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Photo of Megan & Dr Park

Photo of Dr Park with Megan in 2010 and 2014

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SDR Party 2014

This weekend Megan and I attended the SDR Party in Daventry 2014.  As usual Dr Park and his lovely wife came over, along with some other members of the St Louis team.  We were fortunate enough to bump in to Dr Park in the corridor at the hotel so at last I managed to get a decent photo of him with Megan, as last year Megan had her eyes closed when I took the photo!!  What a truly genuine man he is.  I'm sure this will be the last SDR party that we attend.  Before it was quite a unique group of parents but now fortunately so many have hear about SDR and there are many families who continue to travel to St Louis so we thought this would be our last party to give other families the chance to attend the party.  We were also very fortunate to be sitting right at the top so we felt very privileged.  It seems such a long time now since Megan had SDR and we continue to lead a very normal life.  I still contribute to the SDR facebook page.  Anyway, had a great weekend and met new families which was great.  They Daily Mirror were there and took a photo of all the children so watch out for Megan!

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Update

I have not added an update for sometime, mainly because Megan has just continued to do so well.  She continues to do a short weekly physiotherapy with Tabatha which is great and she continues to keep active - her favourite activitiy is walking through the woods to her grandparents house.  She is also working hard towards her first GCSE which she is taking 2 years early.  I still check out the SDR facegroup support page but I'm not quite so active as there are just so many parents on there now but I will always continue to be an active member as there are not quite so many parents with kids who are well over 3 years post op.  I just wanted to copy two comments which were on the facebook page recently, which again is the main reason why I am passionate about SDR and how Megan's videos continues to help other people - here are the two comments, they are very long but well worth a read as you will see how Megan is helping other families.   

FIRST COMMENT:

Dear all, I have a special request and I hope that you could help me. I joined this group more than a year ago, after seeing the videos of Megan Vernon (Stephanie Vernon). One of the first persons I talked to was Kent Wells (a big thank you). I sent the preliminary form just a year ago but after we stopped the process. The reasons are several - risks of the procedure, funding, worries about after care (nobody had SDR in my country), opinion of doctors. Yet the main reason remains the fears of my family (some of them are mine too). My son is preemie (28 weeks), an independent walker since 1yr 8 mo, never used assistive devices. Currently 4 yrs and 2 mo, can walk in all environments, climbs stairs up to 20 cm without holding to the railing, descends holding, emerging ability to run, not able to jump. At about 3 – tip toes walking worsened, but with AFO’s it became significantly better. Yet, he is now developing a crouch gait, more pronounced with AFO’s. As he is mild and very active, my family expects him to be able to maintain and to develop current level of mobility. Actually because of some doctor’s opinions they even believe that we may avoid orthopedic surgery, botox etc. or at least postpone them for years. Because of this my family think it is a crazy idea to go for such a major surgery like SDR. That’s why, I would like to ask members of the group – if your child is with very similar abilities as mine (diplegia, walking independently since about 2 yrs old), please to send me your story with some links to pre and post op videos. Also, if your child had the surgery when they were older (7yrs or more), could you please share links with them at age 4 and at age before SDR? I just want to show that situation does worsen with time. They already saw a lot of videos, but usually react that the children in them are more severe. As for the mild they almost see no difference except for toe walking. Actually I think that some of the “more severe” ones are just similar to my son (like Megan), but because the age is higher the problems are more visible. Please also to share the main setbacks , disappointments, stress and discomfort for the child, social and emotional impact on both parents and child, and psychological pressure because of intensive treatment, influence on school etc. For us SDR will be to put at stake everything. Fundraising of such amount will be absolutely impossible in my country. If I succeeded to gather USD 10 K I would be extremely happy. We will have to make a mortgage, my husband and especially me - we will be at risk to lose our jobs, as such a long absence of work may not be tolerated by our employers. Aftercare will be a very big challenge too. Please excuse me for this long post. If you would like to share your full SDR story - PM me and I will give you my e-mail. THANK YOU.

SECOND COMMENT:

 
I think my views on the matter are well documented. Nearly 2 years post op for my Anna. As many parents of children diagnosed with cerebral palsy we were told she may never walk. At 18 months she took her first steps and things appeared to be very mild. Anna was in some form of OT or PT since she was a baby. We were often told by our local Dr's that she was very mild in the beginning. We started to really notice the tightness in her legs around 3-4 years old. They began to prescribe AFO's, derotational straps to keep her feet from turning in, oral baclofen at age 4, then the Botox injections shortly after that. The effects of the Botox were short lived. Then Botox and casting. Then more Botox. Each time becoming less and less effective. I am probably the most anti-Botox and muscle relaxer supporter you will ever meet today. The muscle relaxers made her tired, the repetitive Botox treatments were more traumatic than our 5 day stay for SDR was. I can remember sitting through physical therapy sessions thinking this must be the definition of insanity the exercises they were trying to get her to do with the lack of energy from the Botox combined with the muscle relaxers, combined with the constant weakening of the muscles with the Botox injections. The real definition of insanity was when they suggested to do another round of Botox and casting. This would have been her 5th in 2 1/2 years and thought enough was enough! These treatments were inferior. In the mean time my wife had joined this Facebook group here and would mention SDR occasionally. She would bring it up to me and my initial reaction like so many others I am sure was "hell no not going to have her spinal chord cut and nerves severed" But one night before my wife went off to bed I was laying up on the couch and she had me take a view of the videos of Megan Vernon on this SDR page. This was the night of my epiphany. I saw the transformation with my own eyes. I watched the other videos like the SDR information video, educated myself by talking to the other group members. We had an evaluation at our local children's hospital because they had started performing the surgery here recently. We were turned down here because the surgeon thought she was too mild and we need not be in a hurry...which contradicts what Dr Park believes about SDR at an early age. Everything just made logical sense that this is what needed to happen. We sent out our pre-op video and x-rays and received the yes from Dr Park a few weeks later. Today Anna's life has not been changed by muscle relaxers and Botox. Today her life has been changed by Dr Park and his selective dorsal rhizotomy procedure. The days of sitting in physical therapy and wondering how your daughter could possibly perform a ballerina squat while toes are pointed at the ground with her knees locked inward are over. The tripping over the feet while running across the playground to catch up with her friends only to end up in the emergency room to have her chin sewed back together is over. The falling asleep in the classroom because she was doped up on her morning dose of baclofen is over. The aFO's the de-rotational straps are gone. The tightness, the leg length discrepancy is gone, the constipation, the fear of having to have her legs broken to be repaired, the possibility of hip surgery corrections gone. The same people that were telling us that they couldn't foresee Anna having to have orthopedic surgeries when she was 4 years old were telling us when she was 6years that it would definitely be in her future. SDR has changed all of it. Once upon a time a trip to the amusement park was 30 pounds on my shoulders after 10 minutes of walking Today she has the strength endurance and stamina to spend the day independent of being carried. One summer after Botox my daughter could keep her feet on the pedals of her bike the following spring she could not they had to be tied to the pedals. 3 weeks after SDR the feet could stay on the pedals again. The following spring she could still keep her feet on the pedals. What we have found is a per enact solution to a problem called spasticity. This is not a temporary fix that will leave you wondering why anyone would think multiple injections of Botox throughout ones life is a good idea. As far as possible complications....Dr Park doesn't make mistakes you can count on it. I think my chances of getting struck by lightning on a clear day are better. As far as the cost, let's face it...it is more than worth it to be free from the chains of spasticity. This is a very small account of our SDR surgery story. Before video is under the video tab withe a few short videos after SDR. We plan on doing an updated video for Anna's 2 year anniversary in the next month or 2. Hopefully this helps your family in some way or anyone else that will read it. I firmly believe SDR should be the first option for treating/eliminating spasticity not the last resort( if a candidate).

 

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Megan's 3 year post op video

We have now completed a 3 year post op video of Megan showing all her new achievements over the past year.  I hope you all enjoy watching it.  The video can be found under the 'links/videos' tab.  Here are some of the comments Megan has received about the video:

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Latest News

Megan has made this video to help a lovely lady in the USA who had SDR as an adult and she would like to learn to ride a bike so we are hoping that this video will help her.  The video can be found under 'links/videos' on Megans website. Here are some of the lovely comments she has had:  

From Nicole:  I just watched the video!!! Megan, you inspire me. Thank you for showing me how to ride a bike. You make it look so easy. I loved your message at the end. It made me smile! 

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Update

Megan continues to do well.  I am currently in the process of putting together a 3 year post op video and hopefully it will be ready by November 2013.  This video is going to be of Megan just doing very ordinary every day things, rather than all the usual physio videos.  Megan is still going from strength to strength  and has achieved some very special which I am saving for her video - so watch this space!  

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An amazing achievement for Megan!

I can't quite believe it!!! Some of you may remember that sometime ago Megan walked to her Grandparents house through the woods and she walked 3.5 miles - pre SDR Megan could just about walk slowly for a mile on her toes and would be in some discomfort. She has recently been asking to walk there and back and today she did it - SHE WALKED 7 MILES - YIPPEEE!!! We only stopped for half an hour at her Grandparents house and what surprised me the most is she was faster walking back. She even ran back the last 100 yards.

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More fund raising for Megan

Megan volunteered to do a cake stall at a Day for Dylan to help raise money for the Hampshire Autistic Society and raised around £200.  She was also asked to judge the cake competition and she couldn't believe her luck when she was asked to try every single one!!  You can see a clip of her walking round selling the cakes.

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100% attendance for Megan

At the end of term at school Megan has never had a 100% attendance certificate.  This is because her life was full of hospital visits etc.  Obviously she had a big chuck off from school when she had her SDR, but apart from that she only been off sick with a bug for probably no more than 5 days since starting school at the age of 5!  This week she received her first ever 100% attendance - yipee!!! :)

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Gift from Dr Park

As you know we have been to the last two SDR parties in Daventry where Dr Park and some of his amazing team have come over to the UK.  This year Dr Park also travelled to some other parts of Europe and has sent me a lovely photo album  with lots of photos of SDR families.  What a lovely thing to do :)

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