8 replies to this topic

[MikeP]

A friend of mine that just became a quad C4-C5 has asked me to look into FES for him. FES is not available at the rehab center that he will be going to. He his in very good shape and is quite fearful of atrophy.

What I would like to know is, has anyone here tried it?

What were the results?

Can you purchase the equipment for use on your own?

Is it difficult to use properly?

Where did you learn about FES?

If this would help him, perhaps we would find a doc in the US that would be willing to train him and his wife to use FES.


Thanks in advance for your replies,
MikeP
Montreal, Canada

P.S. I am hoping to get him setup in the next few weeks to be able to post here on his own.

[EmHope]

Hi and YES!!! I use some different types of FES to prevent atraphy but almost more importantly to increase blood flow to limbs to prevent pressure ulcers and maintain bone density. I was injured 6 years ago at 16 and wanted to make sure I could keep my body in good health/shape for the long hall because I am young and because there may be something in the not so far away future for SCI and it's best to keep your body as healthy and fit as you can -- less complications. My body is in very good shape because me and my doctor take a very preventative approach to my car & rehab! I am able to balance still living a life as I am in gratuate school now for SLP & focus just enough on my body to remain proactive. Here are some peices of eqipment I use:

The RT300 - FES bike that stimulates the muscles in your legs to actually peddle and build up muscle. I need a caregiver to help me set up...but once I'm hooked up I peddle/workout for a whole hour independently.
http://www.restorative-therapies.com/

Wearable Therapy - special suit custom made for your body to provide FES throughout the day - Christopher Reeves had this and worked with the guy who does my fitting Phil Muchio.
http://www.mypainmanager.com/
philipmuccio@earthlink.net

Easy Stand Evolv Glider (not FES - but VERY important for maintaining bone density in the legs)
http://www.easystand...lider/index.cfm

Other pieces of equipment that I don't have but use at rehab center. Some progressive rehabcenters do have these!
http://www.hocoma.ch...ns_lokomat.html
http://www.paraplegi...CFQgZHgodMSTksA


ALSO DON"T IGNORE THE BLADDER!! LOOK INTO THE BEST OPTION FOR HIM....LEG BAGS ARE NOT GOOD FOR LOONG TERM LOOK INTO OTHER OPTIONS!! Look on this site and other places for Suprapubic vs. Mitrofanoff.

Also look into a proactive rehab setting he can hook up too for longterm after typical initial inpatient/outpatient rehab. Here are some examples:

http://www.centerfor...rg/contact.html - (where I go)
http://www.mypainmanager.com/
http://www.projectwa...ston/index.html
http://www.nextstepschicago.com/

You can find others through the Miami Project & the Christopher Reves Foundation
Hope this helps!

[MikeP]

EmHope, on Oct 6 2007, 09:44 AM, said:

Hi and YES!!! I use some different types of FES to prevent atraphy but almost more importantly to increase blood

-- CUT --

Em, that's amazing info. Thank you very much for taking the time to post it.


If anyone else has experiences with FES, good or bad, I would love to hear about it.

[Doug]

EmHope, on Oct 6 2007, 09:44 AM, said:

Hi and YES!!! I use some different types of FES to prevent atraphy but almost more importantly to increase blood flow to limbs to prevent pressure ulcers and maintain bone density. I was injured 6 years ago at 16 and wanted to make sure I could keep my body in good health/shape for the long hall because I am young and because there may be something in the not so far away future for SCI and it's best to keep your body as healthy and fit as you can -- less complications. My body is in very good shape because me and my doctor take a very preventative approach to my car & rehab! I am able to balance still living a life as I am in gratuate school now for SLP & focus just enough on my body to remain proactive. Here are some peices of eqipment I use:

The RT300 - FES bike that stimulates the muscles in your legs to actually peddle and build up muscle. I need a caregiver to help me set up...but once I'm hooked up I peddle/workout for a whole hour independently.
http://www.restorative-therapies.com/

Wearable Therapy - special suit custom made for your body to provide FES throughout the day - Christopher Reeves had this and worked with the guy who does my fitting Phil Muchio.
http://www.mypainmanager.com/
philipmuccio@earthlink.net

Easy Stand Evolv Glider (not FES - but VERY important for maintaining bone density in the legs)
http://www.easystand...lider/index.cfm

Other pieces of equipment that I don't have but use at rehab center. Some progressive rehabcenters do have these!
http://www.hocoma.ch...ns_lokomat.html
http://www.paraplegi...CFQgZHgodMSTksA


ALSO DON"T IGNORE THE BLADDER!! LOOK INTO THE BEST OPTION FOR HIM....LEG BAGS ARE NOT GOOD FOR LOONG TERM LOOK INTO OTHER OPTIONS!! Look on this site and other places for Suprapubic vs. Mitrofanoff.

Also look into a proactive rehab setting he can hook up too for longterm after typical initial inpatient/outpatient rehab. Here are some examples:

http://www.centerfor...rg/contact.html - (where I go)
http://www.mypainmanager.com/
http://www.projectwa...ston/index.html
http://www.nextstepschicago.com/

You can find others through the Miami Project & the Christopher Reves Foundation
Hope this helps!

how do you cover the cost of all this??? the fes bike alone is 15,000 or more. I used one in shepherd center in atlanta but here at home there are not even rehab centers with them.

[EmHope]

[/quote]
how do you cover the cost of all this??? the fes bike alone is 15,000 or more. I used one in shepherd center in atlanta but here at home there are not even rehab centers with them.
[/quote]

GOOD QUESTION!!!!....Most proactive medical is very costly and not easily covered by insurance. I did not get these items right away or all at one time! Over the past years I have been able to get partial coverage from insurance for some things and the applied to many different community funds/programs/grants etc. There are resources out there. Some take more digging than others. Most states have some type of state funded vocational rehab and if you can prove that a piece of equipment will help you maintain your health because you are on your way to getting a job again or going to school for a future career than they may contribute. Here its Michigan Rehab Services (MRS). There are also Centers for Independent Living/Disability Networks in almost all states. These places also have scholarships/grants you can apply for if you can prove you are needing the equipment for your health & independence in order to get back to being a productive member of society. Then there are more applications for funding sometimes through your state/local Rehabilitation center or SCI unit you can tap into. I have been petitioning my insurance to help me buy a quad handcycle bike for the past year & a half being denied numerous times. Finally they recently agreed to pay 1/3 the cost. Then I applied for funding through my local rehab hospital Mary Free Bed and got approved for the other 2/3 the cost! I was thrilled! The morals of the story:
1. Don't accept no or a denial from your insurance-submit again and again till they are sick of you
2. Apply and use your resources in your community or online
3. Sometimes it takes a lot of perseverance, work, and clever wording/letters on your part to get equipment you need............BUT YOUR BODY & LIFE IS WORTH IT!!!!

Edited by EmHope, 06 October 2007 - 04:09 PM.

[cornpit]

Hi, I've had some exerience with electro stimulation. The end of March 2007 I suffered from a terrible hernia, which resulted in a Cauda Equina-syndrome and I had surgery. Since then I suffer from loss of feeling in the back of my legs and my feet, but that wasn't the worst thing that had happened. I also suffered from severe fecal incontinence and had lost the ability to piss.

When I started my rehabilitation, I learned about a form of physiotherapy which is specialized in the pelvis area. The therapy is aimed at regainig control over your anus by training with bio-feedback probes. This is a small device which is inserted in the anus and is being hooked on a machine which measures the tension in the muscle in that area. That way you are able to train your muscles and see how you advance.

The probe is also able to send electricity through. I've had this treatment a lot of times and I have to say it really worked for me. The electricity makes the muscle to contract itself and therefore the muscle is being trained, even if you can't fully use your anus. The problem with nerve-damage is if you loose control over muscles, these muscles will degenerate and eventually the muscles is beyond repair. Every treatment aimed at trying to regain control over muscles must be started as soon as possible.

To give you an idea of the results: when I started the end of August 2007, I could realize a tension of 0,7 average. Right now my average is somewhere around 30! I peak over 30 and that's almost at normal strength. I've hadn't had an accident for three months now and the uncontrolled passing of gas is far less since the start of the treament. Although I still can't piss normally, there is some progress. But as long as I can't empy my blatter for more than half the amount on my own, I will have to use my suprapub-catheter. There are treatmens for your blatter which uses electro-stimulation, but I haven't found out which and where.

I would advize you to seek such a physiotherapist I've mentioned. Women who gave birth and suffer from incontinence, also benafit hugely from this treatment.

Furthermore the physiotherapist who treats me, also gives me electro-stimulation of my right leg. An electrode is attachted on the skin of my ankle and another is placed on the skin of my sacral-area. The treatment takes 20 minutes of a constant electricity-flow, no pulsing, and the result is that I notice my nerves are starting to work for at least two days. I notice a lot of "bug-crawling"-sensations in my right leg. My surgeon says this is a sign my nerves are still alive, and because there's still some activity in my nerves, there's still hope of regaining some control and feeling.

I hope this is helpfull for you and others. Make sure you search for this treatment. However, this treatment is not always being accepted by surgeons and hospitals, because they have a strong urge to stick to their own medicine and not look beyond and try and see what's out there. At least, that's the case over here in The Netherlands and the experience of my physiotherapist. Good luck,

Bastiaan van der Korput,
The Netherlands

[Pressingontx]

We use the RTI FES bike at our SCI Recovery Center and love it. Not only is it beneficial body wise, but it also is a great psychological boost for our clients to see the legs moving again. Highly recommend it! As far as the training, we had a rep from Restorative Therapies come out and give an inservice which was extremely beneficial as well.

Jason

Edited by Pressingontx, 04 January 2008 - 07:38 PM.

[carole338]

I am also very interested in FES therapy. Does anyone know of any places that have reconditioned ones? I used the bike without the stimulation and I was able to pedal. It was a fantastic feeling to use my legs again and a great workout. The recombinant bikes were not positioned right for me. My legs on the FES bike were positioned down and not in front like the recombinant bikes.

If anyone has info on where to get used FES bikes please let me know.

Thanks,
Carole

[kenf]

i was approved for FES program in Cleveland. they put the electrodes under you skin on the muscle you need to walk. then they put a computer in ya , that zaps the muscle when needed to walk. it was pretty impressive to see the video of people with the stuff in them , walking with a walker. beats sitting on my butt. i still need to get some stuff done on my teeth to get in the program. the program is FES Metro Heath Center , Cleveland , Ohio. best part it's free . lol (they have a site.)

Edited by kenf, 06 January 2008 - 06:38 PM.