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View Full Version : Still no sign of op!


Becky
13th October 2004, 08:29 PM
My mam phoned the hospital today, just to check they hadn't forgotten me!! They said that im still there but they wont see me till after christmas. So i now know that the earliest ill have my op will be march, and thats hoping that ill have my pre-op consultation in january! i will have been on the waiting list for 9 months in april, so if it goes past that then ill have to push them, coz ppl have said that you should'nt wait more than 9 months!

Abbi
13th October 2004, 09:23 PM
Where are you at....like live? is it the U.K
I am kinna in that kinna situation too....when my mum goes to call the spinal nurse....she doesnt answer. I am on a adult list, which is 12 - 18 months *sigh*
How long have you been waiting!
March....the time will fly, i wish i could have mine that soon!

Becky
13th October 2004, 10:20 PM
Its strange because iv never had a proper consultation, they told me to think about having surgery at the beginning of may, i then wen for an MR scan about 2 weeks later. The consultant had a phone consultation with me on 26th July and i told him that i wanted surgery then, he told me i would be on a 6 - 9 month waiting list as an adult at salford in manchester, but they told me i wont get a date untill i go for my post-op consultation 2 month b4 my op. The 9 month will be up on 26th April, im hoping it will be sooner though because salford isnt a popular place to have this op, but they probaly dont do many of the ops!

Im quite excited about it though, i just want to get it over with! I want to be able to go on my next holiday and be straight! Iv also picked a grey bear get well teddy that i want my mum to get me!!

R u excited or scarred about your op?

I dont know what to expect though because no one on here is really in the same situation as me, everyones elses is more serious than mine!! i recon the consultant has got my curve %age wrong, he says its only 38% but you can really see it and he says i deffinately need the op! i'll post a pic on when i can work it!

Abbi
14th October 2004, 06:07 PM
is it a me to you grey teddy? they r soooo cute!
Im really excited about my op...sounds wer, but I just want it over with, and be able to get on with my life!
I was told at my first ever consultation in sept....with the surgeon, tht I would b put on the list!
they also sed that there is 22 ppl on it, and he does about 2ops on adults per mth....so lets see....well 2 in sept....so thats 20now....and then another 2 this month so thats 18....then nov ~ 16 and dec he may not do two....holidays i'd say! Jan ~ 14 Feb ~ 12 March ~ 10 April ~ 8 May ~ 6 June ~ 4 July ~ 2 August ~ 0 sooooo i may get it in August....sorri that was a crap way of working it out!
I hope u get ur op b4 April!
I ideally would like mine in June!

Becky
14th October 2004, 08:14 PM
where is it your having yours done? stanmore is quite popular isnt it?! iv never heard of anyone having the op at salford so im not sure what the waiting list is like. The secretary woman rekons that if i phone her after christmas then she will be able to give me a rough date, probably just tell me what month it will be!

Im quite excited, its gunna be so strange to stand straight!

Jonny
15th October 2004, 01:00 AM
Excited is the right attitude and it's what kept me going through my surgery :-) knowing that I'd come out the other side straighter and healthier and be able to get on with my life. And I did!

I didn't get put on the waiting list until the September after the March when I knew I needed surgery, because September was when the MRI results came through.

There was a girl and her mother from Liverpool that came down to Stanmore for her scoliosis surgery, in a bed near mine. It must be possible to get referred there from ooop north, but I'm not sure how.

elvinwarrior
15th October 2004, 01:18 AM
Why does it take so long for you guys to get surgery? When I finally decided to get surgery, it onlt took a little over 2 months to get it aranged. Of course, i'd already had my MRI, but still...

BarmyArmy
15th October 2004, 05:26 AM
It's usually down to the fact that the healthcare system in Britain is free (you pay for you prescriptions though) but has very long waiting lists. :(

Abbi
15th October 2004, 12:56 PM
I will be having mine in the Royal Victoria in Belfast.....my surgeon seems great, he has been doing these surgeries for....about 10years now, and has had no complications so yeah!
A phone consultation sounds pretty....hmm well i dunno werid! I would like to meet the surgeon in person. How can u have a phone consultation? cos the surgeon can examine you, and you cant see your xrays??

BarmyArmy
15th October 2004, 01:03 PM
I must admit I too find it strange that you can chat to your surgeon on the phone.

On one hand its good because they can help with any questions but I think I'd rather have a face to face conversation.

Amazed Jean
15th October 2004, 01:26 PM
It takes an act of God to talk to a surgeon here. Or you can schedule an appointment and pay for an office call. Otherwise you can talk to the nurse.

Abbi
15th October 2004, 01:44 PM
well....we have been tryn to do that....its not really working her number like is wrong or sumthing...or she wont answer but yah, so that looks promising!

Becky
15th October 2004, 06:54 PM
The doctor showed me my x-rays in may, then sent me away with an appointment for an MRI scan and told me to think about wheter i wanted the op. After the MRI scan the surgeons receptionist wrang me to tell me that my surgeon would ring me on a certain date for a consultation.

Mr Williams has seen me when my scoliosis was mild, but he's very busy, he's the main surgeon at manchesters childrens hospital, and he also goes to salford hospital where he will operate on me. I can e-mail him when i want, iv only sent him one e-mail and i got a reply, and i can ring his receptionist if i want to speak to him. i will meet him on my pre-op consultation where i will get a date for the op.

Little~shedevil~dee
18th October 2004, 11:04 PM
i cant wait for my hospital apponiment in december to see how big my curve is , might sound weird but i realy hope i get an operation

BarmyArmy
19th October 2004, 12:40 AM
Originally posted by Little~shedevil~dee@Oct 18 2004, 10:04 PM
might sound weird but i realy hope i get an operation
It's not weird :squeeze: There as times when I think about it too but I know I would never get one. We've heard loads of success stories from our friends on here, that it's only natural to want the same thing. I may not be a pleasant thing to go through but the end results sound worth it.

Amazed Jean
19th October 2004, 12:50 AM
I wish that it was still possible to have surgery for me. It would definitely add years to my life span. However since we let things go too long, it is felt that I no longer have the lung capacity to safely undergo surgery. Which is the reason I wanted surgery in the first place (to increase lung capacity).

Little~shedevil~dee
19th October 2004, 12:58 AM
i just want to feel good and look good i hate my rib hump its such a pain and it hurts so much and having an operation doesnt scare me i have had so many now my um said i should have my own bed at the hopsital lol
thanks for the hug barmy

Abbi
19th October 2004, 04:23 PM
Originally posted by Little~shedevil~dee@Oct 18 2004, 10:58 PM
i just want to feel good and look good i hate my rib hump its such a pain and it hurts so much and having an operation doesnt scare me i have had so many now my um said i should have my own bed at the hopsital lol.


Yeah, I so hate my rib hump. When i was younger (about seven or eight) I thought its cos I was skinny that I had it and not cos i had scoli...I thouhght if I got fatter it would got away....lol im so naive...!
Im so not scared of having the op, I mean, im quite excited about it....I saw the extreme surgery video and it seemed cool! I just would like a date for my op.....but it looks quite bleak, my mums friend John (whose daughter had the surgery last year) knows this guy, who has a daughter who needs the op and she went up for her first consultation in march.....and has not heard anything since then, and thats over 6mths! so yeah.,....i looks like i wont be having it for a while... :-?

Jonny
19th October 2004, 05:12 PM
Originally posted by Abbi@Oct 19 2004, 03:23 PM
Yeah, I so hate my rib hump. When i was younger (about seven or eight) I thought its cos I was skinny that I had it and not cos i had scoli...
Seven or eight... so your scoliosis was in fact juvenile?

Abbi
19th October 2004, 05:26 PM
I think so...i dunno, I remember telling my mum tht my ribs stuck out, and she said, awe you have always had that dont worry about it....and my shoulders have stuck out also from and early age....i'd say around 9! so it could have been juvenile....but im not sure....my mum feels really bad for not noticing sooner....she said that she prob didnt notice it cos i wore baggy clothes! I kinna wish it was picked up ealier...cos it wouldnt be as bad as it is now!
i suppose scoli isnt really common so she didnt no....we so need like a health campagin for scoli in the U.K!
im doing my project on scoli for college and my friends are like what is that...just like i was when i found out i had it! It does kinna make sense to have like a campaign thing, cos if there was one, it would b detected better, treated more easier and faster...therefore waiting times wud reduce, as if it was got sooner, less ppl would require surgery!

Little~shedevil~dee
19th October 2004, 06:21 PM
Originally posted by Abbi@Oct 19 2004, 03:26 PM
I think so...i dunno, I remember telling my mum tht my ribs stuck out, and she said, awe you have always had that dont worry about it....and my shoulders have stuck out also from and early age....i'd say around 9! so it could have been juvenile....but im not sure....my mum feels really bad for not noticing sooner....she said that she prob didnt notice it cos i wore baggy clothes! I kinna wish it was picked up ealier...cos it wouldnt be as bad as it is now!
i suppose scoli isnt really common so she didnt no....we so need like a health campagin for scoli in the U.K!
im doing my project on scoli for college and my friends are like what is that...just like i was when i found out i had it! It does kinna make sense to have like a campaign thing, cos if there was one, it would b detected better, treated more easier and faster...therefore waiting times wud reduce, as if it was got sooner, less ppl would require surgery!
abi same thing happen to me , when i was younger my rib cage allways looked funny and stuck out . when we use to have our medicals at school they would say to my mum that my rib cage looked funny but there was nothing to worrie about mum wishes she did some thing about it now , i think they should of done soe thing but at the time i was little so i didnt know anything

Abbi
19th October 2004, 06:35 PM
we never have had school medicals or any kind of screening for scoli....we just had eye and hearing tests at school....the U.K so needs scoli screening!!!

titch
19th October 2004, 06:42 PM
The trouble goes beyond getting a screening process in place - peer reviewed studies are divided on the cost-benefit ratio of screening, because although you catch a lot of people, the argument goes something along the lines of the ones who need catching will get caught eventually anyway and the cost of their treatment is still less (apparently) than the cost of xraying a lot of kids who will only ever be monitored (and exposing more kids to more radiation), and bracing other kids who might never have gone beyond 40 degrees had they not been braced.

All in all, I've not agreed with any of the arguments against it that I've heard so far. However, it could have the effect initially at least of worsening wait times because there would be more people getting referred - it needs to be a whole program with the hospitals and surgeons fully on board with it.

It's possible as well with new developments that the screening and monitoring of smaller curves could be done without recourse to the doctors. I need to find more information about it, but something I read of on the now-defunct MIT mailing list was the spinal mouse, which gives quite accurate readings of curvature without any exposure to radiation. If something like that can be used by a trained person, then perhaps screening and monitoring would become a more viable option. It could also mean that people could be monitored more regularly - as it is, the 6 months that often elapses between appointments can be a very long time for a growing spine.

Abbi
19th October 2004, 07:47 PM
yeah....i hear what ur saying, but maybe then if scoli was made aware to ppl in the U.K and parents told to check their kids backs....that may help. I am not sure tho! im tired, so im just venting on....lol

BlueIce
19th October 2004, 07:50 PM
Originally posted by Abbi@Oct 19 2004, 06:35 PM
we never have had school medicals or any kind of screening for scoli....we just had eye and hearing tests at school....the U.K so needs scoli screening!!!
mine was discovered that way. Not that it really helped, we just got aware of the problem and didn't do anything (stubborn me hated the brace) to stop it. Well, we did some things, like a brace for a while and years of physio but it still got worse. I should have known more about it then, screening alone isn't enough!

Abbi
19th October 2004, 08:08 PM
yeah....we need awareness campaigns or something.....to make sure that if kids have it, it will be caught early!

titch
19th October 2004, 11:06 PM
I wrote that just before leaving work, and it doesn't read quite as I wanted it to :oops: I definitely am in favour of screening, in case that wasn't clear! And totally in favour of raising awareness :-)

Abbi
20th October 2004, 04:02 PM
me too.....cos like when i was diagnosed with it....i was like what? I had to get our family medical dictionary thing and look it up...and when I told m y friend, he had to do the same! so yeah awareness would b very good!!!

andrea
20th October 2004, 10:24 PM
I agree totally with you guys about awareness. If I had even know that the condition existed when Erin was a baby I would have gone to the GP so much earlier than I did. I'm not saying I would have checked her constantly for it as infantile is still pretty rare - you're much more concentrated on illnesses like meningitis, for example - but I would have know that the shape her back was growing in was abnormal. I had to get the GP to write it down so I could look it up on the internet. I've often felt that she has this for a reason and I have to get out there and do something to help others, but I haven't quite worked out what to do.

Amazed Jean
20th October 2004, 11:05 PM
Its really frustrating to not know how to help. I always volunteered for scoliosis screening days at my daughter's school but it was done way too late and very quickly. I felt that it just isn't taken seriously.