Hi everyone, I thought I would share my MVD story and road to recovery with you all. This has been quite an emotional time for both myself and my family, not only because of the surgery but also because of what it seemed to unfold following surgery.
I arrived at the hospital at 7.30am on 31/10/12, as requested, after my husband had contacted them first to make sure that there was a bed for me. The anaesthetist came to talk to me and it seemed that nurses were in and out doing various things to prepare me for surgery as I’d been told on arrival that I was first on the list and going down at 8.30am. During this time I was told that my surgery may be cancelled as they weren’t sure whether there was a bed for me on HDU following the surgery; this left me with mixed feelings as I had got quite anxious that I was going to theatre so soon after arriving at the hospital and then to be told that it may now be cancelled! No-one seemed to keep us informed of what was happening (although probably because they didn’t know themselves), I was finally taken down to theatre at approx 9am after the ‘all clear on the bed situation’ had been given.
We had been told that the surgery itself would take between 2 to 2 and a half hours although the anaesthetist said it only takes between 1 to 1 and a half hours, saying that the surgeons always add an hour on!
My husband and my daughter walked down to the theatre doors with me to say our goodbyes and the last I remember was looking at the clock at 9.20am when the anaesthetist was putting the anaesthetic into the canula which had previously been put into my hand.
Following the surgery, and once I was awake I was told that the surgery had been successful, I was later taken to the HDU to recover. I was later told that due to complications during the operation that the surgery had actually taken just over 4 hours and that I had spent longer time in the recovery room following the op as I had reacted badly and that my temp had gone down to 32.something (I can’t remember exactly what they said).
The first few days were the worst, the pain was excruciating and I remember I couldn’t wait for the next round of the meds. They were feeding most of my meds intravenously so they worked pretty quickly. Initially they had me on morphine but soon had to stop this as I again reacted badly to this and couldn’t stop being sick on them. In-between my regular meds I was allowed to take oramorph, a drug I would never take prior to this op but since the op; I have been so grateful for it, as it really does do the job and anything which masks some of the pain has been welcomed.
I seemed to have one problem after another, what with the oramorph and the complications during surgery, now my blood pressure was constantly low as was my oxygen levels and as a result I was put on oxygen for the first 5 days, they kept swapping it from the full mask to the nasal tubes, then one nurse would take it off and the next would put it straight back on! I had been catheterised during the op and they left this in situ until the fifth day, taking it out near teatime then allowing me to walk with support back and forth to the bathroom. The following morning they said that now I was mobilising on my own I was ready for discharge home; although the doctors were arguing about this, as one asked why I wasn’t mobilising as yet, and another said ‘now you’re mobilising on your own......’. I don’t think that they talked to each other or really knew exactly what stage I had got to; either way, I was just happy that I was going home and could get back into my own bed again!
Prior to going home my Neurosurgeon came to see me to talk over my surgery and my discharge. He said that my surgery had taken a lot longer than he’d first anticipated as there had been complications. He said that the there had been a lot of scarring to my brain and the Trigeminal Nerve and that the nerve had been badly damaged and stretched by the amount of scarring I had to the nerve. He continued to say that the nerve now has lots of indentations to it again caused by the scarring. I was confused and asked how the nerve had got so scarred and had this been a result of the amount of pain I had been in, he said ‘No’ and that I must have had a bad fall or a very high fever which I had been hospitalised with when I was younger. I explained that I have never had a bad fall or the latter. He then looked confused and was quite adamant that I must have had a bad fall or blows to my head to cause such scarring. This is the bit that is hard for me to share but feel I need to as it’s a big part of my story and maybe without it I may never had developed TN. A flash from the past went through my head and I could feel the colour draining from my face but couldn’t share my thoughts with him as the curtains were open and everyone in the ward could hear our conversation.
My thoughts went flying back to my first marriage during which I was continually physically abused, the blows were nearly always to my head as no bruising was visible apart from black eyes on occasions. I was horrified and as soon as my husband arrived to collect me I broke down on him explaining what had just been said to me. This brought back a lot of horrific memories for me, it was bad enough going through what I did at that time but never ever imagined that it would raise its ugly head again, especially like this. I hated him at the time and now I hate him even more: if it wasn’t for him I would probably never had developed TN and therefore would never have had to go through this horrendous surgery causing so much worry to my husband and my family. A very close friend of mine on here told me that this isn’t the first time she has heard of this happening, there’s very little publicity of TN anyway so there is definitely very little connections made between physical abuse and TN - this makes me feel both angry and sad
Since being home, my recovery has been slow, but I can see progress on a daily basis. I continue to take a cocktail of drugs and oramorph in between, as required, although this is getting less and less. The hospital didn’t check whether or not I had opened my bowels before I was discharged (sorry for being so personal, but there is a point to this), by day 8 I was in agony to the point where my husband had to call NHS direct and then my GP. The point to this is for anyone who is about to go through this surgery if you haven’t ‘gone’ before you are discharged please be mindful to take something to help you go, I would hate to think of anyone going through such pain following their surgery!
Apart from the pain and continuous headaches, I haven’t really had any other problems since I’ve been home. However, within 30 mins of taking my meds yesterday morning I was violently sick, I’m not sure if this was just a build up of the meds as I felt fine (but tired) for the rest of the day. I even went out for my first walk, and apart from feeling that I was walking a bit slanted, I felt ok with it -and it felt so good to be outside!
I have had no real numbness following the op, apart from my tongue feeling a bit numb; I’m not sure if this may have been where the tube had been resting during the surgery, though this is near enough back to normal now. The only other thing I have noticed is that I have developed some twitching all over my body which I never had before and would be interested if anyone else has developed anything like this following their surgery. I hope that this is just a reaction to the meds and that it will eventually disappear.