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Thread: Bad news

  1. #1
    Join Date
    Jul 2009
    Location
    Missouri
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    Bad news

    My sons surgery scheduled for next week, after doc reviewing his CTs from last week, they decided the area where he has his spinal shunt missing alot of bone and they want to fuse higher, like T3 or4 , then the possiblility or she sounded like more then likely in 2-4months do a anterior fusion,,,I told them no way Im not going to keep putting him thru so many surgeries .. I dont know what to do now.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    7,187
    Quote Originally Posted by CamsMomKelly View Post
    My sons surgery scheduled for next week, after doc reviewing his CTs from last week, they decided the area where he has his spinal shunt missing alot of bone and they want to fuse higher, like T3 or4 , then the possiblility or she sounded like more then likely in 2-4months do a anterior fusion,,,I told them no way Im not going to keep putting him thru so many surgeries .. I dont know what to do now.
    Hi Kelly...

    I'm a little confused. Since Dr. Bridwell is male, who is the "she" to which you refer?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  3. #3
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    sorry I wrote this in a vent...Bernie his nurse is the one who actually called to run this by me.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  4. #4
    Join Date
    Feb 2010
    Location
    Ohio
    Posts
    200
    Kelly,
    I can only imagine how frustrating it must to be have a "change in the game plan" proposed so close to your son's surgery. I really have no advice, other than to follow your heart and gut. I am thinking about you both and praying for a good solution.
    Kathy
    46 yrs at surgery, now 50
    71 degree thoracolumbar curve corrected to 34 degrees
    8/2/2010 surgery with Dr. Lenke

    posterior T9 to sacrum with pelvic fixation

    4 osteotomies and 1 cage
    http://s1066.photobucket.com/albums/...athK_08022010/

  5. #5
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    TY Kathy, its not so much they want to fuse higher that bothers me ( although this was supposed to be a more conserative approach then his regular ortho suggested) its the fact that in couple months they want to anterior approach a 53 degree curve. I could see if it were severe curve or there wasnt all these reports out there that the pedicle screws are eliminating anterior/posterior... to do this again in couple months is out of the question I think IM pretty set we wont be doing his surgery next week if they cant come up with better plan. I know his doctor is supposed to be one of the best but I will get another opinion.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  6. #6
    Join Date
    Jan 2010
    Posts
    100
    Don't be afraid to ask for a second or even third opinion if you're concerned. ALL of the parents I spoke with during our hospital stay had done this.

    Isn't 11 very young for a boy to be getting a fusion surgery?

    I met a family from Vancouver whose daughter was also 11. Their daughter had growing rods inserted when she was 9 and was there for her 6 month adjustment. After speaking at length with her mother, their daughter will have to come back every 6 months to have the rods adjusted until she's stopped growing. At that point their surgeon (same as ours) was going to do a final fusion/rod insertion.

    Her parents were questioning having the final fusion done since all of the hardware keeping her spine straight is already in place and doing its job. Granted, their daughter was the first patient that our surgeon (we both have Dr. D'Astous), had performed this surgery on, so she is a bit of a test case.
    Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

  7. #7
    Join Date
    Jul 2009
    Location
    Missouri
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    His orginal ortho he was seeing wanted to wait until he got older, I went to the current one now for second opinion he said oh no he is rapidly increasing we need to do this now he will loose more in height if you let the scoliosis continue and by the time he grows you will be looking at a 90-100 curve that will be harder to fix ??????? They said he is too old for growing rods and stapling too old and curve too large. I guess they are figuring the same if they do the rods they will eventually have to do the final fusion, they are listing him more as neuromuscular scolio then idiopathic.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  8. #8
    Join Date
    Mar 2009
    Posts
    1,090
    I'm not a doctor, but it sounds like the anterior fusion would be done to prevent the possibility of crankshafting for a boy of that age.

  9. #9
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,187
    Hi Kelly...

    It sounds like your son has something relatively unusual about his spine, so I'm not sure you can apply the normal rules to him. Dr. Bridwell certainly knows what he's doing, so I wouldn't necessarily dismiss what he has to say. Maybe you can get an amergency appointment to try to get a better understanding of what's going on.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  10. #10
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    I finally got everthing worked out with the doctor , we still have a final appt on Monday but I talked with him on the phone as he discussed with me his concerns. He isnt concerned of the crankshafting, it is what Linda said. My son had a holocord syrinx diagnosed at age 4, last year he had a syringoplerual shunt placed , in order to do this his neurosurgeon did a laminectomy on level t7-t8. Dr B is now concerned with the stability of those levels. He has now changed the surgery to T4-L4. He cannot guarantee at t7-t8 there is enough bone to hold and fuse or break the instrumentation so we should know more during the surgery or after if those two levels need to be addressed in another manner. He is going to try his best to get a good stable fusion with what he has to work with. My sons surgery wont be the typical fusion and is going to take some time and tedious work around his shunt, neurosurgery is on standby if needed. Its going to be a long day next week.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  11. #11
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,298
    Quote Originally Posted by CamsMomKelly View Post
    I finally got everthing worked out with the doctor , we still have a final appt on Monday but I talked with him on the phone as he discussed with me his concerns.
    It sounds like Dr. Bridwell has a well-thought out game plan. He one of the top guys as far as I can tell so your son is in great hands. These guys are geniuses.

    Good luck next week.
    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. #12
    Join Date
    Mar 2009
    Posts
    1,090
    Quote Originally Posted by CamsMomKelly View Post
    I finally got everthing worked out with the doctor , we still have a final appt on Monday but I talked with him on the phone as he discussed with me his concerns. He isnt concerned of the crankshafting, it is what Linda said. My son had a holocord syrinx diagnosed at age 4, last year he had a syringoplerual shunt placed , in order to do this his neurosurgeon did a laminectomy on level t7-t8. Dr B is now concerned with the stability of those levels. He has now changed the surgery to T4-L4. He cannot guarantee at t7-t8 there is enough bone to hold and fuse or break the instrumentation so we should know more during the surgery or after if those two levels need to be addressed in another manner. He is going to try his best to get a good stable fusion with what he has to work with. My sons surgery wont be the typical fusion and is going to take some time and tedious work around his shunt, neurosurgery is on standby if needed. Its going to be a long day next week.
    That's wonderful that they don't need to worry about crankshafting with the hardware systems they use now. Glad to hear it!

    Your son's definitely in great hands, so try not to worry too much. I know that would be so hard not to do. I'll be thinking of Cameren next week!

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