Hi all, further to my previous post about refusal of funding for FES, I’ve now been advised that an appeal to the CCG or a reapplication will fail. (Advice comes from rehab neurologist as well as Neuro physiotherapist.) it seems that until NICE change the category of FES technology to make it impossible for the CCG to refuse, it will be refused as it’s impossible to demonstrate exceptionality. So my options are now quite limited. I’ve been thinking about scraping together the money to buy an FES unit. But so far I’m still not 100% certain it would work as I would need a 2 channel machine and so far I’ve only tried a single channel (which is a slight improvement but doesn’t add much in terms of distance and speed). My problem is that in addition to the foot drop, I have a weak gluteus, so the signal to pick up the knee is lacking as well as the signal to pick up the foot. This is the reason why AFOs don’t work very effectively for me. Does anyone use a 2 channel FES unit to stimulate either the gluteus or the quadriceps in addition to dropped foot? Or has anyone tried this? I’m especially bothered by the need to place electrodes in the correct places on the gluteus. How does one properly do this? Even if I had help from my husband, i have to say that my behind is not the smallest (it’s not absolutely immense but still…). I don’t especially want to start laying money out if the solution is just not very effective. As I’ve been struggling to walk at all for the last 2 years my muscles are now fairly pathetic so I’m not starting from a very good place. I just don’t know whether I should start accepting the fact that the miniscule amount of walking I now do is it! Thanks Sue
Hi Sue,
I can only help you a little as I have a dual lead FES but had dual channel so I could use it for both legs. I had to buy it myself as my health trust would not fund it.
The FES unit was actually much less expensive than the single channel. I have been using the FES for over 2 years now sometimes on both legs but always on my worst leg. It has been so helpful, I would not be able to continue working without it.
I also have just bought an orthotic sock and orthotic pair of shorts.The shorts stabolise my hips whilst the sock helps the drop foot. My walking has been helped enormously by this although I can only afford 1 of each at the moment.
I hope someone can help with advise about dual channel for the different muscle groups.
Best wishes,
Janjan
Hi, I have a two channel machine. I think it would be possible to stimulate the dropped foot and the gluteus but you would need the two channels to do that. Is one leg ok and you just need to stimulate the foot and gluteus on the other leg or do you need to do them on both legs. If you need help on both legs then you would need two two channel stimulators. I don’t think the same cable would be able to make a circuit to stimulate both areas in one go. As for picking up the knee, you can adjust the electrodes to try to lift the knee and the drop foot as well as possible in one go. I have mine doing this, it takes a bit of jiggery poggerty to get it right but I have mine set to lift the foot and knee as well as is possible for me. My walking is still very poor but the fes means I can get about my house and office on my feet. I fund my fes myself but you don’t actually buy the unit, you need annual check ups and the unit is hired from them. As long as you have the annual check ups they will give you bits and pieces for the fes and fix it if it breaks, but if you stop having the check ups they will discharge you and ask for the unit back, I suppose you could not return it but if it broke down that would be you. It costs about £300 for an annual check up. The cost of the appointment for set up should be bout £300 too but you’ll probably need more frequent appointments in the first year so about £300 every appointment. Cheryl:-)
Hi , I too have drop foot and trouble bending knee due to spasticity and would need a dual stimulator. Do FES work with spasticity ?
Has anyone heard of the StimUStep, were they place electrodes under the skin at the exact nerve points to stop you fiddleing with pads etc ?
JanJan - were did you get orthotic socks and shorts ?
I am currently looking at slendertone to exercise muscles .
Moyna xxx
Hi Moyna
If you Google orthotic garments it is about 4th down begins with a D.
There are disadvantages to wearing them as they are meant to be tight and need to be hand washed every 1 or 2 days. But the difference is amazing , I wear them when I have more walking to do and actually look more normal when walking although I still need a crutch or walker. Also for vanity when I would like to wear a skirt.
I have never had a private message but do private message me if you would like any further info.
Best wishes
Janjan
Thanks all for replying. My drop-foot and iffy hip/knee are the same leg so I would need a unit to work on that leg only. The other leg has it’s own little problems! FES doesn’t do anything to help spasticity but it’s not a bar to using it Moyna. It’s interesting to hear about stimustep but somehow I think we’d never manage to get that funded on the NHS! Cheryl, the way your FES is funded is news to me. Which one have you got? I’ve been to Odstock and have had a single channel unit from there on loan from my physios (which I have to give back soon). I thought they only sell the equipment plus charge for appointments. Janjan, I had a try out of some orthotic shorts to support my hip but they were a nightmare for me to get into. My balance is quite bad so it took some time and a lot of effort. I decided they weren’t for me as I couldn’t imagine how I’d go to the loo! I’m impressed that they work for you though. Sue
Hi Sue, as far as I understand it and I have used fes for many years now, they don’t sell you the equipment, they do charge for appointments but the charge for the appointment also includes bits and pieces for the fes and fixing it If it breaks down. I suppose you could not go to appointments but then if the fes broke down they wouldn’t fix it so you’d be stuck until you went to an appointment again. I use mine all the time and needing it repaired or needing a new bit for it is not an uncommon occurrence. You’ll need to factor in this cost because I’m afraid it’s not just a case of buying one. However, if you want to just use two channels on one leg, then that should be do able. I use two channels, one on each leg. Cheryl:-)
Hi,
I have just got a dual channel FES. I had a single channel FES since mid December and it has just been upgraded.
When I started with a single channel FES I suffered from chronic muscle ache in my back. This was because I had not used the muscles for many years cos I used to use a MuSmate. I have just converted to a two channel one and the same again. I have foot drop and leg drop.
I got my FES from Queen Sq in London. I am based in Herts but my consultant is at the Royal London hospital. I happened to meet a Queen Sq consultant who referred me for a FES It is loaned to me, not too sure how the funding works. I get a certain quantity of free equipment, wires, patches etc each year.
It does take a while to get used to, learn where to put the electrodes, the wires and how the body reacts to the FES changes during the day. Fatigue/tiredness affect its effectiveness
FES has made a huge difference to my life and walking. I’ve stopped falling over, my legs are moving the way they were designed to move, I feel better and look less stressed.
Good luck and take a look at the FES articles on my website,
Patrick
Hi Patrick
i never did get a dual channel FES unit. I’ve self funded a single channel from Odstock since last summer. I can only use it to do a little bit of walking round the house as I have a whole load of other problems. I am using it really just to try & stay as mobile as I am (which isn’t much!). The dual channel proved too difficult to place electrodes which is why I’ve had to make do with just help lifting the toes for a small amount of indoor use. Good luck with the dual channel.
Sue
Moyna, l have an old Slendertone machine - given to me by a neighbour. A physio showed me how to get the muscles working that lift the foot and bring the toes forward. lt takes a lot of research to see what works best for you. But, lt is amazing to see - what was a useless leg - no movement - start flexing and moving. And of course, it is working the nerves/muscles and getting the brain to remember what it should be doing.
The pads of the Slendertone need dampening first - and as they are quite big - they do cover a reasonable area. Good also for lower back/tum/bum as well. l think if you can get one of these to ‘lift’ your drop foot and work knee etc - it will give you a good idea how a FES works. Use just for a few minutes - gradually increase usage. lt amazing how you can get your brain to remember what it is supposed to be doing. Even an ice-cube placed at the side of the knee - experiment until you find the right place - will make the muscles move.
l went along to our local college where they teach Sports/Fitness studies. Originally, l went for deep muscle massage - and the students were interested in why my leg did not move - and they tried different tecniques.
Hi Spacejacket,
I have the slendertone and it is good. I have an appointment to go to Salisbury in May for FES and I cant wait !
Moyna xxx
My doctor wrote to odstock referring me for a dual channel FES and I’ve not heard anything since… thanks for reminding me
Sonia x
My GP referred me to Selly Oak hospital in B/ham - for assessment for a FES - 3yrs later still waiting.