New member to CP Australia, looking for support

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8 years 2 months ago #9517 by Kim_Cooper
:dry: Hi everyone, as my user name suggests- my name is Kim :)
I have been dealing with CP for about 8 years, I just turned 26 last month!
I was diagnosed with scoliosis and DDD when I turned 18.
Apparently I started to feel back pain at 18 because that's when a females bones finish developing.
Anyway.. Looooong story, relatively short-
When I was 19 I was bashed, kicked unconscious by 3 men.
They repeatedly kicked me against a brick wall until I blacked out..
And this is when my life went down hill.......
My minor back pain became increasingly worse, day by day, month by month..
I went from Orthopedic surgeons, to specialists, different doctors, rehab etc etc..
Until finally I was referred to a Neurosurgeon, he examined my X-rays and MRI and said "you need immediate surgery! Your spine has crumbled, the DDD is significantly worse, you now have no sacrum or coccyx and L5/S1 has slipped, if we don't fuse it then you will be paralysed in months, it's pushing on your spinal cord.
I had/have: Scoliosis, spondylosis, spondylithesis,spondylisthis, pars defect etc etc etc.. Everything beginning with S and ends with is and os :) :(
Anyway.. Ramble ramble..
I went in for a straight forward fusion and woke up in ICU!!!
My surgery was supposed to be 2-4 hours and instead it took over 8 hours! And I had to be put in ICU because my heart rate dropped significantly blah blah.. Anyway, my surgeon then goes on to tell me it worse much worse than he imagined!
I had fusion, bone grafting, laminectomy, a cage put in etc etc..
I was not allowed to lift my head (lay completely flat) for a week!
The nurses were horrible, I was abused and treated like crap by them!
My surgeon 'forgot' to inform them that my surgery was alot more invasive than first planned so they made me sit up the next day and stand up 2 days later! My pain was incredible, I collapsed howling (I couldn't believe that noise was coming from me! I sounded like a dying animal).. I then started hyperventilating and breaking down..
I was a mess.. The whole experience was a nightmare, my surgeon informed them I was NOT allowed to even lift my head! Let alone stand!!
Well a week later I went home (another horrible story, but I won't bore you) and when I got home I realised my back was wet, I ignored it for a few days, I still was not allowed to lift my head (for 2-3 weeks) I rang my surgeon and he told me I was leaking CSF (spinal fluid) and I had to get an ambulance back immediately or I would die or be brain dead!
They wasted no time (no anesthetic) and re-stitched my back (which was infected) WORST PAIN!! Stitching I over raw infected stitches with no pain relief!
I spent another week flat on my back in hospital.. This happened 3 times in 6 weeks! (leaking CSF and going back to hospital).

Fast forward.... I was months past the estimated 12 month recovery time!
My scans apparently looked normal, surgeon was happy with the result..
Yet my pain was worse than before the operation?!

No one was helping me!!. Not even my GP!. Just more pain killers and rehab.
I googled and descovered I could see a pain specialist so I got a referral and waited 12 months to see him, eventually saw him and he basically said there is nothing anyone can do, I need to come off pain killers and face the facts this is my life now!
Constant pain 24/7, no social life, no work, no life..
He said I need a psychologist and he put me through a Ketamine treatment which apparently would offer pain relief whilst I come of pain killers (another week in hospital).. Ketamine is HORRIBLE!!!
There's a reason it's called the K-Hole.

Anyway, unsatisfied I searched for another neuro to get a 2nd opinion!
I could not take this laying down, I was only 22!!
Well well well.. It wasn't all in my head! It wasn't 'phantom pain' as the pain specialist seem to think.
They treat you like you're crazy or a drug addict!!
Well the 2nd opinion descovered my metal was broken!
The screws in my fusion had snapped!! Half were floating around and half were stuck in my bones!
No wonder I was in agony..
Finally I had answers!. I had to wait 6 months laying on my back for the operation, due to the public health system. But I was so excited that there was finally light in my tunnel..
They removed all hardware, but apparently could not get out the snapped screws that were still in my bones.. So I still have metal inside my discs/vertebrae..
I thought this was it, finally I was going to get relief.,
Estimated recovery time 3-6 months..
Well I've just turned 26 and I'm still waiting to recover!!
Apparently due to the severity and invasivness of my first operation and never recovery from that, and then re-entering and having double surgery and all that goes with it etc etc.. My surgeon says its normal to still be in pain, because my operations were so serious etc etc.. And he's happy to increase my pain killers!
My pain specialist is a twit, he treats me like a hypochondriact!. He wants me off the med's and to deal with it, this is my life! Well he said that last time and look what happened!?! Mr Smarty pants was wrong!!
He said some horrible things to me, I broke down crying!
He then said I need to face reality and this is my life now, I said an I being unrealistic or positive? Depends how you look at it.!!
I have faith and positivity!!.. I will not give up, this is not my life!! I'm 26!
I will go to America if I have to, they are so advanced medically over there..

Currently I'm waiting to see a new pain specialist, a new neurosurgeon, I'm still on pain killers (higher doses) I still do hydro, I'm going to do massage and acupuncture as often as possible and hope for answers!
Maybe nerve blocks, disc/spine replacement, new ideas.. Advanced new medical options..
I am open to try anything!! Please help!
I'm waiting for my court case, and praying for my claim to be approved for them to pay for private health and a Posturepedic mattress and to pay for any treatments and specialists.
I'm on a disability PENSION at 26!
I've lost ALL my friends, my career, my life, my self-esteem, my health..
EVERYTHING!!! Even family!!
Besides my Mum- who is my Full-time carer..
Imagine being my age and STILL dependent on your Mum :(
My old friends are all married, engaged, have children, travel etc..
I've never even been on a plane!
My life was taken at 19!
I've missed the BEST years of my life..
The most social thing I do is hydro with the oldies at rehab, the last time I hung out with someone my age was years ago!
They all abandoned me, even though I had ALWAYS been there for them!
I always put others before myself, put my own feelings aside so help others..
Yet no one helps me, not even a message to see how I am!!

I am so alone, lonely and isolated..

My day consists of:
Wake up, painkillers.. Hobble to lounge, lay on couch.
Take pain killers every couple of hours.
Watch foxtel all day.
Go to bed, sleep horribly...
Repeat.

Some days I mix it up, I go to rehab or appointments with surgeons/specialists/doctors..

Not even my GP is compassionate or supportive, my situation is too stressful for HIM, try being ME!!
I also have endometriosis, which doesn't help my back ! It makes it worse!
I have arthritis and a broken bone in my hand with needs operating on but my back comes first!
I have a lump in my breast.
I have sooooo many health issues I could write a novel..
Which I basically just have! Hahahaha! Sorry!!

I could write for days, I never get to talk to anyone so it's good to finally get it off my chest!
You'd all be shocked if you knew everything, eg: my own Father secretly having a relationship behind my back with my best friend (and only friend left) for over a year!!
And then when I found out they turned it on me, like I was sick for thinking it and I needed help etc..
Until I showed them proof., then they admitted it.
Neither have tried to mend their relationship with me!
They chose each other!
So now I have NO FRIEND! She was my last one..
And I'm estranged from my Father..

The list goes on, like I said- I could write a novel.

Basically- I'm I'm chronic pain 24/7, can hardly walk, can't sit, have no life, no friends, hardly any family, no support..
I find strength in support, but I have none.
I'm lost and alone.

Thank you for letting me get it off my chest, sorry for rambling!!

Take care, I hope you ALL find relief..

Best wishes xo

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8 years 2 months ago #9518 by Mary
Hi Kim and welcome to the forum.

You sure have been through an awful lot for someone your age. Unfortunately, I have heard similar stories many times but not usually from one so young. There are some people on here who are in the younger age bracket but I can't remember if any one is as young as you.

I hope that your next round of appointments are a bit more productive for you. When you went to the pain clinic, were you offered a complete program? Or was it just a consult with a pain specialist? The type of pain clinic where you see a pain specialist, physiotherapist and a psychologist generally have better outcomes. There can also be hydrotherapy and maybe occupational therapy. Sometimes there is a group program you can attend. Those programs generally have good outcomes. They won't cure your pain, but they can most definitely help you with strategies to have a life as well as pain.

The main problem that we all face with chronic pain is that medical science does not yet have an answer for it. They don't really understand why some people can have backs that look similar to yours and yet have little or no pain, while others have pain like you do. Meanwhile we all try and manage as best we can.

There is an excellent book that explains chronic pain rather well and gives you some ideas on how to manage. I don't have any connection at all to the authors, but I do manage my own pain using the principles in the book. There is an electronic copy available from here:

www.noigroup.com/en/Product/EPBE

There are a lot of people on the forum that will no doubt speak with you about their experiences. You won't get any discrimination here because we all understand exactly what you are going through.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
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8 years 2 months ago #9520 by Eliza
Omg Kim my heart pours out to you and everything you've been through and still going through.... Wow that is one horrific story of your life and it's been one long hard road for you... You need to find a good empathic gp immediatelyred that understands your history... I really don't understand these pain specialists that take you off your much needed pain killers! It's terrible to loose everything including friends I'm dealing with the loss of friendships too because they just don't get it! When I was 18 I was also well what happened this unknown guy to me broke into my unit and lucky for me I saw his face because I had the side lamp because I lived on my own, anyway I fought for my life until I was knocked unconcious and sexually assaulted, luckily for me I was unaware what he did to me until someone found me left for dead! I was put in hospital then transferred to a mental hospital for 2 weeks! The police told me to not press charges because it would be too hard on me and so later on when I got out they the police drive past me and told me he was the town drunk and they bashed him in a dark alley! I went home to my mum and dad after that! I never received any back injuries so I was lucky and now I'm in my fifties and I had a back injury 4 years ago and I had double spinal fusion surgery 2 years ago with complications.. Nerve damage that's so hard to deal with. I'm sure you would be suffering with nerve pain too in your feet n legs... Hang in there Kim I know it must be terribly hard and with the loss of your life and friends. It's a lonely life and we somehow have to make the most of it by doing what we can do.. I hope you get the treatment that you so badly need and some sympathic pain specialists and most importantly the respect that you deserve... I'm thinking of you and I'm sending you a big hug.. Keep in touch and please keep us updated with your recovery... I'm on my iPhone so i hope I make sense because it's hard to see what I wrote and to read your post again until I've posted... Xxx and yes I've recently been treated like a hyperchrondriac too from my surgeon! That hurts I also broke down crying!!! Unable to even tell him my continuing symptoms that are real and that stop me from having a normal life! Hugs again to you! Xxx
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8 years 2 months ago #9522 by grappers
Hi Kim and welcome to the forum, to be so young and have to face life with chronic pain, us older group think we have it tough not compared to you. Maybe you will see major changes to how people with chronic pain are treated and consieved not only by the medical groups but by people in general. I can see you as one who will make changes as you are not going to take what has been said lying down ( sorry for the pun ). My experience with surgeons and the pain clinic I can not fault, each stay in hospital has been a very pleasant experience, apart from being told after my first surgery I would be able to return to work after 4 weeks, small white lie, my psychiatrist would have to be one of the most caring and understanding person I have ever met on my pain journey, if was not for him I would be still languishing on a waiting list for my spinal implant, he has seen first hand what drug trials did for me personally, not once has he said it is all in your head. Believe it or not this is the public system so not all states or hospitals treat CPer's with such disdain as you have experienced there are a few who understand and get on with the job of trying to make life as comfortable as possible, pity this approach is not adopted Australia wide. Just about all on this site only have friends through this forum, all can tell how life long so called caring friends who said they would stay with you through thick and thin slowly drift away, leaving one to battle alone, well you are not alone any more, we never meet, but we all understand.

Take care and big cyber hugs for one so strong, keep posting

Don

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8 years 2 months ago #9531 by Aetherone
Replied by Aetherone on topic New member to CP Australia, looking for support

Kim_Cooper wrote: my name is Kim :)

:ohmy:
perhaps a hand squeeze will hurt less!
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8 years 2 months ago #9538 by Wendles
Oh Kim
Your story is heartbreaking but you are still standing. You are not alone and isolated now. Many have similar feelings before they come here but this forum offers support, understanding and a place to unload your pent up feelings. I hope being part of this forum will help.
Welcome Kim

There is always a SMILE
in your day,
you just need to find it!
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