Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Selective Dorsal Rhizotomy

GuestGuest Member Posts: 1,968
edited October 2014 in Disabled people

Hello.
I have just joined Scope today. I have a 2 and a half year old son who has Cerbal palsey, we are thinking of taking him to America to have an operation called Selective Dorsal Rhizotomy. I was wondering if anyone has had this operation or know's of anyone who has had this done? and would like to ask how they are doing.
Thank you

Replies

  • ValVal Member Posts: 15
    Andy it might interest you to check out the G-Therapy website. http://www.g-therapy.org My own daughter also has CP spastic quadriplegia, she began G-Therapy just turning into her teens, we have had no surgeries (Laura speaks well and was born at 29 weeks, Laura uses a Kaye-walker). She became much more aware of the correct movement that was needed only after she tried G-Therapy. I wish that I had known of it when she was 1 year old as her changes would have been quicker. After trying G-Therapy she became very much more aware of the movement needed.
    Check also if interested the International site: http://health.groups.yahoo.com/group/g-therapy/ There are many progress reports written up here and also an article in The Cerebral Palsy Magazine. I am wondering if you are in the USA, because this year there has been an article about G-Therapy by a professional in the USA in The Exceptional Parent Magazine (his 5 year old daughter CP plus hydrocephalus has got walking on G-Therapy). A neuroscientist has visited the clinic and posted on previous group of his positive findings. If you can obtain it, it may be a way of avoiding surgery.
    If you want a chat with me join the International site.
    Kind regards,
    Val

    quote name='adicken' date='Sep 9 2008, 12:59 PM' post='24995']
    Hi there,

    I'm new to the forum and wanted some advice if possible. My daughter is 5 years old with quadraplegia, mainly affecting her legs andbalance control. She uses a K Walker to get around and also a wheelchair.

    Our consultant is talking about doing a Selective Dorsal Rhizotomy and although we know what is involved i just wondered if anyone else has had any experience in this area. It seems a very complicated and risky procedure.

    Any advice ot information would be gratefully received.

    Regards
    Andy
    [/quote]
  • HBPencilHBPencil Member Posts: 9
    Hi there,

    I'm new to the forum and wanted some advice if possible. My daughter is 5 years old with quadraplegia, mainly affecting her legs andbalance control. She uses a K Walker to get around and also a wheelchair.

    Our consultant is talking about doing a Selective Dorsal Rhizotomy and although we know what is involved i just wondered if anyone else has had any experience in this area. It seems a very complicated and risky procedure.

    Any advice ot information would be gratefully received.

    Regards


    Andy
  • HBPencilHBPencil Member Posts: 9
    Thanks for all that Val. I'm actually in the UK in Stoke on Trent.
  • GuestGuest Member Posts: 1,968
    Hi Andy,

    We had this procedure done on our son (now 4.5 years) last year. We had to go to America's St Louis Children's Hospital. It has been a year, and the results are good. My son is also quadraplegic but CP mainly affects his lower limbs. Prior to the surgery he was using the kaye walker. Now after one year and few months he walks unaided for short distances. And he is progressing everyday. We do not carry the kaye walker anymore to go to shopping mall or play ground. We are still not there but we are very happy and confident that he would have near normal gait in a couple of years time. Let me know if you have any questions, I would be happy to answer.

    Aaryan's dad.
  • HBPencilHBPencil Member Posts: 9
    Hi Aaryan's Dad,

    Thanks for your information. A couple of questions please if you don't mind answering?

    Could Aaryan walk without his Kaye walker before the operation?
    What is his balance like now compared to before the operation?

    Sorry if these are persoanl and if you don't want to answer then that's ok.

    Regards

    Andy

  • GuestGuest Member Posts: 1,968
    Hi Andy,

    Well I certainly don't mind, I'm happy if I can help.

    No, Aaryan could not walk without his kaye walker at all. We had walking sticks (the tripod ones) for him but he was never comforatble with those. Just before the surgery (he was 3.5 years when he had the surgery) he was able to walk with sticks for 4-5 feet inside the house. That too with a lot of pain. But after surgery it all changed, as most of the stiffness disappeared, he was in less pain. However, the surgery makes you weak and requires a lot of physio for a couple of years. The Surgeon suggested at least 5 times of PT for the first year and 3-4 times for the next year. So it requires hard work but also gives the result.

    We bought an adult treadmill for him, to give him the lost strength back. Now it seems after over an year he got all his strength back and he is building on that.

    Yesterday, we had the peaditrician's appointment and she was pleased to see the progress. six months back when Aaryan saw her, Aaryan was walking independently for 5-6 feet. yesterday he walked all by himself from entrance to the Doctors room. He puts his left foot flat but puts the right one still on toes, we are working on this now.

    Your second question - Before the surgery we did not have any idea of his balance as he always needed support to stand up and walk. So obviously there is nothing to compare against, but his balance is definitely much much better now. He walks, stops, tries to trun around (still can't to do perfectly) and walk. Last couple of weeks he has understood the difference between walking and running. If he wants to run, he takes quick steps and move his hands as if he is actually running. :-)) I won't call it running yet.

    So he is progressing. I would reccommend this surgery to anyonce who is a suitable candidate.

    Please feel free to ask any question.

    -Aaryan's dad
  • ChoccoChocco Member Posts: 7 Listener

    Hi Aaryan's Dad,

    SDR is a subject I have been interested in since my little boy Henry was diagnosed with PVL and subsequently spastic diplegia and nystagmus (he's now 4). I was in contact with Dr Park's team in St Louis when Henry was 2, although we were also investigating the possibility of having SDR at ORLAU in Oswestry with Dr Roberts (due to cost/travel).

    At 2 years old, the Oswestry team told us that Henry was too young and to come back when he was 4 - as SDR is still under scrutiny and the procedure needs to be fully documented and therefore the children need to be able to cooperate with the extensive pre and post op therapy.

    The follow up meeting was yesterday and it didn't go well. Although Henry did have a succesfull gait analysis, he freaked out when Dr Roberts and the paediatric neuroligist examined him and cried while being examined. I feel that this has gone against us and at the end we were told the chances of Henry getting the proceedure was 50:50 (although I think they were being polite - I think the chance is lower). We'll know more in about 6 weeks.

    Anyway, we has also discussed the possibility of going to St Louis and were advised of the differences in procedure and reminded that as doctors get paid per op in the US, they are less selective in the choice of candidate. Also we were told that in the US they also go further than the UK process and go down to the S2 bundle, which can effect other body functions (such as erections/ejaculations). I need to study this further, but was any of this mentioned to you when you had the procedure done? Obviously these type of factors are major influences when we come to decide whether we wish to pursue SDR further.

    You have obviously seen great beefits from SDR and it appears that Henry has a similar range of movement as Aaryan prior to SDR - bombs around in a Kaye frame, walks short distances with his sticks. I know that to maximise the benfits of SDR, intensive post-op therapy is required but we already have a rigid exercise programme we have followed since we've been taking Henry to the Brainwave centre - so this doesn't worry us.

    Anyway, sorry for rambling on a bit, I was just wondering how sure you were that SDR was worth pursuing before going for it and what made you decide? This latest assessment has put quite a few doubts in my mind. Even if Henry is a candidate for the procedure at ORLAU, as they are more conservative, the functional gains may not be as dramatic - they have told us he would always need a frame and further surgery, but his walking speed may improve? Any thoughts you wish to share with me would be most welcome.

    With Best Regards,

    Henry's Dad.

  • GuestGuest Member Posts: 1,968
    Hi Henry's dad,

    I think I am going to need some time to dig out some information from the hospital report and come back. However, prior to the surgery (a day before the surgery was scheduled) Dr Parks team explained to us everything from what is going to happen and what are the risks and also what do they do to minimise those risks. I accepted there are risks.

    I also did my own investigation before we agreed to go ahead. And yes they mentioned it presents risks such as Paralysis of the legs and bladder, impotence, and sensory loss. I remember they mention in order to eliminate maximum possible spasticity without affecting other functions, they divide the S2 nervs into 4-5 rootlets ansd cut some of the rootlets depending how severly they cause the spasticity. They do not cut all of S2 rootlets. More can be found on thiier website. They claim most of their surgerys have been pretty OK without any long term complications (Dr park has been doing this for more than 10 years). I am going to check Aaryan's medical reports and come back to you with specific details.

    It is very important to wiegh the risks against the benefits before taking the decision. It might be true that Doctors there get paid per surgery, but I will look at the brighter side of it hoping they correctly selected Aaryan for the surgery as there is no way I can cross check it. We are already seeing the immediate benefits of the surgery, just hope that he will also do OK in long term without any complications.

    Best Regards
    -Aaryan's dad
  • ChoccoChocco Member Posts: 7 Listener

    Hi Aaryan's Dad,

    Thanks for your reply, it has given me more to think about and more to research further. I will certainly be weighing up all the pros and cons over the coming months and hopefully reaching a decision which is right for Henry's future.

    We have just heard from Henry's physio that the team at ORLAU have decided he is not a suitable candidate for the SDR procedure at Oswestry. I'm not sure who at ORLAU let it slip because we were told that it would take 6 weeks to make a decision. Anyway, I am going to contact them to find out how they came to this conclusion, although I think that major influences were Henry crying during examination, his age and the fact that his GAIT is not good enough to allow pre and post op studies. As the operation is more conservative, I think they like to assess improved walking GAIT in children who are already ambulating unaided to some degree pre-op.

    If anything, this decision may help, because it seems to me the procedure at ORLAU is a lot more invasive and the functional gains may not be as pronounced. Therefore, even if Henry was suitable we would be hesitant to put him through this traumatic experince for what we were told may see an improvement in his walking speed - but he would always need his K walker even for short distances. So although I'm not as upset as I thought I'd be with the decision from ORLAU, I'm a bit frustrated that I feel we may have wasted 2 years to find this out when we had already been in contact with Dr Park's team at that time.

    So the next thing for us is to get repeats of Henry's MRI scans including his spine which haven't been done since he was 6 months old, hip x-rays, reports and the GAIT analysis from Oswestry. Then we can re-open our contact with Dr Park and decide how to proceed. Therefore, any extra information you can dig out from the hospital report would help greatly and compliment my own research.
    Once again thanks for you reply and I may be back on here asking you more questions as they come up if it is ok with you.

    With Best Regards,

    Henry's Dad.

  • GuestGuest Member Posts: 1,968
    :) It's so nice to hear other stories... at the moment we are 2 days post op with a SDR .. my grandson Garrett has Cerebral Palsy.. a tri-spastic.. ok I mean that it effects both legs and his right arm.. the difference already is amazing.... his legs are in splints laying flat and that was never possible before.. today he sat on the side of the bed.. pretty rough but he did well.. we were told that he would not walk until age 5 and then with a walker.. in 2006 he was 2 yr old walking on his knees .. we found an Intense Physical Therapy Clinic and took him there.. he was walking in the middle of the 3rd week independently !! He will return to a similar clinic in Kansas City for the month of January and to include Hbot .. oxygen therapy.. ya'll should check it out.. ..


    God Bless

    *Edited to remove personal website link, please see forum rules*
  • ChoccoChocco Member Posts: 7 Listener
    Hi Everyone,

    We've now had a reply from Dr Park following Henry's evaluation for SDR and he 'strongly recommends' the procedure. he mentions that 'If he has the surgery we expect that his sitting, standing, walking, transitions between postures and level of comfort will all improve significantly.'

    I think that the positive manner of the reply has erased any doubts we had about whether the procedure was right for Henry and we are now thinking about how and when we can get to St Louis. We have begun fundraising and I have started a website which I hope to update with lots of information and blogs charting Henry's progress - which I hope will be a good reference point for others out who are considering SDR. Although I didn't realise how much time the website would need and it needs more work to finish and with Christmas coming I don't know when I'll get a chance. But anyway it can be found at (removed by moderator) if you are interested.
    I'll also try to post updates on here of course.

    Merry Christmas,

    Henry's Dad.
  • tobytotstobytots Member Posts: 1
    Hi,

    I have seen a news article on a little boy of Four who is being taken t oSt Louis Hospital for the SDR procedure.

    My little boy Toby has spastic diplegia, walks with a frame and seems to meet the strict criteria for this, but my question is why is this sort of procedure kept a secret, why do I have to see a news article to find out that this is availalble.

    does anyone else have any info or any parents opinions of this procedure, all I can find out there is bl**dy amazing, and I know that there must be some down sides.
  • ChoccoChocco Member Posts: 7 Listener
    Hi Tobytots,

    I haven't been on the forum for a while because I've been in St Louis for a month. The little boy you are referring to is my son Henry who has just returned from the USA after having SDR with Dr Park. I think you have already found our website and I have sent you a seperate mail.

    Anyway, Hi to everyone else on the forum, especially Aaryan's dad who knows what we have been through. All I will say is that we have been given a gift by our local community, as once they heard about what we were doing decided to help raise the money to send Henry to St Louis. I will never forget this and we hope that Henry will repay everyone by walking unaided (as Dr Park has predicted) within a year or two. He is certainly a determined little boy and the difference in him so far has been astonishing.

    So anyway, if anyone wants to know more let me know. I know I can't post weblinks on this forum, but most search engines can find the Henry Ford Trust if anyone's interested.
    We've still got a long road ahead of us, but we're so glad we're on it.

    Best Wishes,

    Chocco.
  • pugliesepugliese Member Posts: 2
    Hello
    Our son was diagnosed with mild CP. He was born with 27 weeks and is now 13 months old. He has spasticity in his legs and a bit of stiffness in his left arm. We just came back from the States where they talked about selective dorsal rhizotomy on the news. Apparently this surgery helps a lot of young children (2-5 years) with CP who have spasticity in their legs. Sometimes these children can walk normally again! Does anyone have experience with selective dorsal rhizotomy. I look forward to hearing from you.
  • pugliesepugliese Member Posts: 2
    Helllo Chocco

    I am new to this forum. I have read your comments about SDR and I found it very interesting. My son Leo was born with 27 weeks. He had a brain hemorrhage after his birth. With 6 months he was diagnosed with mild CP (his legs and his left arm are effected). He is now 13 months old and we can see that he has difficulties with his legs and his left arm. Leo is getting Physiotherapy twice a week but I am not sure if this will really improve his condition in the long run. We just came back from the States (visiting family) and on the news we heard about selective dorsal rhizotomy at St. Louis children's hospital. I am very interested in knowing more about it. Leo might benefit from this procedure one day. I am not sure how old he needs to be before we look into this. I would be happy if you could let me know more about your decision for Henry to have SDR. How is Henry doing? Have you seen any improvement yet? How did you arrange the post-op therapy? Can you recommend the St Louis Hospital or even ORLAU in Oswestry? I am just starting with learning all about CP and possible treatments. I look forward to hearing from you.
    Leo's mum
  • GuestGuest Member Posts: 1,968
    Hello pugliese

    If you would like to contact the Response helpline we can send you a copy of the Scope factsheet about SDR. It is not on the website as it is two years old and hasn't yet been updated but the general information it contains may be useful for you. We can send it by email if you contact us on [email protected]

    Kind regards

    Forums Moderator
  • ChoccoChocco Member Posts: 7 Listener
    Hi Leo's Mum,

    I would be happy to share any information and experiences with you. I began researching SDR when Henry was 2 years old and for various reasons we didn't get it done until last month when he was nearly 5. When I started there wasn't a lot of information, particularly in the UK so I had to find it. Anyway, I have now created our own website to share some of this information and you can also contact me directly through it by emailing the webmaster. I have put the website address on here before but it was removed so as I mentioned in my previous post, you should be able to find it by doing a websearch for The Henry Ford Trust.

    So feel free to contact me directly rather than through the forum as it would be lots easier. As for the results, we are amazed by the change it has made for our little boy. Henry is doing great and we are doing his PT everyday and getting sessions twice a week with his NHS PTs. At the moment we need to build up the stregth in his legs so we are also thinking of getting a private PT to top up some of his sessions during school time, at least for the first 6 months or so.


    Look forward to hearing from you.

    Chocco.

    P.S. We have an article coming out in this months Full House magazine if it's of interest.
  • cpmom2009cpmom2009 Member Posts: 1
    Hi everyone,

    I am writing from the US, my daughter had SDR this year (february 2009) and I have chronicled it on her blog:

    I have seen St. Louis Children's website/video testimonials also. I decided not to go to Dr. Park. I describe why on the blog.

    Finding a well-qualified surgeon who does a very specialized procedure on a small population of individuals is a very challenging job. I have heard great things regarding Park and his team from parents of patients. Doctors that I have seen who know Dr. Park do not always give such glowing reviews. I'm not sure why, exactly...I just figured (especially as a scientist myself) that all news regarding a procedure, or a doctor, can't ALL be positive.

    My main concern with the initial poster is that I thought SDR was recommended most for spastic diplegics. Park also does tris and quads, but lots of other doctor's don't. It could be because Park's vision is "before his time", and others will follow...or because others don't agree with the risk:benefit.

    There's no right or wrong here...just adding some thoughts, hope no one is offended.
  • nicolasmithnicolasmith Member Posts: 1

    Hello.
    I have just joined Scope today. I have a 2 and a half year old son who has Cerbal palsey, we are thinking of taking him to America to have an operation called Selective Dorsal Rhizotomy. I was wondering if anyone has had this operation or know's of anyone who has had this done? and would like to ask how they are doing.
    Thank you
  • ChoccoChocco Member Posts: 7 Listener

    Hello Nicola,

    We have a little boy called Henry who had SDR 6 months ago and is doing great. More info and videos can be found on our website which can be found by putting 'The Henry Ford Trust' in most search engines. There is also a new 'Facebook' group called Selective Dorsal Rhizotomy, where you will find lots of parents who have taken their children for the procedure (or are thinking of doing it, quite a few now from the UK). Are you on Facebook? I didn't see you but there is someone called Marsha??
    Anyway, feel free to ask us anything and we could always arrange to meet. You know where we are ;o)

    Henry's Dad. x
Sign in or join us to comment.