I actually wrote this at the start of the weekend but didn't have chance to publish. For some reason, on the morning of the op, with 10 mins to spare before we have to leave the house, I feel the need to get this out there. As I already told you, I'm a shocker for 'lists' and this is one of the only remaining things on my list.
So, Happy New Year...
I hope you all had good ones. This year, we sat in and watched Jules Holland. It was calm. Well, for a bit anyway. The only New Year's Resolution I made this year was: No More Dramas. Sadly, that has already been broken, but through no fault of my own (as kindly pointed out by a close friend), so I guess that doesn't set me up for bad karma for the rest of this year, as if I needed that. Let me fill you in.
As you will know from my previous entry, the last time I was in hospital (10-16th Dec), I was diagnosed with 'severe migraines' which as I mentioned I was skeptical of at the time. I should qualify this really. It's just that you often hear people talking about the fact that they get conditions like migraine or tonsillitis or IBS and it turns out to be a bad headache, a sore throat or a regular tummy upset. I'm not saying that about everyone and I know there are plenty of people suffering chronic conditions everyday of their lives, but given the fact that when I get one of these migraines I am paralysed down one side, cannot speak and am in agony that even morphine struggles to take off, I was not very accepting of the diagnosis - simply because of my understanding of what a 'migraine' is. I couldn't see how other migraines I'd witnessed were the same as mine, or how I would get anyone to take my diagnosis seriously that I needed time off work, or that I was hospitalised.
In addition, it just seems odd that I've never suffered 'migraines / severe headaches' before this year and I find it hard to believe all the head pain isn't related to this brain condition. That said, I was diagnosed by a Consultant Neurologist from Queen's Square, so if anyone should know it should be him, so I had been forced to start accepting it.
About 3pm on New Year's Day, I was going up the stairs to get changed to go for a walk with my OH, brother and his gf. When suddenly I got a horrendous pain across my shoulders that went up my neck and head into the are around my wound from the surgery. Over the space of a few hours it crept over the top of my head and into my face as well, but not as severely. The pain rendered me incapacitated for about half an hour and I was in bed in tears. The pain finally subsided enough to go downstairs but not to go out for the walk. Then when I tried to eat dinner, it sounds bizarre, but I couldn't get my mouth open wide enough to eat, so my table manners left a lot to be desired! I also couldn't open my mouth wide enough to yawn and this was causing a lot of pain!
Note: This pain was totally different to my migraine pain / experience. The head pain was in a different place, the pain felt different and there was no tingling/paralysis or inability to speak. So it is possible that the migraines are a separate thing, granted.
Between being in hospital with the severe migraines and the NYD attack, I'd also had some strange goings on and a general feeling that actually I had stopped getting better and actually started to get worse. I had been planning to go back to a phased return to work on 3rd Jan and it just kept feeling more and more unrealistic. Some of these symptoms included:
- Keep forgetting everyday words and finding it increasingly hard to converse with people
- Walking around the house and veering off to the side unexpectedly
- General balance and co-ordination problems
- Cramp like pain in between my shoulder blades
- Continued/increased nausea and vomitting
- Dizziness and pain when moving position
- Sudden head pain when sitting down / getting up / walking / bending
- Unable to open my mouth wide enough to fully yawn due to pain / stiffness
So come 1am on New Year's Day when I was still awake and in agony, I knew it was time to go back to hospital. I just felt like something was wrong. My OH called The Wellington where I had my op and they advised us to go to A&E because they had no Neuro-Dr at the hospital overnight. The last few times we'd always been to the local A&E and although the staff were very caring, there was no designated Neuro Ward/Unit and the knowledge of my condition/s had been very limited and in the end I'd only be transferred back to The Wellington anyway. So this time we went to the Royal Free, which although is still NHS, it has a massive Neuro Ward and my actual surgeon works there as well, when he's not working privately. We were sent straight through Triage - although we then did have to wait 5 hours to go up to the ward, but it was the early hours of 2nd Jan and NYD had been one of their most violent on record apparently. Which you could well believe given some of the people in A&E on 2nd. Plus by then the pain had subsided quite a lot and it was obvious that I wasn't urgent, urgent.
I could quite literally blog on here for a month about my 2 nights in a London NHS hospital, not least about the 'Gruel and Mash' I was given for dinner one night (I was actually thankful that I was being so sick I couldn't eat) or the view of the woman opposite going for a... 'Number 2' with the toilet door open, or the sheer emotional disturbance of witnessing another patient going through 3 agonising Lumbar Punctures (due to an issue with an op that I'm about to have) - however the main point to highlight is that the nursing staff, Drs and Surgeons were incredible - so caring and knowledgeable and easily on a par with their Private counterparts. The only things I would criticise is that they are under-staffed, under-paid and over-stretched, resulting in them not being able to do the best job.
To cut an exceedingly long story short, my Neurosurgeon came to see me on 3rd Jan on his return from the Christmas break and diagnosed a Pseudomeningocele (swelling of fluid collecting at the wound site), which is causing pressure on the head/brain and some of the strange symptoms I've been getting. The last time I'd seen him at The Wellington (when I was diagnosed with the migraines), he had said something about the back of the head being quite 'full' and that he wanted to see me in a month about that. I hadn't even had a chance to make that appointment and hadn't paid much attention to that given everything else (being tested for Epilepsy, Strokes, Tumours etc). But it became clear that one of the things the surgeon checks at your 6 weeks post surgery appt is the swelling to the wound (fairly obvious when you think about it) but I'd never got to that appt because of everything else going on. Anyway he wasn't happy about it and so I transferred back to The Wellington for more monitoring and tests. He warned me that it was highly likely that I would need another operation, known as a 'Shunt'. In the meantime I was put on steroids and more painkillers.
To recap for a second:
In Aug I was diagnosed with suspected migraines and 'incidental' Chiari Malformation
Then in Sept I was diagnosed with Syringomyelia ("but you have no symptoms, which shouldn't mean you need surgery") and Over-Active Thyroid (given meds)
In Oct I saw the Neurosurgeon who told me I did need surgery for the CM and Syringomyelia
In Nov I had surgery for the Chiari, which in turn should treat the Syringomyelia
In Dec I was diagnosed with severe migraines
Then in Jan I was diagnosed with a Pseudomeningocele
I am due a review of my Thyroid meds in Mar
In Jan I will have my shunt op (see below)
Don't worry if you're not following, they're not brain surgeons for nothing, hey!
Basically CM is where the brain sits too low in the skull and in my case blocks the normal flow of spinal fluid. This results in a cyst in the spine (Syringomyelia) or sometimes fluid on the brain (Hydrocephalus). They operate on CM when there is a cyst present or daily symptoms are very severe. If left a cyst will more than likely paralyse the patient, even if they don't get any symptoms at that point in time (like me), usually by the time they get symptoms it's too late to operate, as damage cannot be reversed. So that's what they did, operate on me in Nov. Unfortunately the body hasn't adapted to the operation and still isn't processing the spinal fluid properly, so now it's collecting at the back of my head (and maybe not in the cyst), but of course this cannot be left either as it could result in Hydrocephalus, brain damage or death. So now they have to do a Lumbar-Peritoneal Shunt.
The shunt is a tube that they put into the bottom of my spine to drain away the excess fluid into the peritoneum (abdomen), it will then be reabsorbed by the body and expelled. My NS is doing this on Monday. The op takes about 1.5hrs and I will have 3 scars - 1 down my spine, a 'stab' wound in my side and a scar across my tummy (I think a few of inches). Shunts are permanent, but only last about 10-15yrs, so I will have to have it replaced in time. They can over or under drain, get infected, or slip, so it's not uncommon that they have to be adjusted etc, so it's possible that this is not the last surgery I will need. But that's OK. I'm OK with this, it could be worse after all.
The bottom line is, my body doesn't deal with the spinal fluid correctly. It never has done and it never will, without help, unfortunately. However, the fortunate part of it is that I have an amazing surgeon, I live in a country where although this surgery is quite new in medical terms, it is a well recognised technique and I have amazing healthcare. My family and friends have been nothing short of amazing, with so much thought and support, I have been overwhelmed by the generosity - both in terms of time, messages, gifts and hugs!
I am also incredibly grateful that I have had this experience to a certain extent, because it's made me see things very differently. I have a new perspective on the world that's for sure and things that used to be really important to me, I now know are totally trivial. The most important things to me are the people I love and that are close to me and being a decent human being. That's it really.
So I've been let home for the weekend, before the op, which is awesome. Although this morning started with me having a weird fainting/shaking attack as I got out of bed and me nearly falling down the stairs. My OH managed to catch me before that happened and made me amazing tea and toast! That's one of the most frightening things though, is all these bizarre things happening to your body that you have no control over. To go from being totally in control to totally not, is very strange. But actually, I'm beginning to think maybe it's the best thing for me. I had got quite OCD / timetable-led about life and putting pressure and stress on myself which was totally self inflicted. I don't think it's a bad thing that I realise that perhaps it's not all down to me and I need to let go a bit more!
Bit of a rush to get this update out, but I wanted to share every step of the journey as promised, there would no point if not. I just read this back and I think this doesn't even cover the half of the drama, but those that know me can imagine I'm sure! Just imagine sick, sick, sick and more sick, fainting attacks, agonising pain, tears and general terror. That said, I think I have coped reasonably well, this is my/our life at the moment and has been for 5-6 months. Maybe one day I will go back to work...
Did I mention that we are 2.5 weeks away from moving house / first house purchase? :-)
That's all for now folks, see you post op!
S x
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