Tuesday, 29 April 2008

3 and a half months on!

You may think that I have been pretty slack with updating my Blog.......well you're half right!

Things haven't run as smooth as any of us had hoped, so whenever I had set some time aside to grab the laptop to give you all an update - sods law, I would get ill!

Where to start......??? The last time I updated this BLOG I was in the early, early stages of recovery. I had to keep my 45% angel and was still experiencing the lack of appetite and nausea from the op. Luckily now, I am well past this stage, although a recent relapse has brought on the nausea, however am glad to say that this has now passed again!

Approx 6 weeks ago, I revisited my consultant for another follow-up. I sat in the same waiting room I had all those months ago wondering what they hell was wrong with me and what my GP had meant when my MRI showed "signs inkeeping with Chiari Malformation". The room was packed, full of people of all ages, some showing the anxiousness that I must have that first appointment back last year, whilst others were on first names terms with the receptionist.
"These people are clearly regulars", I thought to myself - at the same time, wondering whether I would now become one of these "regulars"....??
After about 10 minutes of waiting, I started to feel really anxious again. What was I doing?? I had been here before, I knew my consultant, I knew what was wrong with me, so why was I so worried...? Pete picked up on the fact that I was worried and just held my hand and in the true romantic way, said "Come on moron, stop worrying!"
The reason I had started to get nervous was because I had been sat there long enough for my attention to be taken from the gorgeous channel shoes I had just spotted in the copy of Vogue I was reading, and wondering whether I could justify to myself that I needed them - to the fact of I was still unwell some weeks post op and was still experiencing some severe symptoms. Why was this, they told me that this op would stop all this - so what was wrong, something must be wrong as they are still here - WHY ARE THEY STILL HERE!!!????

Eventually we were called in to the room and instantly my consultant smiled and we both felt safe again -(Now this may sound silly, but after you have been through such an ordeal, such a major operation - probably any kind of op), basically putting your life in his hands, to see the man that got you through this safely, promising that I would wake up from the operation - YES, stupid me did ask this question) it is always so calming to see him.

Firstly he showed me my previous MRI (PRE-op) to show my extent of herniation....this alone was quite amazing. He explained and showed me the part of skull that they had removed to make room for the brain and fluid flow. He then asked how I had been and how I was feeling. I explained all the symptoms that I was still experiencing - the severe headaches, balance problems, visual blurriness and floaters, nausea etc. This is the bit I had been scared to hear - was this still normal or is there the risk of them having to operate again pretty soon to make the space bigger?(I had been told that if the op wasn't a complete success, then they would have to re-open the wound and re-operate) - I Stopped breathing.....his response was that these were normal and these will now just fade away with time. Breathe again!
OK, so these were normal, the time differs in all people and they would just fade away....I can deal with that! He then said that I would need a repeat MRI in Aug/Sept time so they can check the new spacing, check that the CS fluid is flowing as it should and that there have been no changes! He also confirmed that there were definitely no Syrinx - which to me, was as good to me as being told - Jaffa cakes only have 1g of fat! Result, WOOHOO!!!

We both thanked the consultant again and again and finally left the stuffy, but familiar waiting room. Next I had to just stop off for blood to be taken 4 months before my MRI - as if having to go through the horrible, scary MRI again wasn't bad enough, tests have now shown that MRI scans can actually damage your kidneys - Happy days!! I mean come on!!

When walking back to the car, I began to cry. I had been so worried about being told that my symptoms were abnormal post op, that I had worked myself up so much, I was nearly sick! I could see the relief in Pete's eyes, which meant more to me than being told that everything was normal. He has really been through it, as have my whole family and I hate that it is me that has put them through all this pain and anguish.

So, here we are on the 29th April and I am still having severe symptoms. I was due to return to work last Monday 21st, however on the Thursday prior to this I had visited my GP to sign me back in to work and to ask for some stronger painkillers, so that if I did develop a headache whilst at work, I could at least try and suppress it when I was there. The GP prescribed a painkiller that I began to take that Thursday night as I had a terrible head. From that Friday morning until last Thursday I had relapsed to the way I had been 6 or 7 weeks ago. The tablets clearly did not agree with me and made me absolutely terrible again. I returned to my GP on the Tuesday (my actual GP) and he told me to throw them in the bin, explained that I can't return to anything until the symptoms had resolved and signed me off for another 3 weeks. ABSOLUTELY GUTTED!

I feel totally deflated at the moment, I was doing so so well and was so looking forward to starting to get my life back, to get some sort of normality back and see my friends and colleagues that I have missed dearly. Instead I find myself stuck at home still, trying desperately to regain the normalness that I felt 2-3 weeks ago. All I am concentrating on now is trying to get better, so I can try and regain this normality back, as I was meant to on the 21st!

I would like to say a huge, huge thank you to all my friends, family and colleagues that have shown no end of support through this time. It's true what people say "You realise who your friends are at times like these...." - I have been lucky and I didn't realise I had so many beautiful people that care for me - I will never forget the love and support I have received!

Also I would like to say a thank you to my long lost friend Laura who recently found me on Facebook of all places! We haven't been in touch for 10 years and low and behold - she too is a chiarian. Our chats have helped so much over the past few weeks, even though I can talk to Pete or my Mum about how I am feeling, it is so refreshing to be able to talk to someone who "understands" how I am feeling, someone who knows the symptoms and knows what a depressing and unforgiving illness this can be. The one thing that Lau has said that makes the most sense is...
"....even though on the outside we look fine, on the inside we are not".

I feel that the last 3 and a half months have changed me slightly. I feel, even though it's hard to believe after reading all this, I feel like a new person, who has so much to look forward to. I am desperate to get back in the gym (Pete had to drag me before my diagnosis), I am definitely going to get back in to my hockey and have already arranged a team to join in September (I have talked about this for years but never actually done anything about it), I am going to call friends when I say I will and ensure that I reply to every message/letter that is sent to me, and above all, I am going to spend more time with my family, especially my beautiful niece and nephew who make me laugh so much, it hurts!

I don't want to come across as some weirdo who has re-evaluated their life for no reason, but it just shows that none of us know what is around the corner. I have always been one who had her life mapped out - until now! So, all I am trying to say really, is that I am now going to appreciate everyday - rather than wishing it was a Friday on my way in to work on a Monday morning, or stressing over whether we should go out for a drink on a work night...and most of all, I will never take things for granted again........well, apart from my husbands lack of ability to say no when I want to go shopping ;-)


If anyone reading this would like to have a chat, if you are a chiarian with a recent diagnosis, or if you have undergone the same as I have, please feel free to add any comments to this BLOG or get in touch with me via this BLOG or Facebook Group "Me and Chiari Malformation" x


lace1070 said...

Zoe ~ I have been checking in with your blog, eager to read how your recovery is going! I so wish your were feeling better ~ recovery is a slow process. I was diagnosed with Chiari and Tethered cord back in Sept 2006 and just had TC surgery three months ago ~ You will feel strong again ~ Press on. Here's my blog address if you want to read about my ongoing Chiari Journey ~
Hugs ~ Lace

Julian said...

Have only just had a chance to read Zoe's blog today - she's a freind and neighbour. We caught up on the train last week. If it's any consolation to anyone else that's suffering at the moment, Zoe looked fantastic and was her usual breezy, funny self.


Sue said...

Hi Zoe - I've read your blog with interest and was gutted when it petered out after 3 and a half months! What happened next? Are you well?
After what seems like a lifetime of suffering, and in fact is, as I have had these headaches since childhood and just didn't realise it was abnormal, I have been recently diagnosed as ACM. I have been reading EVERYTHING I can on the 'net and your story has been such a help. Please let me know if you are doing okay?
Many thanks

Zoe said...

Hi Sue

Thanks for coming and reading my BLOG!

Firstly please don't be gutted that I was still ill 3 months after surgery, from what I understand, this is different for everyone. I spoke with one gentleman over the internet just before going in to hospital and he was a builder. He was having surgery a few days before me. When we caught up again about 3-4 weeks later, he was not far from returning to work on light duties - I mean, I could only have dreamed of that, but it does show that it happens!

I am so sorry to hear that you have been this poorly for so long, that must have been awful for you and your family, however the positive thing is that you now have the diagnosis!

When I finally received my diagnosis, although it was a hard thing to accept, I also felt a huge rush of relief as I atleast knew what was causing these awful symptoms.

I do need to update the BLOG, but I am waiting my copies of my MRI scans from the hospital so I can add on here too.

I returned to work after the last 3 week sign off and started on a gradual basis, working 2 hours per day - fab!! I had a gradual return over about 8 weeks increasing my hours (or decreasing if I had bad days) week by week.
I then returned full time and have not looked back.

We are now 11 months post op and although I still get some instant booming if I strain or cough too hard (only on some occasions!), I am feeling back to my normal self!

Plus, last week I had my 12 week scan as we found out that I was pregnant, which was just the best news EVER, which was followed by my discharge from Neuro the day after.

If you had asked me 8 months ago whether I thought I would be this well by the end of the year, I would have told you "Not a chance", however the human body is an amazing thing and it really has amazed me over the last 14 months. I feel as fit as a fiddle (apart from the morning sickness now!) and am the happiest I have been for a long time. My husband and family are the happiest I have seen them for a long time also, as I know it took a lot out of them all too - it really has been a long year!

I hope this does encourage you, even if only slightly. Yes, it did take me a longer time than expected to recover, however I do think that I was naive about the whole op, but it is major surgery and due to the area they are working on, it will affect your balance BIG time, which is the reason for the nausea!

Please feel free to ask any questions that you want lovely, I did when I finally found someone in the same position as I was back in January and although it seems scary, but it will get better, I promise xxx

Vikki said...

Hi Zoe

Really enjoyed reading your blog, its like my story. I had my decompression surgery in September 2007 at the Hallamshire in Sheffield.

I was 5 months before I could return to work, I was climbing the walls too, its weird isn't how differently you look at life after such an event.

I am still under the consultant although the operation was successful, they recently gave me two injections to relieve some pain, hopefully it will work.

I didn't have staples-just stitches, my photo of my scar is identical to yours, except I didn't loose any hair, they parted mine somehow, which I was grateful for.

Keep writing on your blog, or drop me a line, take care


wendy said...

My name is Wendy. I was decompressed 5 weeks ago and am in the hospital with meningitis right now. I have had symptoms of meningitis for 2 weeks and been in the hospital for 5 days. I am feeling so discouraged and in so much pain...

Zoe said...

Hi Wendy

I am so sorry to hear that you have contracted Meningitis following your decompression surgery.....

I assume it is due to the surgery??

I can completely understand why you would be feeling so discouraged with this news and why shouldn't you?!! It really is awful enough having to get over the decompression, let alone this aswell, you poor thing.

All I can say is that you need to keep so strong for yourself and your family. I know it probably seems impossible right now as you have so much to contend with, but you will get over this and be a stronger person because of it!!

You need to stay strong for your recovery lovely, more than ever now, just take your time getting better. My mistake was I thought I would be better and could do things well before I actually could. Fortunately, your body will not let you do too much before it is ready, so please, please, ensure that you look after yourself more than ever now!

Please keep me updated on how your recovery is going, you will get there xxxxxxxx Take Care xxxxxxxxx

Erin said...

Hi Zoe,
I just found out that I have a very very slight chiari malformation (only 4 mm). I am in the dark as to if this is a condition that can worsen, or if it's so small it's not something to worry about. I haven't even seen a neurologist... Thanks for blogging your experience so far. It really made me feel better. Congrats on the baby! Are you on twitter?

Thanks again,

Sue said...

Hi Zoe
Just been to see the neurosurgeon about my chiari type I, who spoke about an operation. Not sure if I want to go that route yet as I only get instant headaches when I bend over or on straining. While searching for options I found your blog which has answered alot of my questions. I hope you don't think I'm being nosey but did you have your headaches all the time every day? The operation seems a very major one and a long recovery afterwards.