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Thread: Spine Surgery

  1. #1
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    Default Spine Surgery

    The specter of spine surgery has arisen once again. We have always said no to surgery in the past. We just didn't want to put Tyler through the trauma, the pain, the weeks or maybe months of recovery, the risk of infection, the risk of death from the surgery alone. However, Tyler's scoliosis and kyphosis have progressed 8 degrees in the past six months (I don't even remember the numbers we were given yesterday cause I am numb). We are facing him not being able to sit in a wheelchair and being confined to a bed for the rest of his life if the progression continues. This not only traps him, but us as caregivers. We are torn over what to do. How do we transport him to doctors visits, go on a trip, get him out of the house, visit our cabin in the mountains, let him sit in the sun???? Anyone else facing this, or have faced this reality?
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie & Tyler))))))

    My heart goes out to you. What a difficult situation and decision.

    Have the doctors discussed the magnitude of the surgery and recovery process? Have they speculated on Tyler's risk as opposed to the benefits derived from surgery? Have they discussed the risks associated with not having the surgery, as in lung problems or other organs being affected by the curvature? Have they talked about the success rate of the surgery in patients similar to Tyler? The need for any surgery in the future?

    I gather that all options to halt further progression of Tyler's curved spine through non surgical methods have been attempted. Bracing, wheelchair positioning, etc. But are there any other non invasive options or solutions?

    From my experience, physicians, especially specialists, who have their own way of managing certain conditions, often don't think outside of the box. Not all, of course, but plenty. So, I'm just tossing that out there for you, in case it is worth asking these doctors whether there are other, less invasive options for Tyler.

    Your dilemma is so complicated and difficult, Tamie. With or without surgery, Tyler's quality of life will be affected. This is where the risk/benefit analysis is so important in your decision making.

    I haven't had to make this particular decision for my boys, but I've made many decisions where I've had to weigh the pros and the cons, and it is wrenching.

    As I always say, "Trust your gut."

    My prayers for you continue, and I will ask for Divine Guidance for you in this decision.

    May God grant you peace and strength.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    So sorry you have to make this decision. We are in the same place. Caitlin's curve (by their xrays) has worsened about 10 deg (if I remember off the top of my head right). It is in the 40's. The only way I notice it right now is if I put her in her w/c, she seems not quite straight at first. We are not rushing out into this surgery either....in fact, we started taking her to a different chiropractor. They took their own xrays and came up with 37 deg curve....still progressing but not quite at the same rate as the hospital got (and I had concerns there on the way they took the xrays.). Chiro felt they could for sure stop it from worsening and maybe make a bit of improvement. They didn't promise us the moon which I found reassuring. I have been bringing her 2x/wk now for a few months. It is going well, haven't had a repeat xray yet to know for sure what is going on...but she doesn't seem any worse and when the seizure stuff was under control, she seemed straighter when sitting in her chair. I have talked to some people locally that have had the surgery done and they had not good stories about it. I also talked with Tracy (Megan's Mom) about their experience....which was a good one. So it was nice to hear 2 sides. We as a family have decided to wait until we HAVE to do it...until it is bad enough to affect sitting and breathing functions and such....where that awful surgery will seem palatable compared with leaving it be. I wish we had done that with the hip osteotomy so that is influencing this decision. I remember people telling me their bad stories about that but we did it anyway as the doctors know best right?....I don't want to have regrets like that with this spine surgery so that is why I made that decision to wait until it has to be done. Hope this helps some! :) It sucks making these choices....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  4. #4
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    hi Tamie.

    We are very sorrry that you are facing such big decisions.

    Here is what happened with Grant.

    When Grant was about 16 1/2 we had mim evaluate for the spinal surgery. his neurologist was all for the surgery, but we wern't that sure.

    Grant was seen by the top surgeons at the children's hospital, a spinal surgeon and a hip surgeon.

    At the time the pros and cons were.

    PRO

    If the operation was successful, the scoliosis would be controlled.

    CONS

    Absolutely no guarantee whatsoever that the operation would be a success.
    Because Grant had a PEG, the operation would be a double operation lasting many hours.
    Grant might not survive the operation.
    Because of the very low poistion of the scoliosis, the hardware would be very difficult to attach. It would be a very complex operation.
    Because Grant had major tonic/clonic seizures, post operation care would be complex as Grant would have had to be in a cast for many months.

    The surgeons were very much opposed to the operation.

    We agreed with them and did not push for Grant to have the operation.

    Grant, now that he is 23 years old, is no longer a candidate for the operation.

    GRANT'S SPINE TODAY

    Grant has a profound scoliosis at the base. About 3 years ago we had him re-evaluated, not for a spine operation but just to see how Grant was managing.

    The surgeon made a strange statement. He said that there was good news and bad news.

    The good news was that because Grant's spine was so bad (90 degrees at the base), it couldn't get worse!
    The bad news was that an operation was out of the question!

    Unfortunately over the last 18 months, Grant's scoliosis has worsened, because he now needs a lot of suctioning. He is not in any pain though :)

    We are glad that we did not go ahead and push for the operation.

    There are success stories and stories of bad outcomes. Our own experience with folk is one of bad outcomes. A young lady now, who was in Grant's class when he was at school, had the rods put in. The rods became infected and had to be removed (I believe that is what happened).

    The head child physiotherapist at Grant's old hospital, once told us that she had seen many children who had the rods put in. The operations were 'successful' in straightening the spine. BUT, it was now almost impossible for the children to sit in wheelchairs!

    Tamie, God will direct you very clearly as to what you are to do for master Tyler. God will bring you a peace which passes all understanding.

    With all our love to you and God bless.

    Paul, Alison and Grant in total championship mode :)

    Ps. how is your health these days?
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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