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mark
23rd June 2004, 11:54 AM
It could be 1984 all over again

Went to see the consultant yesterday and it went down hill right from walking through the door. I had my appointment for 3pm so i got there early but did'nt get to see the consultant until 3:45

The consultant asked me why i was here to see him so i asked him if he had seen any of my of notes which he said yes so the first thing i said to him was i was and have recently been having difficulty breathing. His reply what you doing here seeing me so i said i thought it was linked to my back he just hummed so i then told him i have been suffering back pain for most of my life he just said well you are going to because of the way your back is he gave me no advice or comment at all on the pain.

I then told him i wanted a straight back he just looked at me like i was something he had just stepped in and told me that i had an 80% chance of ending up in a wheel chair in a tone that implied i was lucky i was not in a wheel chair and all and be grateful you are only a hunch back. He also said i could cover it up with clothes that from a consultant.

The examination lasted 5 mins he measured my waist and chest with a tape measure and sent me for x rays (i told him i had just had x rays done in feb)

So i get to the x ray dept an hour and 15 mins later i ask the receptionist who had a word with the radioliogist who said that the consultant had not specified what e x rays he wanted doing so they did more thoracic x rays.

I can accept the 80% chance of paralysis and there is nothing they can do because of my age and degree of curve so it looks like i am going to be hunch back for the rest of my life and i am going have to come to terms with the fact i am going to be a hunch back for the next 3 or 4 decades. But i can see myself falling into a really deep deep black depression and theres nothing i can do to stop it and i can not afford to at the moment with everything going on in my life.

If it was'nt for my family the decision would be relatively easy because i don't think i can stand much more of being the butt of peoples jokes and being ridiculed and stared at in the street because i do notice people staring especially this time of year staring and wispering and always standing with my back against the wall and always, always being self conscienous and the pain my head is really really battered at the moment and i don't know what to do i hate life at the moment

jfkimberly
23rd June 2004, 12:03 PM
Does that consultant specialize in scoliosis treatment? It doesn't sound like it. I'm so sorry you had such a rude doctor, Mark. Is there any chance you get seek a different doctor? What did he base his predicted 80% chance of paralysis on? Did he offer ANY options to deal with the pain? Gah... I hate that doctor for you. First Kayla (see her post about the worst doctor appointment ever), now you. I'm getting frustrated with doctors all over again!

On a personal note, and no offense to you, I really hate the word 'hunchback'. I also hate the word 'necklace' (because it sounds like neckless). And 'crooked'... I hate a lot of words.

sins
23rd June 2004, 12:14 PM
What can I say? I'm totally shocked!! That a consultant should behave in this manner is totally unacceptable.Unfortunately there are a great number of consultants out there who do not want to deal with adult patients and you seem to have found one of the worst examples of them. I'm amazed that he should throw up ridiculous statistics like an 80% chance of paralysis before even seeing your x rays.Certainly, Kyphosis surgery carries a much greater risk of complications than scoliosis surgery but I think this is a classic case of" I don't want to handle your case!!".If a consultant can't help you I really don't understand why they won't refer you to someone who can.
I've been around a few years longer than you have Mark and over time you'll learn with the help of us lot here to ignore the stares and the pitying and/or rude remarks. Once you hold your new born child in your arms your perspective will instantly chance.Mine did immediately.So try not to allow depression to take over. there is always hope and never give up on it.
If there is genuinely nothing that can be done for your spine, you deserve to be told that by the best in the country, not by some prat who's more interested in hip replacements.We know adult kyphosis surgery is done.We just need to find out where and by whom and get your gp to send you there, either private or public.
There is one thing you can do and that is to try and get a copy of your x rays from that hospital or through your GP and then take them with you wherever you go.It appears that you've made up your mind to have the surgery and you need to find someone willing to do it safely as possible.
Don't allow yourself to be knocked back by some insensitive quack......
Sins

sins
23rd June 2004, 12:19 PM
On a personal note, and no offense to you, I really hate the word 'hunchback'.
I know exactly where you're coming from Kimberly.It seems to be a term of ridicule.But after spending a year and a half on the message boards I've gotten over that.I also hated the word deformity,but I don't care any more.I've come to terms with my asymmetry and all that goes with scoliosis and believe it or not you will too.On another website there was a lady called Quasimama and I must admit that even nowadays that leaves me with a funny feeling in the pit of my stomach.
Sins.

mark
23rd June 2004, 01:00 PM
So do i but i have been called it all my life its like water of a ducks back to me totaly desensatised to it sorry if i upset you

Pikey
23rd June 2004, 06:40 PM
it's horrid when people look and stare and it's horrid when you become the butt of their jokes . I try like mad to hide my back but people can tell there is something wrong with me and then when they cant quite work out why they think i'm just odd .You must look past what others think and look for the good in yourself , take pride in your relationship with your partner .Look at the lump in her tummy and take pride that you have done that , we have to struggle to beat prejudices but if you can look at yourself and just think that you have done the best you can do with what God has given you and dispite the prejuices of other people have still remained a loving and caring person . Well then you are so much a better person than those who might mock and you should just feel sorry for them . I still have bad days and big depressions but maybe i'm looking for too much of myself and should stop trying to prove that i'm as good as the next man dispite my back , i am what i am and what i am needs no excuses . I hope you can find happiness in your head , it's a hard thing to find .God bless ,Pikey

titch
23rd June 2004, 07:08 PM
I'm so sorry that you've had to meet one of those types of consultant again. There are reasonable ones out there, but finding them is always the problem. I've just been trying to find out if Mr Cole is still at QMC, but can't find any evidence of him, so to find out will require a call to them - I'm more than happy to do that if you would like me to though, as he is probably the consultant least likely to behave like that of any that I have ever met, and he is also a very good surgeon.

It shouldn't have to be such an uphill struggle to get treatment, or even just to get a *reasonable* answer that you can accept. All too many consultants seem to end up just seeing you as a number, or a walking health problem that inconveniently happens to have a person attached to it. - it's infuriating.

Although I don't have kids myself, I would have to agree with Sins - I think you'll find that your perspective changes very soon :-)

BarmyArmy
23rd June 2004, 07:10 PM
Oh my gawd why can't my friends get good doctors that help instead of critising and ignoring them, the people on here are good people and they don't deserve to be treated like this :soapbox:

I honestly don't know how I would cope with the blatant stupity of ignorant people as my curve isn't noticeable but I'm overweight I can relate to hearing abuse from strangers. These idiots are not worth worrying about as they aren't important in the grand scheme of things. What is important is that you are a wonderful man Mark and you will shortly become a Dad. You have to try and remain positive as Justine and wee one are going to need you. Don't let a bad experience with a doctor and mindless morons ruin your future.

We love you and so does your family. :D


Sorry that was a bit cheesey :oops:

jfkimberly
23rd June 2004, 10:42 PM
Sometimes cheesy is called for. Well said, Barmy.

BarmyArmy
23rd June 2004, 10:44 PM
Thanks :oops: and now it's time for our group hug :D

jfkimberly
23rd June 2004, 10:45 PM
*grin* *huuuuuuuuuuuug*

mark
24th June 2004, 09:48 AM
Thanks

But i am really struggling to come to terms with the fact that there is nothing that can be done he said no surgeon in the country would perform that oparation on some one my age with my degree of curve

sins
24th June 2004, 11:28 AM
Sorry for asking so many questions, but did he say what the degree of Curve was?I don't believe him frankly.......How can he speak for other members of the orthopaedic profession? I was told by a very eminent surgeon that my spine couldn't be operated on until I was 15.I was later told that it should and could have been done at age 11. I know it's your decision but i think a consultation with a surgeon who specialises in spinal curvature,like at the European Spine Centre in QMC would be best to make that pronouncement.We simply won't allow you to give up hope yet......
Sins

mark
24th June 2004, 11:57 AM
Thanks sins no he didnt say what the curve measurement was but he said that the x rays would tell him ive never had it measured and i don't know how they measure it so he could have been telling me all sorts of rubbish i was only in there approx 10 mins and he seemed to want to get away i think i was his last patient of the day.

I aint going back to see him i only stayed for the x rays because the misses was with me and would'nt let me go home all i wanted to do was get out of that hospital.

BlueIce
24th June 2004, 05:14 PM
Originally posted by mark@Jun 24 2004, 12:57 PM
Sorry if this sounds like i am full of self pity and i know there are people out there much worse than me but i don't really have any one to talk to it about i have always someone who bottles it all up and i have learnt through bitter experience i need a vent thanks for listening
hey, it's not because there are people with much worse problems than you that you can't feel bad about yours! Don't bottle your feelings up because it isn't good for you. I used to do it too, but it didn't bring me any further so now i just tell someone what's going on. i don't care if i have to repeat the same things over and over again, because it's probably the only thing that makes me feel better. If you need a vent and can't find one, just come here, because this whole thing is more than just a forum in my opinion. It has really made me feel better, i don't know where i would be without this.

sins
26th June 2004, 03:10 PM
Hey Mark,
I checked with the scolioadults group to see if anyone knew a surgeon in the UK who carries out kyphosis surgery.Lida came back with this one.


YES! I do.

Surgeon's name is Alan Gardner, he is in Essex and his email address is:

adhg@btopenworld.com
Regards,
Lida

It might be no harm to drop him a line and see what the story is.
Sins

mark
28th June 2004, 08:59 AM
Thanks sins

M.Magudulela
28th June 2004, 04:51 PM
Hi Mark
Sorry I only see this now and I'm sorry you got such a bad treatment from this Dr. I was once told that it would be impossible to have surgey at age 33 with curves 80/79deg. the big risk being paralysis but then the Dr who told me all of this did not just leave it at that he refered me to an udult Scoli Dr, and I'm being prepared for surgey now.
I do agree with Sins and others, don't give up because of one idiot.
If I could find a Doctor in South Africa I'm sure you can find good Scoliosis Doctors in the UK.

AAG! I also get all sorts of comments from people about my back, I try not to let it worry me that much but it gets to me at some stage. but I must say, since I've joind this group I'm more at peace with my self. I have lent so manythings from all of you.

Mark I hope you're feeling much better now, and I hope you'll make use of the information Sins got you. Please share with us, because it would be interesting to hear how other Doctors view this. I'm still searching for answers....

This is one of the reasons I love the SSO family, you always get help.

*****HUGS*****

Sarah
28th June 2004, 10:44 PM
I could say alot about that prat of a doc of yours.

Did your doc do isis scans, mri scans, lung function tests?

Your doc is quiet simply a nut job in a straight jacket! I had similar treatment regards treatment, paralysis and curve correction around my kyph surgery. My mum thought I'd got taller when standing out of bed, then we saw x-rays that I had no correction and just a fusion which was a punch in the face for years after and went slightly off rails that went through schoo/all college. So now I dispise doctors and listen to little/nothing they say.

Get a new doc and don't look back, it's not worth the hassle of being belittled by a overpaid dildo that only works when it chooses to. Try and focus on your babys arrival. :)

And why not get hold of copy of notes/xrays and ship them off to another opinion (a better doctor)

There are cases where adult kyphosis can be corrected because there was one adult that was under the care of my consultant years ago that used to go in the pub my dad went to. I don't know what type his was. Apparently he had a really bad curve and my dad says he'd seen him after as though he'd never had a back problem.

*****MORE HUGS*****

tonibunny
28th June 2004, 11:37 PM
Alan Gardner is an internationally respected surgeon, I know this cos he works with my surgeon (Mr Edgar) on research projects :D DO contact him.....if he's anything like Mr Edgar he'll be very supportive and open-minded.

Good luck Mark....I'm anxiously awaiting news of babba....!!!! :D

*hugs*

sins
29th June 2004, 12:32 AM
My mum thought I'd got taller when standing out of bed, then we saw x-rays that I had no correction and just a fusion which was a punch in the face for years after
I know exactly where you're coming from Sarah.My x rays on Cotrel traction showed "considerable correction" and when I came out of surgery I had a bone fusion without any rods and absolutely no correction.
Unlike you I spent many years thinking that my surgery was a success and now in the cold light of day it was a pointless exercise, but it doesn't get me down and I've left behind any anger or bitterness that I briefly felt. I'm very cynical about medical treatment but at the same time I have a great sense of optimism.
I don't hold any hope of having my spine improved surgically and I'll be fine with where I am now, but I believe in a situation like Mark's and Maria's, where a spine has not been previously operated on, there has to be a surgeon out there who has the skill and committment to improve your curvature.
If this surgeon can't help you Mark perhaps he'll be able to help recommend someone who might.As I've said before, if at the end of the day there is little to be done, then it's better if it comes from a top specialist.Only then can you be satisfied that you've exhausted every avenue and you can move on with your life.
I'm keeping my fingers crossed.
Sins.

mark
29th June 2004, 11:28 AM
Thanks again everyone for the support and kind words.


I have e mailed Mr Gardner so just waiting for a response and thanks again everyone

Liv
29th June 2004, 12:43 PM
I really hope this man is able to help you, Mark. What's the name of that horrible consultant you visisted? We should put him on a list of shame. He's a real disgrace for the medical profession!

Don't give up :hug:

Amazed Jean
26th October 2005, 06:18 PM
Mark, I knew I loved you the first time I read something from you on this site and now I know why. You are real. You said many things that I have thought. You also were kind enough to show us the real Mark. I know this was a long time before I first came to SSO but its a blessing to go and read it so I feel less alone today. Thanks Mark.

mark
26th October 2005, 08:37 PM
Thanks for those kind words Jean, I knew from that first chat we had via pm that you were a kind and lovely person, i have enjoyed reading and replying to your posts over the last year. I have both laughed and broke my heart and If i lived in the states or ever visited i would definately make the journey to visit you.

mark
28th October 2005, 12:34 AM
Coming to this website is like riding a rollercoaster, i just read a post somewhere else and i was literaly in tears, crying, then i read another and i couldn't stop laughing

i don't know exactly what i'm trying to say but to sum it up this site



:rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox: :rox:

shortgirl
29th October 2005, 08:26 PM
I know what you mean. I was reading through these old posts and I was sad then happy one minute later. It's so nice to be able to read people who have the same hopes and fears as me. I associate with alot of your frustrations.

Little Ali
5th November 2005, 09:48 PM
I've only just read this post but I just wanted to have my say.

It makes me sick that consultants treat people like that! I know it;s just their job and they deal with people with these kind of problems everyday but it's our lives we're talking about and it feels horrible to just be dismissed as if we're being unreasonable!

I agree with everyone else Mark. You are a lovely guy and if you ever need to vent your frustration, you can come to us. There's nothing better than someone who understands. The shape of your back doesn't matter to anyone who is worth worrying about so remember that! Anyone who loves you will love you regardless!

Take care

:squeeze: :squeeze: :squeeze: :squeeze: :squeeze: :squeeze: :squeeze:

healthinjoy
17th November 2005, 12:55 AM
Mark,
I entered this section of SSO when responding to the email notification... though this isn't where I posted this afternoon, I don't think. So the first thing I see is your June 23, 2004 posting.... which totally matches your new picture, by the way! Reading the posts contained herein really messes with me deep inside... the distress of life-long entrapment. I have pictures of myself on my website... but I have yet to post one that tells the whole story because it is so difficult. It is one thing to tell the whole world, it is another thing to show as well as tell. My not having the main muscles in my left neck, combined with the lordosis is not a pretty sight. To read here where other people do the same things I do to try to minimize the facts to the world, while dealing with the fact there is no way out as others look on and stare.... well... I KNOW. I share in your entrapment. I share in your frustration with the wagging tongues of others who have no clue. And as difficult as it has been... I am glad that I can share in that. I am glad that I am not clueless. I am glad that I know. If I can look at you and smile and say I understand, and you know that I understand... that makes it all worth it.

Yes, Mark I have been busy. And there is a lot of stress in this house as we continue to wait for the contractors to repair the inside of our house from the damage from Hurricane Katrina.... we are camping out in the house. The stress has started to affect me physically so I started take Bach flower essences... Rescue formula yesterday. It is totally working!!!

Thanks Mark!
Joan

mark
17th November 2005, 07:12 PM
Hello joan

I am really sorry to hear that you were caught up in Katrina i hope that the damaged caused was not too extensive and you and your family are ok.

Sorry about the other post, i split the thread as i had taken it off topic so i started a new one i shouldnt have started talking about my holiday plans BAD MARK.

I had another look at your web site today and i have got to say how impressed i am with it i intend to have an even closer look when i get the chance (i have a number of Uni papers to get done) but i just wanted to say how well it looks and reads


The pain we all share is a common one born both out physical and emotional stress i mean god all you have to do is read the posts on this site they have you laughing and crying in equal measure.

Take care Joan and i hope you and your family are safe and well

mark

healthinjoy
19th November 2005, 05:59 PM
Thank you Mark.

A good bit of the time while Katrina was whipping through I sat in a rocking chair in my bedroom reading a mindless paperback so I could go somewhere else in my mind part of the time. When we was in Hurricane Camille in the 60s on the Mississippi coast, it moved in during the night so we couldn't see anything. You can't see wind, but you can certainly see what it is doing to that which is in it's path. While my nose was in that book, I could hear all sorts of action over my head. The shingles on the roof of the room next door were moving across my side of the house. I kept praying... "Lord, don't let the roof come off the house!" It didn't, just the shingles. There was about an inch gap between pieces of plywood on the roof and the rain did it's thing. I heard a drip drip drip in my mom's bedroom where water was dripping on her bed. We got buckets, but then another drip came and then another until finally the entire ceiling just dropped down. We finally got that fixed 2 weeks ago.

As I watched what the wind did to the trees around us... the power of it... it was really a beautiful thing. Such raw power. It is a shame something so beautiful can cause such devastation. HUGE trees were felled all over the place from that wind. Trees pulled from property lined our streets, some piles of debri probably reached 10 feet high. Most of it has now been picked up.

healthinjoy
19th November 2005, 06:01 PM
By the way, Mark, I see the "mad man" is gone... what are doing now? Garden work?

mark
19th November 2005, 07:05 PM
He was scaring the kids so we put him out to pasture.

healthinjoy
29th November 2005, 04:25 AM
Mark! Love the new picture!
Joan

gerbo
29th November 2005, 08:33 AM
Mark, what happened since those rather desperate messages from last year. You are clearly much more settled in yourself. Did you ever get a second opinion? (Sorry if this is all common knowledge to everybody, i haven't been around here that long yet)

gerbo

mark
29th November 2005, 09:21 AM
Hello Gerbo

Yes i was a bit fragile last year my daughter was born the day we moved house i was in the middle of twoing and frowing between Drs and hospitals for no end result it was a very stressful time.

The dilema i have now is if i had surgery i basically need to six months out of my life which i cannot really afford to do. I am doing a MSc which is very intense and putting it on hold will probably set me back a year which i can't really afford to do. I am really busy at work and i don't want to have to take a six month break for a lot of reasons.

I am having a really nice time with my daughter at the minute and should i have an operation then i am not going to be interact with her like i do now so i feel i am going to loose about 6 months of my childs life and as she's only 17 months i don't want to loose a minute.

So i am going to go back to GP and see if i can get a referral in the new year just to chat it through with a consultant probably ask to be referred to Newcastle where John was being seen.

The pains as chronic as ever and the curve seems to be progressing the older i get. But i am used to my back now i have lived with it for 35 years so another couple aren't going to make much of a difference.

zerodegrees
29th November 2005, 10:40 AM
Mark,

you've totally got the attitude that I had. I initally started making "moves" on my spine about 5 years ago (ie going to see a surgeon who could do actually do something). I kept putting it off as the time never felt right or there was something major on the horizon (ie sick parents etc, not a good time workwise). I began to wonder if I ever would do it & then strangely this year the feeling changed!

So, don't worry about it Mark. I'm sure you'll do it & you'll know when the times right!

john

mark
29th November 2005, 05:44 PM
Yes John, thanks for the messge your right about how time just seems to go by, two years down the line and something else will probably crop up. But i really need to get this Masters out of the way and then the baby won't be a baby anymore lifting and carrying as often. Mind you never can tell they may be another little bambino by then.