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Thread: Poor results after second revision surgery for coninuing infection

  1. #31
    Join Date
    Mar 2010
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    Midwest
    Posts
    106

    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

  2. #32
    Join Date
    May 2008
    Posts
    169
    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.

  3. #33
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Prayers or posiitive thoughts please!!!!!!!!!

    I know I have been a pain in the neck for every one here but I would like to ask anyone willing to send prayers and or positive thoughts to; my daughter and aour family. My mother died yesterday peacefully. I am trying to make plans around my daughter''s surgery which is Tuesday, August 31st.
    I am hoping that will allow her to have some type of time with her grandma.

    One relative has already said we should cancel the surgery! I have been waiting since May to get this hellish period of our life over with and can't believe anyone would have the gall to surgest that. M.'s curves continue to get worse and her reliance on pain meds is scary enought that she has asked to get professional help with the withdrawal symptoms.

    I have had to deal with unpleasant family issues and in a weird way - the surgery will remove me from them and hand them into the arms of the family lawyer.
    So thanks for reading this.!!!!!!!!!!!!!!!!!!!!! I am sorry for any craziness. I just need grace to surivive this and the loss as well. Mary

  4. #34
    Join Date
    Jan 2008
    Location
    NC
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    8,903
    Mary, I am so sorry about your mother. That is a huge loss compounded by it happening at a time when you are dealing with your daughter's surgery. I will be thinking of you. Stay strong.

    Of course you are right to go ahead with the surgery. You and your family need to get this surgery behind you. It's been drawn out for far too long as it is. Tuesday is the day. Great that your other twin will be there as will the other set of twins. Throwing twins at a problem might be just the trick!

    Good luck.
    Last edited by Pooka1; 09-04-2010 at 11:18 AM.
    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. #35
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Mary,
    I will pray for you and your family. I kind of know how you feel. My Mom died the same day my husband was having surgery and I was working in the blood bank that day and couldn't leave my bench until the evening tech came in at 5:00 PM. Everything all at once, but you will get through this. I don't understand how family members can be so insensitive to your needs or the needs of your daughter.
    God be with you. 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.

  6. #36
    Join Date
    Oct 2009
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    PA
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    798
    Quote Originally Posted by twinsmom View Post
    I know I have been a pain in the neck for every one here but I would like to ask anyone willing to send prayers and or positive thoughts to; my daughter and aour family. My mother died yesterday peacefully. I am trying to make plans around my daughter''s surgery which is Tuesday, August 31st.
    I am hoping that will allow her to have some type of time with her grandma.
    I hope so too. My condolences on much much more than anyone should be expected to field, least of all piled up the way it's been coming at you. It must just stop seeming quite real after a while....Ones mind just needs to draw some kind of veil across events to give us a semblance of peace.

    One relative has already said we should cancel the surgery! I have been waiting since May to get this hellish period of our life over with and can't believe anyone would have the gall to surgest that.
    Shame on that cruel crackpot! Just try to blow it off and don't deplete your energy with anger, if that's possible. Those who understand (us) KNOW this "relative" - such quotes help me deal with my feelings about fraudulent family - is a moral, psychological freak. Hopefully, this is temporary and grief-induced.

    M.'s curves continue to get worse and her reliance on pain meds is scary enought that she has asked to get professional help with the withdrawal symptoms.
    How sad for her to deal with this too, but how wise beyond her years to recognize she needs help....Hope she gets it (the depression can be killing!).
    And to think how many kids her age are taking such drugs for kicks!

    I have had to deal with unpleasant family issues and in a weird way - the surgery will remove me from them and hand them into the arms of the family lawyer.
    I can remember quite a number of times I looked forward to surgery because I knew I'd get a short nap for the duration...Pathetic the insomnia I worked up to!
    So thanks for reading this.!!!!!!!!!!!!!!!!!!!!! I am sorry for any craziness. I just need grace to survive this and the loss as well. Mary
    Nonsense about "Craziness" and apologizing for such. If you weren't able to go a little so-called crazy under this degree of stress, you'd REALLY go crazy. (Well, it makes sense to me! )

    I do wish you the grace of God to get through this. There is no other way, when we're in so totally over our heads. How else do we stand the unstandable? And yet we do - and more than once. "One foot ahead of the other and call it walking..."

    God bless you and your family, Mary. Hugs and comfort.

    This is time of the "High Holidays" in Judaism. If you have a Jewish friend to take you (or even if not) you might try to attend one of the services - with enough English to follow the basics. I recommend the beautiful "Kol Nidrei" prayer at the start of the Yom Kippur evening service.

    These help me center the year, and the cycles of Life. They call Yom Kippur the Shabbat Shabbatot - the "Sabbath of Sabbaths". Means that just as the Jewish innovation of the Sabbath centers the week (and by extension, time), so this annual stock taking, orients our entire year (and time)

    Observant Jews wear simple white tallitot (prayer shawls) to remind them of mortality In fact, these special shawls are also their shrouds and someday they will be wrapped in them, when the time comes.

    Even listening to the Kaddish- the prayer for the dead, and reciting the English translation for Kaddish for Mothers may give you some needed comfort. I hope so. Jews are good at having prayers for everything! Sometimes a little borrowed tradition can be comfortingly adopted in time of need. And such comfort certainly belongs to no one Faith or tradition.

    Shalom!
    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

  7. #37
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Mary,
    I am so sorry for your loss. You have much to deal with. Don't worry about the relatives. My husband's brother became gravely ill 2 days before my surgery. My husband said we can't change it & stayed with me. It caused some major tension but they never understood the scope of the surgery to begin with. You are doing the right thing. Many prayers for you, your daughter and family. Good luck. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  8. #38
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Gratitude

    Thanks so much for all the support. Things are settling down. I think we all are anxious but holding up very well. The girls have their support plans in place.I really am hoping we are blessed with Maddie's successful surgery! Send prayers and postive thoughts!!!!!!!!!!!!!! Thanks again. Mary

  9. #39
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Look's Good

    We are several days post op and things are looking positive! No signs of infection!!!!!!!!!!!!!!!!!!!!!!!

    Spoiler this inext paragraph is the not so great things that happened. We surivived. Don't read unless you don't mind thinking of the not so great things that happen.

    The surgery was long over 6 hours and part of her spine was fused ( I wasn't surprised) but they seemed to be able to work with it. I think everyone is and are optomistic.Wont be as tall as sister - they think- She did n't want any or a epidural - first surgery she had two and she heard what happened to her sister when there was a complication with the epidural removal. Another rare thing we seem to catch. Pain management was involved - took awhile to get everything worked out - second day was the worst because she needed a blood transfusion - another rare ting thing with concern with antibodies so they were holding off as long as they could.
    IV site had a blow out and then she needed oxygen because the meds were causing lower resperations. We called the docs office where he was for the day and spoke with the nurse. She knows how to tell people the specfics of her pain and concerns much better than if she relays it to me.

    Now she is finished with the transfusion - looking good off oxygen and pain free. She has walked to the bathroom and had x rays standing by herself.

    She will be wearing a her brace from before. We recycled! My idea and it worked!

    She has a great problem with ongoing yeast infections because of the antibiotics. Any ideas?
    She also should be able to make it to some of my Mom's wake and reception!
    She had a great time with Child Life and had a healing service with Reiki with two of the Hospital Chaplins- incluiding a Seeing Eye dog!
    Thanks for anything thoughts and prayers. It went better than I had hoped!!!

  10. #40
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Well Maybe Not

    Just when we thought we had jumped the last ring - we have a new issue!
    I am here in the hospital and don't know what to do.

    It is a three day holiday and things are slow. My daughter has now developed a definte lop in her gait- she says because it feels like one leg is shorter than another. OT saw heridn't saymuch but did see it. No PT until tommorrow. No attending until Tuesday unless I make a fuss.

    I am so fried with playing hospital games - listening to all the pro and anti doc views, deciphering between ID and ORTO - ID is out of the picture now - I asked for a second opinion a dconsult along with the Ortho just in case we decided to go with the consult who then in turn changed their minds and did a ten minute lecture on whether or not to have this surgery. I don't have an idea why the med port was dropped since I was at the proverbial death bed of my mother.

    The Yeast infection continues - as the belly distension - she may have an illeus or maybe not.

    My husband doesn't percieve the leg issue as a problem- he has a small dif in leg legnth but it's really nothing. Although I have my own issues - he is not really a strong partner in micro and macro managing all of this. I feel my head spinning with all that I am dealing with. Any ideas, thoughts - please send!
    Mary

  11. #41
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Quote Originally Posted by twinsmom View Post
    Just when we thought we had jumped the last ring - we have a new issue!
    I am here in the hospital and don't know what to do.

    It is a three day holiday and things are slow. My daughter has now developed a definte lop in her gait- she says because it feels like one leg is shorter than another. OT saw heridn't saymuch but did see it. No PT until tommorrow. No attending until Tuesday unless I make a fuss.

    I am so fried with playing hospital games - listening to all the pro and anti doc views, deciphering between ID and ORTO - ID is out of the picture now - I asked for a second opinion a dconsult along with the Ortho just in case we decided to go with the consult who then in turn changed their minds and did a ten minute lecture on whether or not to have this surgery. I don't have an idea why the med port was dropped since I was at the proverbial death bed of my mother.

    The Yeast infection continues - as the belly distension - she may have an illeus or maybe not.

    My husband doesn't percieve the leg issue as a problem- he has a small dif in leg legnth but it's really nothing. Although I have my own issues - he is not really a strong partner in micro and macro managing all of this. I feel my head spinning with all that I am dealing with. Any ideas, thoughts - please send!
    Mary
    Mary...

    Even if the leg problem is something structural, it's hard to imagine that it would be an emergency.

    Hang in there and try to stay calm.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  12. #42
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Wonderful News to Report(finally!)

    My daughter is back home and stood next to her twin and she is actually taller! So if the back holds out - which I really believe it will - she is home free! She is wearing the same brace she used after the first surgery!
    And she is coping with the pain as well as can be expected.
    So I really think this nightmare is falling to the wayside and will be behind us.
    Thank you for all the support!. And oh yes, her gait is getting better and better as time passes!! So now everyone can be aware that having multiple revision surgeries due to infection can be overcome! Mary

  13. #43
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Mary,
    So glad to hear the good news. Your daughter is a trouper and you are as 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.

  14. #44
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    What a happy reversal. Mary! God grant it continues. Catch your breath meanwhile - long slow breaths to help YOU recover. You sure have shown whomever, that you are made of simply incredible grit!
    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

  15. #45
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Great news, Mary!

    Your road with scoliosis was longer for some random reason. We are just flotsom on the sea of life. There is no apparent rhyme nor reason.

    Good work on your daughter's part, your surgeon's part and your part. The victory belongs to the three of you.
    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."

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