My journey so far!
So exactly a week today I had my operation, I went in to the Royal Hallamshire Hospital in Sheffield the day before which I’d been dreading since been given the date just after Christmas. I’d Had a few moments over Christmas of pent up anxiety as I knew it was going to be the end of January/February, but I just tried to put it to the back of my Mind on the whole. Obviously that doesn’t really work as it’s there just beneath the surface all the time bubbling away!
The week leading up to it anxiety kicked in big time but I was in denial I think. I tend to get moody & short tempered & shut down a bit emotionally. The day I went in I thought I might actually have a heart attack. My heart was doing all sorts of weird things.
So… I had built myself up for the following: stage 1 of the procedure- this may not be scientifically exact but is my understanding; I would be awake while a metal frame was attached to my forehead, my head would be shaved (as little as possible) and two coin sized holes would be drilled into my head. (Left & right sides) Through an intricate procedure involving MRI scanning images, 2 wires would then be channelled through these holes into the specific neural pathways in my brain. These are the faulty pathways that send the wrong signals to my neck muscles. This had to be precise of courses & is the most riskiest part of the procedure for obvious reasons. They then channel the wires down each side of my head, down my neck & in my case through down my chest through to my stomach. The reason for being awake is due to being able to feedback to the surgeons and see/ feel the result of the pathway as relief can be seen miraculously at that point. For example with Parkinson’s disease patients & other types of Dystonia/movement disorders, that are outwardly obvious, you can see at this stage they can stop the tremor/ movement completely. While it’s nerve wracking to watch it really is amazing.
stage 2- This would happen 5 days later under general anaesthetic where a rechargeable battery is put into my stomach. This connects to the wires/leads. I watched a couple of the procedures on YouTube before & remember covering them at uni in the bio psychology module. Another little seed planted in my weird and wonderful brain!
Now, when I say I was in denial before I really was. It was around a year previously that I saw my surgeon who offered me the surgery. My mum came with me & I was told the whole procedure, risks, success etc… I have a coping mechanism which means I don’t really take the details in cases of fear, not until I need to do so, so Just before I’m going in I will let myself think briefly about it so I can build myself up & check I know what to expect. I’ve always done this! Usually there is no problem here!
I was going away for my birthday two weeks before my op so thought I’d better start asking questions & preparing myself for when I got back. I’d spoken to the secretary on a couple of occasions & she kindly went through the procedure after reorganising my pre op assessment; which had to be on my actual birthday… that’s another story I will rewind to another time 😊.
It was then that she went through the two different stages of surgery & the fact I’d be awake which I had ‘forgotten’ about!!! Or had I?? 😱
On the morning of surgery, I was at at maximum anxiety levels. I’d had no sleep due to the noise patients calling out, staff & regular observation checks. I’d already been told I was first on the list so anytime from 8am I could be summoned. My mum was coming before then so I was just willing her to get there asap for me to just let out some anxiety on her. I had to shower & wash my hair in surgical stuff so went to do that. As I was about to get in I was told I needed a second blood test from my pre op one so someone would be there in 15 minutes to do one. The pressure was on! I can take 15 minutes setting myself up for getting in the shower. Especially in hospitals, I have OCD a little so it’s hard when there are no surfaces to put anything down on. I had to layer the sink & a chair with paper towels to put my gown & lovely plastic? I think they are, knickers on! These to me should be kept 100% clean. Everything just feels contaminated to me in hospital showers/ toilets! I know, maybe over the top but that’s how I feel. So I set up & turn on the shower wet my hair then there’s a knock on my door! Great… ‘hello’ I shout.’Rachel, the lady is here to take your blood’ . I did swear repetidly to myself, I was tired, wired, anxious & grumpy. She asked me to get out of the shower so I could have them done!!
I opened the door to the lady who does the bloods & she offers to do them stood up as my stuff was on the chair. I said I didn’t think they should be done stood up should they? She agreed to I dripped all the way back to my bed so she could do it there. Nice touch I thought!
I was in the middle of drying my hair which the solution makes dry as a bone & a tangled mess I might add, when a surgeon came with my consent form. He went through the exact procedure I had in my head & asked me to read as much as I could & sign, this isn’t easy as doctors writing seems always to be illegible 😊. I asked him to clarify 2 lines before saying something like, ‘let’s just get it done’ then signed what felt like my life away. I was so anxious at this point & he mentioned having a bit of sedation while they attach the frame to my head. I thought what?? I need a boat load throughout! He said he’d speak with my surgeon & let him know how anxious I was but explained why you can’t be heavy sedated. I already knew this but just needed to check! My mum came Just after thank god. I had to hurry as it was 7:30 & my hair was still wet. Not long now!
Not long after my surgeon appeared & even I can’t describe the way I looked at him, I know they don’t expect to be met without apprehension but I almost couldn’t believe he was there, like ‘what are you doing here’ like in disbelief but with a look of horror at the same time. Did I think he wasn’t really coming or what?!
He said he’d brought my consent form to sign which I explained I’d done it not long before, he looked & realised it was signed and said ‘oh yes so you know what’s happening, we will attach a frame to your head insert the wires channel them into your tummy & insert a battery pack but you will be sound asleep around 6 hours & wake up when it’s done!!!! WHAT????? 😱😱😱😱
I looked at my mum in disbelief & sheer panic as we both said I thought I was awake and the two stage procedure etc… it was then that he told us that he had never said that I would be awake & that he went through it in clinic & nothing had changed!
Now you’d think could be seen as relief. I’ve been awake for hand & toe surgeries before & its nerve wracking. This though was something else & I wasn’t sure if I could do it deep down. However!!! Since having my hip replacement about 6 years ago, anaesthetists struggle to get the tube down my throat. It’s only the crucial part that keeps you breathing once they put you to sleep! So now, the part I was saving for 5 days time was here, everything had been turned on its head excuse the pun! I Was immediately faced with 6 hours of surgery & would wake up with everything done to me at once!
Basically, between the secretary, and unfortunately the consent guy too, I had just replaced the original info with the new info as it was only at this point closer to surgery I took anything in. I understand completely how it’s happened. My mum just took as gospel everything I said beforehand as it had been so long since we’d been & was told how it really was. My mum is like me so a couple of sleeps & unless it’s written down in front of your face daily, any fresh info- from a reliable source was just taken on board as fact.
My surgeon wasn’t best pleased with the secretary or consent guy who as it happens, along with myself, hadn’t seen that not very clearly written on the third point down, the one I chose to stop trying to read at but signed anyway actually said ‘general anaesthetic’!
The anaesthetists came then to try & put my mind at rest, they were aware I had a problem with intubation but no notes to say what the problem was. They were amazing though & went through all sorts and that was that. It was now time to go down!
I was an emotional wreck & my trust in the whole thing was in the air. Why did I not need to be asleep then? Why was I different? I even dared to ask if there was a chance he’d mixed me up with someone else. He said he was 100% sure because I was the only person in the hospital having that operation on that day and indeed I was the only person having that op in the whole of Yorkshire and Humberside!
The ‘Consent man'(the other surgeon) came to apologise to me while waiting to go into theatre & explained briefly but enough, It depends where in the body you have the problem as to having to be awake or not. Being awake seemed to be the more the norm in the ward. Anyway… It was now or never & the rest is history!
Find out how It feels to wake up like a robot next time 😂😂
#ThrowBackThursday #deepbrainstimulation #dystonia #dystoniaawareness