[TE50]

I have extreme wasting in my buttocks and i have severe pain when am sitting in the wheelchair. I have a high profile roho but it doesn't help with the pain on my ischiums.

Does anyone have any tips? Cushions, surgery procedures etc.

Please add any thoughts you may have whether you think they would be usefull or not.

I have slowly lost my mobility as i cannot sit in a car for 2mins while in motion as every bump is painfull, makes it impossible to drive safely.

thanks Matt.

[Bob Clark]

Hi TE50,

Have you tried adjusting the air pressure in the Roho? That's a rather obvious question but wanted to start with the easiest.

A fellow named Ironside posted this link in another thread.

http://www.aquilacorp.com/index.html

It's a new electronically controlled seat cushion. Maybe it's adjustable while you're sitting in it so you could change the pressure points as needed for relief.

Here's the $649 model. Ouch, that's expensive. Hopefully you have good medical insurance.

http://www.aquilacor...custom_air.html

The Airpulse model runs $2495! Triple ouch!

They do have a trial period and/or rental terms available.

Personally I use a Jay 2 cushion but I don't think it would offer you any more pain relief than a Roho. But you could always try out other cushions if you have a decent, helpful and perhaps even compassionate medical hardware or durable goods dealer in your area.

I don't particularly like riding in cars either. I feel like all my guts are bouncing around. But it doesn't hurt me like it does you.

Have seen a doctor about the pain? Perhaps find a Spinal Cord Injury Center in your area and visit them. Or give them a call on the phone. Or a pain relief clinic?

Here's a link to Craig Hospital. It's supposed to have the best Spinal Cord Injury Center around. Give them a call and ask about your situation.

http://www.craighosp...SCI/default.asp

There are nerve-specific, non-opiate pain meds like Neurotin that may help with neuropathic pain. Here's a FAQ link about it.

http://home.tampabay...ymecfs/nfaq.htm

If the pain gets real bad there's always the option of having the nerve(s) cut. Larry Flynt had terrible burning pain so had a radical nerve cutting surgery done. He said it helped him alot. But this is a "last resort" type of option.

I feel bad for you. That sounds very painful. And from what you wrote it seems like it's only going to get worse unless you find some professional medical help.

Best of luck.

EDIT:

Ooops, I just read in the other thread that you're already on Neurotin and other pain drugs.

"I am currently taking Neurotin 3600mg, amytriptelene (spelling) 200mg, baclofen 100mg and dantrolene 100mg per day."

Give Craig Hospital a call if don't have a SCIC in your area. Hang in there TE50.

[smkaplu]

I have the exact symptoms as you and still haven't found a cure yet. I was looking at investing a cushion my a company called Ride Cushions but don't have it in me to spend $1500 on a cushion I'm not sure cure my condition. I'm a complete T11/T12 para since 11/03. i wsa wondering if you have found a cure for your condition whether medically or hardware wise. I would appreciate a response from you on your cure if you have found any.

Thanks
Steve smkaplu@sbcglobal.net

[yazwack]

I have been a paraplegic for over 16 years and have experienced the same exact problem. What helped with me was acquiring a roho enhancer cushion. According to the OT who recommended it after I had pressure mapping done, the cushion takes the pressure off of the ischiums and evenly disperses it throughout a persons legs and the rest of the bum. Here is a link about this cushion

http://www.therohogr...al/enhancer.jsp

Hope this helps.

TE50, on Jul 15 2005, 05:23 PM, said:

I have extreme wasting in my buttocks and i have severe pain when am sitting in the wheelchair. I have a high profile roho but it doesn't help with the pain on my ischiums.

Does anyone have any tips? Cushions, surgery procedures etc.

Please add any thoughts you may have whether you think they would be usefull or not.

I have slowly lost my mobility as i cannot sit in a car for 2mins while in motion as every bump is painfull, makes it impossible to drive safely.

thanks Matt.