Forum

FES problems

Yesterday I went to the NHNN in |Queen Square to be fitted for my FES. It seemed to work well, as it had done on my previous visit, where I had a ‘trial’ of the device.

So today I put it on as instructed. Off I went to the hairdresser for a haircut and colour. While there I went to the loo. And the wires seemed to get tangled up. Then when I went to pay there were more problems with something coming off and dragging on the ground.

When I got home I was so irritated that I took it off. The thing is that I know it would help but the wires absolutely drove me mad, and the sticky pads even more so - like some irritating childrens’ toy that sticks to everything else.

I have an appointment next week to report on it. I know I’ll have to try again before then, but honestly, the wretched wires…I know that some of you have given very positive reports on their FES and I know I’m being a wuss, but still…

I was just wondering whether anyone has experience of the Trulife Walkaide or Bioness L300G? I realise that these are private and probably very expensive. It’s just that the idea of a device without wires seems ideal.

Feeling fed-up!

Louise

It is surprising how quickly you get used to the set up and just takes a little patience, although I appreciate it may not feel like that right now. Hopefully, your physio will be able to advise on the options available.

You can get a wireless version of FES, which does away with the footswitch lead and even get a leg cuff, but you obviously need to establish that it works for you first before parting with cash.

http://odstockmedical.com/products/odfs®-pace-xl-kit

​http://odstockmedical.com/products/odfs®-leg-cuff

The Odstock wireless system does work. As does the Odstock wired system. And I’m sure all the other systems.

I second what Whammel has said, once you get used to whatever system they’ve set you up with, it gets easier. You just need to make sure you’ve got the electrodes in the right place, have everything plugged in right and then it’ll work. Give it some time. Maybe the therapist you saw set you up but didn’t make sure you were happy with how the set up is done?

Practice a bit more - use the book they’ve surely given you to make sure you understand how it works.

Then either phone the person you’ve seen at the National and explain what problems you’re having, or see what other wireless systems are available and try them out before you part with any money.

Sue

Hi Louise I know where you are coming from! I have recently upgraded to a dual FES so double the wires and electrode pads. I do get irritated with the device/wires particularly as it restricts me clothing wise. I have never liked wearing trousers and skirts and dresses are now impossible. However I would not get very far without it and now rely on the device indoors most of the time. I have found that it is best to put on the wires/electrodes when I first get up as it is then ready to go if I need it. I also mark my leg with a felt tip pen so if in a hurry I can apply electrodes quickly without trying to work out the best position. I am really grateful for FES but find it annoying that I now depend on this machine! Sue x

I know what you mean about the wires and the electrodes I was exactly the same when I first started (only had mine for a couple of months now). I agree with Sue, mine goes on in the morning and I also mark my leg with a water proof pen - constantly look as though I have the black plague starting! I use a tubular support bandage on my calf to keep everything in place, I tried it without because of the hot weather and found the electrodes got all curled up when I pulled my trousers up. When I remove the electrodes I always wet my fingers so they don’t get stuck to my hands. If you find the electrodes are irritating your skin ask for the ones for sensitive skin. My physio suggested that I get a calf cuff and use shorter wires if I wanted to wear a skirt, still has to be a long skirt but makes it less bulky around your waist, when I wear trousers I attach it to my back pocket or waistband so it’s out of the way. When I go to the loo I often unplug the box and take it off completely, hook my fingers round the wires and my waistband and then pull my trousers down and do the same when pulling my trousers back up. It’s a brilliant bit of kit and now I wouldn’t be without it but a wireless version would be even better. Keep trying you will get used to it.

I used to mark my skin but eventually got so I can bung them in the right place without guidance. I have tried to stick it on the other leg when I was having a bit of trouble with that foot, but utterly failed to hit the right spot.

One teensy weensy warning, if you hook your FES box on your waistband of trousers, especially jogging bottoms, watch out when going to the loo. The box sometimes jumps off and once actually did a swan dive into the loo. I had to phone Odstock and confess. Then send it back to them for ‘decontamination’ and repair.

Very red faced, you’d have thought I was the only person it had ever happened to, they all sounded so surprised. But surely it’s happened to others?

Sue

Yep, know what you mean Sue but just managed to catch mine before it went swimming, you have to watch the wires don’t dangle as well if you take the FES box off - have just saved mine on numerous occasions!

I have found it depends on the type of waist band as to how secure the box is. If out and about I sometimes use a waist money belt which is not bulky. I can understand just how easy it would be to drop down the loo. I tend to unclip mine. I have thought a small bulldog clip might be handy to clip wires together if I detach box but haven’t tried it. Sue x

Thanks everyone for your advice. I spoke to a very helpful physio from the Walking Dept at the hospital today and she said that I should try again if possible and definitely come for my appointment next week so that my own physio can advise. She said lots of people have problems with the wires. Mine is indeed a dual channel one by the way.

As all the NHS FES devices are supplied by Odstock I think, I called them in Salisbury. All their devices have a wires but the very helpful man there said that there is something called an OML LINQ which enables you to get rid of the wire running along the leg and clips on to your shoe. That seems to be their highest end arrangement. And of course another problem is how to wear them with tights if wearing a dress or skirt and I found myself saying this to him; there was an embarrassing pause while I realise what I’d said!

So I’ll grit my teeth and try again! Funnily enough I was in the car with my husband passing a branch of W.H. Smith and they had a sign outside saying ‘Slime!’’. I then remembered having this for my kids when they were little and I realised that this was what the squidgy electrodes reminded me of!

You have to see the funny side of things with MS…

Hi Lou

When you say yours is a dual channel FES, do you mean that the electrodes are stimulating more than one nerve, ie both legs, or your hip and below your knee? Or do you just mean that you have two electrodes?

The reason I’m asking is that the Odstock Pace device can’t be used wirelessly if it’s a dual channel device (two sets of 2 electrodes). So their OML LINQ won’t work.

Whereas if you’re a brand new user (and I think you are) you might not understand the difference between single channel and dual channel. A single channel device still has two electrodes.

(I really don’t mean to be patronising if you do have the right terminology for your unit!)

Sue

1 Like

Hi Lou I use a dual control FES. The two lower electrodes are quite squidgy/sticky(blue). The two upper electrodes that I use on my thigh are round circular(grey) and have a different adhesive so they are not so problematic, once on they adhere really well without sticking to clothing. Sue x

1 Like

I was assessed for and tried an FES at the NHNN and am due to go back in July to be fitted. Does anyone have any suggestions regarding questions to ask? I am very interested in paying the extra for the cuff and the LINQ, does anyone have anyone experience of the wireless set up? With the summer coming up it all looks very doable but wonder how the cuff can be worn with tights in the winter or would I have to do something different? How easy is it to switch from one set of footwear to another? I want to make the most of my appointment so any information/advice gratefully received.

Hi ER, I have recently bought 2 Pace machines ( Oxfordshire does not fund FES!!) as I have drop foot on both legs. You certainly have options to discuss with them. I attach my machines via a tubular bandage to my leg and wear them at my knee area. I then have small leads from the electrodes and a small lead to the foot switch. I felt for me that the cuff was too complicated but that may only be because I am used putting the electrodes onto my leg. the only down side is that I either wear wide leg trousers or long skirts.My friend has a cuff which works well for her. It is an exciting time for you discussing all the options. FES keeps me walking, stops me falling and I am delighted with it. xx

1 Like

Hello ER, I have not tried the cuff although I did try the strap that you attach the Pace to but couldn’t get on with it at all. When I first got mine I attached the machine to my waistband with the long wires, can be a bit of a nightmare. At my last FES appointment the physio told me about another one of her ladies that used the short wires and tucked the box in her sock! Ideal for me as I normally wear trousers but I expect you can get the same outcome with a tubigrip for the summer. Made so much difference I was amazed. Good luck!

1 Like

Hi ER I have never tried the cuff but I do use the wireless linq. For me it really helped , as whilst using the wired foot switch every time I dragged my stupid foot over a door sill the wire would be disconnected and I had the perilous job of bending down to reconnect. I think it uses a bit more Pace battery life and you also need batteries for the Linq itself, but in my opinion well worth it.

Good luck

mick

1 Like

Thank you everyone, so positive and so many options. FES users appear to be quite ingenious.