Here’s the latest SDR surgery update! On March 29, 2013, I had Selective Dorsal Rhizotomy (SDR), a life-changing surgery that will drastically reduce and/or remove the tightness in my legs caused by spastic diplegia, the most common type of cerebral palsy. I found out about SDR last August. After getting the green light in October regarding my candidacy, I was determined to have my surgery performed by Dr. T.S. Park, the world-renowned Neurosurgeon acclaimed for refining the procedure. For the past twenty-five years, he has drastically changed the lives of over 2,500 children (approximately 2,436) and adults (I’m number 63 0r 64) affected by cerebral palsy.
How My SDR Journey Started
My SDR journey started with the power of possibility. I had to decide whether or not SDR was the right choice for me. Educating myself, I ferociously read about the surgery. In addition, I communicated with many of Dr. Park’s patients about their experience and results. I weighed the benefits and the risks. The overwhelmingly positive feedback coupled with Dr. Park’s 100% success rate made this an easy decision. I had to go for it! Unfortunately, neither insurance coverage nor time was on my side. Dr. Park rarely operates on adults over the age of 40; I will be 40 in June. My Medicare HMO would not approve SDR outside the state of Florida. I went on a wild goose chase to find a loophole which would allow me to have the surgery in St. Louis with the unparalleled Dr. Park.
Insurance Issues
I contacted a doctor at Miami Children’s Hospital who was covered under my insurance. I wanted answers to basic questions before making an appointment. How many SDR surgeries has he done on adults? What were the results? What is his technique? I found out that he has done hundreds of SDR surgeries but only a few on adults. The procedures he has done on adults have only been in cases where caring for the patient was an extreme hardship. He feels SDR is not a good procedure for adults that can walk.
I refused to settle. Dr. Park is the best in the world. The countless before/after videos of his patients speak for themselves. Children who could not walk prior to SDR are now walking. The adults I’ve spoken to who have had SDR with Dr. Park feel SDR this is the best option (as opposed to Baclofen or orthopedic surgeries which do not eliminate spasticity) for us.
Why Dr. Park is Simply the Best at SDR
Dr. Park has performed over 3,000 SDR surgeries. His surgical technique is preferred for the following reasons:
- Reduced risk of spinal deformities in later years
- Decreased post-rhizotomy motor weakness
- Reduced hip flexor spasticity by sectioning the first lumbar dorsal root
- Shorter-term, less intense back pain
- Earlier resumption of vigorous physical therapy
Fighting + Fundraising
After months of trying to figure out and understand my insurance options, I threw my hands up and switched from my HMO to original Medicare, an insurance Dr. Park accepted. I also have FL Medicaid, which I hoped to apply to my medical bills. Unfortunately, FL Medicaid will most likely deny me because they do not approve services (other than in cases of emergency) outside the state of Florida. Because I would not find out how much, if any, Medicare and/or Medicaid would cover until after the surgery, I started a fundraiser to raise the $50,000+ needed for the operation and associated costs. To date, I’ve raised (and am still accepting donations) $4,500 thanks to the kindness of many people, most of whom I’ve never met. I am forever grateful for your donations and support.
SDR Surgery Update
It’s been almost a month since my surgery. The difference in my gait was immediate. I’m walking on sunshine with excitement! Thank you to my primary care physicians, Dr. Luis Martinez – who started the process – and his partner, Dr. Jarrod Frydman, for being on board (most physicians are not) with my desire to have SDR. Thank you to my oldest brother Anthony for traveling to St. Louis with me. I could not have done it without him. As for Dr. Park – well, there are not enough words to express how thankful I am for his healing hands and humble demeanor. Thank you to the Selective Dorsal Rhizotomy – St. Louis Children’s Hospital Facebook group for the wealth of help and information. I’m proud to be a member of such a wonderful family! This is a great place to start if you want more information about SDR with Dr. Park.
SDR Surgery Update Before + After
This how I walked BEFORE SDR:
Here is how I walk AFTER SDR:
And don’t it feel GOOD! I will continue to see improvement with physical therapy 3X/week for four months. Then, it will be time for my follow-up visit with Dr. Park. I am excited to see what I will be able to do in the future. Dr. Park predicted that I will be exercising and walking with greater ease/less effort and riding a bike, the number one goal on my post-SDR bucket list! Stay tuned for more SDR surgery update videos!
What an inspiring story!
Dear Alethea,
Thank you for visiting my blog and leaving a comment. 🙂 You’d be amazed at the children with cerebral palsy who work so hard in physical therapy after SDR surgery with Dr. Park. They inspire me!
That’s beyond wonderful! 🙂
Many blessings to you Nicole…
Thank you, Rosy! Many blessings to you, too! 🙂
Nicki – as my sister and my Godchild, I am soooo very proud of you on sooo many levels. You are an inspiration ~ and your blogs/Facebook posts and other writings to tell the world about this surgery and Dr. Park is awesome. If every adult & child with CP could have this life-changing surgery, think about the possibilities!
Blessings to you always as you start a new chapter in your life!
Love, laurie
Dear Laurie,
Thank you for the kind words. I hope people with CP see this post and investigate SDR to see if it is right for them. Everyone deserves a chance to live their BEST life!
I’m SOOOOOO proud of you Nicole. You didn’t give up and you are walking towards your destiny!
Blessings,
Mo
Dear Maurice,
Thank you for your kind words! Blessings to you, too. 🙂
Hi Nicole,
I am so proud of your for persevering to get knowledge and a way to have this done. I’m so glad it is working so great for you. So good to see that wonderful smile on your face. Keep on keeping on! Sally
Dear Sally,
Thank you for visiting my blog to say that you are proud of me! I thank God all the time for my perserverance. The journey just to have the surgery was not an easy one. There were times I felt like giving up. SO glad I didn’t. I couldn’t – it’s not who I am. 🙂
I’m amazed at how well you are doing. I’ll be 42 in June and I’ve had my eye on the surgery but never really thought it would work because of my age and then I see you and I’m curious if it would have helped me. I cannot walk unassisted but can stand by myself for awhile. Bless you!!! Can’t wait to keep track of your progress
Hi Tara,
Thanks for stopping by my blog and keeping track of my progress. 🙂
hey, just checking in and sending you (((HUGS))). love ya!
Thanks for checking in and sending hugs. I’m working hard doing physical therapy. Give me a call!
Hi Nicole
My name is Kevin Gillespie, I do, MUCH prefer to be called Kev though. :).
I live in Wales & am now following your Blog. :).
Also, from what I have read on here, {{{{{{{{{{BIG HUGE HUGS}}}}}}}}}} from me too. :).
Best Wishes. 🙂
Hi Kev,
Thanks for following my blog and sending me hugs! 🙂
Nicole,
You are an amazing woman… Such an inspiration. 🙂
Becky
Thank you, Becky! I guess you could say I’m a woman going forward one step at a time. 🙂
Hi Nicole, I am happy to read your story. Who gave you the greenlight regarding SDR candidacy? Did you contact Dr Park and ask him if you were a good candidate?
Hi Vy,
Thank you for reading my story. Yes, Dr. Park gave me the green light regarding SDR candidacy. You can follow the links in this post or go to http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity
Nicole
Hi Nicole, can I have your email address? I am considering this surgery and I would like to ask you more questions. I just filled out the form at the St. Louis Children’s hospital website. I am excited but also scared and doubtful. Thanks.
Hi Vy,
Congrats for filling out the form. Please go to the Selective Dorsal Rhizotomy – St. Louis Children’s Hospital Facebook group. I’m sure you will find it informative: https://www.facebook.com/groups/161839724125/ I’m a member of the group. You can message me via Facebook.
That’s awesome! I’m the mother of a 2yr old with hemi Cp.. she works so hard everyday! It’s amazing what goes on in St Louis. I recently just heard about SDR n am in the middle of researching it myself. If you have any good sites you might be able to direct me to, that’d be great. Thank you for posting your story n videos. The fact that you didnt give up when you were told no gives me hope. Thanks again, love.
Hi Ariel,
Thanks for replying to this post and watching my videos. I hope SDR is an option for your child. Just to clarify, I wasn’t told no regarding the surgery – my doctor was great! My Medicare HMO that would not allow me to have the surgery out of state so I switched to Original Medicare. Good luck!