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Thread: Poor results after second revision surgery for coninuing infection

  1. #46
    Join Date
    Nov 2009
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    Colorado
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    390
    After reading your posts for months, I can't tell you how happy I am to read your last few entries. You have endured so much.

    Please continue to brief us here and let us know how everyone is doing, including and most important- yourself.

    Wouldn't it be amazing if for awhile life slows down, is uneventful, maybe even boring would be nice I hope that for you!
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  2. #47
    Join Date
    Mar 2010
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    Midwest
    Posts
    106

    More good news!

    My daughter had her post op visit and all looks well. She even handled a short trip to the clothes store yesterday. There is still an issue with her left arm and left hip tingling and and pain/weakness. But she complains about these less and less as the days go by. Thanks again to everyone who have followed us and sent thoughts and prayers and such kind,kind words. Mary

  3. #48
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Glad to hear she is doing well.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  4. #49
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    No Bacteria!!!!!!!!

    After so many months my daughter is bacteria free!!!!!!!!!!!!!!!!!!!! No more antibiotics!!!!!!!!!!!! This is with belly and earing piercings - which did start to get slightly infected in the hospital. How could one say no to a good student and stays away from all things bad? But the blood work looks great!
    Thanks again to all!

  5. #50
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    I'm so glad to hear your daughter is bacteria free! Good news!!!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  6. #51
    Join Date
    Mar 2010
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    Midwest
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    106

    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

  7. #52
    Join Date
    May 2009
    Posts
    3,745
    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 04:14 PM.

  8. #53
    Join Date
    Sep 2009
    Posts
    146
    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

  9. #54
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by twinsmom View Post
    This twin hasn't been in school since January.
    What have other teens/young adults done regarding school returns?
    I don't think any testimonial about a single first time fusion will necessarily apply to what your one daughter went through. I think all bets are off unless the surgeon specifically said it would be a similar recovery as after the first fusion.

    How have other docs handled this issue?
    Again, I don't think any of that applies. Our surgeon said kids are usually back in school at three weeks and by four weeks. I do not think that applies to a kid who went through a fusion, had the instrumentation taken out and then re-inserted.

    Was PT involved re chair use?
    Neither of my kids had PT but I can tell you they would not have been released from the hospital if they couldn't get into and out of a chair.

    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!
    How is her coronal and sagittal balance after the second fusion compared to after the first? About the same?

    How long has it been since the second fusion?

    Our surgeon never told us when my girls should go back to school. He leaves it up to the kids.
    Last edited by Pooka1; 10-11-2010 at 09:02 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."

  10. #55
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    Jan 2008
    Location
    NC
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    Okay I found the date for the second surgery... August 31.

    So she is at 6 weeks. You have to ask about the usual recovery trajectory for a patient like your daughter. I have no idea what that might be.

    It is impossible for any of us who don't have a kid who went through fusion in Late March 09, had the instrumentation removed at some point (January 2010?), and is now 6 weeks out from the re-instrumentation.

    I will just say that I have some concern that she has missed so much school. I hope she can graduate on time. Jess and Dee know a bit about this issue I think.
    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."

  11. #56
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Another long one

    Hi, Thanks for the comments. Sorry - MFE stands for Multi Factored Evaluation the meeting and tests used to show a need for an IEP. She passed. This time she can come to school and still have home tutoring.

    It was awful last school year. She dropped her GPA there was much missed work and inflation of grades in other subjects. She couldn't do it all.
    Lab work was missed and when she was well enough to come - after school she was physically unable to do it because of the kyphosis. The Chemistry Teacher took a picture. She doesn't have to make up some work but does in other. It has been dependent on the teacher.

    There was no IEP. I had to call the Superindent. The tutor is a very nice woman but she is dependent on kids staying home so she has work. She was insturmental with the first surgery and then the second for the push to stay home.

    Meg will probably make NHS but Maddie won't because of last year.

    Oh yes, the district intially didn't want to give them home tutoring. They said essentially they would get all A's for the time. I didn't want that because
    I thought it would be better to have them challenged instead of just laying around. So I feel quilty in some ways. It would have helped in the college app.
    but wouldnd't have taught them honesty and the need for endurance in work.

    After 6 weeks after first surgery, there were four weeks extra at the very end of school. They stayed home for that.They did fine in the fall.
    Maddie however had P Acne in her symstem( we think )from the first surgery in March of 09 on through this April -over a year. She seems so much better than anytime since last summer. And she's doing things so despite the scenario- she may have physically moved past that. We will see what ID says next week. Pain is a symptom for bacteria as well as Low Grade Fevers - she has the pain but is stilll taking heavy duty meds and she has had some LGF 's hopefully related to school crud from Megan.It's a good thing to think about! So thanks for bringing it up.

    We have the chair issue - both complained that getting in and out were hard
    I don't know if I should push. They are adamant that it is very hard.

    HS Credits are a concern because she hasn't been in school since early Janaury. She did the semester exams but in extreme pain so her scores are lower. She is only taking three courses now and a really full scheduale next semester.The school is aware and trying to make graduation a do able thing.
    You have to push them which is hard because I have been dealing with so much. But I did it and will continue.

    School would like her to come in for two classes and possibly stay for lunch.
    She would have PRN access to a bed if need be and they can get a PT evaluation regarding the chair that she and her sister are so afraid of.
    It seems there are other teens who have gone back to HS. I wonder why our high school chair design is so problematic for them.

  12. #57
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Something worrisome about the other twin

    Hi again. My other daughter has been complaining of pain off and on. At a neuro exam for headaches, they had her touch her toes and on her back a hard bump came up which hurts when it is touched. We were told to see ortho and now we are afraid that we are seeing another round of surgery.
    Does anyone have a bump that comes and goes on bending? It the upper right shoulder area near her incision. The other daughter now has an expansion of her surgical scar it - and it looks like maybe stitches coming out of that area in it's middle.
    I think I am going to be mean and demand an appt for tommorrow. I will let you know what happens. Send positive thoughts and prayers please! mary

  13. #58
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    Consider them sent! You and yours already have automatic special delivery access from this data point for whatever it's worth.

    ...Also a personal "oh, no" at the mere thought of MORE strange and unusual symptoms... At the end of all this, you've got to wangle a visit to Oprah if nothing else - provided she's still on the air. A young friend of mine is offering/warning she's going to write in for us, and our circumstances are no where near as dramatic as yours'.

    But remember, you HAVE to not only land on your feet - all of you - but with a new uplifting message of overcoming insurmountable odds ("How you, yes you too can do likewise, if only you follow my Miraculous Seven Steps to Victory...on your local new-stands in time for holiday gift-giving!")

    Sure you can dash that off in your sleep, Mary!
    (Shaking a fist at the Almighty)
    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

  14. #59
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Thoughts

    Well everyone, the girls are coping well with things as they are. Surgery will probably happen but after Basketball Season. Meg is just continuing on with the pain. Maddie is dealing with the infections she has been getting. And she already wrote to Oprah and never heard anything. But she tried! I am trying to loose weight and walking the dogs twice a day. Someday I will gaze out the window and see my grandchildren running around and hopefuly by then they will have found better ways to either stop or treat Scoliosis and Kyphosis.

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