[BBender]

I would like to talk or hear from other people who have delt with pressure sores leading to bone infection. I should have learned about it a long time ago, as I have had 5 flaps and a left leg amputation in the last 6 years . Until the diagnosis was made (just befor the amputation) all of the sores were ofcourse my fault, according to the doctors who all missed the infection.

I am currently waiting for surgery on my R. ischial pressure sore caused by the untreated infection that was still there after the amp. Does anyone have any experience with this type of thing.

PS: Don't be offended if I don't reply right away as I am waiting for the surgery and my be gone at any time.

[LadySmack]

BBender, on Mar 2 2007, 08:02 PM, said:

[font=Times New Roman][size=4]BBender:Mar.,02,2007:5:38

I would like to talk or hear from other people who have delt with pressure sores leading to bone infection. I should have learned about it a long time ago, as I have had 5 flaps and a left leg amputation in the last 6 years . Until the diagnosis was made (just befor the amputation) all of the sores were ofcourse my fault, according to the doctors who all missed the infection. I am currently waiting for surgery on my R. ischial pressure sore caused by the untreated infection that was still there after the amp. Does anyone have any experience with this type of thing.

PS: Don't be offended if I don't reply right away as I am waiting for the surgery and my be gone at any time.

As you may have seen on my previous posts, my husband has been dealing with Osteo for quite some time in BOTH hips. He has Right and left ischial pressure sores, and yes, they are getting better. He has dealt with bone removal and cleaning. You have had more flaps than he has, he has had 2. But, as you well know, its not a quick fix.... but your not alone in the world. The doctors around here belive in the waiting game, and after his last surgery, we are gaining ground. Don't give up hope.

[elisabeth]

I was in hospital last year for a very long time with a pressure sore and osteomyelitis, surely enough soon after leaving hospital one of the sores came back, which I tried to treat at home but have recently returned to hospital and discovered that the osteomyelitis has returned as well (if it ever left!). Naturally it's my fault that the sore came back, even though I did not get any proper tests to assess whether or not the osteomyelitis was gone before I left hospital last time, and even though I have spent the last few months on bed rest to give my skin a break.

As it stands it looks like they are going to debride the wound next week and then make sure it is fully clean before doing a flap. Obviously it will be the plastic surgeons who debride the wound, but at the same time there will most likely be an orthopaedic surgeon shaving down the affected part of the bone.

I don't know how I got osteomyelitis, but I did have pneumonia some time ago which nearly killed me and it's possible that's how I got the osteomyelitis. I'm just annoyed that after the pneumonia was treated I was not given any sort of medication to ward off possible infections from my compromised immune system.

So, hopefully the treatment this time will stop the sore from coming back because I have an amazing life out there that I am itching to start living properly, I am really sick of hospital.

Ultimately I'm just going to wish you the best of luck, I don't know if telling you my situation will help any, but hearing the stories from other people might just give you an idea of something, anything... anyway,my fingers are crossed for you (well, my fingers are crossed in thought that is!)

[brackman22]

I've had two flaps done also. If your sore or ulcer is in bad enough condition, then most likely the infection in the wound spreads to the bone resulting in osteomyelitis. I've never heard of bone getting infected in other ways. I'm sure there are other ways but I am very skeptical that it could be caused by pneumonia. On both occasions, I had bone scans to identify the infected bone. They inject a dye and wait an hour or two, then do the scan. The infected bone shows up as being "hot". The infected bone is a lot whiter.

On both occasions, the plastic surgeon did the flap AND cut out the infected bone. He told me that it is very easy to identofy the "bad" bone. Then he cut off just a bit more to be sure. I did not get out of bed for at least 2 weeks after surgey. Even then, it was an extremely long time before I could be up all day. I started with like 20 minutes twice a day and progressed slowly.

BRETT

[elisabeth]

I'm sure there are other ways but I am very skeptical that it could be caused by pneumonia.

Why?

I didn't say it was definitely caused by the pneumonia, I said it's possible. This is based upon the opinions of various medical professionals because (long story short) I got the osteomyelitis before I got the pressure sore. Basically, it's the osteomyelitis which caused the pressure sore and not the other way around.

Osteomyelitis is not just an infection restricted to wheelchair-bound people with a pressure sore, one of my childhood best friends had osteomyelitis in her knee, she is AB, and it is still a mystery to this day how she contracted it. Also, I met someone with a mild physical disability last year which was caused by osteomyelitis and she has no idea how she contracted the infection either.

When osteomyelitis is still largely a mystery to many in the medical field I think we need to suspend our skepticism and look for any possibility of how it could have been contracted rather than just accepting the norm, otherwise very few strides will be made in the treatment of this debilitating and dangerous infection. Like I originally said it is possible that the pneumonia could have caused the pressure sore, not definite. But it is still highly likely.

Osteomyelitis is an infection caused by bacteria, and viruses such as pneumonia can lead to bacterial infection. That is a very, very, very simplified statement but is a good base for investigation.

Caused, led to... whatever is the best way of expressing it I don't know. But some of the medical professionals I'm dealing with at the moment believe there is a strong connection between my pneumonia and my osteomyelitis

This post has been edited by elisabeth: 06 April 2007 - 07:26 PM

[mulepower]

My osteomyelitis was in my pelvic area and after going to the hospital for several weeks,i went to a nursing care facility that had me on Vancomycin by IV. The doctor said it had it could only be done that way due to how potent it was. I wanted a pill which is much easier. After about a month or two,they took me off, fearing my immune system would get immune to it just like i had to cipro. It healed up pretty quickly, whether it was at the nursing home or soon after i left the nursing home,i don't know. Yeah,i had a small bone biopsy when in the hospital. I don't like being away from home so i'll take better care of myself from now on and not take anything for granted.

[margaret]

Elisabeth, you are right in that osteomyelitis is not only caused by a pressure sore. My neighbor's niece, who is AB, just was diagnosed with it in her thumb and her Doctor has no clue as to how she got it!

[brackman22]

I scanned through the web and found that osteomyelitis can be caused by almost anything. I knew it wasn't limited to wheelchair users but we are at a higher risk. I was surprised to read that it could be contracted in so many ways by anybody. The bone is more resistant to infection but, like Elisabeth said, it is still not completly understood.

This page had some good info in layman's terms.
Osteomyelitis
Brett

[bigwheelzrme]

BBender, on Mar 3 2007, 01:02 AM, said:

I would like to talk or hear from other people who have delt with pressure sores leading to bone infection. I should have learned about it a long time ago, as I have had 5 flaps and a left leg amputation in the last 6 years . Until the diagnosis was made (just befor the amputation) all of the sores were ofcourse my fault, according to the doctors who all missed the infection.

I am currently waiting for surgery on my R. ischial pressure sore caused by the untreated infection that was still there after the amp. Does anyone have any experience with this type of thing.

PS: Don't be offended if I don't reply right away as I am waiting for the surgery and my be gone at any time.

hello, I'm going through a similar problem. I got a sore back in October on my left ischium any progress to stage 4. We were doing wet to dry dressing changes twice daily. The sword became infected with Staphylococcus and E. coli which was then treated with oral antibiotics. To make a long story short I got osteomyelitis in the bone due to that infection and have been on IV antibiotics for weeks of a six-week treatment along with the KCI wound Vac and now starting to make some improvement with the infection and the wound healing. But it took three months of no improvement before I was sent to a specialist that realized it could be osteomyelitis that was keeping it from healing
Thankfully the infection was a bad enough to need a flap. I've also been on total bed rest except for doctor's appointments twice a month. This is only the second time in 25 year period of my injury that I've had severe/stage 4 decubitus. So I'm guess I'm one of the lucky ones.
I wish you the best of luck and hope you get well very soon.

[ElysseP7]

My experience with osteo (may have been a result of past problems with skin ulcers, too many to want to count )

In March, it was discovered that I had HO in my left hip/ischial area. I had surgery to remove it and radiation treatment to try to keep it from growing back.

In my case, this was part of a bigger picture/problem.

In June '06, I got a new wheelchair and the first time I used it, I developed a red spot on the left ischial area. This is a spot that has been very vulnerable in the past. I immediately went to the wound care center where I was living and was told it was superficial. We got it to heal in a month. I was using my power chair (Levo) a lot of the time because it was the end of the school year (I'm a teacher) and I was getting ready to move to another state.

One year ago, next week, I started orientation for new staff at my new job. I used my manual chair. A few days later, that spot on my skin did not look so good anymore. I switched to the power chair at the end of the week in order to bring things in to my new classroom. Over the following 4 days, my skin had nearly healed itself. I had made an appointment at the wound care center anyway.

I used the manual chair and my skin flared up again. So, I thought that the manual chair was causing the problem. I thought that I must be sitting differently in some way that my custom cushion (Aspen Seating) could not compensate for.

Things went from bad to worse. On August 11th, I developed a UTI (often my body's way of telling me something else is going on) and high fevers. Between then and the end of September, I fought fevers and feeling awful, and bandaging a very large wound. I used all my sick days and then some. Not the way I wanted to start a new job.

On October 11th I went in for surgery. During the surgery, the doctor discovered 2 large fluid pockts. One exposing the hip joint, the other near the bladder. He drained them. From then till the end of November, I was hooked up to a wound VAC and laid up on a low airloss mattress.

The wound was clsed and healing went well. In mid-March I started to return to my life and get ready to return to work. Suddenly, I was bleeding out of tiny opening --- I mean, pencil-point tiny. There had been no signs of anything before that.

I went back to the doctor and he said that I would need surgery. The wound progressed to a huge one again. At the beginning of March I had my chair pressure mapped. There were no areas of concern as far as pressure was concerned. The OT deciided to try something. She had me wheel a bit. It seemed that the motion cause by wheeling may have been causing the ischium bone to slowly wear down on the tissue there.

I told my doctor about this and said that with the added fact that my pelvis has never been level.........problem. He decided to have an X-ray done to see what's going on when I'm sitting. That's when he saw this bone growth. It was just sitting there in the soft tissue. So, in April, he removed that, but didn't close up the wound. He wanted to give it a chance to drain and I was on antibiotics (infectious disease doc was involved now). I should have been doing better, but I wasn't. I was quite sick.

On May 17th I made my 4th visit to the OR since moving (38th for my lifetime total). When he was cleaning up the wound, he didn't like what he saw. It was then that he discovered that my hip joint had been seriously damaged by the infections in those fluid pockets. Something he felt had been going on for years. He said that because I take such good care of myself, that's why there were no signs of what was reallying going on. Ironically, in the earlier part of '06, I wasn't feeling well. I was checked for a UTI, mono,.....nothing showed up. Now I know what was going on.

On May 24th, the hip joint was removed and the wound was closed up. I've hit some snags in the healing, but have to return to work in less than 2 weeks. I can't risk losing benefits or my job for that matter. It would also look sooo bad. I just couldn't do that after the principal was sooo understanding. I also haven't a salary since April (when short term disability ended).

I moved to start a new chapter in my life. Who knew what was waiting for me around the corner?

[gazrobsuk]

I had osteo last year shortly after having a pacemaker fitted. I had no infections that we knew about & certainly no skin problems yet somehow I got it & as a 'walker' (I had it in my right ankle which is my weaker ankle due to previous soccer injuries) it was so painfull I cried sometimes.

I was on IV antibiotics for months before it went which was mega hassle as initially we had to go to the hospital every 8 hrs to have it adminstered through my venflon thingy in my veins. Eventually we forced them to let us self administer at home with some training & a suitable supply. There are lots of websites on it & a while back I had a problem which seemed very similar (very painful & hot/swollen ankle) & feared the worst which turned out to be gout. I have just contracted gout again I think so can't weight bear on my good leg so drinking plenty & no alcohol :-(

[wheels5894]

I has osteomyelitis in the tibia and the proper diagnosis was done using a special scan after injecting a radioactive source. Two sans were done one just after the injection showing blood supply and later when the source had been absorbed inot the calcium show where bone growth was.

Treatment in my case was a hole drilled in the tibia to release the pressure followed by oral antibiotics, 3 of them, for 15 - 16 months. The condition is hard to treat and has to be maintained that long to finish it off. Blood tests can detect infection and treatment has to continue until these tests are negative.

The reason I posted this is that it seems some people are getting very short treatments and no checks at all to see if the antibiotics have killed the infection off. Make sure this is done if you are being treated for this rather unpleasant condition.

[ElysseP7]

Did they remove any of the bone or just treat it with antibiotics?

wheels5894, on Jul 25 2007, 08:56 AM, said:

I has osteomyelitis in the tibia and the proper diagnosis was done using a special scan after injecting a radioactive source. Two sans were done one just after the injection showing blood supply and later when the source had been absorbed inot the calcium show where bone growth was.

Treatment in my case was a hole drilled in the tibia to release the pressure followed by oral antibiotics, 3 of them, for 15 - 16 months. The condition is hard to treat and has to be maintained that long to finish it off. Blood tests can detect infection and treatment has to continue until these tests are negative.

The reason I posted this is that it seems some people are getting very short treatments and no checks at all to see if the antibiotics have killed the infection off. Make sure this is done if you are being treated for this rather unpleasant condition.

[wheels5894]

[quote name='ElysseP7' date='Jul 30 2007, 01:18 AM' post='37159']
Did they remove any of the bone or just treat it with antibiotics?


in my case I know they drilled the bone and that they did not remove and large amount of bone, but they probably did debridement - removing dead material onthe inside of the bone. After that it was just antibiotics. I had a week in hospital, in a day before the op, and the rest on IV antibiotics. After that, I had oral antibiotics and regualr checkups iintil it was finally dealt with some 15 months after diagnosis.

Oh, and if you are prescribed sodium fucidin to take orally, be careful. I took it for about 4 weeks by which time I was in a terrible state and stopped taking it. When I saw the consultant he commented that I had done very well to manage 4 weeks!

[john S.]

BBender, on Mar 2 2007, 10:02 PM, said:

I would like to talk or hear from other people who have delt with pressure sores leading to bone infection. I should have learned about it a long time ago, as I have had 5 flaps and a left leg amputation in the last 6 years . Until the diagnosis was made (just befor the amputation) all of the sores were ofcourse my fault, according to the doctors who all missed the infection.

I am currently waiting for surgery on my R. ischial pressure sore caused by the untreated infection that was still there after the amp. Does anyone have any experience with this type of thing.

PS: Don't be offended if I don't reply right away as I am waiting for the surgery and my be gone at any time.

of course its your fault. Who else sits on your butt? their remarks get old though. I had a sore on my hip in the late 70's. I got it while in rehab and it was their fault! They had to chisel bone away and transplant tissue and skin. All on just diazapam.
Now I have one on my butt. I've had it since 1990 on and off. It heals for a few weeks then breaks back down. I finally go to the "wound care center". It starts looking good. The doctor thought it was remarkably clean before they did any treatment. After wasting a summer being "off it" It is now infected.
The one thing I have learned as a quad is that doctors aren't gods and reading a book can put you light years ahead of some of the best "knowledge" they have. You know your body. As a quad it doesn't heal normally. bones don't hardly heal at all. Infections are usually a result of a bug that shouldn't even affect you. I've started back on anti-infectives before this gets to the bone and cleaning it with vinegar and water solution. All things being equal, I'd rather it be cleaned by maggots than the most sterile nurse I've met in years.
If you haven't got one, get a low air loss mattress. Not some pidly 8 litres per minute, but 80 litres. Get someone to clean the surface 3 or more times a day. Use diluted vinegar with liquid ascorbic acid on the surface and it isn't going to heal untill the infection is gone. This may mean anti biotics or even scraping the bone and removing tissue.
You don't have to reply, just get well.
my prayers and best wishes are with you,

P.S. If they ask how you got it tell them you were trying to commit suicide and missed. I noticed gunshot wounds get more and better attention! and your going to need a shrink by the time they get it healed!
john

[Justagirl]

Don't know if this is a good addition, but I am a nurse on a surgical floor and deal with osteo alllll the time. A lot of times it happens after a fall, bump, or even a fracture. I don't know (along with the rest of the medical world) really what causes it. But trust me, it affects a ton of AB people too and a LOT of kids. It is serious though and can really cause damage if not treated effectively. Our patients are usually sent home with invasive lines so they can continue antibiotic treatment--which varies depending on the infection in the bone--at home for 4-6 weeks depending on severity...