MY SDR STORY

Recently I've had a lot of people asking me about Selective Dorsal Rhizotomy a.k.a SDR. 

 

So I finally thought I’d put my experience down on paper for anyone who is possibly considering it as an option to improve their lifestyle and condition.  

For those of you who don't know SDR is a surgical procedure in which they open up your spine and sever the nerves that are sending the wrong signals to your brain,  these are the ones that make you stiff/rigid or spastic, thus giving you more control over your affected limbs. Having said that, this is a very brief overview and I will leave a link to more information below. In this blog post, I'm going to talk more about my own personal experience of the surgery, so it could be completely different for someone else. 
 

WHAT WAS I LIKE BEFORE SURGERY?

Before the surgery, I was a very typical teenager who wanted to play video games all the time and didn't want to do any physio or anything that would improve my condition, as at the time I saw it as boring.
Although I did enjoy Sport, I was playing for my local disability Football Club (Swanscombe Tigers for those of you that are interested) but other than that I was your typical lazy teenager.

Disability wise I suffer from a condition called cerebral palsy,  more specifically, diplegic cerebral palsy meaning it mainly affects my lower limbs. My specific type of cerebral palsy means I have difficulty walking unaided and use a walking frame (Kay Walker) or using a wheelchair. I also had difficulty dressing myself and sitting up straight without a considerable amount of effort. 

A photo of Charlie at 13 years old sat in a hospital waiting room wearing a white medical gown, awaiting his SDR surgery,

HOW DID WE APPLY?

Now, this is quite an interesting story,  My mum actually started looking at the surgery when I was about 8 years old, but the British doctors that were working with me advised my mum that the surgery would not be suitable for my needs and would actually have a detrimental effect. These professionals included my GP paediatrician,  surgeon and physiotherapist. I guess it was fear of the unknown as at the time the surgery was relatively new. 

 

However, a few years later when I was age 12, I changed paediatricians, who then asked my Mum  why we never went through with the surgery.  My mum explained the situation and my new paediatrician put us in contact with someone who had had surgery at a similar age to me. At the time they preferred the candidates to be younger so they had less time to learn bad habits that they would need to break after surgery. After a discussion with the family,  my Mum decided that we were going to go for it. 

 

However, the application process wasn't as straightforward as we hoped.  My Mum ended up emailing the hospital directly to ask about how we could apply.  They then advised us to make a video of me carrying out certain movements such as: getting on and off the floor,  sitting in a chair without a back and rolling over. They also asked us to have some X-rays of my back done near the incision area at the lower part of my back.  This proved more difficult than we thought as it was a private operation and the NHS would not fund it as they weren't carrying out the surgery.  Therefore we also had to get the X-rays done privately,  which turned out to be surprisingly expensive.

 

Once we had completed filming the video and had the X-rays done, we sent off everything to the hospital out in America (St Louis)  where they would then make a decision as to whether I was a suitable candidate for the surgery or not. I believe we sent off the application in July time and received a surgery date for the beginning of February. 

IT WAS PRIVATE, HOW DID YOU FUND IT? 

Obviously, being on the American medical system meant that this had to be funded privately, which led to us doing a lot of fundraising events to help raise the money. 

We held Zumba classes, sponsored runs, used collection pots in local shops, themed parties and so many more.

WHAT HAPPENED WHEN YOU WENT TO AMERICA?

We arrived in St Louis,  on 5th of February for my surgery which took place on the 10th of February. I don't remember too much that was out of the ordinary when it comes to pre-op as it was all pretty standard procedure and what I had been through for previous surgeries. 

 

When I first woke up from the  surgery I had this never-ending pins and needles feeling in my feet and according to my parents I was extremely ‘puffy’.  After the surgery I had to stay lying down flat on my back for at least 5 days. During this time I was provided a number of painkillers through intravenous drip such as: Codeine, Paracetamol, and Valium/Diazepam if I had painful muscle spasms.

 

The best way I could describe it is to think of someone completely rewiring your brain and how much your body has to process in order to heal and get used to it. From memory I don't remember being in pain very often more just stiff and sore generally from the surgery.

After the initial 5 days you are allowed to move more and start to sit up.  My most favourite thing was being able to sleep on my belly,  as since I was a kid I've hated sleeping on my back. The one thing I noticed from my first few times sitting up in bed and getting up out of bed was I often felt dizzy or sick due to having spent so long laying down. However, after a few days this did pass. The pins and needles, however, lasted about two weeks. The one thing I will have to warn you about is -  after the surgery you will be extremely floppy,  I remember I was unable to to hold my head up and support my own weight,  having said that don't panic as it's completely normal. As someone who has spastic cerebral palsy, you naturally use your spasticity to support your weight and move around,  the surgery takes the majority of this away meaning you're completely relying on your muscle strength. 


 

Once I left the hospital, I was advised to enrol on 3 Intensive Physiotherapy sessions,  focusing on regaining the strength that I had lost. This included a lot of moving to standing movements,  general walking, getting myself used to being on my feet. I always remember my heels felt really pointy as if they were digging into the floor and I also remember the physios getting me onto the treadmill,  which was something I had never done in my life, obviously starting very slow and holding onto the sides.

It all felt very basic,  as if this was stuff that I've been doing for years, however, it was really necessary to take it that far back,  as at the time I felt really weak.  

Charlie stands on a treadmill in a therapy room after SDR surgery, his physio stands to the side of him. More people are in the background.

WHAT WAS AMERICA LIKE AND WHERE DID YOU STAY?

We stayed at the Marriott apartment and hotel which was really the perfect fit for us as it gave us the facilities of a hotel,  but also gave us our own space as each room was like a mini apartment. We could have home-cooked if we wanted and there was also the option of the meal that the hotel made for us 2 times a week.

No disrespect to my American friends,  but it was definitely a blessing for us to have cooking facilities, as to us it seemed impossible to find any green vegetables. The other great benefits of staying where we stayed, was that it was where the majority of the British people who were also having surgery stayed.  We met lots of different people at different stages of the journey and were able to learn from one another and answer each other’s questions.

WHAT HAPPENED WHEN YOU GOT HOME?

The hardest thing was returning back home and trying to maintain the same level of physio that I was receiving in America.  They recommended that I have some form of physio or physical activity 5 days a week.  However, the issue was that the NHS were unable to fund this amount of Physio.
We did manage to get one session a week from the NHS, however the rest of them had to be privately funded from fundraising and saving.

 

All of the physio was extremely exhausting as I was still developing my strength and because of the increased activity I lost a lot of weight so I was eating more.Originally when I got home I really didn't want to do all the physio,  I wanted to spend time with my friends and play PlayStation, however, all of the doctors said if I didn't do the work I would end up worse than I started out. 

 

Admittedly there were a few incidents of arguments between me and my parents,  as at the time I was young and didn't want to have the surgery, then I was being asked to do all this work? Of course teenage me just wasn’t interested. 

 

Hindsight is a wonderful thing and I would take all of those arguments back if I could. Luckily just after returning home we had the chance to go to the London 2012 Paralympic Games and this is where the switch really clicked.
I went from a lazy teenager to a full-fledged fitness freak! I wanted to become the next Paralympic Swimming Champion, and from that stemmed my love for gym and fitness which has stayed with me.

 

Luckily because of this change in mindset and doing  a lot of swimming and gym,  it took over from all the physio that I was having to do, so I had managed to replace it with something I really enjoyed.  The work wasn’t ‘work’ anymore and it pushed me towards my goal.

So my advice for any parents that are looking at the surgery and wondering what to do afterwards, would be:

Find a sport or activity that they really enjoy and they won't resent you for asking them to join in. As I've got older I've learned and appreciated more and more that putting me forward for this surgery came from a massive place of love and my parents wanting me to be able to do everything I could.

However if your loved one going forward for his operation is younger, they may not realise this. Maybe go through how it will help them or book an activity then can do after the surgery that they might not have been able to do before.

 

I hope that this post has given you a bit more of an insight into to possible challenges and workarounds for this surgery. If you have any questions head over to my socials to ask more: