9 replies to this topic

[McRobb]

Has been a while since I have posted but have a problem now and could use some input from those of you who have gone through this.

My Roho cushion died one day in November of 09 after over 5 years of good service. No one told me that they should be replaced after 3 yrs!! Anyway, left me with bruise on butt that went to pressure sore very quickly. In spite of care, wound worsened and ended up in hospital by early January.

Long story shortened - had flap surgery finally and it went well. On 10th day, part of incision opened up - not all of it but deep and not small at surface. Hospital tried lots of things but was sent home with wound vac by mid-March with no signs of that healing. Once home my home care company has kept the vac on 24/7 and we finally started to heal.

I hope to have wound completely filled in by early May and be able to start resuming life in my chair. I know that this step is a gradual process but cannot get any answers from people (including doctor's office) on how to do this.

If you or someone you know has done this, please share the process with me!! I have a while but would like to learn now what I should expect and what to watch for. After 5 months in bed. I am ready tp be out of here! Any help appreciated!

[qbounce]

Rob,

What I don't understand is that the surgery is only 10% of the process at the hospital.

The whole healing routine takes up to 2 months before you can sit in your chair a TOTAL of 6 hours a day, MAX.

1). I lay in a Clinitron bed for 5 weeks before beginning my "sitting routine."

2). Then, every day I was scheduled to sit, beginning with a half hour the first and second day. Then, adding half hour incriments approximately every 2-3 days.

3). I was released from the hospital when I hit the 6 hour mark, 3 weeks later.

4). Once home, I could only stay in the chair 6 hours maximum for the first 2 months. After that, only 8 hours for the next 3 months. And then, once I had my last doctor check up, he verified that everything had healed well. Only then was I given the green light to stay up as long as I was able.

So, you need to take it slow and easy. And, you don't have to replace your cushion if it still works well. Always have a spare one around just in case.

[edlee]

Maybe I'm the exception to the rule,, but I NEVER stayed out of my chair. Had a sore that measured 7x9 cm and exposed a bit of bone on my coccyx. From that point, I used a wound vac 24/7 for about a year. Never stayed out of the chair at all.

I did tie off a couple cells in my roho, directly under the tailbone,, but that was the only concession made. We're talking about 12 to 16 hours every day in the chair,, and I was reasonably active,, ie.. transfers, learning to drive with handcontrols, etc.

I'm not, by any means, suggesting that you follow my example,, god knows I've screwed up a lot in my life. But I am suggesting that our bodies are not as fragile as some would have us believe. Mine was well worn and almost past it's normal shelf life,, and it healed up fine,,, took a while,, but I wasn't willing to lie in bed waiting for it,, so it probably took a while longer than it should have.

I wish you well, and hope you heal quickly,, whatever you do.

By the way,, if you smoke,,,, STOP IT.
ed

[Texas Angel Ang]

I had to have a flap done twice in the same spot.

The first time I had it done... I took a very slow on getting back into my chair and so forth. 3 years later out of nowhere on my birthday, it reopened!

I then tried the vac and still got up in my chair and so forth but did not heal 100% so I decided to go ahead and have a second surgery because infection was getting to the bone.

My second surgeon was fabulous and after staying in the hospital for 2 months... I was allowed to go home but promised I would not overdo it. I would stay up in my chair for about two hours and then get back in bed and if I wanted to get back up later on I would do the same.

Honestly, to this day I am very cautious about how long I sit!! If I start feeling my ass hurting, I will take it easy and lay down.

Again everybody is different, that's SCI for you, but be prepared for dizziness and possible dysreflexia when you get up. My opinion... I also think it really relies on the surgeon and eating lots of protein!

[McRobb]

Thanks for the feedback from you all. If anyone else wants to chime in, I will be glad to read what they add to the discussion.

I do not smoke or drink and have been trying to get 100 grams of protein per day. Most days I get pretty close to that - protein bars help. In hospital, they started me drinking Juven - amino acid booster to help help tissue. Not sure I can tell the difference but maybe it would have been lots slower if I had not been getting that. Have continued that at home but it is pricey.

I am surprised that for two of you, the return to the chair was so gradual. My doctor warned me it would take a long time but I was thinking weeks and not months! I understand everyone is different so we will see what we get.

How much pressure relief do any of you do during the day? Before this, I did not have to worry that much about it as I move my chair around all day long. I have electric chair and could be active most of the day and not have to take much time for pressure relief. Sounds like that is going to change.

Thanks for the help once again. Bless you all for taking the time to answer.

[Texas Angel Ang]

I can stay up all day and not to any type of pressure relief... I know it's not good for me but I also have feeling and can tell when I need to lay down.

But I also recline (tilt in space chair)

[edlee]

The only pressure relief I do is leaning. I do, sometimes , wheelie onto my antitippers and sit in that position while watching TV. You have to set the tippers at the right position, but I find it relaxing, and it definitely changes the weight distribution.
ed

[KennyB]

After my flap surgury I switched from a ROHO cushion to a RIDE cushion, ridedesigns.com. It allows you to sit in your chair without putting any, zero pressure on your coccyx & butt area. It worked for me anyways.

[Ratticis]

Sounds a lot like what happened to me, but according to the doctor it's all my fault and I'm some sort of retard.

Sounds a lot like what happened to me, but according to the doctor it's all my fault and I'm some sort of retard.

[SuzinNYC]

MY BF is in an ltac...recovering from his flap surgery. His reconstructive surgeon was very clear on what we do after "healing" has taken place.

Here's the routine he laid out:

inspect wound before transferring into chair.....sit 15 minutes...transfer out...reinspect wound. If no redness, then keep doing several 15 minutes out each day for the next 3-5 days. Then increase by 15 minutes....same routine...inspection is a must!.....if redness is there...cut back to the original 15 minutes. Keep repeating this until he is able to sit for 2 hours successfully without a problem found upon inspection...then go home.....

Nutritionally...higher protein, lots of water....good sleep are necessary to healing!

Keep up that routine of increasing 15 minutes every 3-7 days until he is able to stay in chair longer. Try not to do 12 -14 hours in chair without interruption.....they also urge him to stick to 4-6 hours at a time...then out....either in bed or in standing frame.

At home make sure you have a rotating pressure mattress to sleep on.

Remember...that area will never be as strong as it was....so be patient.....make some adjustments to your lifestyle so that you Never have to go through this again!

Good luck...hope that synopsis helps!

Susan