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twinsmom
04-08-2010, 08:28 AM
My twin daughter has had one revision surgery due to P acnes infection. She and her twin sister had the first surgery in March of 09. We have had differing opinions on what to do next.

I need help in deciding to go with third surgery per Infectious Disease or wait until her spine has healed from second surgery revision. Dr. cleaned out,removed and then added to the hardware.

She is on high levels of antiobiotics. They will be stopped in mid June.

Second opinion said take it out now. Both docs are from world class medical systems.

There is a small chance that the infection has been eriticated which would mean no surgery. Literature doesnot support that outcome.

If she does have third surgery with all hardware removed, it will be the third year in a row she has had major surgery and missed high school.

What would other parents do in this situation? We have really no one to talk too. Mary

Pooka1
04-08-2010, 10:42 AM
Sorry to hear about your girl.

My ID twin girls were fused also. They had no issues.

Their friend who was also fused did develop a persistent infection and recently came off a long course of antibiotics. As far as I know and I really don't know much about her case, she is okay now. She did not need her instrumentation removed as yet but who knows what the future holds.

I can't really say what I would do as I haven't done any reading on this matter. That said, it is a toss up as to whether to listen to the surgeon or the infectious disease (ID) guy. Both the areas are obvioulsy extremely relevant. I would request they consult with each other and then get back to you. That might be productive and it will get you out of the middle where you don't belong. If they continue to disagree then I would get a few more opinions BOTH from surgens and ID guys.

In re missing some more school, from reading this group, I think the instrumentation removal procedure has a shorter recovery IIRC but you would have to ask the surgeon specifically.

Were it me, I would keep my eyes on the prize which is getting all this scoliosis stuff behind us. Although I was initially very worried about missed school, that was a total non-issue with both my girls... they weren't out that long and they were able to easily catch up and do well. That necessarily colors my opinion about a third surgery if it would be definitive. At some point you need to put this scoliosis stuff in a bag and ship it out. For me, the quickest path to that outcome is what I would take. Life for us is back to normal, scoliosis is off our plate, and I think you will achieve that will your girls also.

Good luck.

twinsmom
04-08-2010, 11:15 AM
Thanks for your reply. And I would love to get out of this scoliosis surgery world!!!
We did opt for another surgeon's view. We have two world class medical systems where we live, so we have been lucky. The surgeon agreed with his ID folks and wanted to do exploratory surgery.


We really like the original surgeon though at the girls' HS their has been much drama for the noninfected one about what we should do. Teachers, students, all wanted to have her hear their view of things. Sue, go to the other hospital system. All well meaning but it put Meg in a trap similar to our own parental one.

I was placed in the middle when I was given the choice to have surgery the next day - we had the paperwork fed exed to us- admit for observation- or wait for two weeks than talk it over. I was alone, my husband was not home yet. I choose to wait for two weeks, then the doc said that it was a good choice because of the work that was done during the last surgery. We talked about an appt time and planned it. I assumed he would take care of it. I think he assumed I would take care of it. The phone call is a blurr. We went for the visit and it was not on the books.I don't think he even remembered the phone converation.

That's when we had the second opinions. There also was intra and inter departmental drama going on which I still don't fully understand.

Anyway I am glad to hear the girl's infection was treated. without removal.

I guess P acne causes a film to be wrapped around metal. It is hard to diagnosis because it shows up intermittly as low grade fever. She had low grade fever with chills as soon as they d/c her. Blood work can be evasive as well though intially before surgery the doc thought it would be really bad because of the over the top counts.

I guess trust is the big issue we have. The doc did something out of the box and it created a stir. We just weren' t aware of how much of a stir.
And should we have been told what was happening in surgery until waiting after the fact? I don't know.

Infection is a risk and we were not happy but okay with it. Orginally the surgery was for a hook that had moved. Infections like this one have to be cultured and sometimes take days. The insurance co also was putting pressure on her to get out of the hospital.

So this is very convoluted but it's a convoluted you won't believe this type of story. It helps so much to talk to folks who have a good understanding of surgery. Glad to know the twins are doing well! Did you have same day surgery?

Pooka1
04-08-2010, 02:54 PM
Well I would not say I have any understanding of revision surgery which is what you are dealing with at the moment. I hope folks who do have experience will chime in.

My girls had different curve trajectories so they were fused about 19 months apart.

One's curve was never documented to stop progressing and was extremely rotated whereas the other's curve started and stopped in brace and out of brace and was barely rotated. They both were right thoracic though with apex at T9.

So for your daughter, did the infection occur at the time of the revision surgery of the loose hook or at the time of the original surgery?

twinsmom
04-08-2010, 04:07 PM
Wow How did your second twin handle seeing the first go through everything?

Either one of mine would have freaked. I think dealing with two was easier just because I have another set and I am used to coping with lots of sick kids at one time.

The twin with the infection never went(refused) until her sister's curve was getting worrisome. When she went in the curve was further along and her sister was measured again and it was the same. That's when we knew the curves were getting and going to get worse much more quickly than thought. And surgery was not an if but a when. Didn;t do alot of research. In laws had surgery with some complications so we knew what could go wrong. But never thought up this scenario!

And your question is the million dollar one. She could have caught, probably did catch it in surgery. There are many articles on treating hospital based infection that is from P-acne. Maddie had Swine Flu in the Fall and our doc thought that may have broken down her immune system and started the infection. The bacteria is from Acne on the skin. The hospital has had a few cases and wants to eradicate it.

ddb
04-08-2010, 05:22 PM
I too can not answer to revision surgery. My dd had surgery in Feb, and I can say that recovery would have been a breeze if school was not part of the equation. She left just after midterms and return last week. She missed almost a whole marking period (6 weeks). If you have good working relationships with the teacher and they are willing to pass along the class info to the tutors it should be fine. She had two teachers that never did that. One class she can get a handle on, but the other - it was six weeks of no instructional help. We'll see if she can get caught up - if not I'm thinking that will have to be a class she'll need to drop.

We went into this thinking we were well prepared. Knowing she would miss a lot of school we had meetings with the teachers before hand, but all the make up work caused my daughter a lot of stress. Every kid is different - some handle it very well too.

Dee

Pooka1
04-08-2010, 06:05 PM
Wow How did your second twin handle seeing the first go through everything?

The second kid was very calm because she saw how quickly the first kid returned to looking and feeling normal. Though she initially tried to avoid surgery with a brace, she eventually wanted the surgery because of seeing her fused twin move on in life.

She had a HUGE advantage over the first because she could ask any question and get a first-hand answer. She was so calm because of this. She was a cucumber. She also knew what the "Run away!" issues were so she felt prepared. These are things like removing the dressing and the tilt table. So she was mentally prepared to the hilt.

The first kid was just plain brave going through it first. I'm in awe of both of them though it's not like they ever had a choice... they would be dead absent the surgery.


And your question is the million dollar one. She could have caught, probably did catch it in surgery. There are many articles on treating hospital based infection that is from P-acne. Maddie had Swine Flu in the Fall and our doc thought that may have broken down her immune system and started the infection. The bacteria is from Acne on the skin. The hospital has had a few cases and wants to eradicate it.

Okay this is amazing to me. I assumed virtually all the infections associated with instrumentation were antibiotic-resistant staff because they flood these kids (and adults I assume) with antibiotics during surgery. I am nothing short of shocked that your daughter had a different type of infection.

This does explain the comments some parents have mentioned here about their surgeon's concerns about acne on the back. But I still don't get AT ALL how that can possibly matter with the antibiotic flooding. I mean both my kids have acne on their back and I can't tell you how it was on the days of their surgery but I can say the surgeon never mentioned a thing about it at any point.

twinsmom
04-08-2010, 07:13 PM
I had no idea either but I guess each little bug has its own story. It could have been alot worse!!!!!!!!!!!

However, we got a call from both girls who are in Florida with friends. M's surgical scar is starting to drain.

She also has a soft spot maybe a hemotoma - again discrepencies between ID and other hospital docs and ours and that has begun to turn pinkish. They won't be home until Sunday. Luckily my sister in law is a nurse and is there about 45 min away. So my guess is surgery next week. Mary

Pooka1
04-08-2010, 07:17 PM
You are so right... could be so much worse.

This will not go on forever. The end is in sight.

Best regards,
sharon

twinsmom
04-20-2010, 05:37 PM
She had surgery. Tried to fly home early since their was drainage. She is at home and doing better than last time though with some other concerns.

Pooka1
04-20-2010, 08:04 PM
She had surgery. Tried to fly home early since their was drainage. She is at home and doing better than last time though with some other concerns.

Oh wow. I certainly hope this is the resolution of the problem. After a while you just want to put scoliosis in a bag and ship it out. Life is so unfair.

Thanks for posting.