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Marty
02-01-2007, 12:29 PM
I am 39 and wondering about surgery to correct my spine. I had an x-ray in my teens identifting a 45 degree curvature. It was decided no operation would be done at the time, as it might be dangerous but since then medical technology as advanced. It never really gave me any grief until a couple of years ago. Now i'm getting:
1. Siatica down my left leg, but not as bad as it was 2 years ago.
2. Back ache all over my back depending on what i'm doing like if I go for a 2 min walk the only way to get relief is to lie down on ahard surface or hang from a bar to stretch my back.
3. For about the last 6 months when I'm having a bath I feel my pelvic bone rubbing into my rib-cage. This is not painful but highly uncomfortable and i'm just wondering what else is rubbing away at each other inside me.
I had a pleuedisis on my left lung 5 years ago due to it collapsing a couple of times.
I had a Brain seizure about 14 months ago which I put down to stress, but the neurologist said it was beacause I was taking ZYBAN then he changed his mind and said I was a mild Epileptic!
I am at a time where I feel I need an operation to unable a better quality of life in the future but I can't seem to get Doctors to take me seriously. To get the referral to the specialist I had to put my Doctor in a really uncomfortable position ..ie getting family support. I have an appointment to see a surgeon at the Royal Orthopedic Hospital in Birmingham in March.

Any comments would be appeciated and any advice about what questions to ask the specialist would be good too.
Also, if I had an op is there anyone out there who has had an op and can tell me if there are side effects on the body?
Gees, my brain is a mish mash of questions I need awnsering!

sai
02-02-2007, 05:04 PM
Hiya Marty

I know exactly where you are coming from.

I was diagnosed at 15-told op too dangerous and wasnt that bad. My pain started about 3 years ago then my gp refered me to a ortho specialist at the local hospital who kept assessing meafter every 6 months and told me everything was fine...obviously it wasnt so i refered myself to the RNOH in stanmore and as soon as the specialist there assesed my xray from that day in feb 06 to 6 months prior advised me that the curve was significantly increased and i needed an op. from that date it was only 6 months till the op was done and it was the best thing i could have done.

My quality of life in the last 3 years pre op was 3 out of 10 and even though im only 6 months post op now its about an 8.

It really will change everything.

When i was told i needed the op i didnt really take it well and so all the questions popped up inmy mind after the appointment but the surgeon was great and said i could email him...and i did...3pages of questions he he-bet he was sorry he suggested it.

My 1st question was if i would still be able to go on rollercoasters...yeah he did look at me funny!! but however strange you think the question may sound...ask it!!! You may also want to ask your family or friends if theyw ant to know anything and note tehm down...they will also be affected by what will happen to you.

The major changes on my body are
1-no pain whatsoever now-even though still wearing brace
2-inch and half taller
3-ribs in right place now so no abdominal pains
4-hump on right upper back totally gone

sorry ive written so much

If you have anymore questions then just ask...id be hapy to chat.

Sai

Marty
02-03-2007, 07:38 AM
Thanks for your reply, Sai.
I was beginning to think I was invisible! Good to hear the operation was a success for you. Did you have the op on private healthcare? The only way I'm going to get an op is on the NHS since I don't have private insurance.
I know I am ready for an op because I don't want to live the rest of my life the way I am. I don't have a girlfreind, not beacause I can't get one but because I'm disgusted with my appearance. Is there some sort of level where they decide to operate? I know my lower lumber curvature has got worse, probably at least 55 degees now(45 when diagnosed in teens).
Sai, can you tell me what help you needed after you had the op? The only thing that prevents me from maybe going forward with an op is that I don't want to be a bother to my family. Do you have any before and after pictures?

Marty

sai
02-03-2007, 03:21 PM
I had the operation through the NHS. They initially told me the wait would be over 9 months so i looked into doing it privately-which would have been a wait of one month, but once they sent me the price list i soon changed my mind. I ended up only waiting 6 months which was great.

"I know I am ready for an op because I don't want to live the rest of my life the way I am."
Thats exactly how i felt when i was given the option of having an op or not
.

Dont let the scoliosis stop you from having a relationship with someone because it means it has taken over. You are not scoliosis Marty, you just have it and you will overcome it.

"Is there some sort of level where they decide to operate?"
Well my story was that the degree was increasing at a rate of 1 every month so as you can imagine if i didnt get the op done it would continue...not a nice thought!!

"Sai, can you tell me what help you needed after you had the op?"
Before i went in for the op i did think i would need general help and i moved into my parents house for a few months (im still here) but i never realised how much help. It is wise to talk with your family about it but im sure they will be supportive and wont mind helping you if it means you dont have to live with the pain. I met a couple of women in hospital who didnt have families that could care for them 24/7 and they were placed into rehab clinics linked with the hospital until they were more self sufficient. so there is a way around it.

The help i needed initially was with bathing, cooking, eating and drinking(i was unable to hold drinks for first couple of weeks so someone had to hold the glass and i drank from a straw!) and help at night to turn and place pillows under legs etc. I know it sounds like everything and it pretty much was initially but slowly you can do more and more things on your own.

Are you based in the uk? if so there are benefits and help you can get with care after the op aswell(to ease pressure off your family)-ill let you know which ones if you want

Ive posted some pre and post op xrays on the pictures thread and also on the UK thread.

any more questions just let me know marty.

Sai

Marty
02-03-2007, 09:07 PM
Hi sai,
Yep I am based in Birmingham / Uk. I am actually on incapacity benefit at the moment. I guess if I had the op I would be on DLA too. They are the only two benefits I know of. I am actually teaching myself web design to try and find an alternate career to my main job which used to be industrial printing, which I had to give up due to back pain and the staff kept finding me hanging from the metal bars in the wharehouse! What career did you do before the op and how long before you can get back on the Rollercoasters?

sai
02-04-2007, 07:15 AM
you can also get help with homecare if needed-speak to your local councle about 'direct payments' for home help-then you can either employ someone to come and help at home after you have had an assesment or put a family member as the employee so they get paid for helping you.

i was doing IT Helpdesk work-so office based. they have left the job open for me so i can return when i want which is great

good idea about changing your career

he recomended i wait 18 months post op before attempting rollercoasters

Pips
02-05-2007, 09:38 AM
Hi
I am also in the UK (a bit older than you) and had surgery to correct my scolisosi nearly 12 months ago. I had to wait nearly 2 years for my op on the NHS.

I have been delighted with the results, but my curves were a lot bigger than yours and I still have 2x 30+ curves left after surgery. It is not a 'cure' for back pain/sciatica, but I have found that it has helped a huge amount.

There is lots of info in my blog, if you want to go diving back through the early archives, even a list of questions you might want to ask your consultant.

http://warpedwoman.blogspot.com/2006_01_01_archive.html (for the list of questions)

I hope that you get some of the answers that you want. It is a tough operation to go through, but I am very glad that I have had it done.
Good luck!

Marty
02-06-2007, 06:52 AM
Hi Pips,

You mentioned that the op does not cure siatica/backpain, which I suffer from cronically, so you still have back problems even after the op? Surely a straighter spine can only mean less pain?

Pips
02-06-2007, 08:07 AM
Less pain yes, but not necessarily no pain at all. Of course, this will vary from person to person and will also depend on how much correction they get. My case is slightly different in that I have spina bifida and arthritis too.

I was told (and I think most surgeons tell you this) that they cannot guarantee a pain free future. Having said all that, my worst pain was from muscle spasms in my back and I have had little or no trouble with that since the operation.

If your curves are closer to 45 to 55 degrees as you think they may be, then you may get much better correction than me and therefore much better pain relief.

Despite the fact that I still have back pain, the operation was absolutely worth it but my main reason for doing it was not for pain relief, but to stop progressing curves from impacting on my internal organs and my future health.

I hope all this is a help to you - I know how difficult it is agonising over trying to make the best decision!

sai
02-06-2007, 03:01 PM
yes it is true that they cant guarantee no pain after the op but in my case there was only a 10% risk of continous pain after and i havent had any after the op.

My pain was also from muscle spasms-from muscles that were being squashed on the left side by ribs and stretched on the right side.

my reasons for having the op were the pain, future problems that might occur if curve progressed (which it was doing) and biggest reason was my quality of life as ive discussed with you before.

dawney
02-07-2007, 06:56 AM
I am 5 months post op and I am doing well. My main pain was from sciatica also which has virtually dissappeared. I am a manager at a retail store so it is a very active job. I have been back to work for about 3 weeks and I am pretty much working full time. I also have the ability to sit if I need to and it seems that staying in one position too long and I get stiff.
The pain that I feel now is so minimal from what I had before.
After surgery I was in the hospital for 2 weeks and rehab for 1. When I came home I had someone with me for a week. After that I could do some things on my own but still needed help.

Marty
02-07-2007, 08:37 PM
Thank you all of you for the info you posted. I think i'm closer to making a definite decision. Just found out that my appointment with the specialist has been changed from March to April 'due to unforseen circumstances'.
And now for a little rant to get off my chest..
My biggest problem with all this scoliosis is measuring the seriousness of it.
I mean you sort of feel.. "Arghhh bloody back ach again" and you take 5 mins (WHEREVER YOU ARE) for a rest. And then you think.. "Oh what's the matter with me..after all there are plenty people worse off and they seem to manage..."
When you aint got the pain it's like.."Whats all the fuss about?"
But when it comes.....(deep breath)"Oh geees..(deep breath)why me....(deep breath)If I could just find something to hang from.."(deep breath).
Do yer know what I mean?

sai
02-08-2007, 09:06 AM
i know what you mean but i knew it was too much when i used to sit at home in the evening feeling like my insides were collapsing...not a nice feeling at all!!!!

only you can make the decision,just make sure you are making it for the right reasons.

CHRIS WBS
02-08-2007, 09:43 AM
Hi Marty,

I'm assuming you are female, and at 39 you are probably still not experiencing menopausal symptoms. I can only tell you from experience that I have become terribly deformed following menopause. I am 57, had a late menopause and can't get over how the loss of estrogen has accelerted the progression of my deformity. I can't stand to look at myself naked in a mirror. It frightens me. Had I known that this could have been prevented through surgery, I would have had this taken care of years ago even if it was for cosmesis alone. Even though I can still have surgery, I'm at an age where surgery would be much more invasive, chancy, and I'm at higher risk for paralysis.

Chris

Marty
02-08-2007, 01:20 PM
Yeah, so you know what I mean! it's good to know that not only am I disfigured but apparently I write like a girl! No actually Chris I'm male! But I know what your about. I am sure I have read that you can have ops up to about 60. Maybe even longer. How old are you Chris?

CHRIS WBS
02-08-2007, 02:15 PM
Oops, sorry about the mistake in gender. It's just that progressive scoliosis is apparently more dominant in females, so I assumed you were such. Anyway, you've got a delightful sense of humor.

I am 57 and have explored surgical treatment options. The reality is I would require a very long fusion and not just one, but two or even three operations. There's another lady who's a member of this forum who underwent the same procedure I would require. She's my age and she suffered a myriad of complications and almost lost her life. So, needless to say, the enormity of this surgery is pretty daunting at my age.

Do it while you're young.

Good luck with your decision.

Chris