Forum

FES did you have pr4oblems

Hello,

I had an FES supplied by the Neurological Team in Queen Sq, London and I have now had it for a couple of weeks.

Its wonderful, able to walk more naturally after using a MuSmate for several years and an Ankle-Foot Orthosis fo 15 months. At the moment it allows me to lift the front of my foot. Later on I will have a second channel because I also have leg drop.

All fine and dandy but there are a couple of things that frustrate the hell out of me. The wire that goes to the heel of the shoe is almost too short and the unit used to join the wires together is not terribly good at keeping the wires together.

Another problem has been finding the right position to place the electrodes on the area just below the knee. It all looked so easy when it was done for the first time. I drew little squares around the electrodes and pictures taken with my phone. This morning it took me over half an hour to get theelectrodes set into the correct position. I knew it was adjacent to a bony knuckle on my knee. Now that I have found the correct place a photo of the electrodes with my finger of the bony knuckle.

Don’t get me wrong, I would not want to be without it. A little bit more thought in the design and setup would be a very good idea, time well sent.

Does anyone else have a FES and how do they find it?

Patrick

I am 6’3" and don’t have the slightest problem with my footswitch lead, so perhaps you need a longer one? A lead coupler should make the join more secure.

You could always mark the electrode positions with a tattoo.

http://www.odstockmedical.com/products/footswitch-lead-coupler

http://www.odstockmedical.com/products/footswitch-leads

At first I did what whammel has hinted at - I drew round the electrodes with a fine-point marker. Once you have the top one correctly placed. the lower on goes with it’s back edge lined up with the front edge of the upper one, and about 3 1/2 finger widths below the upper.

The only problems I have had with the heel-switch lead have been with it working round under my thigh. A bit of Micropore tape just above the knee solves this one.

The one thing that you must do is to test your setup everyday - you might think that you have it right, and then one day, oops.

It really is the only thing that enables me to go out at all.

Geoff

Hi,

I have not had time to look at the Odstock site, I will register and check it out.

I have used the FES every day. No way do I want to return to the MuSmate and afo.Taken photos of the electrode positions in relation to a bone on my knee that I am indicating with a finger. I hope this idea works.

Talk soon,

Patrick

Hi Patrick,

Going for FES is one of my goals for 2015. Unfortunately it is not available to me in N.Ireland. I have heard that some get the elctrode positions tatooed on. I reakon that if I go to England to get it done I might as well fo the whole hog and get the electrode planted in. This procedure is called StimUstep. I have heard the difference is like rolls royce versus ford fiesta !

I also think that I might have a touch of leg drop too and was interested when you mentioned that too. Basically I have flexor weakness, peroneal nerve (shins) and hamstring weakness. Also I have spasticity in calf muscles and quadraceps. Apparently if there is weakness the opposing muscles develop spasticity - this is the bodies way of trying to compensate.

I am always looking at net for solutions to ny drop foot/leg. I found this site and you should look at the girl with MS running when her foot drop is really bad.

http://dynamicbracingsolutions.net

Moyna xxx

Hello Moyna,

I assume you have MS. I have looked at the video, very impressive but would advise caution. MS destroys the myelin sheath so a message cannot pass up or down the nerve The FES stimulates the muscle to contract and so overcome foot drop and legdrop. This enables walking and it becomes a lot easier.

The bad news, Proprioceptors in the joints create messaes that are sent back up to the brain so that it knows where the leg and foot are relative to the body and the ground. If you have MS then the chances are that the message is not getting back up to the brain. As a result you get balance problems.

My consultants have said that walking will be easier but no one has ever suggested that my balance will return. Consequently my days of standing on one leg or running are behind me.

Baclofen, Gabapentin and Detrusitol will reduce the cramping/spasms and also the restless legs.

FES is not available in many places in England, I am lucky to be living close to Queen Sq in London.

Good luck

Patrick

Hi again Patrick, thanks for your reply.

Doctors dont really know what is wrong with me. I have a cervical lesion which I believe appeared with a neurological attack. I recovered well after it but a year later foot drop started to appear then problems started to develop further up the leg. I have not had another attack and as my 2 lumbar punctures are negative the neuro says it cant be MS. He does not believe someone can have MS with a negative lumbar puncture, yet on this site some people have MS with a negative LP. So I remain confused. The theory is that it is due to radiation I had 25 years ago!

To me it is like SPMS after one and only relapse!

Another foot drop thing is the elevate foot drop brace which I would like to try

Moyna xxx

Hello Moyna,

I’m a bit lost for words. Foot drop ain’t good news, Sytimustep looks good. Suggest you contact Odstock maybe you’ll need a referral

Patrick

Hi Patrick

I’m over the moon with my FES but agree finding the correct positions initially became a little hit and miss, but over time it does get a whole lot easier. If you’re finding that the connector for the foot switch lead comes apart, try creating a small loop in one part and pass the other through the eye and back over before connecting. I also found placing the switch inside my sock a bit easier.

I was very fortunate to have been “loaned” a device through my local MS Therapy Centre whilst waiting for a funding application to be approved, once it had been I had a second piece of good fortune when my family assisted with the cost to upgrade the standard Pace to the XL, which provides a wire less foot switch, and Odstock’s relatively new leg cuff. All this was collected in mid December and it makes it so much easier to wear as the pads are fixed with Velcro to the cuff, have a look here http://www.odstockmedical.com/products/odfs-leg-cuff

Best of luck

Paul

Hello Paul,

I found some useful info on the Odstock website. Google “Electrode Position Revision” and “Paul Taylor” It removes some of the luck in positioning the electrodes. I agree it is a wonderful device. Talk about improving quality of life.

Hoping to get dual channel cos I have leg drop as well as foot drop. I’m going to get a longer wire to go from actual FES to the heel wire. I use surgical type type tape near the connection, simple solution.

It is much better than a MuSmate and AFO ortosis.

​Happy new year,

Patrick

Hi Patrick , will the second channel activate your hamstrings or quadraceps ?

I cant wait to get the ball rolling on this given your positive reviews.

Thanks

Moyna xxx

Hello Moyna,

I have no idea what the second channel will activate. I cannot lift my left eg when I am sitting down or standing up so imagine its the quadrceps but don’t quote me on that.

The FES really has made walking so much easier and better. Friends comment on how I am now walking without needing to hoick my leg up using my hip. For the first few days muscles on the LHS of my back in the hip to waiste aea would really ache in the evening and at night but OK in the morning. It wore off after a week.

The MuSmate and AFO are good but this is something else. Find a way but be warned it might not be what you need. It does not work for everyone, at least that is what I’m told.

Patrick

Hi Patrick

Hope you don’t mind me asking. You mention “leg drop” I can’t lift My leg in the sitting position either. Thought it was all part of the same thing??

Please can you give Me a little more info.

L x

Hi Linda,

Foot drop is when you cannot lift foot, usually the toes but assume it can happen to the heel as well.

Leg drop is when you cannot lift the leg from the hip. So leg cannot be lifted to climb stairs or lift it when sitting in a chair

For more and better information take a look on the MS Trust website

Hope that helps,

Patrick

aid4disabled

Hi Patrick,

do you have any spasticty. I have it in my calve muscles and take baclofen. I was wondering if that would effect the benefit of the FES.

Thanks

Moyna xxx

Hi,

Yes I have spasticity, restless legs and spasms but not too serious I was weaned off Baclofen 1 * 10 mg in morning and when I go to bed and take only one * 300mg Gabapentin at night. Also take an anti spasm drug at night called Tizanadine. The problem with Baclofen is its half life, it is only 4 hours, Tizanadine is 8 so less lasts longer.

The FES consultant insisted I stop the Bacolfen totally and Gabapentin during the day

Cheers,

Patrick

How interesting …
The people at Odstock have never tried to stop my Gabapentin - and that is 3 x 300mg, three times a day.
Luckily, my restless leg (the one with the dropped foot), is very intermittent, and as yet I am not on medication for it.

Geoff

Hi Patrick, my problem is really stiffness and the baclofen s good for that. I now take 20mg 3 times per day and would not like to stop it. Did he say why you needed to come off the baclofen. I hope everyone on FES does not have to come off the baclofen. My foot drop is less severe on the baclofen.

Moyna xxx

Hello Moyna,

The consultant was concerned that I did not know what my feet were doing. Her argument was that reducing the baclofen and gabapentin would stop me being quite so clumsy with my feet. This was a physio/neuro consultant and not an MS consultant. Can survive quite happily during the day At night I need Gabapentin and very occasionally Baclofen if I wake up with twitchy legs or get prodded by the OH if I wake her up

Anyway I seem to have found a happy solution

Patrick

Luckily I’m not on any meds for my MS