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Your experience of SDR

ScopeHelplineScopeHelpline Posts: 210Member Courageous
At Scope Response we are currently reviewing and updating our information pages about Selective Dorsal Rhizotomy surgery (SDR), and we need your help!

Has your child had the surgery, either in the US or in the UK?

Are you considering the surgery for your child?

We would love to hear your own stories and experiences, both good and bad, and use them to make our information as comprehensive and useful as possible.

If you would be happy to share your experiences of SDR with a wider audience please contact us, [email protected]

We will also need parents who would like to be on the review panel for the information we provide - in effect to read it and give feedback before we set the pages live. If you would be interested in this please contact us.

Thank you, we look forward to hearing from you.

Kind regards

Scope Response

Replies

  • Autumn19Autumn19 Posts: 1Member
    Hi, My daughter is in St Louis at this very moment in time, her son, my grandson, had the SDR op on Tuesday 15 May. I am certain that on her return she would welcome the chance to get the message out there about SDR.

    Please let me know if you would like her to contact you on her return and I will update her when we next talk via skype (every evening at approximately 8-10pm UK time).

    Patsy
  • MarleneMarlene Posts: 1Member
    Our son has been accepted for SDR and will be travelling to St Louis this summer for surgery. we have been told to expect a good outcome for him. He is now 11 years old and has spastic diplegia, he walks independently but not far as he now lacks stamina and he uses a wheelchair for any distance. We have tried BOTOX and casting but found out about SDR last year and decided to go down this route after talking to other oparents who have been through it and also having the opportunity to meet some of the parents and their children.

    I will happily give feedback on our experience once we return to the UK. This is an amazing procedure with amazing results which all children who are assessed and deemed suitable should be allowed to have!!
  • catherineevanscatherineevans Posts: 2Member
    Hi my name is Catherine, my daughter Isabella is 8 and has just been accepted for SDR. We are hoping to go out in January as we have to raise funds for the operation.

    If isabella did not have this operation then i feel for certain that she would spend the rest of her life in a wheelchair and all the other problems that she will have to face because of the tightness in her legs affecting the way her foot sits on the floor, besides numerous other problems that affect her because of the cerebral palsy.

    The surgeons letter of acceptence stated that he feels Isabella will be able to walk using just walking sticks in the future if she has this operation.

    With all the experiances of other family's i have read about on the sdr facebook page, I can not see how I could not do this for my daughter.

    If you need any futher imput and I can help I would be more than happy too.

    thanks
    catherine xx

  • EllenJuliaEllenJulia Posts: 1Member
    Hi
    My three year old daughter is due to begin tests this week at Oswestry Orthopaedic Hospital to determine her suitability for an SDR. I am happy to chart her progress and give you our experiences of the whole process, and of the operation and subsequent rehabilitation should we decide to go ahead with it all

    Kind Regards
    Ellen
  • mel0898mel0898 Posts: 1Member
    My son Daniel was assessed at Oswestry and we were told he was the perfect candidate or SDR. We agreed to the operation and have physios family and friends committed to Dans rehabilitation. Unfortunately the problem comes with funding. Our Primary Care Trust have refused the operation as have many other care trusts forcing parents to fund raise and take their child to St Louis. We have now got an appeal from Oswestry which we have backed up with letters from ourselves and M.P.s and are waiting for a decision. I fail to understand how a care trust can make a decision on a life changing operation without even seeing the child. Getting a referral and passing the gait assessments at Oswestry is the easy bit. Fighting the red tape a bureaucracy is a major issue at the moment. Having spoken to other parents and also Support4SDR this is the main problem in this country and children are being denied the treatment they so desperately need.

    Best of Luck,

    Mel
  • katlilkatlil Posts: 17Member
    My daughter had sdr in st Louis in August 2012 shortly after her 6th birthday.

    We were told not to do it by docs in the uk, but we went ahead after reading all of the positive stories from other families. Our only regret is that we didn't take her over when she was younger.

    Prior to sdr she wore long Amos, had 6 monthly Botox injections, was on 30ml of baclofen daily, walked outdoors very clumsily in a k walker, and crawled around the house.

    12 months later she now wears dados, the baclofen has been flushed down the loo, no more Botox, and walks with crutches. She can also take around 35 independent steps.

    The aftercare is tough, and if you aren't prepared to put in the hard work - around 3 to 5 hours of physio per week - then don't consider it. However, the results are truly amazing, and you can see your child getting stronger and more confident as time goes on. Sdr really does change lives.

    Happy to talk to anyone if required
  • JDWilsonJDWilson Posts: 90Member
    Hi everyone. You may be interested in a story which is to appear in Take a break magazine on the 20th September 2012 its about a girl who had SDR in Bristol. Ive been following this childs progress through Facebook and she is doing well. Hope this helps.
  • grufstergrufster Posts: 1Member
    Hi,

    I missed the story but would be interested in following her experiences with the Bristol team. Any ideas how to follow online?
  • JDWilsonJDWilson Posts: 90Member
    There is 2 girls in Ireland who have had SDR one in St Louis and one in UK. They are on Facebook under "Casey and Kayleys dream" and "Casey's Dream appeal" if you were to ask the mums they are both really nice and happy to answer questions Both are delighted with their daughters progress following SDR. It is really good to see how they have progressed as I have kept track of their journeys from the start. SDR is not a quick fix as extensive physio is needed post op but it does seem to reduce Spasticity which causes a lot of problems. My daughter has Not had SDR as we didnt know about it until she had servere contractures and needed Multi level surgury which she has benefitted from but it was MAJOR work. I hope SDR can help lots more children live their lives as full and as pain free as possible. Good Luck to all whichever route you go down it is a long difficult road Life is not easy for our children with CP.
  • hornekatehornekate Posts: 1Member
    Hi

    My daughter is 4 and we have just travelled to the US for SDR. She had also been accepted by the panel in Bristol.

    We are only 5 weeks post op but already we see a huge difference. It has been a huge emotional journey and the operation is not to be taken lightly. Pre op Isabel scissored badly, she used a Kaye walker and bunny hopped. She not longer scissors so her transfers and mobility are increasing rapidly.

    You can follow her journey on Facebook isabelsfund

    Am happy to answer an questions or share our experiences of both Bristol and America
  • Mariatorre15Mariatorre15 Posts: 1Member
    Hi
    My daughter is 7 years old. We live in miami and her neurosurgeon has set a date for her surgery but I really want to go to St. Louis. Could you tell me the cost of it please

    Thanks maria
  • MAS83MAS83 Posts: 1Member
    Hi,

    I know this post is fairly old now but I'm new to this site.

    My son is 3 years 6 months old and has spastic diplegia, he currently walks with a Kaye Walker.

    We have been to Bristol for an initial assessment for the SDR and they have accepted him for a further assessment. We have been told that its very unlikely the PCT will fund the operation and that there is a long waiting list.

    I am now looking into the SDR in Missouri with Dr Park as he has so much more experience and the after care appears to be of a very high standard.

    Would anyone be willing to answer a few questions about their experiences with the SDR??

    Thanks,

    Marie
  • CathySurteesCathySurtees Posts: 3Member
    Hi. I know this post is old, but I am searching for options for SDR. Which is better - St Louis or GOSH? I have been warned against Dr Park but cannot understand why as I cannot find a single negative report. Please help. Thanks
  • Veronica_at_ScopeVeronica_at_Scope Posts: 15Member Listener
    Hi Cathy, you may want to look at the Physical Impairments and Cerebral Palsy pages on this community. You will find lots of information there about SDR including information about Dr. Park and SDR in the UK.

    I do not think there is any criticism against Dr Park in terms of expertise and skills. The only criticism I have heard is that he has never conducted any clinical trials or independent studies which surgeons here would be very keen to do and why NHS England is currently only funding children for SDR that they accept onto the trail theyare running. Funding from the NHS for future SDR surgery will depend on the outcomes and evidence from this trial. In the UK, the NICE Guidelines recommend SDR for children between 4 and 10 with spastic diplegia so that is a criteria when parents are trying to get NHS funding.
    Dr. Park will operate on children from a much wider age range.
    Parents should also consider the intensive physio that needs to accompany the surgery and many parents find that the operation is performed in the USA but the follow up physio has to be provided in the UK which can be very costly.
    As I have mentioned a few times, many of the the surgeons offering SDR at GOSH, Leeds Infirmary, Alder-Hey, Nottingham etc., have been out to America and trained under Dr. Park so you will not necessarily get "better" treatment in America.

    Do have a look at the other pages on the Community mentioned above and at the information on the Scope website. If you need further information, you can contact us at the Scope helpline on 0808 800 3333.
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