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SDR

KellyJKellyJ Posts: 4Member
edited February 2015 in Parents and carers
Hello,
I'm new to this forum but wanted some advice & thought this would be the best place.

My beautiful daughter Sadie is nearly 3 yrs old & has Spastic Quadriplegia. She has had lots of various therapy most of her short life including hydrotherapy which she responds well too, she has also quite recently had Botox in her legs which has had amazing results.
The SDR operation has been suggested & I've done extensive research on this operation & all it entails but I wanted to find out & talk to someone who has actually been through this procedure either themselves or with their own children.
I know it would be a huge & life changing step for Sadie & us as a family but I'm not naive to put my daughter through such an invasive operation without knowing & understanding it entirely.

I would really appreciate any feedback, comments or experiences.
Thanks
Kelly. X

Replies

  • RockyRocky Posts: 76Member Listener

    Hi Kelly,  SDR is, as you appreciate, a huge step and not something to be entered into lightly. The surgery is invasive as it involves identifying the specific nerves from the spinal cord which are causing the spasticity (tightness in muscles) and then dividing or cutting those nerves.  The procedure has to be accompanied by intensive physiotherapy for up to two years.  Sadie is quite young for this surgery.  I appreciate that a lot of the literature indicates that children as young as 2 years old can benefit and certainly in America, they have operated on children that young. In the UK, the surgeons will often not consider SDR until the child is over 4 and optimally around the age of 7.  These children have often had tendon operations and/or Botox first.  Also SDR is best suited to children with spastic diplegia although children with quadriplegia have been accepted.  The information on the Scope website gives a list of where in the UK this surgery is offered and it would be worth you exploring your questions with the specific team at one of these centres.

    I expect you will get responses from parents whose children have had the surgery.  In the majority of cases is appears to be very successful although you will have to ensure you and Sadie can commit to the long term physio. I am not saying you should not pursue this just that you need to be cautious and thoroughly informed. You are doing the right thing in researching the treatment thoroughly and asking for feedback so best of luck with your decision.


  • KellyJKellyJ Posts: 4Member
    Thanks Rocky, I really appreciate your response. Sadie's intial diagnosis was spastic diplegia but due to some stiffness in her arms the Neurological team at GOSH suggested quadriplegia. I have spoken to the SDR team at GOSH in great detail & also the SDR lead physiotherapist at The Portland, they informed me that surgery can take place from the age of 3 with 6 -12 months of privately paid intense physiotherapy twice a day which is why I understand that the operation, as big as it is, is just a small part of this process.

    This isn't something I'm looking to do straight after Sadie's 3rd birthday but I want to ensure, I'm fully informed before considering & fundraising for this operation.

    Your response was very informative & I really appreciate it.

    Thanks
    Kelly
  • RockyRocky Posts: 76Member Listener
    Hi again, am glad you are reading and researching this option before you commit.

    If Sadie is attending GOSH, you are in very good hands and they will not perform SDR unless they are sure it will benefit her. The leading Consultant at GOSH for SDR is Kristian Aguilina. He is excellent and one of the pioneers for SDR in the UK. He practices the less invasive surgery (as is performed in the USA) and has lots of experience with this procedure.

    As you probably also know, NHS England are still conducting trials on SDR with a view to a decision around funding the surgery via the NHS. Hopefully there will be a decision on this soon as it does seem to be a technique that benefits a lot of children.

    Best wishes.
  • Kat17Kat17 Posts: 2Member
    Hello. We had Sdr in St. Louis when my daughter was 2 and half. It's the best thing we could have done. My daughter went from no mobility to walking in a Kaye walker. It's been a hard slog and improvements are fought for, but three years down the line we are still seeing improvements. There are lots of other benefits, such as reduced sensory issues and more comfort. I'm so glad we didn't wait till she was older. The damage from the spasticity would have been worse. It was much easier to do the physio before she was at school. It was hard and if I'm honest I would have hoped for more of a result from the Sdr, I don't think she will ever be an independent walker, but I would do it again in a flash.
  • NeedtoknowNeedtoknow Posts: 4Member
    Hello, we've just had SDR in St Louis, my daughter is classified quad and just turned 6. We think it's the best thing we've even done for her. I really recommend you do your research and if you haven't already joined fb do so and start following the St Louis SDR facebook page and SDR UK page - think that's what they are called but you will find lots and lots of parents going through the thought process of research and trying to make treatment choice decisions for their child. Also you will find lots of information in the St Louis group in the 'files' section. SDR is not a panacea, but SDR that many people used to know in this country is not the same as what is now being done. With regards to age, St Louis do think the earlier the better as spasticity has less time to cause damage to the body. Also I know that a 3 year old has recently had SDR at Bristol. To give you an indication that SDR is considered more and more by those with younger children my daughter (who turned 6 whilst out in States) was the oldest one to be operated on that day (2 other children had op that day with Dr Park). Most parents whose children end up having SDR tend to say they wish they'd done it sooner if there child is older. I certainly wish my daughter had it when she was younger that she was (we had 3 rounds of botox etc) as it was only when she was about 5 that we saw her knee turning in much more and also just getting her to walk now is more of a challenge as she has further to fall if you get what I mean. Good luck, it took us quite some time to decide our path and fundraise. If you are one of the lucky ones to be funded then great, if not unless your lucky with a quick fundraise you might be looking at a least a year of fundraising to raise costs of op and post op physio required.
  • KellyJKellyJ Posts: 4Member
    Thank you so much Kat & Need to know!
    Your comments & experience is really helpful.

    How did you know that SDR was the right thing for your daughters? How much mobility did your daughter have beforehand?

    SDR is now being done at The Great Portland Hospital in London which is where we would be having it done if we decide its for the best! We started fundraising last year for other equipment that Sadie needs so we have started with raising money.

    How long & often was the private physio afterwards? I was told twice a day, every day for between 6-12 months.

    I've tried joining the SDR Facebook page but my request is still pending & has been for about 6 months. Can anyone invite me to join?

    Thanks again for all your help. It's vital when looking into something this life changing.
    Kelly x
  • NeedtoknowNeedtoknow Posts: 4Member
    Hi
    We had three rounds of botox and also attended Bobath therapy. They were good in their own rights but I think it was all the research I did that made me think SDR was right for my daughter along with botox almost giving us an idea of what progress could be made if spasticity was removed. The frustrating thing we found with botox is that we would be making some progress but it was only temporary as the spasticity came back. Also you can only be given so much botox each time and because my daughter had such strong spasticity in her legs, they concentrated on the abductors and hips/hamstring areas and her plantor flexor area never got a look in (ankle/feet area) or even looking up towards her arm/shoulder areas. We just realised after lots of therapy input that progress was far too slow for my daughter to gain real progress in key motor skills as we were up against so much spasticity, SDR would give her this chance to progress. If you tell me your facebook name, I think I can join you to the SDR UK group, I tried Kelly J but didn't come up with anything. If not, I can put a post on there saying your fb name and that you've been pending approval for six months - that's not good! Definately join the St Louis fb group as well. Even if you are not considering going to Dr Park there is a lot of knowledge passed around on that group as well and quite a cross over of uk sdr's are members of it too.
  • KellyJKellyJ Posts: 4Member
    Hi,
    Thanks so much, your daughters battle sounds almost exactly the same as ours! We attend Bobath every 6 months & have had Botox & I totally agree, the effects were fantastic but they are very short lived & now after 3 months, the botox is wearing off & she is incredibly stiff again. I also read that after a long period of time, Botox will have less effect so that makes me look towards a more permanent solution because after Botox Sadie has so much more mobility, she is able to sit for the first time & getting around & even just holding her is so much easier. But her main problem is also plantor flexor area & AFO's just can't heal the spasticity in that area. She is now being referred for serial casting on her feet & ankles to help.
    My FB name is Kelly Fisk if you could friend request me & add me to the group that would be great. It's been so much help chatting to you all & I'm starting to feel positive again. You can't help but feel like you hit a lot of brick walls with the constant therapy & short lived progress. X
  • rvl100rvl100 Posts: 3Member

    Hi Kelly,

    I hope you've found some help on the SDR UK Facebook page now. I noticed you had joined.
    My daughter is 2, but hasnt had SDR yet.

    Please feel free to add me if you like, my FB name is Rachel Hookings.

  • Jude1Jude1 Posts: 3Member Listener
    edited July 2015
    Hi Kelly,
    My son has just become the first child to have SDR at the Portland last Saturday. Mr Aquilina is the UK's leading Surgeon on this procedure in my opinion following my research. The operation went perfectly and Mr Aquilina has shown so much care and understanding of what we are going through. He has taken so much time to get to know us and how my Son's condition affects our lives. Following our experience of dealing with Mr Aquilina, I would recommend that anybody has an assessment and discuss SDR (if you are considering this route) with him as he is fantastic and never once put pressure on us. The Portland is also an amazing place to have an operation and to recuperate. The staff have continued to ensure that we are comfortable and cannot do enough for us. I feel that we have been blessed to meet Mr Aquilina and to have had the operation here. My wife and I have never cried so much to the build up of the operation and the staff have tried to make the day of the operation as comfortable as they could. Once the operation was over and it was a success then we managed to relax. Mr Aquilina has visited our private room at the Portland every night to ensure that we are ok. The nurses and doctors continue to ensure that we have everything we need. The food service is incredible and we have been treated like adults and made to feel so special. This has made the operation more easy to deal with.
    I was concerned with what to expect from my son following the operation and what the Physio therapy would be like. The Physio girls have been so professional and really know how to motivate my son. They have been incredible and my son is progressing much better than I could have imagined.

    I just wanted to share our experience as you stated that should you go down the SDR route then you would consider the Portland. Should you feel SDR is right for you then I can say the Portland and Mr Aquilina are definitely the right choice and I would not have chosen anyone else in the world. I understand that numerous people have fund raised so much money to go to America as there were limited choices. However, why pay a much higher amount when we have one of the worlds leading surgeons here at the Portland. Children can get their SDR operation here much quicker due to not needing to raise as much money. We have also had so much support from friends and relatives visiting us in London rather than being in the USA.
    I feel so relieved that we have a new alternative in the UK instead of going to the USA.
  • yvieyvie Posts: 2Member
    Wishing you and Sadie all the best on your decision making and journey. My son had just turned 4 and had SDR at GOSH under Mr Aquilina with NHS funding - we have been extremely fortunate. We are now over 6 months post the op. The support from GOSH has been fantastic (reviews, orthotics, liaison with our NHS community physio). We can always call and get a great response. The post-op physio was well structured there. The journey has been worth it and 6 months on, my son can stand independently for the first time ever. He has diplegia (level 3 so moderate/severe), toilet trained within weeks and his fine motor skills and confidence have increased very much. His range of motion has been the biggest area of gain and my son can now position his feet flat on the floor which was not at all possible before without severe clawing, in turning etc. His transitions have all improved so much. It has been a hard slog (his confidence was knocked for a few weeks after the op) but worth it. We do have fantastic NHS physio support (3 times a week including hydro) and also have private physio an extra 2 or 3 times a week. Wishing you so much luck. I, like you, was so unsure but from my experiences, there is no looking back.x
  • Jude1Jude1 Posts: 3Member Listener
    Another fantastic story highlighting the skills of Mr Aquilina and I am so pleased that you were lucky enough to get the support that all parents should have from the NHS.
    How long did it take you to get SDR on the NHS?
    My view is that we should all be able to get SDR much easier through the NHS. The figures show that numerous parents are travelling to America and my experience of NHS support is poor.
    I also read on the SDR UK site that there is no further funding until it is reviewed in April 2016.
    Therefore, until this is made more accessible I want to give parents of children who are raising funds to visit the USA the info to consider visiting Mr Aquilina at the Portland. They will be able to get the operation done quicker due to the lower costs and through such an experienced team. The stay at the Portland is also such a relaxing place for parents and children as patients to recover from such an emotional journey.
  • elizasmumelizasmum Posts: 3Member Listener
    Hi my daughter has spastic diplegia and had SDR in the States in 2011. Many years ago I used to be an epidemiologist (the people that assess whether medical interventions work). So assessing SDR was a big challenge for me. Here are my conclusions as an epidemiologist and parent.
    1. Children with cerebral palsy do not progress from one gross motor level function to another in their lifetime (they are graphs of 1000's of CP children to show this). No other medical intervention (botox etc) even claims to be able to achieve this. So, if a number of children are progressing from one GMF level to a higher one following (I stress, non-invasive) SDR then it stands to reason that the operation has enabled the change. There is no doubt that SDR of the kind that Dr Parks and Dr Aguilar is practising, works.
    2. Who it works for best and what to expect from it - ideal age, diagnosis etc is what needs to be defined.
    3. Beware the St Louis website - it would have you believe that all children with SDR walk independently. This is not deliberately done - but I suspect, suits their marketing. Many children do not walk independently even when predicted to do so - my daughter included, but benefit enormously from the surgery. Also Dr Parks has never submitted their results for publication - I can't think of any good reasons why this hasn't happened.
    4. Keeping up physio after she started school was really hard and still is. If I had my time again I would have done it when she was four and not in school.
    5. The best 'physio' we had was not a physio but a personal trainer who was great with kids. So you don't have to spend the money on a qualified physio to do the daily sessions- you just need a physio to supervise someone who knows enough and can motivate your child and make the exercise fun.
    Good luck!
  • Jude1Jude1 Posts: 3Member Listener
    edited July 2015
    I totally agree.
    I have continued to deliver physio therapy with my son since age 2 and he has also had some support at school. I have a physio who will oversee the physio that I will continue to deliver at home. We also intend to review this on a regular basis with the Portland to see what else is required.

    He is such an active little boy who loves to play football. We intend to start horse riding, continue with swimming and continue on his trike. I decided to visit Mr Aquilina at the Portland as you are assessed at first hand by a specialist team and it is easy to visit your specialists in the UK. I understand that there is a lot communication via Skype and Internet from the USA and the costs are much more than I have experienced at the Portland.
  • ElaineJElaineJ Posts: 4Member
    Hello

    I am also new to this forum. My son is 3 years old and has spastic diplegia. He has just had his second round of Botox and is now wearing AFOs. He has recently been prescribed baclofen and has just received his standing frame. SDR was briefly mentioned and I am carrying out my research.

    I am looking for any advice? I also sent a join request to the SDR Facebook page about 6 months ago and have received no reply. Can anyone help?

    With regards Botox, is there a limit or will it just continue as he grows? Also with SDR what is the optimal age?

    Any advice would be very welcome; Thank you in anticipation.
  • RockyRocky Posts: 76Member Listener
    Really interesting discussions on SDR. I am not sure how far NHS England have got with accepting children into the SDR Trials but have not heard anything official about announcements being delayed although conducting any clinical trial and writing up the results takes time.
    Also a reminder that Scope has a good information product about SDR on its website.
    Dr. Park and the St. Louis Childrens Hospital are excellent and he has performed many SDR surgeries. I believe he has concentrated on delivering the surgery rather than conduct clinical trials but trials are the best way of evidencing that something works and I know many of the Neurosurgeons in the UK who are offering SDR are disappointed that Dr. Parks has not looked at undertaking trials and studies and publishing his results.
    Regarding costs, it may seem on the surface that SDR in the USA is about the same as private treatment in the UK but often the costs quoted in America do not include the long term physiotherapy that is essential so parents get the surgery in America but still have to get the on-going physio here - either privately or on the NHS.

    Dr. Aquilina at the Portland and Great Ormond Street is excellent but do not forget that SDR is also being offered in Leeds, Nottingham, Liverpool and other areas and many of the surgeons there have trained under Dr. Parks in the same way that Kristian Aquilina has so don't feel you are getting a lesser service if you access the treatment elsewhere.
    With regard to the Botox question above, I do not really know if it just continues. I suspect not and that children would be re-assessed as they grow to see if other interventions may suit them better.
    I would also like to agree with the person who pointed out that children do not just walk independently after SDR. It is a long road, physio is essential and your child may still need other treatments such as medication, surgery, aids and equipment etc.
  • ElaineJElaineJ Posts: 4Member
    Hello

    I was wondering if anyone accesses the SDR UK Facebook page? I sent a join request over 6 months ago and still haven't accessed the page. I cancelled it and sent it again.

    I am keen to find out as much about it as possible and would be grateful if anyone could advise me or help me get access to the Facebook page.

    Thanking you in anticipation
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