SELECTIVE DORSAL RHIZOTOMY (SDR)

Frequently Asked Questions

 

Here at Henry's Site we get plenty of messages from parents in the UK who have recently found out about Selective Dorsal Rhizotomy and want to know more. It does seem there are common themes running through the emails and we have decided to post an FAQ section which may help address some of these enquiries and clear up any misconceptions. I have tried to include a selection of the most frequent questions. Through our own experience we have faced most of the issues that parents from the UK considering SDR are confronted with and started Henry's website to share as much information as possible. Hopefully along with Joan's excellent Facebook group for 'Selective Dorsal Rhizotomy,' this information is now much easier to access and will cover many of the questions which arise.

 

What is Selective Dorsal Rhizotomy? - If you haven't found the SDR page yet see here.

Why don't they do Selective Dorsal Rhizotomy in the UK? -

        Well, they do and they don't. They certainly perform an operation at the Robert Jones & Agnes Hunt Hospital in Oswestry which is called SDR, but the similarities between that procedure and Dr Park's start to end there. The UK procedure is a 6-7 level traditional laminectomy (follow this link, it isn't pretty) and recovery time is 6-7 weeks. The operation is also far more conservative too, with only the s1 root bundle being selectively cut. This means that if the patient is a toe-walker who ambulates with walking aids, the chances are that they will still need these aids, but their GAIT and walking speed may improve slightly. What? That is a major operation for such small gains. In my opinion SDR is too powerful a resource to use for such small gains - like using a sledgehammer to crack a nut. This is also why the selection criteria is so tight at Oswestry, because they want children over 6 years old that are already ambulating independently. I think this is dangerous in itself, because the risk of longer-term back complications from this type of procedure could inhibit any progress gained from the rhizotomy.

UPDATE (14/12/10): The NHS will not get funding for procedures which are listed by the National Institute for Health and Clinical Excellence (NICE) as only having 'limited efficacy' as stated in the 2006 NICE review of SDR. Now that report was based on the traditional version of SDR (the Peacock method) and does not take into account the entirely different version developed by Dr Park. After much badgering, NICE have now conducted a new review which will be published on 15th December which has a wider scope and includes more input from consultees familiar with Dr Park's work (including Dr Park and Henry's Daddy). This new document looks reasonable compared with the older review and although it may restrict access to SDR in the UK, it is a step forward. Two UK hospitals are currently very interested in offering SDR and have two great neurosurgeons working hard to champion Dr Park's technique. John Goodden at Leeds Hospital and Kristian Aquilina at our local hospital Frenchay both feel that they will be in a position to offer the surgery within 12 months. However, the big sticking point will always be funding which will need to come from each patient's Primary Care Trust (PCT).

 

Well why is Dr Park's procedure so different. -

        Dr Parks procedure is pretty unique. A lot of people here in the UK think that we are behind the rest of the world in terms of medicine and SDR is an example of this. Well to some extent we are, but it also must be remembered that only a few people in the world are doing SDR like Dr Park and certainly no-one has his experience. It's not just people from the UK who want to have SDR with Dr Park, but people from all over the world (and indeed from across America). The surgery itself is far less invasive than the UK version, with Dr Park just removing a small piece of bone from the lamina (which grows back over), there aren't even any stitches as the incision is glued. Dr Park will also perform the rhizotomy down to the s2 root bundle which means a lot more spasticity can be released, in particular the heelcords, meaning patients may be able to get their feet flat on the floor for the first time. Recovery rates are rapid and patients are discharged after a week. The other major difference is that Dr Park will perform the surgery on much younger patients (from the age of 2), which means that that the children go through important growth periods without the inherent spasticity and therefore reduces the risk of deformities.

How long will we have to stay in St Louis? -

In general it is worth putting aside 4 weeks. Patients from the USA can return home a week after surgery and return for the follow-up after 4 months. UK patients, are discharged from hospital after a week, but need to attend 3 weeks of therapy before going home and returning for the follow-up after 12 months.

How much will it cost and where do we stay? -

With the surgery and accommodation, the costs will probably be around 40k, but the team at St Louis can give you up-to-date estimations for the surgery (remember it will vary with exchange rates) and give ideas for places to stay. We stayed at the Marriott Residence Inn (Downtown) which really worked for us and they run a shuttle bus which will take you to the hospital and back when you need it.

That's a lot of money, will the NHS help out or will we need to fundraise (any tips) ? -

The NHS will not offer any funds towards this treatment. We were fortunate enough to cover the costs by fundraising.

The first thing we did is set up a separate bank account to keep any money raised and for people to donate directly into. We set up an account with Lloyds called 'The Henry Ford Appeal' which is managed by a family friend and has three signatories of which two are required to withdraw any funds. Our friend who runs the account has kept a record of all monies going in and out in case we need to be accountable for it in the future. We also set-up Henry's website, which you have found. The reason for this was that as most people have access to the internet it was an easy way to keep people informed about Henry and what we were trying to do (it's easier typing a weblink into a message than attaching lots of documents or writing lots of paragraphs). We also hoped it would let people in the UK know about Dr Park and his procedure as when we was researching it there wasn't any one site where we could go to gather this information. I know that other people have set up websites, but others have set up groups on Facebook. I think Facebook has become a very powerful tool and it should be utilised used it as it can reach so many people.
 
A huge factor which helped our fundraising was our involvement with the local press. We were in the local paper most weeks and also on BBC local TV and radio. It seems people from local communities would rather get behind causes that are close to home and which are real to them rather than just giving money to national charities. It is certainly what we found. Once your story was out there people started coming to us wanting to help. We organised a number of events, for example a fundraising party with a local band and disco, a toy sale at a church hall, quiz nights, lots of sponsored events etc. If you look at the 'Big Thanks' page on our website it might give you some more ideas.
 
Another thing we did was to apply to any charity (local and national) who we thought might help. It doesn't cost a lot to send an application letter and if they say no you haven't lost much, but if they give a donation all the better.

How do I apply and do we need to go to St Louis for an assessment? -

If you contact the team in St Louis Children's Hospital through their website, they will send you an information pack telling you all you will need to apply, including MRIs, Xrays, etc. You will not need to travel to St Louis for an assessment providing you can provide adequate video footage (on DVD or YouTube for example) so that Dr Park can make an informed assessment. Obviously there is nothing better than seeing him in person but as the logistics are difficult for people in the UK, this is the next best thing.

Will my doctors/consultants provide the MRI/Xrays for an operation in a different country -

This is a difficult subject and it will vary between local authorities and individual doctors/consultants. The fact is, most of these professionals do not know enough about Dr Park's surgery to offer advice or authorise the relevant scans. Their knowledge of SDR is probably limited to the work at Oswestry, where they are still only really doing clinical trials. We were lucky because we had been discussing SDR with our consultants for a few years and they were very interested, especially our neurologist. Dr Park is a neurosurgeon, not an orthopaedic surgeon and from our experience, neurosurgeons are more interested and helpful in terms of SDR than orthopaedic surgeons.

So if the NHS don't know much about Dr Park's surgery, will they provide aftercare when we return -

Again it will vary from place to place, but in general I wouldn't count on NHS therapy being provided at the level that is necessary. We did manage to get extra therapy to begin with from our physio team in Bath to compliment the work we were doing, but this did tail off and now we're back to once every 2 or 3 weeks. Although we thought about private therapy (and even tried a couple) we didn't find a suitable therapist, particularly a paediatric one, who could engage Henry and challenge him. From an early age we have always done Henry's exercises ourselves and find there is no-one better to motivate him than us because we know what makes him tick. So we made sure we worked with the wonderful therapy team in St Louis so we knew what was required of us when we came back and have been working hard with Henry ever since. Therefore, while you're thinking about post-op therapy, make sure you are comfortable with doing the therapy yourself as you will need to be fully committed to get the most out of this special chance that Dr Park gives you to maximise your child's potential. Our own personal motivation comes from seeing Henry continue to improve and do new things all the time.

Just to add to the point about private therapists, we did take Henry to the Footsteps centre near Oxford for a 3 week intensive therapy session, including spider therapy and found the therapists here to be excellent. However, this does mean that it is very popular and sessions are hard to come by. More details can be found at: http://www.footsteps.ltd.uk/index.html

How long will it take after the surgery before the patients can walk unaided -

This is a question we've been asked a couple of times and we wanted to included it because it must be stressed that every patient is very different. SDR is not a magic wand and will not make every child with spastic CP walk unaided. The procedure is amazing and removes the spasticity, but what it basically does is give you a 'blank canvas' to work with. Without the spasticity, the patient has a better range of motion and can begin to access muscles that were inaccessible before because of the spasticity. It does not mean that this will definitely lead to independent ambulation as there are so many factors that influence this. Dr Park has so much experience and will offer his opinion of what to expect for each individual following SDR. We would love for Henry to walk independently and Dr Park has told us that he thinks he will in protected environments. However, this is not everything for us and Henry's quality of life has improved so much since the surgery that, even if it doesn't happen, we know we have still done the right thing. It's little things that we notice as parents but others may not, which have changed our lives. Henry's legs don't hurt him anymore, he is more confident, better at toileting, transitions are easier for us, the list goes on. Walking is a dream we'll keep striving for but the benefits of SDR are much further reaching.

Hopefully the FAQs will provide some useful information. There are now some pretty good resources available for finding further information including the Facebook "Selective Dorsal Rhizotomy' group, St Louis Children's Hospital website or contact webmaster@henryfordtrust.co.uk