#132358 - 09/02/08 12:17 PM
Do any of you deal with ongoing pressure sores?
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kimbur40
Member
Registered: 10/06/01
Posts: 37
Loc: TN
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I've been a SCI C5-6 Quad for almost 21 yrs now. The past 2 yrs I've had to deal with pressure sore ending in butt flap surgery.
Now again, this summer with the heat and moisture I'm dealing with another on the same butt cheek.
I do lay on my side everyday for several hours and get up for a few hrs with extra pillow under sore. I've tried duoderms, vitamins, miracle mist and many others. It seems nothing works better than the other. I have a petite body and I'm losing muscle tone and weight not being as active. This is all becoming overwhelming to continue dealing with.
I'm asking if any of you have had this problem and have you overcame it?
Kim
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#132490 - 09/03/08 10:12 AM
Re: Do any of you deal with ongoing pressure sores?
[Re: kimbur40]
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flicka
Member
Registered: 04/06/00
Posts: 24616
Loc: SLO County, CA - 66.122.77.142
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I'm asking if any of you have had this problem and have you overcame it?
I had terrible pressure sores & flap surgery 20+ years ago. It was a constant battle until I put on about 20 lbs ten years ago. Other than that, the only way to get rid of the bastards is to stay off the area until it heals.
Sorry, it is never easy.
_________________________
"A lot of things were acceptable--until we stopped accepting it." -- Al Sharpton '12
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#132525 - 09/03/08 09:34 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: flicka]
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Splinter
Member
Registered: 02/24/00
Posts: 4436
Loc: CA
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A pillow under your butt is only going to make things worse. You have to stay off it completely until it heals. Since you have already had a flap, that area will always be more vulnerable, and you are unlikely to be a candidate for another flap now in that same area. "You can put anything on a pressure ulcer and it will heal, as long as it is not the patient" (from a placard at Rancho Los Amigos).
What kind of bed are you sleeping on? A low air loss mattress will help to keep your skin less moist.
Before you start sitting again, you need a good seating re-evaluation and may need custom seating. Your skin is not as forgiving as you age.
Have you been tested for diabetes or peripheral vascular disease? Do you smoke? All of these make you more at risk, esp. as you age.
Are you seeing a good wound care specialist nurse or physician?
Are you eating a high protein diet and taking a high-stress multivitamin?
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#133056 - 09/07/08 12:32 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: Splinter]
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soda
Member
Registered: 08/26/07
Posts: 4726
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yeah, get your seating mapped like splinter wrote. make sure whatever rehab that does the mapping has different kinds of cushions to test you on; like you might do better on a roho quadtro than a jay 2 or active (for instance).
_________________________
 67.87.81.12
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#133812 - 09/11/08 09:55 AM
Re: Do any of you deal with ongoing pressure sores?
[Re: soda]
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dashing
Member
Registered: 08/31/01
Posts: 6633
Loc: home
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make sure they heal from the inside out. down again due to not taking my own advice. dash
i miss splinter
Edited by dashing (09/11/08 09:57 AM)
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#133821 - 09/11/08 11:38 AM
Re: Do any of you deal with ongoing pressure sores?
[Re: dashing]
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mellenmat
Member
Registered: 06/09/03
Posts: 67
Loc: Washington State
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make sure they heal from the inside out. down again due to not taking my own advice. dash
i miss splinter
Inside out is right I would heal over the top then they found I had osteomylitis from a bone being nicked in a previous flap surgery. A nuclear bone scan might be appropriate. I am very fortunate to have "beat it".
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mellenmat
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#133889 - 09/11/08 09:35 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: mellenmat]
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kimbur40
Member
Registered: 10/06/01
Posts: 37
Loc: TN
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On Monday, I went to my wound care DR. He applied a hydroferra blue dressing. It is a fairly new dressing out on the market. When I went to fill the script it was denied by Medicare. The cost is 150 for 10 sheets the size of 2X2. I can't afford and don't understand why these DR'S prescribe in our situations. I contacted Medicare today to appeal. It could take weeks or longer for an answer. I did get samples to use which will last a week.
The sore is already showing improvement. The hydrofera blue dressing is cut a bit bigger than the sore. Then, moisten dressing with saline or sterile water. The dressing is applied to the wound with a 2nd vaseline gauze to keep moist. The final step is apply a dry gauze or bandage to stay put. This is to heal from inside out. I have it changed every other day and shower the same.
I'll keep you informed to see what happens. I get so frustrated staying in the bed so much. My laptop, tv and phone help pass the time. I welcome any comments.
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#149846 - 04/04/09 09:08 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: kimbur40]
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Susan34
Junior Member
Registered: 04/14/08
Posts: 24
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There is a cure for pressure sores. One that I have found that has saved my ass (literally) on more then one occasion. It is an Amish cure, and believe it or not it is Preparation H, but you want to use the ointment not the cream. Because they have changed the ingredients in the cream, (use the one with fish oil in it)this is good for a pressure sore that is not already opened. You will be amazed at the results when you use the stuff!! I have no idea if it would heal an open pressure sore or not, because I have never tried it.
There is a cure that works really well for a pressure sore that is opened. You take one capsule of the herb, Golden Seal, open it and put it into a small bowl, then take a gel capsule of Vitamin E, poke it with a straight pin, squeeze it, and put it in with the Golden Seal, and mix the two together. Then cover the sore. Now you want to alternate this with Aloe Vera Gel, because Aloe heals from the inside out, and that's the way a pressure sore works it eats from the inside out.
I have been in a wheelchair for 30 yrs. and have only had 2 pressure sores and have never had to have surgery because I have used these two cures. The 2 that I got were before I found the cures, and they were extremely small.
Edited by Susan34 (04/04/09 09:13 PM)
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#153800 - 06/09/09 05:28 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: Susan34]
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Robbo96b
Member
Registered: 12/11/08
Posts: 192
Loc: Sunny California
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Sounds like you got lot's of great ideas, especially the nutrition, high protein in particular, and vitamins. Vitamin C and zinc are very important, I'm battling a pressure sore too. It came back after healing the 4th time last October. I finally went in for a flap surgery, my doctor couldn't find anyone in Modesto who would do it so I ended up going to UCSF, transportation was a big problem and the doctor ended up making it bigger. He did remove a cist of some kind but never did a dang biopsy so I never found out what that dang lump was! He was supposed to do a flap n close it but just made it deeper and bigger. My general practice doc found out I have a hypo-thyroid problem so I'm taking Synthroid, generic for Levothyroxine. He started it at 25 MCG about 9 months ago and now it's at 50 mcg. I'm still not understanding how that will affect my metabolism. I hope I'll be less boney. And I won't have to pack away 120 grams of protein a day. NOT EASY! especially when I'm anemic take opiate pain meds, and iron. I have to eat lot's of salad, veggies and try to get most of my protein from beans, yogurt and eat plenty of whole grains. What a pain in the butt. literally. It hurts a lot when I gotta have a bowel movement every day.
Maybe you can ask your doctor to send you to a dietitian, that's what my next step is. I've asked him before but now that my body chemistry is changing I'm not sure he has all the answers. It takes a long time to get the thyroid medication right, that may have something to do with why I can't gain any weight. I got lot's of muscle above my sternum, but I'm way too boney below the hips. The scoliosis puts all my body weight on my left ishial bone and that's where the recurring pressure sore is. I have a bad feeling about going back in for another surgery. I'm only gonna have one more shot at getting a flap surgery so finding a better surgeon is a big problem. Too dang many doctors have screwed up surgeries over the last 8 or so years.
I hope some of this helps ya Kimmy. Maybe the answers to some of my problems might help with yours. Maybe there's some sort of thyroid problem or you may not be getting enough protien. Ask your doctor to check that out. I'll keep bugging my general practice doctor to send me to a dietitian and report back as soon as I find out anything. It could be a while, good luck in the meantime.
Edited by Robbo96b (06/09/09 05:31 PM)
_________________________
"The entire law is summed up in a single command: Love your neighbor as yourself"
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#178346 - 01/26/10 02:16 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: kimbur40]
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bmattlin
Junior Member
Registered: 01/26/10
Posts: 1
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media inquiry
For a New Mobility magazine Web-site article about the newest innovations in pressure relief & redistribution, I would like to interview anyone who has experienced pressure problems and is familiar with the latest in wheelchair tilt, recline and even standing features.
Interviews can be done by phone or e-mail, and will take no more than 15 minutes. My deadline is Mon., Feb. 8.
My story is not about ointments, nutrition or cushions. It's about technology--the latest cool gear. I want to know: What works and what doesn't? What do you think of the newest high-tech products and capabilities? What other solutions have you tried for pressure relief?
Thanks very much, in advance, for your help and cooperation.
Best,
Ben Mattlin
NewMobility.com
bmattlin@earthlink.net
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#187801 - 06/11/10 10:23 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: bmattlin]
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Susan34
Junior Member
Registered: 04/14/08
Posts: 24
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There is a cure for pressure sores. One that I have found that has saved my ass (literally) on more then one occasion. It is an Amish cure, and believe it or not it is Preparation H, but you want to use the ointment not the cream. Because they have changed the ingredients in the cream, (use the one with fish oil in it)this is good for a pressure sore that is not already opened. You will be amazed at the results when you use the stuff!! I have no idea if it would heal an open pressure sore or not, because I have never tried it. There is a cure that works really well for a pressure sore that is opened. You take one capsule of the herb, Golden Seal, open it and put it into a small bowl, then take a gel capsule of Vitamin E, poke it with a straight pin, squeeze it, and put it in with the Golden Seal, and mix the two together. Then cover the sore. Now you want to alternate this with Aloe Vera Gel, because Aloe heals from the inside out, and that's the way a pressure sore works it eats from the inside out.
I have been in a wheelchair for 31 yrs. and have only had 2 pressure sores, and have never had to have surgery because I have used these two cures. The 2 that I got were before I found the cures, and they were extremely small. Good Luck and I hope this helps you.
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#193464 - 10/01/10 04:56 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: kimbur40]
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lindac
Junior Member
Registered: 10/01/10
Posts: 9
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Kim what stage is your sore? any stage after stage 2 should never use duaderm our nurse used on my son at stage 4 and it became gangrenous and needed emergency surgery. wet a sterile pad with sterile solution pack it in the sore and cover with a dry pad my sons neurotic dead skin with the help of sansorb oitment in 2 weeks then he was able to go on the would vac also most ins cover a low air loss mattress which will turn you all night by a computer we have had one for the last 9 yrs all you need is a script and a letter of medical necessity
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#193465 - 10/01/10 05:00 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: lindac]
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soda
Member
Registered: 08/26/07
Posts: 4726
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a lil' punctuation may help.
_________________________
67.87.81.12
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#193467 - 10/01/10 05:10 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: lindac]
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soda
Member
Registered: 08/26/07
Posts: 4726
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Kim what stage is your sore? any stage after stage 2 should never use duoderm. our nurse used duoderm on my son at stage 4, and it became gangrenous and needed emergency surgery. wet a sterile pad with sterile solution and pack it in the sore; then cover with a dry pad. ?my son's necrotic dead skin with the help of sansorb oitment in 2 weeks?(not sure of the meaning here). then he was able to go on the wound-vac. also most ins cover a low air loss mattress, which will turn you all night by a computer (really just actuates the air via compressor). we have had one for the last 9 yrs; all you need is a script and a letter of medical-necessity.
how'd i do?
_________________________
67.87.81.12
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#193776 - 10/07/10 10:11 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: flicka]
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kimbur40
Member
Registered: 10/06/01
Posts: 37
Loc: TN
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What types of food did u eat to gain weight? My weight shows more
in my stomach and I hate that. My legs, arms, shoulders and butt are loosing muscle tone and getting too skinny. I'm about to be in my 23rd year w/ a SCI.
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#193777 - 10/07/10 11:03 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: kimbur40]
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flicka
Member
Registered: 04/06/00
Posts: 24616
Loc: SLO County, CA - 66.122.77.142
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What types of food did u eat to gain weight? My weight shows more
in my stomach and I hate that. My legs, arms, shoulders and butt are loosing muscle tone and getting too skinny. I'm about to be in my 23rd year w/ a SCI.
I honestly think most of it had to do with age rather than what I ate. Toward the end of my 40s, I just started putting on weight. I have a bit of a belly, but I think my body is 'settling' more than anything. I never had the hip/thigh thing going until several years back, so I'm guessing this is what my mother used to call 'hip spread'.
_________________________
"A lot of things were acceptable--until we stopped accepting it." -- Al Sharpton '12
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#197805 - 03/02/11 09:16 AM
Re: Do any of you deal with ongoing pressure sores?
[Re: kimbur40]
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ulcerheal09
Junior Member
Registered: 03/02/11
Posts: 1
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We are the makers of The Healing Formula, the premier all natural wound care formula developed by a homecare nurse for bedsores and other chronic wounds. Many users over the last 12 years have had success with this formula. New Mobility readers that have an active wound may request a free sample.
http://www.healingformula.com
info@healingformula.com
800 357-2944
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#199079 - 06/04/11 11:48 PM
Re: Do any of you deal with ongoing pressure sores?
[Re: ulcerheal09]
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mcco5543
Member
Registered: 09/05/03
Posts: 39
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Hi, I've had multiple skin flaps, osteomyolitis and the eventual loss of my leg all due to pressure sore issues. So I definitely qualify as someone who knows a bit about this too. I am basically going to reiterate a few key points.. Firstly though, so sorry you're going through it. It SUCKS . DuoDerm/tegaderm works great for me when the sores just start.....in addition..
Get pressure mapped ASAP. The right cushion is a huge huge huge factor, bigger than anything else. I myself can only sit on a high profile ROHO
Look into getting a reclining power wheelchair. It literally has saved my ass. I can recline and still have a life ..and a life with quality too! Your PCP can write a script for it. If it gets denied just have your doctor re word the script (justification letter) until it gets approved.
Also are you sure your sores are all from pressure and not something else like moisture/dryness or shearing from transfers. Pressure may not be the sole issue in which case dealing with the actual issue will automatically improve the pressure sore issue.
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