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Thread: Poor results after second revision surgery for coninuing infection

  1. #16
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    May 2010
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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.

  2. #17
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    wow re dealing with infection

    Wow! What a story! And you seem to have suirved it well despite all the awful complications! I will be sure to share your story with my daughter.
    Her back continues to get worse but she has and actually always had a pretty good attitude. She has been back at the hospital visiting a friend who is a twin. And the two sets of twins have been supporting the patient. The other set were with us for Meg's emotional support the day of her sister's surgery.

    I found some info. My doc reccomended HSS, Boston, and another childdren's hospital in our state. We decided against it because it would be all private pay and Maddie has no qualms about her doctor.

    Reserach wise the majority of articles reccomend removal. However, there are current as in 2007 articles who say the Titanium cannot be a good host for bacteria and to keep it in even inspite of active bacteria. Obviously there is alot of room for debate. Our surgeon does not believe in rod removal anytime but because of the sinus tract wound drainage it was obvious
    this approach wasn't working.

    I haven't been able to find (and we won't see the doc to ask) what rod replacment will accomplish. I also don't know about the possiblity of P acne returning or getting in. I like to have reserach to help decide which way to go.

    I intially liked the doc and nurse but they both are fairly young males and they have that hot dog attitude in regards to surgery. The doc is was really great with the kids and was great with me but I think was really angry I was giving them a hard time. The Head of ID is close to my age and I got the feeling we were raining on their hot dog work in the OR with concerns about the P acne.But I also knew they had a point. And there were problems after the removal. So both departments had legitimate treatment concerns.

    So I am so much better now that the bacteria looks gone according to the bloodwork. She has one more draw to go. I do also question the surgery but they were getting worse and the family history was clear. I had hoped that the chances for bad things happening were diminshed because some extended family did run into problems with bad results. But each case has its own unique odds and Maddie had a bad card dealt to her. 3 in one family clan seems too much! But again she's doing well and is very hopeful things will get better.

  3. #18
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    So many brave, wise people posting here - both patients (and mothers of patients) and excellent advisers. You have my greatest admiration. You illustrate the indomitable human spirit. We all fear infection, revision surgery and hardware removal and here you've been through it all and lived to tell the tale - without a trace of self pity. Bravo, all - and especially to the kids, hats off!

    Not that excess sympathy would have been good medicine (as all sense) but they sure deserve some kind of medal and so do their parents.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  4. #19
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    May 2010
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    AZ
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    Quote Originally Posted by twinsmom View Post
    Reserach wise the majority of articles reccomend removal. However, there are current as in 2007 articles who say the Titanium cannot be a good host for bacteria and to keep it in even inspite of active bacteria. Obviously there is alot of room for debate.
    There will probably always be debate over this, since it's really hard to prove one way or the other. But, I had titanium rods, that held onto bacteria. A year of antibiotics couldn't kill the infection, but it went away instantly after rod removal, so I have no doubts that titanium can be host to bacteria.

    I had several people saying I should shop around for new surgeon during my ordeal, but I never really entertained the idea. I always felt my surgeon truly cared for me and was as heartbroken over my situation as I was. I felt very comfortable with him and his assistant. And I figured that he knew my situation better than anyone, so he was the best qualified to see it through to the end. He knew me inside and out. We started it together and we ended it together. Sometimes things just happen, outside of anyone's control... it doesn't mean you have a bad surgeon. If you feel comfortable with your current doctor, and feel they are qualified to handle the situation you are in, then don't let other people pressure you to find someone else.
    *Fusion T2-L2, May 2002
    *Moss-Miami Instrumentation
    *55 deg. curve before and after surgery (0 correction)

    *Resulted in Staph infection
    *Debridement surgeries in June 2002, July 2002, April 2003

    *Hardware removal - April 2003

  5. #20
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    Thanks and question re questions re pain management and medical concerns

    My daughter would have waited a year or longer with the infection but it was coming out of her back. Kinda of like rainbow colors! I think she has full confidence in her doctor. Thanks alot ofor your comments!

    One question I have is regarding pain management and medical concerns.

    How frequently do you all contact the doc regarding pain issues and other questions and what time frame do you consider realistic?

    Since her surgery, she has had pain issues that seemed to go above and beyond the norm. By the third surgery (last month 6 weeks ago) I think I have the basic issues down pat but sometimes I am not sure. We have been through alot and extra pain can be a sign of infection so I have decided to err on the side of hypervigelence rather not acting.

    The pain seems to be seen as muscle spasms because its sharp and she is doing more. She is on the full regime of pain meds. I don't call unless it's unusal for her and it's happened twice.

    Do you think I'm calling too much? We get a late call in the day which is okay but when she was complaining of pain with breathing I was slightly anxious. So she and I both were frustrated when he said Valium - which we knew- and seemed blaise with it all. I just get this feeling that we are not taken seriously. The CNP was this way with the open wound drainage.
    So it could be his style and its just how he handles things. I just wanted some feedback about this issue. If its the norm than its me and I need to cool my jets a little more on pain management. Thanks

  6. #21
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    Feb 2009
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    Twinsmom

    You have been through a lot with your daughter. I have been a registered nurse for over 20 years. If you have a concern, don't hesitate to contact your doctor...that is what they are there for. Especially, if your daughter is in pain...call the doctor.

    Hannamom (Ann)
    Daughter April had surgery July 13th, 2009 by Dr. David P Roye at Morgan Stanley Childrens Hospital. T2-L4
    She's doing very well!!

  7. #22
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    Thanks and Update

    Thanks for your post. We did get a reply which was to do what we have been doing. She is still at a higher level of pain than earlier this week. Sometimes she dishes the OTC drugs at various times so it could be that. Hard to say with a 16 year old. I guess we need to start keeping a journal again. She's old enough to record her meds herself. And I'll calll on Monday if she still is in pain and has been following through on the med regimin. And I finally have been able to format my question which is how much pain is from surgery and how much pain is from the deformity. I'll have to write that one down!

  8. #23
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    Twinsmom

    That sounds like a good plan. I hope you both have a nice weekend. Keep us posted on progress!


    Ann
    Daughter April had surgery July 13th, 2009 by Dr. David P Roye at Morgan Stanley Childrens Hospital. T2-L4
    She's doing very well!!

  9. #24
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    NC
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    I agree with calling in your concerns. They can usually help you figure out whether it is something that needs to be addressed with a change in meds or not. You don't have to figure this out all by yourself. They will help.

    I was beside myself when my one kid got hurt about 2.5 weeks after her surgery while at the prom. I called it in, was talked off the ledge, and then was told to come in sooner than planned for the first post-op visit (3 weeks instead of 6 weeks).

    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."

  10. #25
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    Mar 2010
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    Parental anxiety

    I can completely understand your situation. We dealt with Soccer. The one twin with the infection never was hurt. Oh, yes they refused PT and did rehab on their own.They didnot play as well as they should or could have but were adament. So it their meal to fail. Though people were amazed how well they did do. My other daughter was hit from behind three times during the seanson and then ended up with a bad sprain.You could collectively hear our side of the audiance gasp out loud as she fell to the ground. One of the Varsity players father was an Ortho who worked with our doc so he would get the play by play after all was well. Nothing ever happened weird in that you would think this would be the place of problems and revision surgery chances being sky high. I thought after that we would be home free. And I understand being talked off the ledge!!!!!!!!!!! I am glad I am not the only one!

    At times I really felt that the other coaches were telling their players to hit her since she was the JVstar player and lead scorer. Who knows?

    And of course I have come up with another question. The healing twin is out of the soccer game completely. She was defense and they have a better player just bad luck again. The other one has stopped playing and having anything to do with Soccer. I think it might be suirvivor guilt. Both had excellent abilities but never were driven and never wanted college ball. It would keep her busy and I like the teammates better than her new ones.
    Any thoughts?

    This story just seems so unending with twists and turns. I feel sorry for all the doc has had to go through with this.

  11. #26
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    Quote Originally Posted by twinsmom View Post
    And of course I have come up with another question. The healing twin is out of the soccer game completely. She was defense and they have a better player just bad luck again. The other one has stopped playing and having anything to do with Soccer. I think it might be survivor guilt. Both had excellent abilities but never were driven and never wanted college ball. It would keep her busy and I like the teammates better than her new ones.
    Any thoughts?
    I think I can comment on the twin bond thing. That sounds about right.

    My girls are extremely close. They are each other's best friends and will always be it seems. The shared scoliosis experience only bonded them more I think. They are 15 and sometimes will hold hands while walking.

    They of course argue from time to time but no matter what, they always think each other is extremely good looking. Just kidding... that's my favorite identical twin joke.

    I have told them from the start... be good to your potential organ donor! Identical twins have that advantage of not needing anti-rejection drugs for that.

    There was an article in a local paper about their great grandmother (my mother-in-law's mother) who along with her identical twin turned 90 earlier this year. That is so cool that my girls have an identical twin for a great grandmother.
    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."

  12. #27
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    Identical twins

    Whata near legacy! I just found out that my daughter is not handling things as well as I thought. They each have been using each other for support and the still recovering one really acted out badyly. A costly affair for us and for herself. We have the ducks in a row and I hope this was just a very loud cry for help.

  13. #28
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    May 2009
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    teenagers, yes? i am not surprised at any "acting out" your kids may do around all this! years of working with kids in NYC, as teacher and a social worker, i've seen kids act out over all kinds of stuff, and alot less serious stuff than what your girls are experiencing! think about it...for adults this is scary! i know that if i have the surgery, under the knife only once for this, i will probably act out just in frustration or pain or irritability or...any old reason i feel like...it's an awful lot to deal with for anyone, let alone a young woman/girl!!
    i hope they are able to talk about their hopes, get all their questions answered, and have their fears allayed! even then, i'd think the thought of this surgery may cause them some sleepless nites, no matter how much reassurance you or the surgeon can give!

    jess

  14. #29
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    Professional Help

    We are lucky to have had contact with a in hospital psychologist. The plan was for her to make contact while my daughter was in the hospital. The first day in before surgery, I contacted the nursing staff but there was a room change and I kept on forgetting to bring it back up. She didn't want to go see anyone and this would have been perfect. Now that obstacle is over and she is more than willing. Actually looked up her acting out behavior and found it could be stressed related. So in the end, it will work out. The psychologist specializes in chronic illness in children so that is just what we need. Again thanks for all the support.

  15. #30
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    Quote Originally Posted by twinsmom View Post
    We are lucky to have had contact with a in hospital psychologist. The plan was for her to make contact while my daughter was in the hospital. The first day in before surgery, I contacted the nursing staff but there was a room change and I kept on forgetting to bring it back up. She didn't want to go see anyone and this would have been perfect. Now that obstacle is over and she is more than willing. Actually looked up her acting out behavior and found it could be stressed related. So in the end, it will work out. The psychologist specializes in chronic illness in children so that is just what we need. Again thanks for all the support.
    Oh, excellent! What a relief. And what about her sister? Hoping she gets support too. This is also prophylactic.

    And you as well ("But I don't count.."). If not for yourself for those who need to lean on you. The situation with your mom, is almost too much even to learn about online. Living through it. being there, is unimaginable. And as you pointed out somewhere, her health problem is affecting your poor daughters too.

    Even the best marriages sometimes fracture from this kind of stress and pain. Counseling together might be a helpful too even before the need is obvious. Not that you have indicated any problems. This is just what the stats show.

    As for you, this kind of on-going hell can break YOUR back in one way or another. Sometimes I think stress broke mine. The scoliosis deterioration was just the outward sign of having ignored my needs because they were "unaffordable." A person can only be stretched so thin!

    Maybe the hospital has therapists for the whole family in various combinations. (Hey, can you tell I was trained as a clinical psychologist?)

    I think you're amazing. ("You mean I have a choice?" )
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

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