"For god's sake Zo, will you stop reading that crap on that sodding laptop, you'll just make yourself feel worse!"
These were the words of my wonderful husband Pete just a few months ago when I started searching the net for literally anything and everything I could for this new and scary condition I had just been told I had - Arnold Chiari Malformation (ACM).
I mean what is a girl to do? You suffer with headaches for years, just putting them down to an inconvenience or a hangover, then a few years later you start to get other strange symptoms, like pins and needles, numbness etc else where in the body and then the brain starts telling you that maybe you should take that trip to the Dr's that you have been putting off for weeks. Eventually (if you are lucky and your GP listens to you) you may get an MRI scan and then BOOM - your whole world is put on standstill, you can hear the consultant neurosurgeon explaining your MRI results and you can hear what he is telling you, but all you can think about is - please not me, this can't be happening.......?!
I have decided to start this BLOG to detail my experience of Chiari and try to shed some light on this rare condition. Now, I am certainly no expert, extremely far from it, but I DO have this condition and I have trawled the internet and searched GOOGLE more than it ever has been before, in the hope for some decent, realistic information of this condition searching for my main question - "what happens now??". I suppose I'm trying to put something on the NET that I would have appreciated reading......someone real, someone in the same boat as me, someone who understands.
So let's fill you in on how I came around to being diagnosed....
Pete & I were involved in a car accident about 4 years ago. BANG - a car hit us at 30 mph, he was not looking in our direction at the junction and just decided to pull out. Before we had chance to do anything or to really work out what had happened, I was surrounded by firemen and an ambulance crew.
4 years later here I am, repeated episodes of time off work with neck pain, headaches and migraines and more recent pins and needles and numbness symptoms, I did go back to my GP and I was re-referred to physiotherapy for my neck. During my sessions I started to mention these new symptoms and it was believed that they were of no concern and certainly no neurological cause - this was more likely to be related to my neck injury and a possible trapped nerve. With no joy from my physio about further investigations, I spoke with my Chief Medical Officer (CMO) in work for his opinion. I have spoken many times with our CMO about my neck pain, so felt at ease in discussing such problems with him. It was then that he suggested I asked for an MRI scan.
My GP was the one who reported the findings, and to be honest, he had to search Google to explain the situation to me. I sat there and cried in the consultation room, right in front of him. I couldn't speak for the amount of tears that were flooding down my cheeks. I think it was more difficult as he didn't really know much about the condition. Now, I have always seen my GP as the man who can make anything better, but unfortunately, such conditions do not come around that often, and some GP's may never have a patient with Chiari, so I completely understand that this was a learning curve for us both!
I was then referred to a neuro-surgeon. The appointment seemed to take forever to come through my front door - but it did. I remember sitting there in the waiting room at the Heath Hospital, Pete at my side, and my whole body felt numb. I mean, hang on a minute, I.....I was sat in a neuro-surgery consultation ward - it shouldn't be me, it's always someone else. No, this was me, it was really happening and nothing I did could change that! My name was called and in we went. I sat there and had to go through my symptoms and history for the last 4 years, when it all began. I then had my reflexes tested as well as the pin prick test. "Sharp - Blunt - Sharp - Sharp - Blunt." I passed with flying colours! Fantastic I thought, there's nothing wrong with me. Yes I may have this Chiari thing they're talk about, but clearly I am in a full bill of health.
How wrong could I be...
The DR then explained that he wanted to discuss my MRI with one of the senior consultants. Then I met my consultant. This was the scary bit - surgery was mentioned pretty much straight away, well it was in my head anyway. Surgery in my head means that something is really wrong, it won't go away on it's own - it's there and needs to be sorted. My mind went blank, the only question that I could manage was " How much hair will you take away??" Pete started to ask the important questions. It was explained to us fully, what the surgery means, the less than 5% risk involved, the amount of hair that is shaved away, the complications that can occur if I didn't have the surgery - which can be irreversible.........of course this didn't make me feel any better.
Being told that you have something wrong with you is always a hard and painful pill to swallow, it is natural for anyone to feel shocked, scared and concerned when you find out that you are not the fit and healthy person you believed you are.
I was given the option to either go under 6-12 month review with an MRI each year, so they could compare to the last. This would check whether there has been any progression in the condition and whether "cavities" had started to form. At this point if they do, I was told that there would be no treatment to cure this. Therefore, needless to say I have opted for the surgery in the hope that I will then be symptom free!! My surgery is now a week away, I get admitted to the hospital on the 16th and then my op is the 17th. I am yet to be told which type if Chiari I have as apparently I have some, but not all of the symptoms, so this will all be revealed when I see the consultant when admitted, so I am very anxious as you can imagine but am now in the state of mind that I just want to get in there, get it done, recover and then come home and start my recovery.
I was offered the option of going to the ward to have a look around, which of course I jumped at. I am the kind of person that wants to know everything about everything, and even more so if it involves me. I was the kind of child that would always ask "Why??" I would recommend anyone who opts for the surgery to jump at the chance. I must be honest and say that it scared the hell out of me and prob made me feel far worse for a few days, as it is a very "sad" ward. Not many people were awake and not many, if any were talking with each other. I also learnt that I will be put on the high dependency ward when I return from surgery, and will be here for approx 2 days, as long as I do ok, I will then be placed on a normal neuro ward and can expect to be there for a total of 4-7 days - OBVIOUSLY I AM HOPING FOR THE 4!
I am not a hospital person and am in fact, quite a wimp when it comes to something being wrong with me. I have since I found out my surgery date, which has to be maybe 4-5 weeks now, but I have started to accept that this is my only option to get on with my life, symptom free and to start to think of a family of our own - so get on with it hey!
I will be posting lots of information before I go in to hospital for those of you who don't really know much about Chiari. From then on this will be used as my diary for the next month or two, a place to vent my frustrations and a place to share my experiences. I think members of my family reading this may be slightly shocked as I have not really discussed how I am feeling with them, not because they haven't asked me, but just because until now, I have sub-consciously closed up - completely, but then fallen to pieces the minute someone asks me about it. I have spoken with Pete of course, he has tried his best to get me to talk about it all, but I have even held back there, again not purposely. This again is just a natural reaction, clearly not the best, but one I could not change....until now!
My families support, along with my friends and work colleagues support, has been truly touching so for that I am so lucky and ever thankful!
This is in NO WAY to be used as a medical reference clearly and obviously - but simply something that people can try to relate to and read for their own piece of mind - just knowing that someone else is having the same worries and concerns as you, can be reassuring in itself! Decompression surgery is not something to be frightened of, this I am now sure of, it is something simply that has to be done for us all, to get on with our lives - otherwise I may never go skiing, running or laugh out loud without my head feeling like it is about to explode....so this is a good risk in my eyes! (Maybe not quite Std Rates, but do-able hey underwriters?! hee hee)
Plus I hear that you get spoilt after having neuro-surgery, so that's a plus! ;-)