Author Topic: Query for all you Zipperheads  (Read 750 times)

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Offline Rachael71

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Query for all you Zipperheads
« on: November 18, 2009, 06:05:41 PM »
Hey everyone

An odd one this; think I might be a bit mad! I'm just a few days away from surgery and I have an odd feeling that I can only liken to excitement (I know how stupid than must sound).

I finished work today and am feeling really great and positive. I am feeling some nerves and I'm sure these will worsen as Monday draws nearer but I really do feel good.

I guess it's because the inevitable is almost here and I'm approaching it by thinking that this is the start of a new life for me. I know I won't be cured and that sadly the syrinx has caused nerve damage and that I may never be any better than I am now but I have to go into this with a PMA and hoping for the best.

Did anyone else feel this way or am I just barking mad? Laura we're at the exact same stage; how are you feeling?

I look forward to your replies! TC Rachael x
CM and SM diagnosed May 2009, decompression Jan 2010

Offline penfold

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Re: Query for all you Zipperheads
« Reply #1 on: November 18, 2009, 06:08:45 PM »
THANK GOD!!!!!

hahahaha! I have actually spoken to Chris about this and yep, I too feel 'excited' for want of a better word! lol I think its because i want to be 'me' again and i am looking forward to the op because i am expecting good things from it........... PMA PMA PMA!!!!!!!!!!  lol

Laura xx
Diagnosed CM June 09, 10mm Herniation and Decompression 25th November 2009.

Offline jade

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Re: Query for all you Zipperheads
« Reply #2 on: November 18, 2009, 06:12:22 PM »
Rachael,

Sounds about right...I was really looking forward to my op (in a strange way!!) You'll do great and keep that PMA it helps so much! I'm 13 weeks post op and feel amazing!

The night before was hard though didn't sleep a wink and it was the longest night in the world. Remember if you need a chat or anythin PM me

Take Care and good luck both of you!

Jade xxx
Diagnosed CM 29th July 09 Decompression 18th August 2009

Offline Chris

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Re: Query for all you Zipperheads
« Reply #3 on: November 18, 2009, 08:55:46 PM »
Hey Laura, I am so glad that you answered before I did! I'm glad that you picked up on what I said ;)

When I speak to you guys and other Chiarians, whether it be in here or face to face or on the phone, I always relate to my own experiences and feelings ( it links nicely also with the emotions post that Jade posted a short time ago).

We all have a common bond and very strong bond, and that is pure human emotion - something that we all exhibit, whether we do it privately or publicly ;) I am not alone, we all do it.

Going through surgery like decompression raises all of our basic human functions and emotions from a basal level. From reading a few books and reading forums and comments from all kinds of people from all kinds of backgrounds and from all kinds of circumstances - there is one common denominator that joins us and that is basic human instinct and behaviour - nothing can change that. The only difference is what and how we apply our own beliefs and upbringing towards those basic "reactions"

Please forgive the following diatribe, but there is a meaning to it.

A little precursor so as not to sound like I am the font of all knowledge or experience first - because I know that I am not.

We all go through difficult times in our lives - the loss of a loved one, marriage breakdowns, serious accidents, near misses etc etc etc. These kinds of experiences leave us all open to "attack" from our own emotions.

Just to give one personal example - I lost my father in 1995 to prostate cancer. He was 49 years old (9 years older than I am now). He had just retired from the Police on a full sergeants pension. I wasn't that close to him in reality, and he gave my Mum, my brother and I a hard time as we grew up (details not necessary at this point) but he was still my dad.

I held his hand as he died, at home and lovingly cared for and looked after. I am sure we have all been through something similar.

I went through every single emotion for the days, weeks and months afterwards. Probably through all of them in the first 24 hours - in no particular order anger, sadness, frustration, happiness (glad that he no longer had to suffer), selfishness, sorrow, pride, doubt, anguish, guilt, worry and probably others that I could not either explain or recognise. I still do to this day - it's only natural I guess.

The same emotions could be applied to any given event in our lives that affects us at a base level - major surgery included.

Personally, before I was given a date for surgery I had not yet been given the chance to think about it in the way that I did immediately afterwards. Up until this point it was all about what I had researched, and I had not yet realised how real it was and how it all applied to me.

That very quickly changed when I was given a date.

I went through dread, anticipation, being scared sh**less - all of the negative emotions at first. Then I got my practical head on (something that I said to Laura will come over the weekend hopefully) and felt excitement, a feeling of well-being and a positive feeling that helped me through it............something along the lines of when you go on the big dipper at blackpool......... you climb up the first incline, you know what's coming but all through the "click click click" of the car climbing up the first bit....anticipation, fright - but you know that at the end of it you are going to be buzzing - you have no control over it and you are going to be thrown off the end and have to place trust in those with control....you might have a heart racing moment part way through that sets you off balance a little bit....but you know that it will be ok in the end......or at least you have a  positive trust that you will as others have been and had before you....but at the end of it you know that your heart will be racing and you will have a big bright smile as you step off.

For me, having a positive attitude and a practical head throughout was the biggest contribution towards my positive result - setting little goals and being positive about achieving them and immediately setting the next one. If I hit a hitch, then it wasn't a big deal.......the positivity pushed me forward and I ignored the set-backs in order to achieve the bigger picture.

Apologies if I sound all authoritative, I really don't mean to or to make me out to be the big "I am" - but I am sure we all know what I am talking about.

The one thing that I don't apologise about is being able to think the way that I did. I know that I was lucky, that I didn't have too many complications and that my journey was a comfortable one in comparison to some. I can only think that because of the positivity that I had, that I fended off some of the smaller issues and made them seem insignificant.

To get back on post! excitement is brilliant! It is the interest paid on anticipation of "getting back to the normal you". It is what the surgery is for and the ultimate goal of giving you your life back - take it, grasp it and cuddle it like it was your only child - then turn it into being practical and get selfish and focus on your end goal and focus on "you"

If you have someone that can take care of the stuff outside of that hospital ward for you, then all the better. Pay no mind to it, it isn't your priority during those few days - your priority is you. Don't feel bad about it - take then opportunity to be selfish for a change, but this time it's for a good reason - and no religion / person in the world could criticise you for it.

OK....rant over, steps off soap-box..........

Welcome to the roller-coaster ride that is decompression surgery.

I hope that my post is met with happiness and positivity - it is not meant to scare anyone, put pressure on anyone or put a jinx on anyone (yes - I am touching wood!) it is straight from the heart and I wish you all that are coming up to your own time all the luck and love in the world. I will, as I always do, be thinking of you and sending positive thoughts to each and every one that you all come out of the other end as positively as I did.

Perhaps I have said too much ,or perhaps said what we all want to say but never dared? Sorry if I have overstepped the mark.

TC guys

Chris
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com

Offline jade

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Re: Query for all you Zipperheads
« Reply #4 on: November 18, 2009, 09:25:39 PM »
Chris,

I really think you are great, you have suce a great PMA it rubs off on us all in the best way possible! Your spot on with the emotions, I've been through them all....still am :D

Hope you doing well Chris talk soon I hope

Jade xxx
Diagnosed CM 29th July 09 Decompression 18th August 2009

Offline Chris

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Re: Query for all you Zipperheads
« Reply #5 on: November 18, 2009, 10:29:14 PM »
Hey Jade, thank you. That post was written with you in mind too! you really do epitomise the positivity that we all do need to aspire to when we approach this thing that we do.

You also take it beyond that and carry it through to the next step ;) More power to ya hunny!
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com

Offline penfold

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Re: Query for all you Zipperheads
« Reply #6 on: November 19, 2009, 08:34:34 AM »
Hahahahaha! Chris makes it sound SOOOOOOO much better!! LOL

Laura xx
Diagnosed CM June 09, 10mm Herniation and Decompression 25th November 2009.

Offline annemarie

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Re: Query for all you Zipperheads
« Reply #7 on: November 19, 2009, 04:21:28 PM »
Hi folks

Will second/third/fourth etc the positive mental attitude.

When Natalie went for her follow up in April (first proper one after her op) she saw an Indian Registrar who was amazed by her PMA. He said that in their culture the doctors are only 10% responsible for the successful recovery of a person the other 90% is down to the patient and of that PMA responsible for 50%. In other words PMA they believe aids recovery.

The trouble is we ARE human and emotions are funny things and PMA can desert us when we are at our lowest and sometimes we cannot get it back on our own. This is where you guys come in. I cannot really talk about Natalie at work or how I feel because the op was a "success" and Natalie is well again now and colleagues really do not want to hear about our worries for her future, but I can if I want come on here and voice those concerns knowing that you guys will be there for me should I need a shoulder.

Good luck with your ops folks I am glad you are looking forward to them (strange emotion but I know where you are coming from - normal service needs to be resumed in your lives!!!!!)

AM
Mum to Natalie CM, SM and Hydrocephalus. Decompressed and shunted Jan/Feb 2008 aged 14.

Offline Rachael71

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Re: Query for all you Zipperheads
« Reply #8 on: November 20, 2009, 08:50:57 AM »
Hi guys

Thanks for your replies; good to know I'm not too mad in feeling the way that I do! For me I just want to get my life back on track and I'm hoping that surgery is the first step along the way so I thnik that's why I feel the way I do.

Chris, I lost my mom in 1993 (also at the age of 49) so I know where you're coming from (big hugs to you).

We all have our personal difficulties to face at various stages and having surgery is one of them. I believe that these challenges help to shape who we are. How does the saying go? 'What doesn't kill us makes us stronger' (or something like that!).

PMA all the way...

TC Rachael x
CM and SM diagnosed May 2009, decompression Jan 2010

Offline Sarah

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Re: Query for all you Zipperheads
« Reply #9 on: November 20, 2009, 02:16:30 PM »
Hi Rachel, it does sound funny doesn't it that we are excited about the op's but it is true.  I couldn't wait for the phone to ring to say that we could start travelling up the M5 for a bed.

I remember people at work and some family members saying they couldn't beleive how indifferent I was about the whole thing, but my reply was that I had two kids to think about.

I lost my dad suddenly two years ago (in between all the previous ops) and so have found HUGE PMA for my recovery, mainly for the people that are left behind worrying about you.

It is a good thing to be excited, that way you want to get better and get back to normal.

Will ring you over the W/E to chat.

Love
Sarah
CM & Hydrocephulus diagnosed December 2006, Decompression September 2009

Offline Rachael71

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Re: Query for all you Zipperheads
« Reply #10 on: November 21, 2009, 01:53:49 PM »
Thanks Sarah; so sorry to hear about your Dad. It must have been really tough going through that as well as all your ops.

Looking forward to catching up over the weekend. Speak soon x
CM and SM diagnosed May 2009, decompression Jan 2010