A Surgery That Could Fix Everything: Selective Dorsal Rhizotomy

I truly believe that we all process things, and have people come into our lives on a specific timeframe, that is very specific to our own needs. This year I've really moved forward with wrapping my mind around the fact that Kinlsey has cerebral palsy, even though her main diagnosis is holoprosencephaly. As I've done that, I've been better able to understand the "why" behind her leg braces, the botox injections, and all the things that go into her care and how her body works. 



A few days ago on Instagram, I was commenting on how Kinsley's botox injections have worn off, and how we can't get them done for another six weeks since we're going to be out of town when she was supposed to get it done next week. I asked if anyone had any tips to stretch her leg out in the meantime so she wouldn't be such a huge toe walker, and someone told me about Selective Dorsal Rhizotomy. 

Essentially, this is a surgery where they go in and remove all the damaged nerves along the spinal cord that are causing Kinsley's tightness. Once all the nerves are gone, no more spasticity, no more toe walking, endless possibilities! I texted Kinsley's PT and asked him why he never told me about this! (Apparently he did a year ago, but I didn't think my kid had CP at this point and was wondering why this guy was talking to me about CP when it didn't apply to my life and tuned him out... haha good thing I came around!)

There is a surgeon in St. Louis who does the surgery and is the best in the entire world. There are families from literally all over the world that come to America just to have him do the surgery. We also have a doctor here in Utah who does the surgery at Primary Children's Hospital, but we've been told the evaluation process in St. Louis is much better. Our first step would be to have the evaluation done in St. Louis, see if they say Kinsley is a good candidate for the surgery or not, and then decide from there if we want the surgery done in Utah, or in St. Louis. 
We've been told that whoever does the surgery whether that's here in Utah or the doctor in St. Louis, that part doesn't really matter, but this doctor out of state is apparently much better at knowing which kids will do best with the surgery. 

Pretend you have a rubber band and you pull it as tight as it can go. That is Kinsley's leg muscles, always tight and constricted. Now pretend that you've cut the nerve at the spinal cord that's making the rubber band super tight. Ideally, you'd like the rubber band to go back to normal, and look like a normal, relaxed rubber band. In some cases, when they cut the nerve at the spinal cord, it breaks the rubber band, and the rubber band becomes useless. 

The doctors in St. Louis will be able to look at Kinsley, and how she currently uses her body to see if she has enough base strength and control of her muscles, that when they cut away the spastic nerves, all her "rubber bands" or muscles will relax and go back to normal, but still be functional. They'll also be able to tell if she doesn't have enough control of her muscles, and that if they cut away the spastic nerves, if it would just turn her muscles into broken rubber bands that are useless and no longer able to be used. 

The latter part of that has sadly happened to many kids who have had this surgery. The parents went into it thinking that it was going to be this miracle that fixed their kids, when in reality, they didn't have enough base strength and control of their body without the spasticity, and once they snipped those nerves, the kids never walked again, and were wheelchair bound forever because they weren't good candidates for the surgery. This is why that initial evaluation in St. Louis is so crucial. 

There are many reasons why we're excited at the prospect of this surgery for Kinsley. In our minds, this is a one and done surgery that would fix all her other problems, and remove the need for another surgery in the future. 

If they turned off her spasticity, her leg muscles wouldn't pull on her hips so tightly, and her hip dysplasia would likely resolve itself. If we turn off the spasticity, her hamstrings won't be so tight, so we won't have to go in and do hamstring lengthening surgeries (that aren't permanent fixes and would likely need revisions). If we turn off the spasticity, we wouldn't need to do a spinal baclofen pump in the future, which would likely also have to have future revisions or surgeries in the future. 

Up until this point, every surgery we've talked about for Kinsley has just been a means to fighting spasticity that we thought was going to be this permanent cloud hanging over us. Never really solving the problem, but masking it for a period of time. The selective dorsal rhizotomy though is the end solution to all spasticity, and eliminates the need for anything else in the future. Derek and I aren't huge on the idea of surgery at all, but if this can be a means to preventing all other surgeries, and can give Kinsley a better quality of life, and potentially independent walking (or at least walking much better with her walker or canes in the future), then sign us up! 

Our next steps are contacting the doctors in St. Louis for an evaluation and hopefully doing that by the end of the year since we already met our deductible. Then we'll have to wait for them to tell us if Kinsley is a good candidate or not, and then figuring out where we want to have the surgery, and figuring out her recovery afterwards. I definitely think we're at least a year out from actually doing this, but it is the new path we're pursuing, and will keep everyone posted as it unfolds.

3 comments

  1. Oh, my heart leapt when I saw this post! I had SDR with Dr. Park two years ago, at age twenty-three, and it absolutely transformed my life. I can't believe how light and free I feel wthout spasticity. I've written about my experience here, to help other families fundraise: https://hippocampusmagazine.com/2019/05/the-science-that-set-me-free-by-kerry-benson/

    My parents briefly considered this surgery for me when I was a baby, but it sounded too scary and invasive for them then, before the benefit of social media. Later, as a neuroscience major in college, I looked into it on my own, and we decided to go for it. I'm so glad I did!

    A couple things to keep in mind: First, it *does* matter who does the surgery. SDR is an extremely nuanced surgery, so it's not cut-and-dry which nerves should be severed and how many. There are many skilled SDR surgeons, but there are others who aren't so skilled, or who deliberately leave some spasticity behind. Please be careful who you choose, and if you opt for someone other than Dr. Park, do research carefully on their outcomes and ask questions like "What percentage of nerve rootlets do you cut?" and "Do you do a single-level (less invasive) laminectomy [the technique pioneered by Dr. Park] or multi-level?" and "What percentage of your patients have serious complications, like paralysis or incontinence?"

    Also, my understanding is that the bigger concern in selecting candidates isn't that the muscles become useless without spasticity. (This is from the St. Louis Children's Hospital SDR website: "It is our opinion that patients with cerebral palsy do not depend on spasticity for any activities. Their case is different from that of patients with spasticity associated with spinal cord injury, in whom the spasticity sometimes does help with standing and taking steps.") But St. Louis does like most patients to at least be able to sit and take steps with an assistive device prior to surgery so that they can participate in rehab to the maximum extent and reach their full potential; other surgeons may have different selection criteria. As it was explained to me by Dr. Park, some kids aren't candidates if their primary issue is dystonia (random on/off contractions of the muscle) as opposed to spasticity. Spasticity can sometimes hide dystonic movements, so if a child has underlying dystonia, that can become more apparent after SDR.

    Proper rehab is also *essential.* Messages from the brain to the muscles aren't disrupted in SDR, because no motor nerves are cut, but without spasticity, the muscles must learn to work in different ways. As you've said, SDR isn't a miracle cure -- it definitely requires work, and function can be lost if the parents and child don't follow through on the post-op rehab. But in many ways, it feels like a miracle to me. It hasn't been an easy journey, but it's been a beautiful one. SDR completely changed my life.

    I'm so glad you're considering SDR for your daughter! Feel free to reach out to me if you have any questions along the way.

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  2. Yes yes I agree Dr. Park is the ONLY doctor I would consider for SDR! My daughter (age 18) has a rare neurological disorder that causes spasticity as well, and we have considered SDR for her. All of the families with my daughter's disorder who have chosen SDR have used Dr. Park. A friend my daughter made with the same disorder who lives in the UK is having surgery in St. Louis with Dr. Park next month - they decided it was worth coming this far just to have him do the surgery. I'm not sure if you've found it already, but there is a Facebook page specifically for parents getting or considering SDR with Dr. Park for their kiddos. Here's the link: https://www.facebook.com/groups/161839724125/
    Keep us posted!! And as always I am praying for you and your family.

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