make the investment based on a couple of sessions or even a 48hour loan??? The Actigait will cost £5,200 ex VAT but would include the fitting session, and 3 review sessions.

I appreciate the comments re wired devices etc and I will be contacting them directly but I am wondering if a FES it right for me at all. I also think I still have the botox (13 weeks) which may be working against things. The botox was administered to my calf, 8 injections and has been a complete fail and set me back even more. I walked so much better before it. So, it may be worth trying the FES (wired/unwired) in around a month.

One good thing from the FES was that after taking it off each time, it actually warmed up my constantly frozen foot and ankle.

I hate MS and what it takes away. Having trouble coming to terms with it all. Just so tired of not being able to go anywhere myself, not even being able to take public transport, meet friends for coffee in town and getting stuck on a hotel bath over Christmas just about did me in. I guess I was a little stupid fantasising that the FES would be the answer. I had researched them for over a year and neuro/GP was so against it, hence going for a private assessment.

Arrrrgggghhhhhhhh! Now what?? Guess it’s time to investigate the SAFO. To top it all off, having managed to stop crying since Thursday, getting a cold, I had a wonderful dream last night where I was walking (in heels) and then running down a street.

PS - sorry I do appreciate and know that some folk are in a way worse position than me and I am just feeling sorry for myself (which I do not often do). I am lucky that I have the movement and some ability to walk and for that I am grateful but it takes time to come to terms with the things that have been taken away and it scares the everything out of me knowing that things could potentially get a lot worse.

Rosey,

Iam so sorry that this has not worked out for you. This is very sad, I do hope that within your network of friends, family and medical professionals someone can help find a way forward for you.

Mick

Whilst feeling sorry for myself is not always the best course of action it can be a valid response to crappy circumstances.

Rosey,

I really hope that the SAFO does for you what it’s done for me. As I mentioned, twice I tried the FES (about 5 years between the two tests) and both times the FES did nothing for me at all. The first test wasn’t too disappointing as beforehand the physio said “let’s try it and see”. Just before the second test, the physio was a lot more upbeat and reckoned the FES would definitely help me. She was surprised and disappointed that it didn’t. I was just disappointed.

i got my first SAFO in 2007 and before then I couldn’t walk for 50 yards without tripping. The SAFO worked wonders for me and still does. I hope it does the same for you.

derek

l waited 2yrs to get an assessment for a FES - via nhs. This was at the Rehabilitation Hospital in B/ham. The physio who l saw - was very good - and she explained it all so well - and took lots of time and several appointments until she was satisfied that l was getting the best out of it - and had learnt how to use it.

She started me on the exercise mode for a month or more. Just a few minutes everyday - to get the muscles working but not over-doing it. And learning exactly where to put the pads/electrodes is important - just slightly out and it sends my foot outwards. This is of course the older type Odstock - not the wire free one. When l was assessed for one of the cuff types it did not work on me. And l paid privately to see someone who was supposed to be a ‘specialist’. The nhs lady was much more knowledgable. l

l do not use it all the time - as l do find it a bit of a fiddle to set up. l do have a SAFO - and l find it a big help. ln fact l have thought of trying both together.

Grrrrring…the amounts some of you have/are paying is a disgrace!!! Talk about disability being expensive and then they have the chuffin nerve to make us justify our DLA/PIP!!

Grrrr inchuffindeed!!!

Pollx