My name is Steve ley, I’m 36 years old and I grew up in Croyde bay North Devon. I’ve been Surfing since I was a Grommit, this is my story on how Tourettes syndrome has stopped me being able to surf and have to undergo Brain surgery to help me on my way! About 3 years ago, I wrote a big article About Tourettes and surfing the world. I had such a great response and support from it, that I wanted to share where I’m at now. In the last 3 years my Tourettes has got a lot worse, which has caused me a great deal of pain and bother! About 5 years ago, I noticed some muscle wastage in my right arm around my tricep and bicep area. My Physio referred me to get an MRI scan of my neck so I could see what was going on. After lots of waiting and anxiety, my neurologist called me in and said I have some narrowing in my cervical spine at a few levels, C5, C6, and C7.
As a result of me twitching my head back so much all the time its caused spinal stenosis. Over the year, my arm got weaker and wasted somewhat more to a point where I was finding it hard to surf, also strumming my guitar was hard, so I couldn’t gig much. The stress this was causing me sent me into a deep depression and I just didn’t know what to do with myself. My doctors where discussing what to do with me, but surgery was very risky because of the amount I move, so anything they did to my neck would have probably made it worse. Later on that year I started having weird electric like shocks in my brain and would lose my balance for about 5 mins, these went on for about a week. After lots of trips to A&E and more scans they started to think about surgery. I started to get a lot more symptoms, numbness all down the right side of my body and weak legs, which is know as (clonus) from spinal cord damage.
I remember sitting thinking to myself, “how the hell can Tourettes do this to my body, you little shit!” I can’t surf, I can’t play guitar I can’t even hold a pint glass (not that thats the most important thing) lol! I just felt so useless and weak, which caused me a lot more anxiety and depression. Ive always been such a positive person but this was really getting to me, I was having suicidal thoughts and just felt so lost. Surfing is where I release all my stresses and anxiety as most people do I guess, but not being able to do it was killing me inside. I started losing a lot of weight, “not that I had much on me anyway”, but it was really starting to get me down so I moved back to my mums! I felt I had no option, I needed help and wasn’t coping mentally. We sat down, came up with a plan to work on and just took one week at a time. Ive always been very intuitive and something just wasn’t sitting right, so I decided to get a second opinion! I got referred to the National hospital for neurology and neurosurgery in Queens square London. I was pleased to be under such a good team and got a really good opinion so I could move forward.
I had a breakthrough mentally and started to feel positive, I have to thank my mum Jayne for that, she has been my rock though it all! she’s such a kind beautiful human and always inspires me to push forward. It was a cold wet day in January, I remember looking outside just feeling miserable but I felt inspired to get stronger! I said to myself, “I’m not just gonna sit here all winter and be miserable and waste away, I need a focus”. I got out my weights and started trying to lift but nothing was really happening! I thought I needed some resistance and the only way I could do that would be in the swimming pool. I started swimming 3/4 times a week and it was hard at first but started to see improvements. No-one wants to be that guy in the swimming pool flapping like a salmon with one arm but I stuck at it. I remember making the lifeguard laugh loads because every time I took a breath when I went past her I shouted, “SALMON FUCKER” hahahah. She was actually quite fit so that made me train harder lol. I also started running on Saunton beach, about 4k 2/3 times a week and that really helped my legs. I started to see real improvements all round in my body for the first time in years! It made me feel a lot more confident in myself and made me stick at it.
I finally got back in the water that April, I still didn’t have enough strength to get to my feet quick enough and knew I still had a long way to go, it was just nice being back in the ocean. I then joined Saunton Sands Spa and started training there, having the pool, gym, sauna and steam room all in the same place was amazing. I really started to feel the benefits from it and my right arm was getting so much stronger and I was really starting to get fit. After the long winter of training spring finally hit and I felt so ready to get in the sea! My friend Topher lent me his twin fin and said “I needed a bit more volume and it would help”, and when I took it out I got up strait away! So thanks Topher, I actually rode a wave and did a little turn ha! I can’t even describe the feeling, after not being able to surf for like 3 years it was unbelievable, I was like the super stoked Grommit thats caught his first wave lol. I ended up having a really fun surf and got to my feet every wave, even though it was crowded as per usual at Croyde ha. The waves then decided to do their usual thing and go crappy for most of the summer, probably the worst I’ve ever seen it to be honest.
At the end of the summer I was quite stressed and had a lot of stuff going on which made may Tourettes really bad again! My neck tics were so bad and I was falling over so much to a point where I didn’t even want to go out anywhere. I started to get severe pain in the left side of my neck and then my left arm started getting really weak! I was like, “here we go again”, so I got some Physio and thought it would just get better, but it didn’t. It all went down hill from there, so the left side of my spine at levels C5/C6 had pinched the nerve roots causing my left arm to not work. I got admitted to hospital and had another scan and it showed a lot more compression on my spine! It felt like going back in time, and all the hard work id done was for nothing. Because I’ve been through all this with my right arm I was a lot more aware of what to do. I phoned up my doctor in London and he basically said the main thing we need to do its stop your neck tics-because they are so violent and if it carries on you could get paralysis from it. It was the same story as before, they couldn’t operate as my neck moves to much and wouldn’t work! So the only thing they could offer is a treatment called DBS (deep brain stimulation).
So basically what they do is, they drill 2 electrodes deep into your brain and run the wires under or skin down the back of my head and into a battery pack in the chest. That then stimulates the movement part of the brain 24/7 and reduces the tics around 60/70 %. I was like “that is mental but amazing”, so I took a week to think about it and then agreed to do it. They booked me in very quickly and within two months I was on my way up to London to undergo this surgery. I did some research on it but didn’t really look to much into it because I kept freaking myself out that a surgeon was gonna enter my brain. The main risk of brain surgery is infection so I had to stay in hospital for 2 weeks. This is my only option of getting better at the moment so I was all for it (but obviously shitting myself). As the time got closer I really started to feel scared but also excited.
On the 12th December 2021 I got the train up to the National Neurological hospital in Queens square London. The whole way up I didn’t really know what to think to be honest, but just wanted to get it done and out the way. I didn’t know if I’d be home for Christmas or not but didn’t really mind as this for me, was life changing. They’ve done this operation on 15 people with Tourettes Syndrome and have had a really good success rate from it, so I was excited to see how it would help me as I am the worst case of Tourettes the hospital has ever seen lol. As I arrived I got put in a room and had to stay in the room because of infection and Covid. It was the loneliest and most anxious I’ve ever felt in my life! I wasn’t aloud to leave the room and kinda felt scared because my whole life just started staring me in the face! I had so many questions and only got them answered the night before my surgery. The day before I listened to music in my headphones for 12 hours trying to block out my thoughts. I was so nervous by now and didn’t think I’d be able to sleep. I did manage to sleep really well and woke up fine until about 10 doctors came in and I had to sign my life away haha.
I had an hour till my surgery and got ready, the thoughts going through my head were mental but also I was excited to get it done so I could just recover and not have all the anticipation of waiting. I gowned up and got taken down to theatre, and anyone that knows me wold have know how much shit I was talking when I was getting wheeled down there haha. They put me to sleep strait away as they knew I was shitting myself, and my surgeon Harith Akram who actually is a keen surfer and surfs in north Devon, held my hand and just winked at me as a fell asleep. Just before I fell to sleep I said “please don’t kill me” lol. I remember them all laughing and me being totally serious haha.
(I’M AWAKE) Jesus Christ what the hell has happened to me ahhhhhhh, lol. I was in recovery and they all came in and said “ the surgery went really well and we’re really pleased’. That is exactly what I wanted to hear but I did remember saying “ you didn’t tell me it would be this fucking painful did you”. And then Harith replied “well if I told you that you probably wouldn’t of had it would you now Steven” hahah. I really don’t think I would of had it if I realised how painful it was ha. I spent the next week flat out on morphine and heavy painkillers recovering and getting used to this device that was now in me. After the first week the DBS team (which were amazing by the way) came in and turned on the machine. Now I was very excited and also nervous incase I didn’t work. So they connect me up to this wireless computer and turn up the settings from there. Its baffles me how tech works now a days, I’m literally sat there with electrodes in my brain getting stimulated by a machine that is getting controlled by a neurologist with a fucking I pad. (WHAT). This treatment is a process and does take affect strait away but your brain has to get used to it over time. So the first settings when they turned it on I felt it work strait away and I was amazed how calm I was! They left me for a couple more days and kept coming back and turning it up a little bit at a time. I felt this big relief when the doctors came in and said “we’re really happy with everything and the way my body has taken to it”. I was so pleased and felt an overwhelming sense of relief and just so stoked that its actually working. Tourettes has been such a big part of my life and to have something helping me and a team of neurologists that understand my condition, literally means the world to me. Ive struggled so much socially with it and to now be able to get back to somewhat of a normal life is life changing for me!! I left the hospital with great empathy and confidence that I can now get may life back on track.
So the plan is to go back up once a month and get the settings right over the year and if it works, (which it already is) I won’t have to have an operation on my neck because it should heal itself. If not then and my arm still doesn’t work then I may have to have neck surgery. Ive already been up twice for adjustments and each time I’ve come back better, my arm is improving slowly but its promising and hopefully by the summer, I’ll be back in the ocean again. I feel truly blessed to be part of the best team of neurologists in the world, I feel so grateful for all their help and support as the operation I had cost thousands of pounds. I cannot wait to be surfing with all my friends again, its literally felt like a part of me has died. I miss everything about it and its been may life since I was a small boy, without growing up in the ocean and swimming my whole life, I really don’t think my body would have been able to cope with what i’m going through, so that just motivates me more to get back in there.
In the time I’ve been injured over the past few years, I’ve been writing an EP which its now out on all music platforms. Its a 5 track EP which I’ll be releasing over the next year, its all about anxiety, love and all the usual stuff people write songs about lol. It’s been tough for everyone over the last few years and so much has happened to so many people in so many different ways. Ive tried to capture a lot of that in my song writing and hope that people connect to my music. Its always scary releasing your first debut single and I’ve been working hard to try and do that, I hope people like it and I can only try and express myself the best I can. Music is my passion and really helps my Tourettes, so with that, getting back in the water and the DBS, I should be flying into this year with a big smile on my face. If you wanna check out my music its on all music platforms, just type in Steve Ley or follow me on instagram @steve_ley_music and you can see where my gigs are and all the info about my music release. Big up to everyone that has supported me through this journey and all the people I’ve met in and out of the ocean. It really means the world to me and and keeps me pushing forward, lets be kind to each other and make this year a banger! Peace. x
