Cerebral Palsy
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selective dorsal rhizotomy

kingboy25kingboy25 Member Posts: 57 Listener
edited October 2014 in Cerebral Palsy
noticed a story in our evening paper. Parents of a two year old trying to raise funds to take their daughter to America for this operation. She can already walk a few steps unaided. Am I alone in thinking this is rather premature decision. Surely as the child will still have C.P won't the operation have to be repeated several years down the line. Would appreciate the views of older children and adults who have experienced this or similar surgery. I was under the impression it had been discarded in this country as not being a long term solution. Please correct me if I am wrong
Kingboy25

Replies

  • allywallywooallywallywoo Member Posts: 1
    I am currently trying to find out as much information as i can on this operation for my daughter who is 3. What I have found out so far is that it is a long term solution. The surgery is preformed at proRobert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry (age 6 and older) although it is possible the Frenchay Hospital in Bristol will offer the procedure in the near future. This is very hard to get funded through the NHS. The benefits of this operation is life changing. However is it not a cure for CP. I hope this has been of help to you. If I come across anymore information I shall let you know.
  • JDWilsonJDWilson Member Posts: 90
    You could try putting Selectve dorsal rhizitomy on face book There is a surgeon in America? at St Louis hospital. There has also been 2 stories in Take a Break this last wk and the week before. You can find a little girl who has had it done on facebook It's called Help Gracie-May walk. the other one is trying to raise money for the operation on twins you can find them on www.happy-feet-appeal.info There seems to be more talk about this procedure recently. There is a woman from Ireland going this week for her daughters op. It is suppose to be available on the NHS from next month But wether this will be available to all who need it or a selected few. There is also the chance that if the child already has contractures and deformatives they may still need orthopedic surgery as well. Ive got this info off the St Louis hospital site. Good Luck with your findings. I was told by my daughters physio it wasn't long term But cutting nerves sounds pretty long term and final to me.
  • elizasmumelizasmum Member Posts: 3 Listener
    I have read the NICE (National Institute of Clinical Excellence) recommendations and the stuff on the st Louis website. There seems that for some children SDR has a significant impact on their gross motor function, but that the clinical trials haven't proven that SDR makes a difference. Conundrum. SDR isn't a cure for CP - in other words it doesn't fix the brain damage - what it does do is reduce spasticity. A reduction in spasticity is a good thing because some of the other secondary problems with CP (problems with bones that require surgery to correct) result from spasticity. What is less clear is how much impact that reduced spasticity then has on the child's ability to move around. I'm trying to find out what are the criteria that might predict whether SDR is likely to have a big impact so I can decide whether my daughter will benefit from it.

    The other thing I'd really like to know from this forum is - if you are a person with spastic diplegia who walks around with sticks and uses a wheelchair - would you have wanted your parents to put you through really quite serious surgery which involves months of intensive physio and time out of school or would you rather they accepted your level of mobility and just concentrated on supporting you to do the things you want to do?. I feel this is a huge decision to make on my daughter's behalf (she's only four but they say the younger the better) and I'd love to hear from any young person or adult who has CP for some insights.
  • renacahillrenacahill Member Posts: 145
    There are videos on UTube of children following this surgery and the results look truly amazing. Having read up on what the surgery entails I would be terrified if my child were facing the surgery. They are operating on the spine and the spinal nerves so anything going drastically wrong could result in paralysis. The studies so far (it is a relatively new procedure so difficult to do long term studies in any depth) have shown relatively few side effects (these have been mainly spinal deformities) and very rare. It does look as though the effects last 10-20 years so far and the surgery fairly safe, but only done in a few specialist centres. As elizasmum says it would be a monumental decision to take on behalf of the child (best results are before the age of 5) and I am only thankful that my grandson falls outside the criteria, so not a decision which needs thinking about for his parents.
  • JDWilsonJDWilson Member Posts: 90
    I have read that it can be done even in Adult hood. But the older the child gets the more Contractures and defomatives they develop which means they are Most likely to need Orthopedic surgery as well. I don't know what to think Any op has RISK. My child is 11 and has been refered to surgeon for orthopedic ops.She has deformatives due to tightness etc in legs.I don't know what we will do whether she will have ops or be left for now. Big decissions. They are suppose to be doing this SDR on NHS from next month. How many of them will they do? Who qualifies? The Americans have had a lot of experiencs and some really good results but they are Very selective who theyl treat for the best results. For now I think I'l just wait and see.Good Luck to all that goes down this route though.
  • TPTP Member Posts: 8
    We have followed this surgery for many years and considered it for our son. We spoke to surgeons in Montreal about both the surgery and the subsequent rehabilitation period.(We were advised that surgery was offered there as well as in a number of centres across the US - famously the Gillette Centre in Minnesota. I suspect I read the same recent article about the surgery in St. Louis.) We consulted with our doctors/consultants/physiotherapists here. In our case - recognising that everyone with CP is different - we chose not to proceed. Our reasoning was as follows - The surgeon we spoke to outlined the possible consequences of the surgery: success versus unexpected consequences. We tried to quantify the risk and determined it was too high in our case. We also looked at a fairly substantial report published in a medical journal - I apologise I don't know which one nor do I have it to hand I can only say it was in our view very reputable and provided to us by our physiotherapist - which indicated that the intensive physiotherapy was as much responsible for the positive results as the surgery itself. (The study compared children of similar mobility levels. One cohort had the surgery and the physio - the other only the physio). As I'm sure anyone considering this surgery is aware the physiotherapy/rehabilitation period after the surgery is lengthy, substantial and critical to the success of the operation. In our case we, at a later date, opted for multi-level orthopaedic surgery on both our son's legs. It was a resounding success - but once again relied upon intensive physiotherapy - some of it quite gruelling to maximise success. In both cases we openly discussed the upside and downside of the surgery with our son. Although we approached dorsal rhizotomy when he was too young to really understand the risk he was aware and was prepared to commit to the work it would require during the rehabilitation. It was impressed upon us repeatedly that this commitment was fundamental to the success of the endeavour.
  • JDWilsonJDWilson Member Posts: 90
    Hi TP Thanks for writting the above. I have looked at the SDR and Orthopedic ops My child is 11 has SD CP and able to walk a little She has deformatives and the Typical Gait. Knees together lower lega and feet outwards. We have just came back from seeing out Orthopedic Surgeon who has advised us to go for Major surgery. She needs a op on the bones in her lags to reposition them and secure har feet which are collapsing She will also need a 2nd op 6 wks later on her tendons and muscle. You say your child has had Surgery? what did he have done? Multi-level sounds a lot? I would be really interested to know more Please as this is so hard. They say If she doesn't have the ops She will rely more and more on her chair as she grows gets heavier and her ankles will give way and collapse. Doesn't sound good that either.
  • TPTP Member Posts: 8
    My son had his surgery when he was ten. Multi-level in his case described separate muscle groups. Quads, hamstrings, adductors and achilles tendons. They didn't think he would need bone work but would make that decision definitively when he was in surgery. He didn't. He had had a number of years of botox prior to the surgery which had helped but he was sinking and as he got older the prognosis was that he would be wheelchair bound. The surgery was, for us, very very successful. The surgeons were excellent - measured, thoughtful with comprehensive follow-up. The physiotherapists were key to his recovery and progress after surgery. Once again they were outstanding. I cannot stress enough however that my son was committed to his recovery and diligent and enthusiastic about his physiotherapy. Apparently, frustration and depression during recovery are real risks. He has grown relatively tall and worked through his adolescent growth spurts without losing mobility - for us this was a measure of the surgery's success. His surgery was done at Chelsea Westminster Hospital and the combined team of surgeons and physiotherapists exceeded our expectations and can only be described as fantastic. For us this was a life changing and future enhancing procedure. Everyone is different.

    Our son had been under the care of the same team of physios for eight years(since the age of two). He was tracked for three years before the surgery to make sure that it was appropriate for him. The physios and Surgeons used Gait Clinics and videos to create a computer model of his gait. They measured his growth and the flexibility and range of movement he had. The surgery was first raised as a possibility when he was eight. We knew of other groups of surgeons who were doing the same type of surgery and investigated the reputations of the surgeons who had proposed the surgery on our son. We were satisfied that they had formulated a comprehensive plan for both the surgery and the recovery. We sought second opinions but soon realised that this surgery was relatively rare and that there were aspects of it that would be unique to him. Unlike Dorsal Rhizotomy the possible downnside appeared limited to the universal risk of surgery. No nerves would be cut that might result in permanent incontinence. We did not have to contemplate the pain or long term implications of the bone work - something that you will have to factor into your decision. We timed his surgery so that he would miss the least amount of school possible but he was home schooled for a term as he recovered. Your rehabilitation period will be longer and schooling is something you will have to plan.

    I would post the names of the surgeons if it was allowed on this board. The NHS is now obliged to allow the patient to choose his doctors and the hospital that they would like to use. Consequently there should be no reason that you couldn't get a second opinion from the paediatric orthopaedic surgery team at Chelsea Westminster Hospital.
  • TPTP Member Posts: 8
    Only good news in this response. There has been no deterioration so far (after six years). He is much more mobile today than he was pre-operation. My son was walking again very quickly. The immediate soft tissue recovery was about two weeks. He was up working with the physios within five to seven days Then the rehabilitation began. He wore full leg gators initially to force him to use his hip muscles (which had been cut). He walked like Frankenstein for a bit! I had him walking around the block with no sticks within three weeks. The more exercise he did the better he was! The physios prepared a two session a day schedule. We kept him out of school for safety (and because the school couldn't accommodate a wheelchair!) We were able to pack his academic work into a two-three hour morning session. Be aware that the bone work may take longer because of the healing time required. I know one other family who had soft tissue and bone work. They also had very good results but did remark on the length of time that their daughter required to recover from the two separate operations. Like us, her family organised for her school to send a teacher to the house for a couple of hours a day, and set homework by e-mail. My son was physically exhausted quite quickly initially but gained strength over six to eight weeks. Extraordinarily - his academic work improved substantially during this period and he gained a great deal of confidence from the experience.

    Good luck - it sounds as though you have covered all the bases and your daughter is ready for the fight!
  • JDWilsonJDWilson Member Posts: 90
    Thankyou for replying this has helped so much. Samantha has had all that before stuff Botox casts muscle relaxants Gait analysis Braces and we were also told years earlier surgery would be needed as she aged (11ish) We are under the care of a Dr Bliss at Newcastle RVI Who we have heard is Good. He seemed to know what he was talking about and discribed Sam's difficulties perfectly. My worry is that she will be wheelchair bound IF we don't have the operations He did tell us she will rely more and more on her chair if we don't operate. Our physio has also said her ankles and feet are collapsing so it all tied up. It is difficult knowing what to do for the best But I don't se we have a choice if she is to keep mobile. I am so pleased you had a possitive experience with the surgery It sounds similar to Samantha except for the bone work. I don't want to think how long it will be until she CAN walk again it will take time and a lot of work but what choice do we have? How long after the operation was it until your child was on his feet again? how long till he was back to how he was before? and has he progressed and improved since or is it more that he hasn't deteriated? So much for CP not being progessive eh? It may not be But ours would have ended up worse as they aged. I'm not sure if a second opinion would help or delay and confuse things Samantha is getting more pain daily and if this continues she won't beable to walk through the pain. I have to have Faith in her Surgeon and just get through this one step at a time.I have tried to find other families who have had this done and as youve said this surgery is Tailored to the child so every outcome could/will be different also the amount of effort they put in will decide how well they do afterwards. We also thought of school and it will be done the week before half term automatically giving her a week off after op then maybe another 2wks and wele see if she could go back for 2/3wks before next op they are only 6 wks apart.That will take us to beginning of April and Easter time.School will be looking into Home/school too. So many things to think of eh? that was another good reason to get on with it Before she gets to important course work and exams. The Frustration She has already so that won't change after the ops and she is VERY determined so put to work correctly will help her recovery. Well 15 wks left till 1st op Countdown begins (after xmas) We ARE going to enjoy xmas hopefully before Stressing out too much.
  • JDWilsonJDWilson Member Posts: 90
    Thankyou It's so nice to here of the Light at the end of the tunnel. It looked a bit Black for a little there. So nice of you to let me know of the other family too. I am a bit concerned at the recovery time But carn't do anything about that. She Whe will back in the swimming pool asap She LOVES swimming and that will help her recover. It would be a Bonus if school work improved for her too Fingers X. One step at a time though. I feel a bit better about the upcoming ops after hearing 2 possitive outcomes Everyone is different but hopefully things will improve For Sam too. We are just starting out on the op road It could be long and difficult but will just have to take each corner as we meet it. Thankyou so much for your Support It has helped a great deal. xxx
  • JDWilsonJDWilson Member Posts: 90
    TP I have just spoke to Physio who is against these ops propossed for my daughter. He thinks she'l be ok IF she wears her braces (what 24 7) She has pain evey day which is getting worse Physio says Growing pains? What for 18months? Why are they doing this It was hard enough before Without getting conflicting advice and Mixing me up. Physio has said he is a good Surgeon and will do a Good job and she could improve after ops IF she puts the work in. Physio said does surgeon know how active she is? We live in Rural area and physio would Only be once a week. Did you come across this or did they back the surgeon? If she has the surgery she has a Chance to improve If she doesn't She stays how she is Or deteriates because carn't keep her braces on 24 7. So she may need ops further down line anyway. They should have discussed all the PRO's and cons Before involving us Do they not think It's hard enough?


    Totally p****d off.
  • TPTP Member Posts: 8
    I can understand your frustration. I don't know all the circumstances so my thoughts on this may not be helpful. The most important piece of advice I can give you is to take complete control of your daughter's health care. It is extraordinary that the surgeon and the physio are not on the same page and are giving you conflicting advice - nonetheless, over the years I heard conflicting advice on numerous occasions. Call the surgeon tomorrow. Tell them what the physio has told you and ask him if this open difference of opinion is normal.(It's not.) One of these medical professionals is behaving unprofessionally in this situation and it would be useful to know which one it is - The most troubling part of your story is that there does not seem to be an agreed plan of care for your daughter which all members of the team caring for her subscribe to - You must not go forward with a team which is split over the merits of the operation. Get a second opinion immediately - either from another surgeon or another physio. From the way you have described your daughter's condition it does seem as though she might benefit from intervention, the surgeon obviously thinks so - if the physio is against it they should explain their reasons to the surgeon as well as to you. They should do that tomorrow. Why a physio would contradict a surgeon in the run-up to an operation is a mystery to me. It is crucial to understand which one of them is giving you the best advice!

    If you go forward with the operations then you must remember that you are the expert on your child. You have to fearlessly take the responsibility that comes with being the expert. If the physio can only work with you once a week, then you will have to be the physio. Before the operation(s) learn the exercises that you will need to do each day and have the physio design a schedule for you. Keep to that schedule and make sure your daughter signs up to help you keep to the schedule.

    Being **** off may well be the way forward - politely challenge everything anyone tells you and make them articulate clearly and comprehensively why they are advising you to take a particular course of action. Be prepared to be thought of as difficult or as a parent "in denial" about the true situation of their child. Generally speaking health care professionals see your child for a tiny fraction of the time that you do. They drop in and out of your life. Be rational and realistic - and then be aspirational for your daughter - if you don't no one else will.

    Good luck - i

  • JDWilsonJDWilson Member Posts: 90
    Thankyou So much. My Dad also said he thought it Very unprofessional. Physio suppose to be contacting Surgeon to Disscus operations and aftercare and Inform him how active she is at present and arranging a meeting with my husband and I to discuss his oppinion with another physio. My husband will not be happy at all We may need a new physio afterwards If we can't Trust our team of Professionals Who can we trust? I have been leaning more to surgury because it seems to be the only way she has a chance to Improve and we were told when she was little she'l proberbly need surgury later (11or 12yrs) I just feel this is So unfair and they should have agreed the Best Care for my daughter before involving Us. The ops arn't until Feb so we have a little time to play with. My dad suggested going to see my Gp to tell him about the distressing situation. Thankyou again for your Support.
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