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  1. #1
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    Poor results after second revision surgery for coninuing infection

    Hi, I hope to get some help with this. My one twin daughter has been infected by P acne and after the first surgery new hardware was put in. Second surgery found alot of infection and hardware was removed. She now looks worse than before first surgery. Waht are her options. What are the names of national specialists we could try to take her too. We had one consult but he said medical records never arrived. I didn't like the sound of that. Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  2. #2
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    Quote Originally Posted by twinsmom View Post
    Hi, I hope to get some help with this. My one twin daughter has been infected by P acne and after the first surgery new hardware was put in. Second surgery found alot of infection and hardware was removed. She now looks worse than before first surgery. Waht are her options. What are the names of national specialists we could try to take her too. We had one consult but he said medical records never arrived. I didn't like the sound of that. Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Oh wow. I am so sorry.

    Forgive me but I am not understanding something... this is NOT an antibiotic-resistant bug, yes? I mean they can knock out antibiotic resistant staph in most cases and they can't knock out a NON-antibiotic-resistant bacterium?? My mother contracted antibiotic-resistant staff while in the hospital but they eventually knocked it out with vancomycin I believe. I am not understanding why they can't knock P. Acne out in your daughter.

    I think you need to find a top ID guy who will work CLOSELY with the surgeon. Linda will know but I think they will want to get rid of the infection COMPLETELY and then put in new implants. Don't lose hope... this can't possibly be insoluble.

    Find the answer. You can do this.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Definitely. There's no chance of new implants until they're certain that the infection is gone.

  4. #4
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    Quote Originally Posted by twinsmom View Post
    Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Your daughter will take at least some clues from you. You simply have to approach this in a take charge, solid way. There should be no doubt in your mind that you will solve this (because you will). Your daughter must see you walk this walk.

    With my kids I took the approach that we have gone through the correct steps, reasoned everything out, thought it through completely. They knew I had life saving emergency surgery twice. They knew I would be dead twice over absent surgery. This places surgery in a good perspective for their particular cases though I never put it in those stark terms. Maybe they sensed this would kill them without surgery on their own.

    I think this carried over to their attitude that they were going to ready themselves and step up to the plate which they did as all kids do. The second kid of course had a huge advantage having seen the first kid go through it. But my point is they will cue off you. You need to step up to the plate and stay there.

    There is no reason you can't solve this. You will solve this. Your daughter needs to know you will solve this.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    Quote Originally Posted by twinsmom View Post
    Hi, I hope to get some help with this. My one twin daughter has been infected by P acne and after the first surgery new hardware was put in. Second surgery found alot of infection and hardware was removed. She now looks worse than before first surgery. Waht are her options. What are the names of national specialists we could try to take her too. We had one consult but he said medical records never arrived. I didn't like the sound of that. Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Who is taking care of her now? Surely the doctor that did the surgery must still be in charge of her care? An infection isn't something that I would think they would just let go. Is it that you are not happy with the care she is receiving and are trying to find a new doctor in the meanwhile? I'm guessing (and that's because I'm not in your shoes) that I would do like most of us here and keep her getting her treatment where she is at while I searched the heck out of the internet to find a doctor you trust. Pooka1 gave advice to keep strong for your daughter. Children do pick up on how the parents feel. If you are going to freak out or break down and cry, do it away from her. If you are strong and confident, so will she be. Best wishes for your entire family. I hope you find the doctor you are looking for. Just remember, infection can happen with any surgery, so it may not be the doctor's fault. But like you, I would want the best doctor to help clear this up, too.

    Sometimes we get rocks in our roadway. We can look at them one of two ways. There's a rock in my roadway, now I'm stuck. OR there is a stepping stone that I can climb and find a new and better path. I hope this becomes a stepping stone for you and your daughter, so that she doesn't fear her next sugery after the infection is gone. Your optimism will rub off on her.
    Best Wishes ((((HUGS))))
    Last edited by rohrer01; 04-24-2010 at 02:46 PM.

  6. #6
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    Thanks and Update

    Tahnks for all the support!!!!!!!!!!!!!!! We are trying to be calm and collected. I think part of the problem is my daughter's stoicism. The other twin was complaining of sport injury pain and meanwhile her twin was filling up with bacteria. We didn't find out about infection until two days before her second surgery. It had been delayed because of 16 year old b-day and driving along with school final exams. She was really in bad shape after that and we moved up the date because she finally was admitting how bad the pain was.

    New hardware was placed in despite infection which has been tried. ID wanted it out as soon as they saw her. We didn't know which way to go.
    There was an upcoming vacation that they had delayed before for 1st surgery and the year before so she was determined not to complain at all.
    We could have pushed for surgery but my husband was afraid of a 4th surgery or possibly 5th. So we crossed our fingers. It didn't work.

    ID wise she has been on IV antiobiotics full spectrum for 7 days with oral low level anitiobotic now. Essentially, the infection was never stopped.She had IV and oral before during after second surgery. So she has theoritically been carrying P acnes since late October. Osteomyletis is a concern.

    So ID is worried about healing because of anemia and food intake. Ortho is just worried.Not really friendly with each other.

    Her back continues to get worse and is more curved than before surgery. Pain is an issue. She has double the pain meds. Has complained of level 10 but then denied when I called the nurse. Kind of snarky. But I think she was she just denied. She never cries, never complains alot. She is starting to do that now today. Also complained last night of worried about being able to sleep and breathe. Again later on the snarky denial.

    I know another surgery is indicated after infection which will be problematic since the recent blood cultures never picked up P acnes. So it will be a guessing game.

    So we will have time to get a third consult. She is considered a complex case.Where are the premier Scolliosis Centers? Our doc trained at one but I would like to get a well established clinical expert not just one who publishes.
    Thanks again for the comments. I really have few parents who understand. One set went with another doc with great results, another is going with our doc but hasn't had surgery.

  7. #7
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    Go to the Scoliosis Research Society and do a physician search there. They have strict guidelines as to who can qualify to be one of their doctors. I hope this helps. This is how I found my scoliosis doctor. I also found a doctor for my neice, who lives in a different state than me. I know what it's like having a "snarky" daughter. Mine is the same way. Best wishes to you all!

  8. #8
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    I think you might want to consider your daughter senses or sees the anguish this situation is causing you and is trying to spare you. That is just my impression from what you write.

    What is needed in my opinion is a "can do" attitude where you start with the FACT that you will solve this and then set out the steps to accomplish that.

    It sounds like a rough road with pain in the mean time. This is a big issue in my opinion that can sidetrack you. Is the pain from the surgery, the infection, or the lack of instrumentation and subsequent progression?

    I think you need to address the pain immediately and simultaneously with the infection then the fusion and line up the experts to help you with that if that is the correct course.

    Please ignore these comments if they are off the mark.
    Last edited by Pooka1; 04-25-2010 at 12:13 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    twinsmom

    Having been in this situation myself I understand how desperate you feel and I was making decisions for myself not my child which is even harder. Since you live in the midwest my doctors are too far, but I can tell you the process. My surgeon, Dr. Lonner, contacted the ID doctor Dr. Brent Wise, both in NYC. I was hospitalized for 14 days with a picc line getting Vancomycin and Rifampin IV. My sed rate and CRP levels were closely monitored and they allowed me to be discharged on IV therapy for 2 more months checking my blood levels every week. Then I was to take Clindamycin by mouth for 2years!! I only made it for 1 year because of various side effects and am still having bloodwork done regularly to check the CRP and sed rate. It's been 9 months off antibiotics and my bloodwork is normal but I have been told the bug can lie dormant for up to 2 years. Both doctors consulted with each other and I visited my surgeon to learn more about the surgery. His plan was to remove the hardware, treat the infection for 3-4 mos. until clear and then replace the hardware. This is still the plan if the infection ( which is resistant ) returns. So I am waiting and hoping everything will turn out OK but it has been very hard for me as an adult and for a teenager I imagine even harder. It sounds to me as if you need to step back, be confident in your doctors and formulate a plan. I know having this plan in place gives me the courage I need to get through.
    Good luck. I hope this has been helpful.
    Diane
    ant./post. fusion Jan. '06
    T3- sacrum
    dbl.curve, T47,L43

  10. #10
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    [QUOTE=twinsmom;97227]
    I know another surgery is indicated after infection which will be problematic since the recent blood cultures never picked up P acnes. So it will be a guessing game.
    QUOTE]

    I had all sorts of tests to find infection during the year I had staph... blood cultures, nuclear medicine scans, etc., each more high tech than the last... and NOTHING picked it up. But, everytime they stopped antibiotics, it flared back up. Infections are sneeky little things. They like to play hide-and-seek. Antibiotics can break down their numbers to almost nothing and send them into hiding, but if just a couple of those guys find a good hiding spot, they will regrow and return. Unfortunately, there isn't any good way to know if it is gone, besides getting off antibiotics and hoping for the best. And even then, I've heard of them sitting dormant for several years before returning. You just have to be patient and hope for the best.

  11. #11
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    Happy Happy News

    My husband and daughter went for the pre op work and visit with doc.No Med port will be needed!!!!!!!!!!!!!!!!!!!!!!!!! Everyone is so relieved. However, she will be in surgery for at least 6 hours and at least one blood transfusion will be need. The surgery date is for the 31st.
    My mom is still lingering and I hope grace will make things all work out for us and my daughter and mother.

    The girls have worked out a plan for her twin. She will be suiting up and walking her sister into the OR. The docs have been notified that she has benign syncope so if she faints they will be prepared. I am pretty sure will.
    But she doesn't know we have a plan so maybe she will fool me!
    She is going to have another pair of twins to stay with her during the the surgery.
    Please say prayers. Mary

  12. #12
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    May 2008
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    Of course prayers will come your way Mary, I am sure everything will be fine,

    Bless you, you have all been through so much.

    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  13. #13
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    New Question re: Return to School

    Hi again, I am not posting a new thread so please give me a round of applause! My daughter continues to do very well. She has gone to a pro basketball game and HS soccer game with her brace and enjoyed them both. She has a IEP and just had her MFE( special ed terms - she qualifies because of her medical condition) They have suggested that she think about returning before the end of the semester instead of waiting for the new year.
    I am more than happy to have her try it. At most, 2-3 hours per day with Nurse's bed available in her office if need be. She is not happy but not really angry ( so that is a good sign- I didn't hear No I would never go!)
    However - the doc with my love /hate relationship with him as always allowed the girls to decide on their own with school. They stayed out the whole rest of their school year with the first surgery in late March of 09.This twin hasn't been in school since January.
    What have other teens/young adults done regarding school returns?
    How have other docs handled this issue?
    Was PT involved re chair use?

    I did call and leave a message for the doc and nurse clincian - the cowboys- who really act that way school? what is school?

    Also -you more than anyone understand what 24 pedicle screws divided down your spine would feel like - after a continuing and large kyphosis from spinal collapse. So I would really appreciate your thoughts and comments!
    Thanks so much. Mary

  14. #14
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    May 2009
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    hi Mary
    i am glad that your kids are doing well!

    just writing to make a suggestion, because i was a special ed teacher in NYC public schools for years...then became an educational evaluator (testing special ed kids) then a social worker...& have seen things happen with home instruction...
    i am glad your children are getting the modifications they require while they heal...i just wanted to suggest that you keep an eye on their credits...if they are in high school, there is always a worry with children receiving home instruction that they accumulate all the credits they will need for graduation...i've seen kids graduate late because of mix ups with that...
    i dont know what MFE stand for...but every state tends to use different expressions...except the term IEP, for individualized educational plan, is universal...
    i do know that if they need anything after they have healed, they can still get whatever they need...test modifications, P.E. modifications, etc...

    best of luck...
    jess
    Last edited by jrnyc; 10-11-2010 at 03:14 PM.

  15. #15
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    Sep 2009
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    Hi Mary - So Glad your DD is doing so well.

    My DD went back to school at 6 weeks. She was told 4-6 weeks and decided to wait. She did fine with full days from there.

    She didn't have any PT (except in the hospital) until after 6 months. She is just finishing up, and although she didn't feel she needed it at first it really showed her how weak her core strenght was after 6 months of restrictions. She is building core muscles to help carry her body to protect the unfused areas.

    Best of luck with her return to school and hope she continues to do great!

    Dee
    Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
    Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
    Jes (20yo) T 3 -> L 3 w/ Kyphosis

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