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Old 26-10-2012, 02:10 PM
Linwessie Linwessie is offline
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Default Hi, I'm new and not an alien

Hi, very glad to have found this website!! I was diagnosed with scoliosis at the age of 7 or 8. Not too bad then and because I was scared to death fo the school dr, I threw away the note that my mum was to take me to the dr to check my back out. Needless to say, I had to endure another humiliating school dr's visit in high school. I was very shy and getting undressed and bending before a dr was excruciating embarrasing for me. I feared dr's and needles btw. By the time I was 15 i finally plucked up the courage to go to the dr and was sent to a specialist. They took an x ray and it was something around 46degrees. I have a S curve, large at the top and small at the bottom. I cried i was so scared to go for an op, but the surgeon examined my x rays and said that my upper curve is supported by my chest and he doesn't think i need surgery and my chances of back pain is the same as anybody with a normal back. We have tried the milwaukee brace just to slow it down, but it was terrible painful to wear and after a week of no sleep and black and blue bruised body from this brace, i chucked it away. Now 22 years later leading an almost normal life without any pain and having three kids, I was just refused a job because of my scoliosis as i am apparently ' a risk for injury'. I felt insulted!!! I was very sporty and active throughout my life and to be told i can't do an aged care job after all my training, I am simply furious. It ads to my mental state about this condition. I have never met anyone else who had this condition and i have never talked about it as it was a terrible humiliating thing for me to have. I only started to tell my friends about it over the last few years and tried to make out as if it nothing. The fact that people have never noticed it unless being told helped, but i am and was conscious about it all my life. Even today I try not to bend in public in a queue and now wearing a swimsuit is a terrible embarassement although my husband always try and reassure me no one is noticing anyway. I am planning to see the gp next week as I am just worried that i am living in a bubble and when i reach my 50's i don't wanna find out my back is too far gone or i'm too old to have surgery. Mind you, i'm scared to death of surgery. Never had one i pray to God that I will never need it!!
I am eternally greatful that i told my story on here and don't feel like an alien and know that there are more people out there who's got it.
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Old 26-10-2012, 02:51 PM
rosie rosie is offline
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Default Re: Hi, I'm new and not an alien

Hi
Gee I feel very sad for you. Here is a big hug. I was so self conscious also. But do you know when I told people I was having surgery they said for what as they had not even noticed my back. I am 48 now and had sugery this year, best thing I have ever done. I can so totally relate to your fear of surgery (as I am the BIGGEST chicken on the planet). Hey if they can fix it with surgery now or in later years believe me its not that bad. Make sure you get a referral to a GOOD specialist. Even if you dont need surgery now it is good to make contact now with a specialist so they can monitor your progress over the years. I unfortunately never kept my xrays when I was 15 yrs old. But since 1999 I have kept all the back xrays to compare each time I was xrayed. This forum is great as we all have, or have children, relatives with scoliosis. It is SO good to talk to others and share experiences. Hang in there , chin up, just get as much info as you can
Rosie
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Old 01-11-2012, 11:30 AM
Linwessie Linwessie is offline
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Default Re: Hi, I'm new and not an alien

Ok, so I went for x rays this week, first time in 24 years and it has progressed from 44 degrees top to 58 top and 44 bottom. I still don't have almost no pain from it. My gp said just to go for physio and now I am going to Sydney to be taught the scroth method (i'm in Adelaide). I basically have not stopped crying for the last 24 hours and am a nervous wreck that the scroth would not stop the progression. I can live the way I am now as long it stays this way. The fear of surgery is unbearable and even if it might be a year or 5 before we decide if the schroth method worked i don't know how i am going to deal with it if surgery does become the inevitable. I had to take prescribed medication this morning because I can't cope with the anxiety and feels like i'm losing it. Strangely, the scariest thing of the operation is the thought and trauma of getting ready for the op. Just the image of that last hours and minutes before going in seems terifying and yes, here comes the most rediculous part, what if i do managed to feel something during surgery??? I know it is mental, but I had a friend many years ago who had an arm operation and she felt the whole thing, but the anasthetics made her unable to move or to communicate a sign that she can feel and hear the whole thing. Ok, enough of being such a wuzz, but i think the fear might kill me before the actual op. Does anyone on here had success with the scroth? I don't care if my back doesn't improve as long if it just stops the progression.

Thanks for the reply though! x
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Old 02-11-2012, 02:52 PM
abbi2103 abbi2103 is offline
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Default Re: Hi, I'm new and not an alien

Hi I have heard that scroth is quite good and has helped. If I had known about it 8 years ago whilst we were still in the uk, I would have deffantly tried it, as it was quite near to where we lived. Although 8 years ago my back didnt really bother me and iv never had much pain with it.
Like most people I was diagnosed at 13 years old with a 43 degree curve top and about 30 dgree bottom, the curve was too large for bracing and at the time surgery was not really an option, so it was just left.
Iv had three kids now aged 12,10 and 3, the first two were perfect pregnancys and births but our third little man was an emergancy c section because he was breach and prem.
I did have an other xray done when I was 30 years and the scoliosis specialist then measured my curve at 50 degrees so really in the last 17 years it has only progressed 7 degres which I didnt think was too bad. still I have not had any pain really, but the last 4 years I have hated the look of my back and felt it was looking worse. Over the last 6 years iv had a few xrays as iv had a few twinges in my back and the radiographers report to the GP has said that my curve was 48 degrees top. I then had another one done this June and the report came back saying my top curve was 46 degrees. I was really chuffed as I didnt think it was progressing. Little did I know.
Last month I finally plucked up enough courage to see a scoliosis specialist in Brisbane only to be told that my curve was not 46 but 68 degrees, the specialist told us that the radiographers quite often get the degrees wrong, in my case very wrong, the specialist measured the xray I had done in June and that was 68 degrees too.
I have been told that really my only option is to operate due to the nature of the curve it is very likely to get worse.
Im now 36 with 3 beautiful children and very scared. But tring to keep very positive.
I was wondering if you had only just see your GP or did you see a scoliosis specialist? I would highly recommend you to see the scoliosis specialist if you can.
So sorry about such a long letter, its just so nice to talk to others.
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Old 02-11-2012, 04:34 PM
Linwessie Linwessie is offline
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Default Re: Hi, I'm new and not an alien

Hi, yes it is very nice to be able to talk to others in the same boat. I have spoken to the GP and I have emailed my x rays to a scoliosis specialist in Sydney. He rang me back and said that yes, most specialists would recommend surgery, but since I have no troubles yet from my spine other than the odd tweak only once in a blue moon, he think it is worth giving the Scroth method a go. Thankfully i like exercises so will give it a go perhaps a year or 3 to see if it has stopped the progression. If not, so help me... they will have to prescribe me some serious 'happy' drugs untill operation day otherwise i might not show up. So let us know what you are going to do.

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Old 02-11-2012, 09:34 PM
abbi2103 abbi2103 is offline
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Default Re: Hi, I'm new and not an alien

Hi thats good news that the specialist in Sydney thinks that schroth would be worth trying. Do you know how long you have to stay there for? and how much it is over here for the course?
Although my curve at the top is large, I have been very lucky too and not had much pain, only the odd niggles. Its the look of my back I dont like. Good luck, Id love to hear how it goes.
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Old 02-11-2012, 09:39 PM
abbi2103 abbi2103 is offline
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Default Re: Hi, I'm new and not an alien

I know what you mean about the 'happy' drugs, I think I will need them too, Im very nervous about what lies ahead. Im also very active and love my fitness. So the thought of being out of action for a long time frightens me half to death.
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Old 03-11-2012, 08:45 AM
rosie rosie is offline
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Default Re: Hi, I'm new and not an alien

Hi girls
Yes when I found out I was for surgery I had a major freak out. I am a super fussy person so the thought of not been able to do anything was huge, my anxiety went through the roof. BUT there is light at the end of the tunnel. Surgery was the best thing I have done. Yes I have a few sore spots around my back but nothing compared to the pain I had and difficulty I had in trying do things with a painful back. Think Positive, have a great surgeon, be organised, educate your selves and it will go well. I too am from Brissy and had the best surgeon.
Rosie
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Old 03-11-2012, 09:03 AM
Linwessie Linwessie is offline
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Default Re: Hi, I'm new and not an alien

Hi abbi2103
I was told to go to Sydney for a week. It takes 4-5days of intensive training. Sometimes i do have a "brave masochistic " moment thinking perhaps i should just take the bull by the horns and go for surgery, but the thought of waiting for that day makes me already start sweating. My biggest fear is feeling something during op and not waking up. I can deal with anything else after op. I also don't wanna know any detail of what they gonna do. I have an idea already. They can give me details afterwards. Also, i don, t wanna see the theatre...oh my heart rate is going through the roof just typing this...
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Old 03-11-2012, 10:37 AM
abbi2103 abbi2103 is offline
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Default Re: Hi, I'm new and not an alien

Totally agree with you, I'm very worried about waking up during the op, more so not waking up after. I know deep down it needs to be done and really wish i could just get it done tomorrow. I'm also worried about going through such a huge op and finding out that the rib hump is not gone. Like you I don't get much pain and the thought of ending up in pain after op worries me. I fully understand i will be in pain from the op for a long time, but i mean after when everything has settled x
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