Pressure Sores

Do any of you wear a back brace by any chance?

I got one back in January. It's the hard plastic kind that looks like a turtle shell.

Ever since summer started heating up I've been getting pressure sores. My neurosurgeon -- who had me fitted for the brace -- has gone MIA. My PM said he'd be happy to write me for something, but that it isn't really his area so I need to come up with something myself & he'll support me in that decision. My dermatologist has been working on getting the infection under control & getting the wounds to heal up, but as soon as she gets one healed, 3 or 4 new ones pop up.
I need to have my brace on almost all the time. I can't sit up or get out of bed without it. I've been looking to see if there isn't some kind of padding I can get to make it less dangerous. I've tried gauze pads & that spongy tape. The pharmacist recommended bubble wrap, but that's a mess because it's not breathable so it traps all the moisture against my skin & makes the sores worse.

Do any of you have any experience with this? Have you found anything that actually works to prevent them? They're so grimy & they hurt, hurt, hurt. If I can't work something out, I'm told I'll need to have surgery because the sores are pretty serious and can result in all kinds of crazy problems like sepsis and paralysis.

Please help!

PS -- I put the smiling sun to wish you all a happy, smiling, sun-shiny day! Thanks ahead of time for any wisdom you can share.

Dear Frances,
It never ends sometimes, right? I mean you're trying to take care of your back with the brace and then the sores. I wish I had some suggestions for you, and i hope someone else comes along who does. I just want to send you healing thoughts, although I know that doesn't help much.

You're doing everything you can. Keep searching because maybe you will stumble on someone who's been through it that has a creative idea. I wonder if anyone in any of the medical supply stores (where they sell things like the braces) might have any ideas? Just a thought.

You're so thoughtful to still put a smile on and wish us sunshine even through your pain!

Sending smiles back to you!

PaLady

Hi Frances: I wear a turtle shell that also supports the back of my cervical spine and my lumbar spine Only wear it when I really have too which seems like everyday.

Do to sores from sweating I had one made about two years ago by a company in Canada that specializes in cervical collars. My shell is covered with padding and is open at every available spot but yet supplies a lot of support and still looks and feels brand new. There is a cloth covering. My insurance carrier refused to pay for it and my attorney has the reciept from where i purchased it. My wife will search for you as I'm having severe head pain -I guess from stress.
The duo brace was custom made for me and i had to sign off on releasing the company that made it for me as the patton and government approval were pending I can not remember the details. I did not care- just wanted relief.
This company was a home based family run business that had a family member with a fused cervical & lumbar spine and they came up with this design.
Mine is tan in color in a attempt to make it skin color but other colors were available. It is also washable by hand.
Wife and i are leaving on Friday to get away from the mess that happened and clear our minds. We are going to our vacation Cottage in upstate Pa and computer reception last winter when we were there was really bad. Hopefully my wife Barbara can find the site for You and I'll post it as a topic if not I'll get the name and address from the reciept. My wife told me the cost was 85.00 plus shipping to me it was a gift from God especially on Hot days. Take care and by the way You have been leaving some really informative posts that are very impressive. I wish I could be informative as You. God bless !

Thanks Tom/Barbara! That brace sounds like just what I need.

I still need to get my email set up. I'll take care of that over the weekend.
I can't believe you got a custom one for $85. That's amazing! Mine cost $1800 & it's only semi-custom. Plus, the worst thing is that it's made rectangle-shaped because it's really made for a guy. Apparently they think that we women in pain all gorge ourselves on food because the company makes men's sizes in S, M, L, XL, XXL & XXXL, but only make the women's sizes in Large and up. ARRRRGGGH! How aggravating!

I'm still trying to get my neurosurgeon (who prescribed the brace) to return my phone calls. I've been trying for 3 weeks & am thinking about sitting outside his office & stalking him until I can get him to either schedule an appointment or take a phone call (jk about the stalking, maybe not kidding about showing up at his office).
In any case, I would want him to take a look at the model to make sure it won't mess up any of his pretty surgery work; since it doesn't look like that's going to happen anytime soon, I can wait some time to get the info on the guy you used to make Tom's brace. I'll send an email in the next week or so & you can respond to it at your convenience. :)

Thanks again for your help! Hope you have a restful vacation. It sounds like a very peaceful place to visit. :)

peace,
frances

Tom,
Thanks for the advice.
I've tried Valium before, but I don't do well on any of the benzo's. People tell me I get crazy angry whenever I'm on them, so I've stopped taking them. I've literally tried absolutely *everything* on the market as far as muscle relaxants & benzo's. The benzo's make me sound short-tempered. The muscle relaxants (like flexeril) are a problem because I have damage to my motor nerve in my right leg & it's already enough of a struggle to get it to move. When I take the flexeril my leg just drags behind me & the other one isn't really strong enough to support all my weight for very long. It was a good idea, though. I appreciate the suggestion.

The good news is that I did get into my PCP last night & she recommended an OTC cream that I can put on to prevent the pressure sores (hopefully). When I'm feeling a little better I plan to head to the store to pick some up. She also switched my on/off schedule so I'm wearing the brace at night -- which is great because I can actually get some much needed sleep since I'm not all twitchy & in pain -- and so I can wear it in the car/bus or when I'm up & about at work. It's probably not as good as getting a better brace like you have (lucky you!) but at least I got some sleep at night, so that really helped a lot. Hopefully I'll have another good night of sleep tonight. That would be wonderful! :) Everything seems so much better after a good night's sleep, right?

One more quick question. Have you tried different styles of braces? The one I have is 2 pieces (front & back). It goes from T-5 to S-I and has 4 velcro strap that hook on the front then go through belt loops in the back, then loop around and velcro in an "x" shape in the front. I know I've seen different styles -- some that are all one piece, some that are three, some that snap in the front like a vest, others that lace up & tie. Any idea how I could find out more information about what the benefits of each one is? The 2 bracemakers that I met with only had a couple of sample styles. They said they could order something else, but who knows if it would work and there were no returns allowed. In comparison to what they were charging, it sounds like the guy who made yours is a lot more reasonable so at least it wouldn't be as much of a loss if it didn't work out, but I'm still not sure how I would go about choosing a specific style without trying anything on. Do you have any suggestions?

Thanks much,
frances

PS -- Sorry to hear about your rough ride out to the cottage. Hope you're at least finding some rest now that you've arrived. Take care & God bless.