Hi all,
I have been reading all the comments on pressure sores and I'm a bit confused. It seems like many of you managed to go on with your daily lives while you were healing. My boyfriend was sent home from rehab with a wound on his tailbone the size of a quarter; a month later it has healed a little but it's very slow going. Because of the danger of shearing he was told he can't transfer or slide until it heals. He hasn't been fitted for his "real" wheelchair yet; for now we have a Hoyer lift and a tilt/recline chair. He can't change positions in the chair, someone has to do it for him. They took off the hand-rims so he can't push himself and anyway he can't see where he's going when he's reclined.

He won't be sent for outpatient rehab until the ulcer is healed and I think he has basically lost most of the benefits of his inpatient rehab now. So my question is, what can he be doing now? We know these things can take years to resolve. Did the rest of you just wait until your sores healed to continue with your lives? Or did you go ahead and risk shearing injury and start transferring yourselves around? I wish he could start learning to get in and out of the shower, do some exercises to regain his upper-body strength, sit at a computer, or at least have a reason to get out of bed.

Medicaid would not pay for anything fancier than the basic wet-to-dry dressings but they did provide a pressure-relieving mattress.

Your insight would be very helpful...thanks.

-Janet

I went home from the hospital with a pressure sore on the tip of my tailbone about the size of a quarter as well. I was stuck using wet-to-dry dressings, also. It healed up just fine with no restrictions over the course of about 2 months. I didn't take showers though, I took bed baths, but that was just because I had not recived my bath bench yet. Otherwise, I spent 8-10 hours a day in my chair on a Roho cushion, went out of the house, got on the computer, all that. I would say that just laying around in bed is bad for him. Bad for his strength (losing muscle tone), and bad for his mental state (just laying there messes with your mind). I would try and get him up some. But I'm not a doctor, what do I know?

If it's on the tailbone, lying down is what puts pressure there. Sitting upright in a wheelchair with a Roho will put less pressure there. The dressings should help protect from shearing,

I'm not a doctor, either but from my own experience with a much larger wound,,, my advice is to find a wound care specialist,,,,, and get him out of that bed.
ed

I keep trying to find reasons for him to get up and about, but he just doesn't want to. He was getting used to the idea of being limited by his injury but the sore seems to have really beaten down his spirits. He worked so hard in rehab to build up his upper body but now he feels that he isn't allowed to do anything with it. He thought he'd be zipping around in his chair by now, figuring things out, but instead he's just at a standstill.

Yeah, but you've actually lived through it...the docs, for all their training, haven't.

Hi Janet,
I have to disagree with the former posts. I am 25yrs SCI, & have had my fair share of pressure sores. I strongly recommend TOTAL bedrest! until it is 100% gone, or as you've said "it can take years to resolve".
If your bf is getting up or lying on his back, (pressure-relieving mattress or not) it could reoccure again & may become a permanent concern. What about tv, music, books, a laptop, great food, meditation, arm exercises etc.? All can avoid the boredom of bedrest.
The best of luck.

I agree with, Kiwiquad.

100% stay off the thing, wherever it is. Have him lay on his sides to avoid putting pressure on it. If it does get worse, he'll be back on full-time bedrest anyway, just for twice as long.

I hate it with a passion, but unfortunately you've gotta let sores resolve. Don't cut off your nose despite your face.

Peace,

kDd

P.S I got my first "area" from reclining in a tilt-chair.

I'm hopefully just nearing the end of about five months of complete bed rest. It has been no fun, but I was able to maintain my work schedule from bed as I am a computer programmer and have a system that allows me full access to my computer while laying flat on my back.

I understand that people's life must go on, some people can't work from bed. I just go with what works, there are times I have healed up a skin injury without getting down, other times I've had to get off of it. Obviously, the blanket rule is always get the pressure off

For me, with skin issues, I just try different approaches until something works. Being almost 23 years post injury, I have wound up in the operating room three times... no fun.

To make you and him feel a little better, I have a wound stretching across my entire rear (better on the left side) but not deep. It is shallow like a burn now. I had a home health care agency at one point using a wet dressing... which caused me to get an infection by giving bacteria a channel to get to the wound. I'm not saying he will get worse or that his treatment is wrong.

My dressing is Silver Cell AG or similar but I'm also using XenoDerm (Allanderm) to increase blood flow to the area. With my WIDE wound I could sit in my chair but only briefly. In bed I turn slightly on my side so that the body weight is shifted off the tail and on to the left hip.

I'm all over the map with this one and on the advice. I read everyone's and everybody makes valid points. I have had pressure sores from my halo when I was impatient rehab, so deep you could see my shoulder blades and put your fist in both sores. Fortunately, after he halo was removed, proper treatment cleared them up within a month.

When I got home from inpatient rehab, a slight quarter size pressure sore appeared on my tail bone. That was when I was extremely depressed, not eating, not getting up (just didn't want to not because of the sore) I also didn't have my "real" chair. I would get up every now and then on a roho cushion, it still lasted for about 3 years because I refused to go to the doctor in fear of surgery... which I ended up having to do.

On my 24th birthday in the same area, another pressure sore appeared. I canceled all plans and decided to celebrate my birthday in bed. I stayed in bed for a least 2 months because I had a NASCAR race to go to . I went to a wound care specialist and they gave me the VAC which did help in the beginning. My doctor told me only to get up if need be. I followed the bed rest rules until the NASCAR race came about. I did get up at night time to go out with the vac -- even though it was healthier for me mentally I wish I would have listened and more responsible because I ended up having to have surgery in the same spot AGAIN! (I still blame it on NASCAR LOL)

I guess it really just depends on the sore and how it's healing but more importantly find a really good wound care doctor!!!

Good luck!

Thanks everyone for your replies! Again I'm reminded that although things may sometimes seem bleak for me sometimes, there are many of you who have had much worse and have made it through.

I'm happy to report that his sore is finally almost healed but only because I got frustrated with the wet-to-dry routine and sought alternatives. I found several hydrocolloid dressings that were much more effective - I wish I had tried them weeks sooner. Plus, changing them once every other day as opposed to twice a day is so much easier on my back and his bum.

He saw the plastic surgeon 2 weeks ago; progress is good and no surgery will be needed. He has an appointment with his physiatrist next week - hopefully he will be cleared to go back to outpatient rehab soon.

Excellent news.
ed

i've only had one, but 4 surgeries because of it, u have to stay off it at all means, find a good wound care doctor for sci, all wounds are different and you have to keep the proteins up, it has to have no pressure and lots of protein to heal.................and if u can get it to heal without surgery, your whole life will be better............