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Thread: Caitlin update/spinal fusion surgery!

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    Distinguished Community Member andromeda31's Avatar
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    Default Caitlin update/spinal fusion surgery!

    Hello!

    I am hating the new fb newsfeed so I decided to come back here and finally put an update out! :) We had a busy summer...Caitlin was having tons of drop seizures and did a 3 day VEEG in June. After that they started her on vimpat, which didn't really work out with her. A few weeks ago she was started on topamax and as of last thursday is up to the full dose (yay!). It is working great for her!!! It is so nice to be able to put out some good news! :) At first she didn't eat much (which they said could be a side effect), but she seems to be back to her usual amount of eating now. The irrational fits/tantrums have decreased since getting totally off the lamictal. She still has them, but it has improved. She still has about 6 more weeks of weaning off the vimpat....we only decrease 1/2 mL per week so slow going! She is back in school and we had her IEP right away. All is good there, no complaints. The biggest thing going on right now is fighting for her outpatient PT. We lost the appeal to MA (which was in June and we got the letter in September). Our primary insurer gives 60 visits per yr of which we had consumed 57 so I had to cancel all the rest of her PT appts for september since we had used up the puny amt MA authorized (26 visits). I also had to cancel some in October too as we only had 3 left. She is having botox in her ankles on october 17, so after that she will be entitled to 8 wks of PT @ 2x/wk so she will be back to her usual schedule then. Beyond that I worry though if we will be able to keep qualifying for 2x/wk PT at the clinic. The judges reasoning is that school should provide more PT. The school can't do the things they do in private PT though. I asked the school PT and principal to write me a letter detailing this so that I can submit that to the state when we do the next prior auth. I can't believe we lost the appeal...I had letters from ALL her doctors saying twice weekly was medically necessary!!! Don't doctors make the decisions?? (I know better, just whining!)

    Anyway, enough with the neuro update, now comes the rest of the body! We had an orthopedic appt in august where they took spinal xrays and discovered that her curve has progressed from 28 degrees a yr ago to 32 deg 6 mo ago to 42 now! I don't think the technique that they used for the xray was the best and I DID question it at the time of xraying. Of course, I am just the silly dumb mom and was brushed off. After they saw that on the films though, they started talking spinal fusion and all the stuff with that. I would love to hear any experiences any of you have had with this surgery!! Good or bad!! I was given info to decide between fixed and growing rods (VEPTR). The more I read and talk with people however, the more I feel like we never want to do this to her! The fixed will permanently stunt any growth in her trunk. Her legs will continue to get longer. This alone makes me cringe. Her legs are already screwed up from all that hip surgery. In my head since the stuff that went on in 2009, I had felt like, no more surgeries for her. We also put this in writing somewhat...had a meeting with the palliative team at the hospital and put our wishes into a legal document and all. I also will never do another surgery in the winter/school yr (if I have a choice!). The hip recovery was hard (in January both times) to be stuck at home and stuck inside. If we have to do this back one, it will be in summer when school & summer school are over (so July). That way she can do the recovery before school starts up again and at least go outside at home for a change of scenery and have more options of stuff to do while recovering...we have central air so it won't be hard dealing with temperatures (like they said the spica cast is hard in the summer was why we did that in january). Which leads me to our plan at the moment....

    Brian (hubby) switched chiropractors in the spring and where he goes now, they are more aggressive in treatment. Their philosophy is that they do spinal reconstruction vs. pain relief. I recently switched to them too now and the difference is amazing. Not trying to sell any of you on it, but just saying what my experience has been. Of course it costs more to go more frequently so we hadn't brought our kids yet. But after that spinal fusion stuff, we have decided to give them a try to see what they can do for Caitlin. I told them about the xrays (how I questioned them and all) and they took their own, they came up with 35 degrees on theirs...still progressing but not as bad as ortho thought. They said with the chiro treatments, they would for sure be able to stop it from getting worse and possible get it to get better by a few degrees. They did not promise us the moon! Which I liked, I would have been skeptical if they overpromised. It has only been 2 wks so far so not sure how much progress she has made, she enjoys going and getting adjusted and I don't mind taking her as they have morning appts available so we go before school and then I take her to school so it isn't any extra time out of my day. So basically we're going to do this for awhile and see what is going on and if by summer she is worse then surgery, if she is better or same, continue chiro adjustments, no surgery. But I would love love love if I could hear more of other people's experiences with that surgery so I can go in eyes wide open! I regret doing the hip stuff and I don't want to have regrets with this spine stuff too. :(

    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!!

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    Wow so much going on! Kathleen gets botox in her left ankle and it's been helping a lot. So many difficult decisions... I hope someone here can offer some experience that will help. Keep us posted...
    Mary Grace

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    We refused spinal fusion surgery for Tyler a few years ago. Went to all of his specialists and they all shook their heads like the idea was "nuts". Not one thought it would be in Tyler's best interest and that recovery for him (if he survived the surgery) would be beyond difficult because he seizes 24/7. We would have had to basically keep him sedated for weeks to allow the spine to heal. However, his kyphosis has severely worsened over the past six months so I have to assume his scoliosis has as well, he is in constant pain (we have no idea the source) and we have no options. I am making him a appointment to see the ortho as soon as possible to try and rule out his back as a source of the pain. Next week he is getting an MRI on his brain and to my surprise, on his thoracic spine, cervical spine and lumbar spine. Couldn't have come at a better time. I have no idea why the neuro ordered this, but am hopeful for more answers than we expected to get. These choices we have to make for our precious children defy even the wisdom of Solomon. Weigh the pros and cons, speak to your daughters other specialists and get their input cause this type of surgery doesn't just involve the back, it will affect many other organs as well. Wish I had some better answers for you cause I know how difficult this decision is.
    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."

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    Ethan had spinal fusion 4 years ago. Very difficult decision, but i'm so glad we did it. His scoliosis was interferring in his digestion, his breathing - and most of all his sitting and being comfortable. he could never get comfortable, not matter how many times a day I re-positioned him. He had 7 vertebrae removed, spent a week in traction and then had the fustion - we were home after the fustion within 2 weeks. When i have more time, i can add more detail if you'd like. As i said, tough decision - but for Ethan - it was the right one !

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    Distinguished Community Member andromeda31's Avatar
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    Thanks for the replies! Some additional info, Caitlin isn't in any pain from hers. The only thing I've noticed is that she doesn't seem quite straight when I seat her in her wheelchair. Now we know why! :) The surgeon's biggest opinion for doing it was cosmetic, that people treat you differently when you are slumped over in a chair vs sitting up tall (Caitlin is very social). But at this point, she is not obviously twisted up either so I am not wanting to rush into the decision. :) She does crawl ('army crawl style') around our house so the surgery would take that away from her which is a HUGE concern of mine. I fear it would further limit her choices of positioning. The hip surgery took away 'ring' sitting until very recently and she still can't quite get her legs right with that for very long periods.

    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!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin))))))

    Wonderful news that the AED changes are going well. May it continue to be so.

    My mantra is "Go With Your Gut."

    It sounds like Caitlin is benefitting from chiropractic treatment, and if she enjoys it, then it is certainly worth it to give it a try. Obviously, if you attain the goal of that therapy, Caitlin won't need surgery, or will at least be able to avoid it for awhile.

    Have braces been considered? Or a different positioning system for her wheelchair? Laterals to keep her torso straighter in the seat, hip correction in the seat? Or a vest? Do you have a regular wheelchair vendor, with whom you could consult, along with a PT, about possible adaptations to Caitlin's chair, which might help in preventing further curvature? Proper positioning can have a tremendous affect on halting progression of spinal problems.

    I've always wondered why PT is so precious that it is doled out in increments, and all of the doctor's letters in the nation can't persuade those in charge of covering the cost of PT. Many years ago, my boys were denied PT as part of the public school curriculum, because it was determined that they "wouldn't benefit from it." How absurd is that? Even healthy people would benefit from PT, let alone our kids with their multiple issues. I was up against that attitude 25 years ago, and it's sad to hear that you're fighting it now.

    I don't have any experience with spinal fusion, so I'm useless to you there. But I'm thinking of you, and praying that you will be guided to making the best and right decision for Caitlin. One that you feel comfortable with and can accept.

    Love & Light,
    Rose

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    Hey Lisa.

    That is wonderful to hear = get Caitlin to crawl, and then when she has finished, get her to crawl, and when she has finally finished get to to crawl some more. Great of vision, great for development and great for her spine = just great.

    hugs for gentle Caitlin.

    Paul, Alison and Grant the champ.

    Quote Originally Posted by andromeda31 View Post
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    ...She does crawl ('army crawl style') around our house so the surgery would take that away from her which is a HUGE concern of mine. I fear it would further limit her choices of positioning. ...
    Lisa O.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Excellent questions Rose! :) We are actually going to visit the seating clinic on Oct 17th too (she will also get botox in ankles that day). I am excited for that visit! Her current wheelchair I am not really in love with. It is 3 years old and the tread is completely worn off the tires. We are still waiting for prior auth from this summer to get that fixed. (crazy!!!) This will be our first time ever in the seating clinic in milwaukee so I am hoping they will have some good suggestions. The Dr really wasn't impressed with her current chair either and said he was going to get prior auth done before our visit and he would determine what kind of seating based on what we do surgery-wise. Her current chair is really heavy for me to lift so it would be nice to have something lighter and that was actually easy to fold up for transporting in the vehicle. Right now I lift it (with my arms, lol) into the back of my minivan...all 70lbs of it! The wheels pop off, quick release, otherwise it would not fit in there. Anyway, not sure yet if they will ok a new chair, or just make changes to what we have.

    Paul...got my copy of What to Do with Your Brain-Injured Child on my bookshelf! :) I think the crawling around really helps her feel independent too, in addition to all the strengthening it does for her! I just can't imagine taking that away from her.

    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!!

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    Yay. Lisa. Yay Caitlin. go, Go. GO

    Not only will the crawling help in so many ways it will also help with just about every function.

    As you know we did the Glen Doman stuff 100% for nine months (when Grant was 18 months old) = 7 hours a day for initially 7 days a week and then 6 days a week.

    The changes in Grant were dramatic to say the least.

    We phased him off all, that is ALL AED's with the result that he went from initially having updwards of 13 (thirteen) tonic clonics a day, and over 100 (one hundred) severe myoclonic jerks that made him cry, to no seizures at all :) He went from being absolutely miserable and crying most of the time, to a happy contented baby :) I could write many paragraphs of the improvements we had, but I am sure you remember :)

    The book is the Bible when it comes to brain injury and recovery. Should be mandatory reading for every ped neurologist. And all ped med students should be required by law :) to go and spend a month at the Institutes. Then they would really learn something about seizures, and seizure control. There I have said it again. Now I will be quiet.

    ENJOY the book Lisa and get cracking with sweet Caitlin crawling.

    With love and hugs of course.

    Paul, Alison and Grant the champ.

    Quote Originally Posted by andromeda31 View Post
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    Hi!

    Paul...got my copy of What to Do with Your Brain-Injured Child on my bookshelf! :) I think the crawling around really helps her feel independent too, in addition to all the strengthening it does for her! I just can't imagine taking that away from her.

    Lisa O.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    (((((((Lisa & Caitlin))))))

    Wheelchair seating clinic ~ perfect timing! :)

    That's just obscene that you can't get the tire tread replaced. The tires are truly an important part of the entire system, and they should have proper tread to prevent accidents. Bald w/c tires can be unsafe. Perhaps if you stress that point, they might hurry up the auth. Grrr ... insurance ... or Medicaid as we have ... An ounce of prevention is worth a pound of cure. That truism is lost on them.

    But now, you're going to the w/c clinic, where the tires will be addressed, along with the seating system. There are so many different options with w/c's now. Jon has a Quickie Tilt in Space/Recline, with fantastic head rest, laterals, foam separation piece for legs ~ the works. He's upright in it and cannot slump over. When his head lags, we tilt back a little. To give him rest, we recline completely for a couple of minutes.

    With the correct positioning, you will be amazed at the improvement in Caitlin's posture.

    Be sure to share your transportation issues with the vendor and PT at the w/c clinic. That can be factored into the design of the chair, with more removable parts. They also might be able to suggest a portable ramp for you to use with your mini van so that you don't have to lift the chair at all. I remember lifting one chair into the trunk, and the other chair into the back seat of my 1980 Corolla. That will wear you out fast! :) So, for your well being, which is important to Caitlin's well being, the easiest and safest manner of transporting the chair should be considered.

    I recommend creating a list of all of the things you'd like to see in Caitlin's wheelchair to take with you to the clinic. Including color (always my hardest decision ).

    Good Luck! Keep us posted!

    Love & Light,
    Rose

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