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i cant get rid of my bed sore

AmandaBurkholder
0 Recommendations

hello im amanda a 23 y/o female and i have had this bed sore for almost 2 years and it wont go away i tried all kinds of med,cream,packings and i cant get it to heal iwas in a nurshing home for a year with wound care everyday and it went from stage 4 to 2 and now that i cant get wound care everyday its at a 3..i kno its best to stay off it but i have a house and animals to tend to daily so therefor i bought a ROHO and it is so comfy..lol i was shot and paralyzed april 10 2006 one month after my 21 birthday..im dealin with this quite well i look at it as what doesnt kill us only makes us stronger but i almost died twice from this wound..some please give me some advice u can reach me here or my e mail neworleanshoodstar@yahoo.com...thanks all who read and respon god bless

Explore topics in this discussion:

Surgery Osteomyelitis Paraplegia

28 replies

teresalouise

Hi Amanda,

STAY OFF YOUR BUTT!! If that's where your problem is located..I know it's hard to do when you have to take care of everything. Dang girl I can't believe you've been fighting that thing for 2 years. I was going crazy fighting mine for 3 months, now it's smaller than the tip of my pinky but it's still there. It was smart of you to get the ROHO they are cushy. I went back to my Stimulite, I have more stability in my trunk with a thinner cushion plus the transfers are easier too.

I was shot on October 1, 2007. My injury is a T7 - T8 complete. Sounds like we have a lot in commen, I read your other post about weight gain..man I hate that!

chun

the best way is to keep the sore area out of pressure and the skin clean and dry. besides, daily wound change or ask prescribtion to prevent further infection.
get well soon

FuschiaFan

There is no magic treatment for pressure ulcers. You have to stay off it completely if you expect it to heal. I would recommend seeing a good wound care specialist, get the right bed for home, and stay in it. Our wound care specialist (plastic surgeon) would not even consider doing surgery on you because he needs to see the committment to heal by you staying completely off it for at least a month (as well as stopping smoking, and eat well enough to have decent pre-albumin and albumin levels).

Pressure ulcers should be kept clean, but not dry. A dry wound will heal much more slowly than one kept moist as drying kills off the fibroblasts that are trying to make healing tissues.

If you are two years post-injury, are you on Medicare? If so, you should quality for at least once daily RN or LVN in-home wound care. Have you asked your doctor about this?

AmandaBurkholder

well thanks for all yall reading ..i kno i have to stay off it the most i can but i have a house to take care of i cant lay in the bed allday every day it will drive me nuts!!...i een tried stayin in the hospital 4 a while but that didnt work i had a wound vac on it didn heal i just dont kno what else to do i stuck between a rock and a hard spot right now ..

FuschiaFan

You have made your choice to not heal this wound. People die from pressure ulcers. They get osteomyelitis. They get sepsis. If you want to choose to heal and live, you have to choose to stay off it and find others who can take care of the house and your kids. You may need to go back to a nursing home to do this, but if you continue to do what you are doing, it does not look good for healing it, and you should expect for it to get worse. Not easy to hear, I know, but I see this daily in my work, and I know it is possible to heal virtually any pressure ulcer (with or without surgery), but it will not happen if you are sitting.

mtndreams

It is no fun, but all are right - you HAVE to stay off of the sore in order for it to heal. The best I found was wet/moist to dry 2x4 and dry 4x4 to cover. But this must be changed often - as soon as it starts to become dry. Healed a stage 4 pressure sore in 6 weeks, Staying off was key also. Had it checked by a physician to make sure there was no underlying infection that could pop open and be worse. All healed well...but staying off is the key!

dansun

I have a Volkner bed pad that rotates me when I'm in bed. It has been a blessing... the hospital beds were bad for me. check out volkner.com

cheers,
dan

horsestail

I don't personally have this issue, but The university of Alabama at Birmingham has secondary issue videos with one on wound care that you can watch free online or order the set of videos. http://www.spinalcord.uab.edu/show.asp?durki=97417 One member from my SCI group bought the videos and said it wished he had the info when he first needed it, so maybe you will find it helpful.
I do know that my aunt who has been in a wheelchair for now 50 years has always had issues with pressure sores that take a lot of time to heal. I figure hers has something to do with what happened to her in her early care or lack of would be better. She was put on a ward with the dying and left in her mess and developed bad bed sores. You have to remember this was in the early 1950s and in the UK. Their parents were divorced and when her father found out he took her out of that hospital and home then to a London hospital for care. My mom has a picture of her sister laying in a gurney with her fanny exposed to the sun to help heal the sores. I am not sure if that is something they do today or not.
I wish you the best.

Lorajw

Amanda,
I was injured 10/10/06 and got a pressure sore when on the vent at the nursing home and like Fuschia said, I got osteomyletis and septis and almost died. After surviving the above mentioned they gave me a colostomy followed by a muscle flap and believe you me that's where you are headed if you don't get off of it. That $500 rojo is no comparison to $50000 mandatory clinitron bed you will be confined to! I finally have been discharged from wound care from that surgery after almost 2 yrs. Stay off of it, take a multivitamin, zinc, and vitamin c everyday and what helped me personally was drinking 2 scoops of choclate or vanilla protein whey in my milk every morning. That's 52 mg of protein and your body needs a lot of to heal that tissue! Protein, protein, protein, and then some protein! I admire your courage and your spirit! You have such a great fight in you now get your butt healed and show the world how strong you are!

myheartkayla

Amandamy daughter had a bed sore that went into osteomyeltis it ate away at he bone and we had wound care she finally was admitted in the hospital thank god and they went in cleaned it a put a wound vac on then when it healed they did a skin flap which as turned out well for her. Its not easy staying off your butt exspecially for her she is a teenager trying to enjoy her teen years she spent 5 months in the hospital but it was wonderful to know that it was healing the smell was horrible and the drainage was embrassing, so I feel for you why can't wound care nurses come to your house to take care of this it sounds like you are slipping through the cracks. You have to be firm with them we had to deal with this for 6 months before something was one I finally put my foot down and had to raise my voice but my point was heard this is a serious matter and you need to have it taken care of as soon as possible.

God bless and wish you the best of luck
Kristy

AmandaBurkholder

well i thank all of yall for takin the time out to explain these things to me see they never explained it like yall have ...kinda scared the shit outta me...im not ready to die..no way..i have wound care come out only once r twice a week the say that they are short on staff thats through my home health....but im waitin to hear something back from the people with my sitters{pca} it takes so long to get anything done and let me tell u in louisiana ur lucky if u get home health..i dont kno much because noone has told me about anything its like im going in this but self my family is like 2 hours away and it just me im so thankful for yall helpin me...

Elysse_AZ

Amanda,
Have you considered surgery? The recuperation can take a while, but then it's done. Then you focus on keeping it from returning. I had problems with pressure many years ago and more recently with a bone infection in the area that used to have problems. I can't imagine having a wound that long. The risks are so great.

Also, look into different cushions. One doctor told me that maybe we should look at it like you would a diabetic --- they often have to change shoes during the day; so more than one cushion. I never sit on anything not "special". I have gel cushions for the shower bench, and cushions for my chair and my van. You might need a combo of things.

When I had my problem, my insurance paid for a standing wheelchair and that helped. It was a great thing for me then.

If your wound is deep and large, it can takes ages to heal and that's whith staying off of it about 100% of the time. If it was minor you might be able to get it to heal. Two years is a long time.

As was mentioned in another response, it can lead to death. Example: Christopher Reeve. Infection can get in there and cause all kinds of problems. Some you may not know about until years later.

I hope you find a solution. Good luck!

~ Elysse

Matt32

if it has not been done already, even though they can be pains in the butt, try a wound vac. option 2 is to go for surgery but you def. need to stay off of it. i've had sores for awhile and the only time i was sitting up was at meal time or when nature called and still i had to wind up having 3 closures surgeries within 2 weeks and just have came out of the hospital. good luck

harrshar

i use this cream call lantiseptic skin protectant try this to see will it work the cream is really good

luminita

Reading your comments I start to afraid for my life.I have bed sores for 3 years now and i can't heal them.I used anything that could help,but nothing.I went to the doctor,he says are clean,I made blood tests,is ok,but still can't heal.I was desperatelly looking for a roho cuscion,i couldn't find one in my country(Romania).I really don't know what else to do.Please,give me yours advices.Thx

FuschiaFan

You should not be sitting at all, Roho or not, if you have sitting pressure ulcers.

Can you see a good plastic surgeon or wound care specialist? Most regular doctors don't know much about wound care. With long-standing deep pressure ulcers it is very rare to be able to get them to successfully heal without surgery.

lyzzal

If you have a pressure sore you should not sit on anything. This is for those following this thread and reading about seating options. I used to get pressure sores then have to stay in bed until they healed, but they always came back. I have found some preventative measures that are working for me. In addition to nutrition, skin care, weight-shifting through standing or tilt, etc, I use a custom cushion. It was made at Gillette Lifetime Specialty Healthcare in MN (http://www.gillettechildrens.org/default.cfm?PID=1.17.6). This has worked for me for several years. If ever they cannot provide something adequate, I will go to the Ride system (http://www.ridedesigns.com/cushions.html). They have authorized suppliers all over the place (http://www.ridedesigns.com/suppliers/list.php). To me, something custom seems logical when every other off-the-shelf product I've tried has failed. (Obtaining funds for these products is an entirely seperate issue, I realize).

AmandaBurkholder

well i have aslo tried everything ive been in my bed now 4 days and i feel like a prisionor in my own home...i just got some test back i have staff{mrsa} this sucks i knoo im strong but how much can i really take..i feel like im slowly dyin and i cant help my self..i told my self in 2006 that this wasnt ganna beat me im strong i feel like i have failed.

Farfalla

Hi Amanda,


You have not failed! Having a pressure sore is one of the worst secondary conditions but it can be healed!
You need to be seen by a plastic surgeon who specializes in wound care..They are out there! I had my sore for over a year, was being seen by this plastic surgeon who opted for trying to heal the sore with the wound vac. I had a stage three sore, if I know now what I didn't know then i would have opted for surgery than use the vac!! Although it did help make the wound smaller, it took a very long time and the drainage that the vac takes from your body and the longevity of having to use it is not worth it!! I wasn't getting any where with this surgeon so i found another one who worked for a wound care clinic. The best move I ever made! He got me on a very good nutritional program..PROTEIN..Is a main key in healing a wound. I had to take in 90 grams a day..Getting that much is hard with just food so i drank protein drinks three times a day..I got the whey protein powder and mixed it with skim milk. You have to make sure you get into your body a lot of PROTEIN. He also had me taking vitamin C, zinc and L'Arginine. I used the powder form called arginaid(comes in individual packets, can be bought at walgreens.com) because you get more of it in a powder form than having to take many pills. I mixed that with water three times a day..Doing this for 3 months got me ready for having flap surgery. This is something that i didn't want to do in the beginning but if i had, it would have been just 4 weeks in bed instead of almost two years of trying to have the wound heal without!!
Get a good plastic surgeon, take in a lot of protein..90 grams a day, take vitamin c, zinc, drink the l'arginine (you will be amazed at how much it helps in healing) and have the surgery to close it!
Having to spend for weeks in bed is worth so much more than letting this sore get the best of you! Dying from these wounds is a reality!!

Hope this helped..
Stay strong, you can beat this!!

DeAnna

SirVab

Hey,

This really is a thread every one should read. Very insightful advice. Can’t add much more to what’s already been said except reemphasise the fact about staying off your wounds for a while. Nothing else will work otherwise. Getting your pressure wounds healed really is a life or death issue, things can’t get more serious than that, right?. Pity you’re living alone, you do need a lot of help right now.

Don’t beat yourself up over the down moments either. You’re bound to feel like you’re losing from time to time but you’re not. Two years in isn’t too far into this to have a good cry once in a while, there isn’t any shame in that… it’s quite therapeutic actually I speak from experience. I was 21 years and 29 days too when I got injured and two years after I was still having the occasional crying fit when things got tough [If any of my butch friends ever read this I’m dead, my rep will never recover I tell you]. You just have to have the resolve to make the necessary tough choices concerning your health after the Kleenex runs out.

Custom-made is right on the money, and it isn’t restricted to the cushions and wheelchair, it’s every single choice that you make from now on. I’ve learned that the best lessons we learn are those we figure out for ourselves, you’re unique and so are the solutions to most of your problems. That also applies to everything from wheelchair transfers to new ways of holding a spoon when your hands no longer work.

Best of luck, keep your head up and keep fighting.

Peace,

Tony.

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