the operation

What is Selective Dorsal Rhizotomy surgery?

SDR is a surgical technique developed to reduce spasticity and improve mobility in children with cerebral palsy and lower extremity spasticity. It involves spinal surgery where some of the nerves in the spine are divided to help reduce spasticity whilst preserving function. Evidence supporting SDR has greatly improved and as with all surgery it carries risks but studies show complications are rare.

“Spastic” is often bandied around as a term of insult but all it means is that certain muscles hold themselves in spasm, while others have wasted away from lack of usage. With each growth spurt this tightness and loss of movement increases. This is why SDR is recommended; to remove the spasticity so the muscles can grow correctly and thus support his balance and the chance of being able to learn how to walk unaided and possibly, jump, run and dance!

SDR was first performed in the early 1900’s when complete division of all nerve roots to the lower limbs was performed. The current technique, in which only those nerve rootlets of the spine that contribute most to the spasticity are divided, was introduced in 1918. For many years, Dr Park based in St Louis , USA was the leading surgeon . Many British children have travelled to America for the operation with families like us, raising the funds needed to cover the costs of travel, the operation and post- operative therapy.

http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr

Is Thomas suitable for SDR?

Yes, because he is between  2-11 yrs of age.

Yes because he has a diagnosis of spastic diplegia following premature birth.

No, not at the moment because his legs aren’t strong enough. For the best possible outcome i.e to be able to walk independently, he needs to be able to demonstrate adequate muscle strength in his legs and trunk. Ideally, be able to support his full weight on his feet, being able to hold his posture against gravity. This is what we are currently working hard on as he can reciprocal crawl and walk with his walker. He is getting ready!

When is the right time?

We don’t know but what we do know is that it is no longer available on the NHS. So, if this is something that Thomas decides (I can’t imagine making this decision without his consent), then it is important that we are in the position to be able to make it possible; that we are able to do what we can to help him dance.

It’s a one-time operation though the post-operative care is incredibly important and insanely intense and long! This is one of the reasons why people often wait until their child is older, so the post -operative care will be something that not only they understand the importance of but will also have the motivation to meet. In the UK they do not operate on a child until they are 4 years old, the ‘window’ if you like seems to be from 4- 11yrs with many professional s feeling  that earlier is better because of the harm the abnormal muscle tone can have and the younger the patient the more effectively the brain can learn to control new muscle movement.

SDR will remove the spasticity but it is not a cure for CP and by no means can you have the operation and then start walking, SDR is the start and then the strength building and physio will have to continue for the rest of Thomas’ life.

How will we find out whether SDR is the best option for Thomas?

Most children are referred by a paediatrician, orthopaedic surgeon or neurologist. Our orthopaedic consultant has made a referral for us to visit the specialist clinic in Bristol where they will assess Thomas and make a judgement as to whether they think he would be a suitable candidate. We have yet to hear a date but from there we will be one step nearer to knowing whether we can have the operation here or in the USA. Either way it will still have to be paid for.

What can we expect to achieve?

SDR unmasks the leg weakness inherent to CP. Although reduction to spasticity is immediate after the procedure, it takes time for the strength in the lower extremities to return. Through the physiotherapy programme, Thomas will need to learn to use his body in a new way. It can take up to 2 years for the full benefit of the procedure to become apparent. If, as I explained before, at the time of the operation, Thomas can support his own weight against gravity then there is every chance that he could walk independently and without aids. Dare we dream of this? Yes, we dare!

This is why we thought we would start the fundraising now as in 2 or 3 years’ time we might be at that point.

With your help, as you have shown me only to recently, anything is possible and so with this belief we face this next challenge – to help Thomas dance.

 

 

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