Here is a full breakdown of our experience with Selective Dorsal Rhizotomy in St. Louis Children’s Hospital with Dr. Park. Our SDR before and after story is only just beginning but I hope this page can be a resource to you if SDR is something you’re considering for yourself or your child.
Spoiler: we have no regrets!
JR loved his first plane ride, singing the Little Einstein theme song as we ascended upwards into the clouds: tap, tap, tap… raise your hands, high in the air, and count to three: 1, 2, 3: BLAST OFF! He was an absolutely joy to sit next to, especially as an anxiety-ridden mom who kept burying her head in the side of the car seat to catch her breath and quiet count to 10 to quiet her racing heartbeat! His innocence and wonder about the world – and especially the scary stuff, like heights and fast cars – intrigue him in the most special way! The incentive was enough to wear a mask, which shocked me! He did so great with that and has this entire trip.
Why in the world would we take our first family trip during a global pandemic???
Honestly I’ve questioned myself the entire time but when a potentially life-changing operation by a world-renowned surgeon is available, you take the plunge. Even during a pandemic.
The surgery is called Selective Dorsal Rhizotomy, often referred to as SDR for short and it’s performed by a handful of doctors in the world, but the most well-known and respected is Dr. Park who has done it for more than 4,500 children with cerebral palsy, like JR.
I can’t speak to how the procedure is viewed in the medical community but anecdotally among parents and patients, it’s described as life changing.
If you’ve found your way to this post and our story it’s likely you have a child with CP, or may have it yourself. Or, you know us personally and are looking for an update and some inside information on our experience. The first thing to note is that JR was deemed “not a straight forward” case by Dr. Park during our consult with him and I share this because, a, I think it’s important for our friends and family to tailor their expectations of this as a fix-all or fast-tracking to walking, etc., but also for others, who like us, may not fit the mold of the a typical SDR kid/case, and are wondering if the surgery is for you.
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Today was JR’s first attempt at sitting up and getting out of the bed.
I’m not even sure where to begin really. So many thoughts have been swirling in my mind these last few days. It’s been a whirlwind but at the same time, one of the longest weeks ever. We purchased a children’s book on Amazon months before the surgery called “Sir Dr. Park and the Dragon Spasticity,” written by the mother of a boy who had the procedure done years back. It’s a wonderful book that served our family well as we prepped our son for “slaying the dragon,” with Dr. Park and even now — as a mom, who has traveled 13 hours from home for this during a global pandemic — I find myself identifying with the dragon slayer: a sword in one hand slashing through the trouble/pain/discomfort caused by spaticisity for our boy, and a shield in the other, trying to protect us from COVID-19.
Our closest family know that I’ve researched this procedure for years now – since JR was about two and he just turned five. The fact that it’s done now – and that we might be over the most painful parts with surgery and recovery – is hard to even fathom. I’m still processing all of it and it’s one reason I’ve been hesitant to take to social media with a lot of updates and information. Cerebral palsy is complicated, and so is JR for that matter. We’re all a little complicated aren’t we? When we look at diabetes, or mental health challenges, or anythign in the medical/health space, it’s multifaceted. There’s not a one-size-fits-all or a fix-all approach. I read Obestiy Code earlier this year and it was the same concept: weight loss and maintaining a healthy weight is very complicated because the human body is complicated! And it takes a multi-faceted approach to do it successfully.
While SDR has always been glorified in my mind – and for some others – as the hallmark step toward major improvements with functional movement and management of CP, we know this is just one rong on JR’s latter. It’s a big one, don’t get me wrong! But it’s just one. There’s so much ahead. I find myself wanting to write about it all but having absolutely no time or energy to; and not being able to capture it all fast enough. JR has taken us so many places already in his short five years and while I desire so deeply to share those experiences I’ve had along his side with the rest of the world, I’m beginning to realize and accept that may not be sharable. The truth is, being any kind of influencer – even in the medical/wellness space – takes a lot. I’ve already had mulptiole moms of other kids reach out for information, which I love to share and connect in those communities, but, my point here is that this is truly a full-time job. The research leading up to this, the planning and execution of it. It’s a lot and it’s hard to really convey all that comes along with it.
Tonight, I have a break from the hospital and a little time alone which is so rare. While I wanted to veg-out and fall asleep early, I knew it was important for me to commemorate this day. It’s almost like, I’m not sure why it’s so important (this day/this procedure/this rong on the latter) but it is — and I have a feeling I’ll look back and reflect deeply on it’s impact.
The doubt and guilt and confusion over whether we were doing the right thing, coming here; during a pandemic!
The disappointment and concern that came up during our consult when Dr. Park said JR was “not a straight forward case.”
Also my guilt that first night as he cried out in pain and there was absolutely nothing I could do to take it away.
Asking him if he’s ready to walk now, not really knowing at all if this procedure will help him with that.
There’s just so much worry as a parent, and especially as a special needs mom. Nobody can tell me what’s best for my son — nobody can tell me exactly why he moves the way he does, or how exactly to help him move better. There’s theories – lots of them – and medications – lots of those too – but ultimately, I’m on a treasure hunt for something I’m not even sure exists.
Is that treasure for my child to walk? Certainly not. It’s for his health, his happiness, and his quality of life. But at what cost, and from what perception and place do I approach this? I’ve had a lot of guilt over thrusting us back into the hands of more doctors and nurses, knowing his anxiety in medical settings (and rightfully so). Even knowing my own anxiety there.
But I can’t lie and say I don’t also feel empowered here – it’s exhausting – to do the dance of negotiating and advocating with the medical team but when mom gets her way, it feels pretty damn good. Is this for me? It’s been a long few days and I’ve entrusted my precious boy to a team of doctors and nurses I don’t know but who – from all accounts – have changed countless lives. We’ve met a family who flew her from Egypt and are paying upwards of a one million dollars for this procedure for our son. Meanwhile, a two-hour flight and fully covered insurance for us. You can’t help but look at these things as a special needs mom, evaluating in your mind if you’re in the right place, making the right decision, and if, this, if this next thing, will help.
Q&A
We’ve received a lot of questions about SDR from people who know we had it done and I thought it would be easiest to compile our experience in the form of a Q&A so you could jump to whatever interests you. Keep in mind that we are one of thousands of families who have done this procedure and are by no means in a position to tell you what’s best for your child. We’re only speaking from our own experience.
Where did you first hear about the surgery?
On Instagram of all places! I swear one day I’m going to write a book about the role of social media on mothers of medically complex children. Believe it or not, places like Facebook, Instagram, and YouTube have been treasure troves of information for us! I think I first heard of SDR through Fifi & Mo on Instagram. She
ad the surgery and a subsequent stem cell infusion and her progress was apparent! As I researched it further I found that ancedoteally among parents it was the single best decision they’d made for their child with CP. This was despite all of our therapists, doctors and friends telling us not to do it.
Why did some people tell you not to do it?
Unfortunately I believe in the
A lot of physical therapists will say that kids use their tone (or spasticity) and if we take it away they won’t have anything left. Unfortunately I don’t believe this to be true at all. I think when the tone is gone, people have weak muscles but they’re able to begin building those muselces. It’d imposible to isolate and build them therwise! For exampel
What was the worst part?
The first night was by far the worst part because the surgery causes muscle spasms and headaches. JR was in a great mood when he first woke up but a few hours later when most of the heavy pain meds wore off he was definitely miserable and I felt awful! I wished I could have taken his pain away! I crawled into the bed with him several times and that seemed to comfort him but I wish we had been more liberal with the pain meds that first night. The nurses are great and they have a lot of options but I wasn’t sure what we’d need and it wasn’t until he was pretty upset that I realized we probably should have stuck with the strongest stuff that first night.
What were your reasons for doing it?
One mom said her decision was based on the fact that if her daughter was going to be in a wheelchair anyway… why not. That sounds flippant but it’s not. It’s actual a very valid point and from a caregiver’s perspective
Where did you stay?
We contacted the St. Louis Children’s Hospital social worker through Dr. Park’s team and she provided a list of options of places to stay. The Ronald McDonald Apartments are offered to families who have a child in the hospital but because of COVID, they afforded us a room at the nearby Hilton Home 2 Suites, asking only for a donation to the foundation at some point. I do not know what the criteria is for staying at Ronald McDonald but suggest that you contact the hospital well in advance of your child’s surgery and express an interest in staying there to see if a room is available.
How did you know your son was a good candidate?
We didn’t know if our son was a good candidate. Honestly the only person who knows that is Dr. Park and until he evaluates your child, you won’t know whether they are a good candidate or not either. Our consult with Dr. Park was very honest — he told us that SDR may help JR a lot, or it may not help him much at all because of his underlying dystoina. We appreciated his candor with us and his contemplating whether it was the best idea for JR. Togther we settled on this as a good
How did you pay for the surgery?
My health benefits covered the surgery which I’m still amazed by to this day! I had fully planned to fund-raise if needed, but given I don’t have a lot of experience with that I’m glad we didn’t have to.
How much does SDR cost?
Our insurance covered the surgery but I believe it’s at least $50,000 out-of-pocket (this is according to any international couple we met who paid for it themselves, not including flights to and from Egypt)!
Is SDR available to non-U.S. citizens?
How did you apply?
We applied through the website, sending a packet of requested information, video footage, x-rays and a letter.
Why did you decide to do it in St. Louis?
Dr. Park has performed more than 4,000 SDR procedures to date and he is world-renowned. We had been told by countless people that if we were going to do this it absolutely had to be with Dr. Park and we understand why now. We were told by an international family that other surgeons
Why now?
I wouldn’t have picked now in a million years – traveling during a pandemic? No thanks! We hardly feel safe going to the grocery store; however, because we’re so limited on what we can do this was the most optimal time. We don’t have a lot of the resources we usually rely this year with various therapies, like hippotherapy and the intensive outpatient clinic in Richmond. We aren’t even seeing our regular outpatient PT for weekly therapy anymore. This year could have been a total wash but getting SDR done now means it wasn’t – hardly! This was also JR’s kindergarten year and the spasticity he fought with in school – transferring him from was just really hard. I believed this procedure would make him more comfortable overall being away from home through the day (although ironically he’s home anyway)!
What therapy are we doing?
We’ve hired a private physical therapist we’ve known for a few years to come to our house. We did virtual therapy for awhile but it just got to a point where that wasn’t enough and we wanted someone hands-on. Watching up close someone working within hin our house gives us so many ideas of what he can do! Our therapists have always been understanding of when we may have to pause to catch our breath in terms of cost. It’s definitely very expensive.
My son/daughter doesn’t walk, are they still a candidate?
I didn’t believe JR was a candidate for a long time because he couldn’t sit unassisted and the first line item on the application is abut sitting! I jumped to conclusions and sat on our application for a long time frustrated that my son wasn’t likely a candidate and in hindsight, I wish I’d followed through sooner. Once I finally did our application
Since we didn’t have a physical therapist backing this decision, we filled out the paperwork ourselves and I compiled the video from various clips I’d taken through the years. I went down the list of items and ordered the clips showing what our son could do from sitting, doing sit-to-stand and anything else I thought was relevant. We also included a letter about our son and why we thought SDR would be beneficial for him. There was also a lot of medical paperwork required that took awhile to organize and send. This included hip and spine x-rays, among other materials.
What’s the St. Louis Children’s Hospital like?
It was really nice! The people were wonderful and it wasn’t too big — we were able to find our way around well.
Check out the Conservatory while you’re there on the 8th floor (if nobody is there to open the door, knock on the kid’s center and someone should be around to badge you in). The Ronald McDonald family area is a haven with a kitchen full of snacks and lounge areas with TVs, as well as showers if you need a place to freshen up. We walked to the Chick-Fil-A and Starbucks by the Pharmacy school a few tiems and even to Smoothie King one day for food. The hospital food wasn’t very good but it was inexpensive — just $8 for a guest tray in rooms. With COVID, we had the room to ourselves so it was very comfortable. Both parents could be present during the day but only one was permitted to stay the night. No siblings are allowed at this time. And we utilized a shuttle offered by the Hilton Home2Suites to get back and forth if it was dark out, otherwise we walked.
We applied for SDR and were denied.
Depending on the reasoning they gave you for the denial, I would consider re-applying. I’ve heard countless stories of families reciveing a “yes” after an initial “no” — sometimes it has to do with core strength. The team rall
I’m interested in learning more about SDR but don’t knwo where to begin.
I found the following resources helpful:
SDR Saves Lives
The St. Louis SDR Facebook Group (so amazing!)
Our therapist isn’t a fan of the idea. Any suggestions?
Do you see a change in JR already?
We do! We see a lot of positive things so far. His speech is clearer and stronger. It’s like he can talk with more ease now. He’s also able to put his legs completely flat which is quite incredible! His hips were always flexing and his legs were always straight up in the air or drawn up to his chest.
Have you seen any negative side effects?
Right now we’re dealing with some nerve pain that JR’s experiencing in his feet but we expected this. According to others who had it, it goes away eventually (after 6 weeks or so post-op) and we’re confident it’ll go away for JR too. The scar itself is healing really well and it only seems to hurt if we grab him in the wrong way (like our arm brushes against it roughly by mistake) or he’s in a weird seated position, or we’re pulling his legs up for a diaper change which obvivously tugs the posterior chain.
What are you expecting to come from SDR?
It’s honestly hard to say! I do have high hopes that JR will walk with a walker one day but really, I just want him to be more comfortable overall. It was improtant to me to have his legs looser for the purposes of changing him, bathing him, and positioing him as well. All of which we’re already experiencing some relief with, so we’re happy to see where we can go from here!
Is SDR permanent?
In almost all dipelgia cases the spasticity seems to stay away forever, however with triplegic and spastic quad patients the spasticity can come back (and has for some). My understanding is that it doesn’t come back as strong but only time will tell.
My son or daughter has dystonia, are they a good candidate?
It’s hard to say. I’ve researched this left to right and it seems as if every child is different but those that had SDR don’t regret it. They say it unmasked the dystonia and gave t
What is the post-op therapy required?
Dr. Park’s team recommends 4-5 days a week of therapy post operatively including daily stretching; wearing splints at night; possible casting if necessary and even
What is PERCS and how is it related to SDR?
I thought this was important to mention because you’ll often see discussion of PERCS with mentions of SDR. PERCS is a when a small incision is made in the calf musle to allow the food to relax and bend at a 90 degree angle. In order to walk you have to be able to play heal to toe,
What now?
Now the real work begins! We’ll continue everything we were doing before surgery with daily practice in the stander and walker and lots of stretching in-between. We’ll also return to St. Louis in 4-6 months for a follow-up with Dr. Park. We’ll evaluate whether PERCS is needed, or anything else and take his recommendations as to where we go from here. Ultimately to be able to consult a surgeon like Dr. Park about our son is so valuable! Even if SDR doesn’t have the intended outcome we hope for, we do feel that having had the opportunity to work with Dr. Park will put us on a good path and give us a good focus for the next few years.
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Favorite Places in St. Louis
The Cathedral Basilica of St. Louis
Busch Stadium (Home of the St. Louis Cardinals)
