[doublelibra]

I'm new to this list, and am a woman with a SCI at C6-7, caused by an MVA in 1991 when I was 41. I have sensation in random areas below my level of injury, but cannot move. I have been in bed since Jan. with a stage IV pressure sore on the left gluteal fold. It was debrided Jan 29. It was then about tne circumference of a quarter, and 4.9 cm deep. I have no disabled friends, and although I have MANY AB friends, I find myself avoiding contact with them. They want to help, but I just feel disconnected from the outside world. If I was not in bed I would be working as a counselor, having completing my Master's degree and passed boards as well. My Dr. at the wound care ctr. is a plastic surgeon who is really pretty negative. He is obsessed with the idea that the wound will probably not heal w/o surgery, and yet recognizes that I am a poor candidate for surgery becauseof my history of pneumonias. I would have to spend 6 wks. in a nursing home after surgery, he says in order to have a clinitron bed that he says is too heavy for home use. After my accident I spent 8 1/2 mos. in one, and returning to one is out of the question, because of the poorl care, bad food, lack of proper bowel care, etc. inherent in those settings. I was on the wound vac until the sore became so tiny it can barely be packed. We are using silver alginate now, with lyofoam on top of the area. The nurses are measuring the depth of the wound at 2.4 cm., but the Dr. says it's always been to the bone, and the bone is probably colonized. He hasn't done a bone scan, though. He called in an infectious disease Dr. who took a culture 2 wks. ago. It took over a wk. for the woundcare to locate the results (yesterday) Some bacteria were present, but they said the Dr. was not going to treat it. The plastic surgeon is in Switzerland, and my next app't is Sept 21. That Dr. is the only one who accepts Medicaid, and the 2 other wound ctrs. in town don't have a hoyer lift. I live w. my adult daughter and 4 1/2-yr.-old granddaughter, and at least my home life is happy. I have a home health agency to do most of my personal care. This is driving me nuts! Help!

[angel888]

Hi doublelibra.. what really helped me with my sore was cleaning it every night with saline solution and the gel inside of vitamin E and sitting on a pillow. i had debridment and surgery but didn't help. I just don't know with the colonization.. Hope it helps..

[margaret]

Hi there!
I can only speak from my own experience with some of the issues that you are dealing with, but I think you are getting some wrong info. My husband is C5-6 and is currently undergoing tx for wounds on his bottom. Yes, you can have a Clinitron bed at home; we did. The company that provides it will determine if your home can handle the weight of it, (it's about 2000 pounds!), but the Doctor in no way can determine that. Also, if your wound care Dr.s a surgeon, of course he will push for surgery; that is what he does. My husband's Dr. is a general surgeon and has sent him to 2 plastic surgeons for a possible flap. Both said that a flap would do him no good. Since one of the wounds had a large tunnel, his wound care Dr. did open it up to expose the tunnel in hopes that it will start to heal from the inside out. This just happened Friday , so we'll see what happens with that. However, he did admit that a flap surgery would not have been successful because of how the tunnel snaked around in 2 different directions. So, by resisting the flap surgery, I feel we did the right thing. Here in Michigan, my husband has a medical case manager who is a go-betweeen between us and his insurance. She is a very strong advocate in getting things done and equipment that he needs. I guess my point is, question everything, don't take no for an answer, and try to get someone to advocate for you. Hope this helps; Good Luck!

[doublelibra]

margaret, on Sep 2 2007, 01:55 PM, said:

Hi there!
I can only speak from my own experience with some of the issues that you are dealing with, but I think you are getting some wrong info. My husband is C5-6 and is currently undergoing tx for wounds on his bottom. Yes, you can have a Clinitron bed at home; we did. The company that provides it will determine if your home can handle the weight of it, (it's about 2000 pounds!), but the Doctor in no way can determine that. Also, if your wound care Dr.s a surgeon, of course he will push for surgery; that is what he does. My husband's Dr. is a general surgeon and has sent him to 2 plastic surgeons for a possible flap. Both said that a flap would do him no good. Since one of the wounds had a large tunnel, his wound care Dr. did open it up to expose the tunnel in hopes that it will start to heal from the inside out. This just happened Friday , so we'll see what happens with that. However, he did admit that a flap surgery would not have been successful because of how the tunnel snaked around in 2 different directions. So, by resisting the flap surgery, I feel we did the right thing. Here in Michigan, my husband has a medical case manager who is a go-betweeen between us and his insurance. She is a very strong advocate in getting things done and equipment that he needs. I guess my point is, question everything, don't take no for an answer, and try to get someone to advocate for you. Hope this helps; Good Luck!

[doublelibra]

Thank you to both of you for your replies. The saline/vit e is an interesting idea. I'd have to have my daughter sneak this in b/w dressing changes that the home health wound nurse does. She can only do what the Dr. orders. I could ask about it, but Dr. is out of town for about 3 wks. He said the only time he saw it improve was with the wound vac. The 2nd reply is interesting as well. I usually act as my own advocate, but this isn't working so well. The clinitron may not work in my house anyway. it was cheaply built in the 1970's, and the floorboards creak, but my Dr. doesn't know anything about my house anyway. I hope your husband has good results with his procedure! I don't knowhow to go about finding an advocate here in Nebraska.

[Somebody]

Welcome to the board doublelibra
I'm feeling for you.
I had decubs on both iscels from sitting in my wc without pressure release in 1991 1 yr. after sci.

We are so similar.
I had a mvi in 90 & I'm c7.

I layed in bed 5-6 yrs having my wounds dressed morning & night by my hhc nurse.
It got smaller & thank God never tunneled or got infected.
Thank God for my good care.

I finally got fed up in 97 and had flap surgery.
Best thing I could have done!

I had a lots of different beds.
I had the Clinitron. The one with beads that bubble up?
If so it was in a old house without good floor support.
But I wasn't on it long.
It shook me down to the bottom of the bed,
and I couldn't get back up by myself.

I finally settled with a low air loss pressure relief bed.
Been on it since.
It keeps me from getting any new sores,
and I only lay on my sides.
I'm on my bottom all day in the wc,
so nights I stay on my sides, and let my bottom get total rest.

I had a full flap surgery on my left, worse sore. (to bone)
I had minor surgery on my small sore on the right.
After surgery they put me on the Clinitron and it shook the stitches loose on the flap.
I wanted to be put on a reg. mattress & they refused.
I knew it was going to bust it wide open, so I left the hospital AMA.

When I got home, back on my reg. mattress with a bubble pad on top.
I slept totally on my sides not letting the sores touch the bed.
The opening was quarter size, but it was all fresh healthy tissue.
So to say. Not like the unhealthy site of the decub.

We packed it with "mesalt."
It was healed in a very short time.
I waited awhile to sit on it again, and only for short periods of time.

Like mentioned,
it was cleaned with saline squirted in with a syringe.
I did, but now know to never use betadine.
It will debrie, remove, any new growth you've had.
Too strong.
The "mesalt" was awesome, but it was healthy tissue.
I personally believe it would have been good any time.

I did not go to a NH after surgery.
My hhc co took care of me.

So nice you have your daughter!
Good luck.

Margaret good luck with your husband.

Will say a prayer for both of you.

One more thing I got a new wheel chair that reclines for pressure relief.
That's when I started getting out of bed again.
Everything is great now. No more breakdown.

God Bless!

This post has been edited by Somebody: 03 September 2007 - 06:58 PM

[edlee]

I can only give you my personal experiences and my somewhat distorted opinions, but they are all I have.

I had my pressure sore on my tailbone from the time I woke up in rehab ( not remembering much for the previous month). It wasn't particularly deep at the time. I was given the standard care, consisting of petroleum jelly based antisceptics covered with guaze and waterproof outer dressings.

This regimen was continued throughout my four month stay and for about a month thereafter, when I became disgusted with the results ( as well as the home care nurses sent to help me). I finially resorted to the phone book and personal reccomendations to find a doctor who specialized in wound care.

I was fortunate enough to find Dr. King, who was the first to notice that I had tunnelling occurring. He immediatly proscribed the wound vac, but also told be to not be afraid to wash the area in the shower with soap and water and to let it air dry for a while before replacing the wound vac dressing.

It took almost a year ( partly, I'm sure, because of my stuborn refusal to stay off of it) , and two debridements, to get to the point of not needing the wound vac.

It healed completely, although scarred quite a lot.

It had progressed to the point ( pre Dr. King) of measuring 7 cm by 9 cm and 3 cm deep. I'm told that my tailbone was actually visible at the base of the wound. I wasn't able to see it even with two mirrors, and I did try several times.

Such is my experience, now for my opinions. Go back to the wound vac, Clean the wound with soap and water and let air dry. Use a low air loss alternating pressure matress. Use only Roho cushions. And , most importantly, find a doctor who specializes in wound care.

I don't know if any of the above will be of help, but I got it off my chest.
ed

[JoJo1107]

hello Doublelibra,
i came home from rehab, 12 months ago, with an" uncatagorized" wound in the sacrum. It was a stage IV pressure wound. My doctor recommended a surgical solution but I had had enough surgery by then. I'm a C7 and had a lot of bad shoulder pain when I got home. My wound was mostly debreided with Mesalt and the i got a wound vac 10 months ago. The company that has it is called KCI and it has shrunk my wound from the size of a fifty cent piece and just as deep to the size of a pencil on the last measure. I am a great fan of the wound vac, no surgery, but it is very very important to have a well trained nurse doing the dressing changes. If you do a search for " wound vac" you can get a lot of good info. Good luck , one other thing, it is very expensive and my insurance treats it as durable equipment. again good luck.