(Warning for the squeamish: this blog does include image of wound/scar)
It’s pretty scary stuff knowing they’re operating there. Yes there, in your skull; removing a piece of the actual skull. Scientifically a piece of bone called the styloid process, hence the name styloidectomy. The styloid process is a bone on the outside edges of the skull that is small and can actually move without it causing any problems, however, often this movement can be the part of the problems for a small number of people. Many of these people have ended up under the care of my consultants, who look at things a bit differently than the rest of the world! They look at the benefits that the patients identify verbally, as well as the numbers after the initial tests for IIH. (See previous posts) here
In my case, my LP opening pressure was relatively low but I instantly felt better and that continued for 5 days. When I had venoplasty the same thing happened. They can see from my scans that my intracranial veins are tortuous and I have many areas of compression. My styloid process had my jugular vein and some nerves wrapped around it. Perfect for a really nice game of operation!
(They really did have buzzers to warn them if they touched my nerves-⬆️⬇️⬅️➡️🔔🔕)! 😭😭
The purpose of the styloidectomy is so that they can fit a large stent into my jugular vein in that area and now into the gap left by the removal of the bone. The diagram shows where that bone is so that you can picture it. Mr A has removed most of that bone, as you can see, it’s quite easy to get to; sticking down like that! He only took about 45 minutes to remove it. However, I can assure you that the hole he needed to make to get to that bone was much LARGER and I have a massive scar to prove it.
Immediately after surgery I was in less pain (I guess I still had GA coursing through my veins), but I was put on reduced pain meds by a junior doctor who had different ideas to the anaesthetist and Mr A who were both happy for me to stay on my high doses of prescribed pain relief. Anyway, he also hadn’t signed off for me to have my morphine either that night! Grrr!! Amazingly, I managed on oramorph and slept most of the night and was woken at 6am by the nurse who had collared the dr and made him sign it off for me to have the morphine tablet with my other meds. After seeing Mr A at 7:20am!!!!!, the nurses removed the drain and cannula and discharged me without any dramas.
Next came the most surreal part of the experience; the journey home. Driving home and sleeping in the car was more bearable than I thought it would be, but we had to stop to use the facilities and get lunch. Joel wheeled me round to the disabled toilet- first we went down in the lift to the main loos as we were just trying to be quick, but they were on the main floor-so like a comedy act we went straight back up in the lift, in a daze. When we finally got to them, you needed a radar key to use them! This is the first time in my life, I’ve ever actually needed one! Once I actually got in the loo, I pulled down the rail and the panic alarm cord was wrapped around it; unreal! Quickly, Joel wheeled me out whilst we both giggled and I tried to cover my ears (that didn’t have my usual ear plugs in), so were fiercely objecting to the piercing buzzing! Finally I managed to actually go to the toilet, so Joel got me back to the car before I had a meltdown in the middle of Clacket Lane services! Needless to say, we ate lunch in the car.
I’m so lucky to have my best friend to help me through every step of the way; not only major surgery but, to keep me laughing through it all; even toilet fiascos in a service station!
Once home, I realised that the journey from the car to the stairs was a lot further than I’d managed so far; it felt like a trek to the South Pole! I was shaking all over when I got to my stool at the bottom of the stairs, but all I could think about was the fact that I still had to climb The Stair Mountain! Those stairs looked like impending doom, but all I wanted was my safe place; back in my bed! So here we were again; this was going to be killer. I just knew. I prepared myself as best as I could. Oramorph and Joel to help me on my way (no migracaps allowed obviously) and I began the expedition. Oh. My. It was probably one of the worst climbs I’ve ever done. Every movement of my body hurt (my wound and my head) and having my head forward/down in crawl position was the worst position possible, but my legs were far too weak to even try to climb upright. I did however crawl as quickly as I could force myself to go, in between yelps.
Finally I to came the realistion that I wasn’t going to be able to sleep on my side of the bed during my recovery. I usually sleep on the right, therefore my bedside table is on the right. But I can’t turn to the right to reach for things! So, once I’d recovered from the stair climb enough to pop to the loo, Joel moved all the pillows and then switched the bedside tables/cabinets. Now the left is where I will stay for my recovery. At the moment, all I can do is eat, sleep and watch TV.
As you can imagine, I was absolutely exhausted by this point and slept all night and Saturday morning but by the afternoon I had started to be in more pain again. By. Sunday morning I was beginning to panic about detoxing at the same time as trying to heal from surgery-it just didn’t seem right. I asked on my FaceBook page and a couple of friends agreed with me and so did Joel. The consultants and my GP had all said that I’d stay on my medication cocktail and reduce it as I’m able to. I did feel torn because I wanted to stay off of the naproxen and I’m desperate to come off of morphine but I knew I had to stay on what I was on pre-op because the lower level of drugs just weren’t touching the pain and the pain from the op is generally lower than the pain I experience most days! Well, I guess it’s not that odd, this surgery wasn’t meant to fix ALL my pain and symptoms. It was primarily to make space for the stent. However, it can have an impact on symptoms which is why I’ve been asked to keep a symptom diary for a fortnight.
Writing this has been tiring (although I have taken my time and done it in bits) but very cathartic and I think I needed to do this to get it all out of my system. I hope that it shows you why this isn’t going to fix everything, an insight into what it’s been like; as usual, the laughter and the tears and an understanding of what I’m going through at the moment. Thank you for reading and as always, Im sharing for understanding and awareness-not sympathy!
Laughing While You’re Crying 