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Rodverta Braefusion
08-11-2009, 11:59 AM
Hi everyone,
just signed in and noticed there are now 13 members on this forum. How about we all meet and greet on the forum, so we can get to know each other and offer support or share experiences. I'll start:

aged 44, mum of two adult children. Had a thoracolumbar curve of 50 degrees, had surgery on June 1st, 2009 (Adelaide), now corrected to 5 degrees. Instrumentation posterior T11-S1, Anterior fusions at L4/5-L5/S1 with two cages. Recovery was smooth, now happy to be pain free!

Who's next?

Rodverta Braefusion
08-11-2009, 12:50 PM
The actual curve degree was 58 not 50. Just realised error, no edit buttons here!

Admin
08-11-2009, 03:25 PM
Rodverta

The forum has time limits on editing as follows:

5 minutes to edit a thread title
30 minutes to edit a postAfter 30 minutes therefore the Edit button disappears from the post. If you're out of editing time I can make an edit for you if necessary.

Jimbo
09-11-2009, 10:08 PM
Hello fellow Aussies, glad to see an Australian forum for us, thankyou :D

I am awaiting surgery, Jan 25th, 2010. Posterior T5-L4 for a 40T & 45L S curve :mad:

It is putting some fear into to me, but I am really looking forward to getting the surgery and hopefully achieving a good outcome.

Admin
09-11-2009, 10:23 PM
Jimbo

Welcome to the forum and we trust you'll find it helpful.

Please note that the names of surgeons and hospitals are not to appear in the forum posts. This is set out in our Terms of Use and is in the best interests of all concerned.

Jen
10-11-2009, 08:43 AM
My meet and greet story is as follows:

I had surgery for my scoliosis at age 57, in March this year. I am fused T4 - pelvis, posterior only. My surgery included osteotomies and laminectomies, and my surgeon used my own bone, donor bone and BMP for my fusion.

I've had a smooth ride through recovery and there isn't much I am not able to do. I will probably never be able to cut my own toenails and putting on socks requires help but I shave my legs, have done quite a lot of gardening in the last couple of months, and am back to kayaking. Swimming on my front is awkward but unchanged from pre-op, on my back.

I put my good fortune down to the brilliant skills of my surgeon. He sure knew what he was doing and I'm so very grateful.

vanessa
10-11-2009, 01:03 PM
Hi everyone, I am 53 an found out I have scoliosis while I was having chest and abdominal xrays for a totally unrelated matter. It is lucky the xray technician mentioned it (she said "that is a shocking scoliosis you have") (I said "what scoliosis!"). The only thing I know about my scoliosis is that it is rotating, I think that means my ribcage is moving, it looks that way to me, anyway. I have lost three inches in height since my 20's,i do not know if that is related. I am seeing a specialist later this month? Has anybody got any tips or advice

Jen
10-11-2009, 03:43 PM
Hi vanessa. There's not a lot you can do until you've seen the scoliosis specialist. He will tell you your cobb angle (size of curve) and give you some idea of whether surgery is warranted. If the curve is progressing, it's likely he may suggest surgery. When I was your age, my curve progressed quite rapidly, after not changing much my whole life. I lost between 2-3 inches in my fifties. I regained 2 inches.

Are you having any pain? If not, you're one of the lucky ones. Surgery is generally done at our age primarily to halt the progression and address the pain, rather than for cosmetic reasons.

Let us know how you go at your appt. Take notes so that you don't forget the many details that are thrown at us at our first appt. Taking a list of questions helps too. Give him a copy so he can answer them one by one, and write his answers on your list. It's so difficult to remember everything. Taking someone with you helps too.

Rodverta Braefusion
10-11-2009, 05:32 PM
Hi Vanessa,
Welcome to the forum. As Jen said ask lots of questions and take lots of notes. I don't know how far off your appoinment is, but I found that keeping a notebook and writing down all those questions helped me. Oh and by the way, don't ever consider any question to be a silly one. Hope you are not in any great pain. Let us know how you get on.

vanessa
10-11-2009, 07:26 PM
Thankyou so much for your advice, Jen. I went on the internet and searched for quite a while until I foundthis site, which has been the most sensible and helpful. I am having pain in my back, which I thought was the result of weak stomach muscles and poor posture!

Bonnie
11-11-2009, 03:45 PM
Hi all,

I have just joined this forum and wanted to introduce myself. I am 26 years old and underwent a spinal fusion for scoliosis in May 2008. The surgery was sucessful in correcting my 46 degree curve to 5 degrees, however it is now 18 months later and I am still in much pain. My surgeon took the anterior approach and as part of this removed 2 of my ribs. I was wondering is anyone else had rib removal as part of their surgery and what pain was experienced afterwards, for how long and did you find anything that helped? Any experiences you can share post surgery would be helpful.
Thanks

Jen
11-11-2009, 04:02 PM
Hi Bonnie. Is it rib pain you're experiencing or back/leg? If it is rib, then although I didn't have ribs removed, I've read that the pain of rib removal can continue for a long time after surgery.

I hope someone who's had ribs removed, reads your post and can offer you some advice from first hand experience.

Bonnie
11-11-2009, 08:15 PM
Thanks Jen. Yes it is rib pain- or at least pain where my rib used to be!

Jen
13-11-2009, 02:00 PM
I sent you a PM Bonnie.

macky
15-11-2009, 11:28 AM
Well here we are with our own Scoliosis Forum. To introduce myself though one or two already know me I am 58 and in 1966 I had harrington rods placed near my spine and have been fused from T4 to L3. I think I was around the eighth person to be operated on in Australia and of course it was successful:) I still have a bit of a hump but all in all I have led a perfectly normal life.No problems with pregnancies and so on, worked all my life.
That is until 1997 and things have been a bit painful since then due to the rods still being there and whatever else if going on back there. So I am in quite a lot of pain. Would I change anything, definately not. I am so lucky that I was able to be fixed shall we say at the age of 14.
I think this forum will be a definate asset to all of us, and thankyou for starting it.

Lorraine. (Macky)

Godiva
07-12-2009, 06:16 PM
Hi all,

I had my surgery a week after my 21st birthday in 2005. I chose to wait after my growth finished to complete my tertiary studies and also the pain was not significant in my early teens. The pain is gone but occasional discomfort is part of it life I guess.

I have T4-T12 fused (posterior) to correct the 58 to about 25 degrees. The bottom curve sorted itself out somewhat but it was significant and a second fusion was likely at first. I was lucky to have not needed any hip/rib bone and the vertebrae bones were used.

My recovery wasn't all that fast but was smooth. I was fatigued for years and only recently was diagnosed as iron deficient. It is possible this occurred after the surgery as my blood was never tested afterwards.

Look forward to speaking to all of you.

Rodverta Braefusion
07-12-2009, 09:58 PM
Hi Godiva,
Welcome to the forum. Sounds like all went well wth your recovery. If I may ask, at what stage of recovery did you feel like as if you never had the surgery? One year.....Two years..........
I myself had a smooth recovery, but as you may note on another thread, i have become very tired lately, don't know if i am doing too much too soon or what. I do pack a lot into my day. Looking forward to some further chats.

Jen
08-12-2009, 07:20 AM
Welcome Godiva.

Rodverta (I can't type that without a grin on my face!) I am wondering if you had a blood test - Godiva put the thought in my head that perhaps you're iron deficient?

It's probably nothing, just over-doing things, more likely. You're still only half way through your recovery and every recovery is different.

Hope you feel better very soon.

Rodverta Braefusion
08-12-2009, 09:58 AM
Good thinking 99 (Jen). I am due for bloods to be done to check my thyroid, so may ask for full bloodwork, to see if anything is amiss. Thanks.

katherineP
25-02-2010, 11:47 AM
hi everyone,
im new to this forum and its great to be able to talk to others who understand and live with scoliosis . im 39 yrs old and scheduled to have my surgery in 3 weeks .My curve is at 60 degrees and i suffer heaps of back pain daily. Im quite anxious but feel ready mentally although worry more about how my family are going to cope. Just wondering about recovering and then how you cope with day to day activities. thanks

Rodverta Braefusion
25-02-2010, 01:03 PM
Hi Katherine,
Welcome to the forum. So sorry to hear you are in pain, hopefully it will all be over soon. There are a couple of people on here that are post-op including myself. If you have any questions regarding surgery (pre and post-op) just let us know. I was fused T11 - S1 Posterior and L4/5-L5/S1 Anterior. I had a 58 degree Thoracolumbar curve. I was corrected to 5 degrees. Pre-op, was in lot of pain - now post op, pain free, except for some nigglys from time to time! Hope to see you around on the forums. Have a great day!

katherineP
25-02-2010, 07:11 PM
hi ,
i may have to have 2 surgeries an anterior and posterier spinal fusion would anyone know recovering time and how they managed having two operations.Whats it like when you wake up after the surgery.thanks

Rodverta Braefusion
25-02-2010, 09:39 PM
I had both anterior and posterior down under the same anaesthetic. My surgery started at 8.30am and finished at 3.45pm. I went to recovery from there and then back to my room at about 6.30pm. My daughter told me that i woke up briefly and then went back to sleep. I slept until about 5,30am the next day. My surgeon visited me at 7.30am and told me that all went well and that i didn't go to ICU because i didn't need it. When i woke up, i was surprised that i wasn't in any pain - just discomfort. He didn't want me to get out of bed that day, but i told him that i had to and so.... he sent in the physio. She got me out of bed and i took a couple of steps. Then in the afternoon, we went for a bit of a walk and by the evening (so long as i had someone with me) i was allowed to walk the hospital halls. Hope this helps!
Have you read the book 'Scoliosis Surgery' by David Wolpert? This is a good reference guide.

macky
24-04-2010, 07:45 PM
I had my operation in 1966 when they fused me from T4 to L3 in Melbourne, and had Harrington rods put in my back. I have had a totally normal life been able to do everything I wanted , until the last few years when pain has sneaked up and got me.

Harryis57
12-04-2011, 11:42 AM
Hello 'Meet & Greet' people,

Any Older MEN ?

My story is that I am 58, just 11 weeks post-op, spinal fusion S1 - T4, and still on pain-killers (less than when in Hospital - which was 4 weeks, and less than when in convalescence - also 4 weeks); 'so far, so good' !

I had had some left leg numbness pre-op, and for over two years before that, increasing levels of referred pains, especially left leg.

I'm interested especially in the experiences of men around my age, as scoliosis tends to be far more a woman's condition than a man's (as my elderly mother has some scoliosis, I seem to have inherited the gene responsible).

I am also unable to pull my socks on, however, my surgeon's primary goal of arresting further deterioration, seems to have been achieved.

I have had my first post-Hospital surgical review 7 April 2011, with another late May, and I attend twice weekly physio (by taxi, as I am not yet confident driving my car yet).

Any older guys care to share their (similar) experiences ?

Regards,
'Harry'.

Jen
12-04-2011, 03:00 PM
Welcome Harry! To the best of my knowledge, you are our one and only older man. We have a couple of teenage boys here though. But the American Scoliosis forum has several men of various ages as members if you interested in looking there. Send me a PM if you want the site address (not sure if it's allowed here.)

At 11 weeks, I couldn't pull my socks on either, but you will get plenty of flexibility improvements over the next 12 months. I also didn't drive until 3 months. I thought I was 100% at 6 months but improvements continued up to a year. I'm 2 years post-op and almost 60. (The new 40.) I feel a million dollars and can do anything. Best of all, I'm pain-free.

Has the pre-op numbness in your left leg improved?

Christine
02-07-2011, 10:39 AM
Hi everyone

I have only found the Meet and Greet thread and after quite a while on the forum I thought I should put my bit up.

Hobart is home and I am almost 49.

My surgery happened in Melbourne recently on June 6 and I am now almost 4 weeks post op. I was fused (posterior) T4 to L1. My pre-op curve was around 46T 30L and I have a follow up in two months to see how it all went.

I had a fairly noticeable and painful rib hump and prominent shoulder blade on my right side, which appeared to be gone when I was in hospital, but over the past week or so it seems to have reappeared, especially my pesky pointy shoulder blade. I am hoping that is either part of the healing process, or it can be fixed in another procedure. I am back to lots of discomfort while on my back sleeping ( as if it wasn't hard enough anyway!!!!) and sitting.

My scar is super sensitive, especially near the lowest cross-bar (what is the name of those things?).

Other than that I think things are going as expected. Slow!

Christine xxx

Springy
12-07-2011, 08:22 PM
Springy, 29.

Live in Sydney.

It would be great to meet folk to be able to have some people to with which I can talk about spinal stuff.

Lil
14-07-2011, 08:46 PM
Hi everyone,

I have been a member for a while but don't post very much. I enjoy reading about everyone's experiences and all the positive post op feedback. My surgery date is set for 15th August and I am now on the countdown. I will be having fusion from T4 to L5 for correction of 64 degree Thoracic and 47 degree Lumbar curves. The surgery is on my mind quite a bit although all the positive feedback on here helps a great deal. I guess the not so great things going through my mind - such as 'what if I wake up during the op' are applicable to anyone having surgery. Anyway, just saying hi and will keep you posted. Cheers. Lil

Christine
14-07-2011, 09:30 PM
Hi Lil

The waking up during surgery was on my mind sometimes too!!! But did not think about it at all on the actual day of surgery. I was too busy with admission, blood tests, questions, forms, handsome anaesthetists ... just watching everything go on, which I found really interesting, so not so much time to think really. And the staff kept me quite amused.

Not long to go for you. I was fused T4 to L1 so you will have a bigger scar than me you lucky thing! I love it. It speaks about my past life and my new exciting one happening now with a stronger back.

All the best and make sure you go in without any stress whatsoever. One of my regrets is that I shouldn't have stayed at work so close to the surgery. A couple of weeks before to wind down is a good idea, if you can.

Christine x

Johnny
03-08-2011, 09:49 PM
Hi Lil,

I'm facing the same surgery but I have to luxury of choosing when to have it so no date set. I'm new to this forum too but it seems that everyone is helpful.

My lamenectomy last year had me thinking about the possibility of waking up on the table, but it's exactly like Christine says-I never even thought about it on the actual day, there's just too much other stuff going on!

Johnny
03-08-2011, 09:50 PM
I should say that as nervous as I am about the concept of more surgery, and larger surgery, the stories on here about people post-op who feel straight, stronger and in less pain really has me excited.

skelegrow
08-08-2011, 01:13 PM
Hi everyone,

I'm a 21 year old girl, and I was only diagnosed with scoliosis at the end of 2010. So too late for a brace for me :(. Apparently my curve is 48 degrees, and I'm on a waiting list.

I'll be glad to talk to some people who know what I'm going through :)

Lil
08-08-2011, 10:17 PM
Hi Johnny and Skelegrow,

Yes, everyone on here is very positive and it's ressuring to know many people go through this and seem to come out of it straight and strong!! My surgery is this coming Monday. Feeling ok at the moment - not much to do other than wait it out. Knowing that I will be having around 2 months off work is keeping me busy as I try to get as much work done as possible before I leave. Won't believe it but over the weekend just gone, had a fall at home and smashed my right shoulder / arm into the concrete - hurt so much thought I may have dislocated at first ....but I think just internal bruising as has settled down quite a bit now....but last thing I needed!! Anyway, I will post as soon as I can after surgery and let you know hpow I went. Fingers crossed all goes well!!

Cheers
Lil:eek:

Lil
08-08-2011, 10:19 PM
And to Christine....thanks for all the greay feedback and encouragement!!
:)

Tee
14-08-2011, 08:50 PM
Hi,
Great to find this forum. I am 54 yo and had my surgery in 1984. Two operations just nine days apart to correct a 76 degree Thoracic and 58 degree Lumbar curve. Had two children after the operations with no problems. 27 years this September and no problems to report. I live a very active life including motor bike riding with my husband. The Harrington Rod and spinal fusion has not affected my quality of life at all. Best thing I ever did.

Rodverta Braefusion
15-08-2011, 09:22 PM
Hi Tee and welcome to the forum. I look forward to your story (but not on this thread).
It is fantastic news to hear from someone that has been fused for as many years as you have, also to hear that you live a very active life. It is very inspirational to many of us that are 'young fusions'! Best wishes.

MySon
17-09-2011, 05:21 PM
My name is Chris (female) and my son Dane has 55 degree thoratic curve and not sure of the curve down the bottom, quite pronounced rib rotation. It came on quickly and has surgery scheduled of 18th October. Being a boy the specialist also sent him for a full MRI to see if a shirinx (?) was the cause - a very minor one which he said wasn't a problem.

I was feeling very alone and scared in my decision making for surgery and the journey ahead. My friends and husband were sick of my constant searching for information and support - I couldn't talk with anyone about it cause they thought I went on about it too much being too indecisive always looking for more and more things to support or reject my choice to proceed with an operation.

Then I found this site :) thankyou it has really given me such a boost I now feel like I can do it and actually feel lucky that we have such a network of new friends and access to good Doctors.

I started my own business with a friend just over 3 years ago and being self employed means hard work, long hours and for me not a full wage - this has already been hard on the family but has also made it very difficult to get a loan to pay for this operation (they are not keen to lend me money when I am self employed and about to take a couple of months off to look after my boy). But I really like the specialist and so does Dane and I want to be sure we get the best possible treatment - so much to my husbands disgust I am still trying to get the money so we can proceed with the private hospital. Last try this week (I have been trying for 3 months)

I will continue to read the articles on this post and share my own experiences - let's hope they all turn out good :)

Rodverta Braefusion
18-09-2011, 12:24 AM
HI Chris. WElcome to the forum! As I have said to many newcomers, read as much as you can and ask as many questions as you need to. You will soon see that we are a lovely bunch of people and always willing to help. Best wishes with your loan. Seeya round on the forums!

starbug
25-09-2011, 04:41 PM
Hi all! I live in Cambodia, and was recently diagnosed with scoliosis. Right now I have a Spinecor brace, which has a lot of straps and press-studs, but it's probably better for me than the Boston brace, which would be very hot in the tropics.
My family had to go to Singapore to get my brace. We'll have to go back there every three months. The brace is to stop my spine getting any worse, because it will probably not make it better.:sad:
So...welcome to all the other new members!:)

Rodverta Braefusion
26-09-2011, 04:40 PM
Hi Starbug, Hope the brace helps you. It's as pity they don't have a clinic there where you could get your brace monitored. Let us know how you get on. Best wishes

tupperchick
30-09-2011, 07:58 PM
Hi my name is Tracie and my daughter is Emily ( 16 ).... I am married to Jon who was born with spondylythesis and he is having his 3rd spinal fusion on 10th Oct 2011...We have 4 children and Emily has just been diagnosed with scoliosis.. Have had the xrays which GP today says are very impressive lol.. Unfortunately xray report has not put the degrees of the scoliosis..Am in process of making specialist appt..Thank you to whomever created this forum as all members stories have been a lifesaver to me

maddie
28-05-2012, 08:29 PM
Hey, I realise noone has posted on this thread since last year... but I've just signed up to this forum in the hope someone can get me some information about the surgery I'm having on the 12JUN12... hi all.

Rodverta Braefusion
31-05-2012, 11:22 PM
Hi Maddie and welcome to the forum. Not long to go now. Best wishes on a successful surgery and a speedy recovery. Let us know how you go.

diane11
28-08-2012, 12:41 PM
Hi All
My Name is Diane. I am 56 and have just finished all the testing for a planned operation. I am seeing the surgeon again this thursday. I am glad I have found this forum before I saw him as I now have more questions to ask. I don't think I took a lot in on the first appt. I am very scared about surgery but I do feel a little better after reading this site.

Jen
28-08-2012, 06:25 PM
Welcome Diane. I think we are all very scared about having this surgery. Do you have a date set? Ask any questions you can think of, because the fewer question marks in your head, the better you'll feel about it. Lots of us here have had successful surgery and for many of us, it's transformed our lives. Wishing you the best of luck.

rosie
29-08-2012, 06:27 AM
Hi
Welcome to the forum. Hope we can all support you through your time of surgery. Yes been scared and the time leading up to surgery is the worst time. It is so worth while having surgery to take the pain away. I am now just over 6 months post op and was only thinking yesterday I some times am now forgetting about the rods in my spine yeh. Keep us updated,
Rosie
And PS I am 48yrs, not a spring chicken

Rodverta Braefusion
29-08-2012, 09:35 PM
Hi Diane, welcome to the forum. I ditto Jen & Rosie and its true, you do forget about your rods. I actually forgot about my 3rd year anniversary this year as well! We should have a in-person Meet & Greet like they do in the States (not copying or anything!) Gather all in one State and have a BBQ or something. We could all wear names badges with our Alias.
Then alternating states, we could meet yearly and see how everyone is progressing.

rosie
30-08-2012, 06:34 AM
great idea

Christine
30-08-2012, 08:59 AM
Hi Diane and welome!

I am another older member and recovering from two surgeries over a year. And surviving!

Yes, I have also thought we should all get together somewhere. I would do my best to fly up.

Christine xxx

Nat1972
19-11-2012, 04:52 PM
My name is Natalie, I'm 39, 3 kids under 10 that I love dearly. I'm now separated from husband as he couldn't deal with my issues day to day. He's much more tolerant now that he can leave when it suits him. I'm happier cos I don't have to pretend everything is fine now. It's great to hear all the great outcomes. I was diagnosed at 6mths but havent had surgery, as it was originally scrapped when I was 15 and xrays showed natural bone fusion. It was presumed, I think, that the bone fusing itself in my teens would prevent further problems (so much for that). I'm now in incredible pain, can no longer work at all and almost housebound.

Since reading all your posts, I've decided I'm not going to whither away in a medicated haze, believing docs who aren't scoliosis specialists, and accepting a slow painful death for my family to watch. I'm seeing my doc next week for ref to someone in Adelaide and cross fingers I can be living a good life with my kids soon. I've had several other types of surgeries so that doesn't scare me. I can tell everyone scared of surgery that they should be more scared of not having it! Short term pain for long term gain... Better than long term pain for short term life.

Rodverta Braefusion
19-11-2012, 05:12 PM
Hi Natalie and welcome to the forum. I am from ADelaide as well. As this is a Meet & Greet, I look forward to hearing your story on the forums.

slider
03-03-2013, 07:42 PM
Hi

My name is Anthony. Although I did not have CD instrumentation as an adult I did have it at 15 and I an now just a tick under 40. I wore a Millwaukee for over 12 months but no effect, (I went from 34 to 36)

I am in Sydney

I mainly came to this site after having my first child and looking at what we can do to stay on top of the possibility that he may develop scoliosis.

I was diagnosed at 14, but self diagnosed at 9. (I did not know what is was but I knew I was not straight and was ignored when I discussed this)

Rodverta Braefusion
04-03-2013, 10:36 PM
Welcome to the forum Slider - did you get that alias from Topgun!

M&M
07-03-2013, 11:21 PM
Hi
I'm the first half of M&M - Mum (Carol) and my 13 year old daughter is the second half (M).
I took M to the GP to ask for a referral to a physio for exercises for her 'sunken breastbone', medical term pectus excavatum. GP also examined her spine and suspected scoliosis so ordered x-rays for both. The x-ray report did not quantify the curve except for "mild scoliosis" present (2 curves to the left). GP has now referred my daughter to a spinal surgeon which I thought was unnecessary until reading just about all of the Scoliosis Australia forums which are most informative ( and hint that surgeons are the best people to consult even if surgery is not needed).
Like MySon, as soon as I knew the diagnosis, I went searching for information.
I came across the Scoliosis Australia website and forums and couldn't believe my luck :). Thank-you so much to all the people who contribute, and pardon the pun, are the backbone for newbies like us. I figure like every other decision that we make, we need to be informed and this is a great place to get info.
I am interested in natural / preventative treatment such as the Schroth method.
I believe pectus excavatum is common with scoliosis sufferers. Also curious if there are any other diagnoses that are common in scoliosis sufferers, for example orthodontic issues requiring braces, reflux in infants.
Finally, good luck and speedy recoveries for all those about to or just had surgery, and so pleased to read all the long term happy to have had surgery stories.

Kiwicurves
20-04-2013, 09:08 PM
Hi
Also curious if there are any other diagnoses that are common in scoliosis sufferers, for example orthodontic issues requiring braces, reflux in infants.
Finally, good luck and speedy recoveries for all those about to or just had surgery, and so pleased to read all the long term happy to have had surgery stories.

Hi Carol , my daughter is also 13 and we first noticed her scoliosis at Christmas. Hers was rapid onset and curves increased from a mild 30-ish to close to 60 within 6 weeks. She had surgery in March, just 10 weeks after the initial diagnosis. (and is recovering beautifully, in fact went back to school 3 weeks after surgery).

Prior to surgery she saw an osteopath, coincidentally all 3 of his teenage scoliosis patients wear orthodontic braces and he strongly believes there is a link. Not saying the braces were the cause, more a contributing factor/trigger ... particularly in connection to the top teeth. My daughters orthodontist began work on her slight overbite in November last year, I first noticed her curve at Christmas. She also had a major growth spurt at this time .. around 10cm in 10 weeks over the summer holidays.

Our osteo is fabulous, has a medical background and is no "hippy healer" as both our orthodontist and Gp suggest. If I had my time over I would certainly leave braces out of the equation until my daughter had finished growing. Obviously not all kids with braces end up with scoliosis but I believe in our case they were part of the equation.

Feel free to message me if you want more info (our osteo gave me research papers which back his theory).

All the best.

M&M
20-04-2013, 10:00 PM
Hi Kiwicurves

Thanks for your reply and pleased to hear your daughter is doing so well.

We knew not all was right with her breastbone from about the age of 8.
My husband has a mild case of pectus excavatum. The scoliosis diagnosis was a surprise. Since then I have found out one of my daughter's paternal uncles has scoliosis, not requiring treatment. My side of the family also have various minor bone and joint conditions but not scoliosis that I am aware of.
My daughter got her orthodontic braces at age 13 years and 4 months.
I quizzed her orthodontist since I wrote the post and I think he said a small lower jaw is often seen in scoliosis patients. A small lower jaw creates overbite with the top teeth and this is the main orthodontic problem for our daughter.
I also read an article which suggested all orthodontic patients be referred to a spinal surgeon for scoliosis checking! Our orthodontist said (and I agree) that is not necessary because many people now get orthodontic braces purely for cosmetic reasons, but he didn't disagree for genuine 'medical reason' teeth brace wearers. I am not sure that braces cause scoliosis, more that the person probably has tendencies toward skeletal 'abnormalities'.
I guess time will tell whether our daughter's curve increases or whether she is one of the lucky ones. Either way, we will be as educated as we can be.

Carol

scoliospine
24-01-2014, 01:07 PM
Hey guys i have wanted to start a support group and website for the last 2 years and still want to do it.

I have recently got software for making websites but im looking for other groups as well that want to join or merge as i want to be a leading team member as i have big goals that i want to achieve involving scoliosis.

I want to make Victoria and Australia a scoliosis friendly/smart country like relay for life or cancer council.

Ways i plan to achieve that is to do public speaking for awareness and support others with scoliosis, fundraising for research and advancing treatment.

All questions, suggestions and advice welcome!

Or Facebook: Scoliosis Awareness and Support!
https://www.facebook.com/groups/415280738515584/

Cant wait to hear from everyone!

Thanks Nick!

Outkast1972
02-02-2014, 10:16 PM
Hello all. I am the Dad of a 3yo with severe scoliosis. I started noticing her left rhomboid muscle was bulging out when she was about 6 months old. No one else in the family thought it was anything to worry about except me. I even mentioned it to the family Dr who said it will even out when she starts crawling. Then it become it will even out when she starts walking. Then at about 1yo he said her spine is curved. We where sent to the a hospital spinal unit and they monitored it for awhile. Then she was made a brace at 2yo. Now she is in a full body cast as her last check up showed her spine check up showed her spine had gone from 65° to 90° in a year.

We had a lot of trouble keeping her in the brace as she hated it and as she got older could take it off herself. We would often find it laying around the house and her Kindy teachers told us they would find it laying around the playground! We could only keep it on her for 5-6 hours on a good day so I guess that is why it wasn't working. So it is easier having her in the body cast, we don't have to battle to keep it on her at least. But the poor kid misses out on swimming/pool activities as well as baths/showers.

I found this site and thought I would join up to talk with others in the same situation.

Thanks,

C

Eliz
02-02-2014, 11:36 PM
Thanks for sharing your story. You must have a little trooper! Life sure has dealt her a big hurdle.
My son has adolescent onset scoliosis which required posterior spinal fusion. Nearly one year on and going well.
Hope you have found a good specialist for your daughters ongoing care, second opinions are always a good idea even if only to confirm that you are having the best treatment.
I'm sure you will find some other families in your situation to chat with, this forum has really given me great support through trying times.
Good luck.

Outkast1972
04-02-2014, 11:05 AM
Thanks for that. Yeah she is a great little kid and rarely complains about her cast. The only time she complained was when it was first put on, she asked to take it off a few times and that was it. I explained it can't come off and she never asked again. I was amazed she accepted it so well.

She just got her cast replaced last week and the new one seems to be longer then the last one and digs into her legs when she sits. She got upset on the car ride home but that was it.

Funnily enough we had far more problems with her brace. We had a lot of trouble initially keeping it on her for more then 20 minutes! How do you explain to a 2yo she has to wear it 23 hours a day! We did build it up to 5-6 hours but that was only in the last 6 months. I guess when they know the brace/cast can be removed they will want to remove it. If it can't be removed they just accept it and get on with it!

We go back in 2 weeks to see the spinal unit Doctors about how things are going. Hopefully we will see some improvment after wearing the cast 24 hours a day for the last 8-9 weeks. I know she is an inch taller wearing it so it definately keeps her straighter! :)

thewondersmith
21-02-2014, 09:49 PM
Hi guys! Long-time lurker, first time poster here. My name is Kas and I'm 23; diagnosed at 12, wore a brace until I was sixteen (which unfortunately didn't really do much to slow the degradation of my lumbar and thoracic curves) and am hoping to finally go in for surgery at some point this year. I'm so glad to have found this forum- it's been great being able to read everyone's stories and see the support everyone has here!

Gsmum
03-03-2014, 07:18 AM
Hi Kaz

I'm new here as well. Mum to 7yr DD just starting our scoliosis journey. Lets hope we both make new friends here and can share on their journeys and wisdom.

Cheers
Vik

pyrzxl
01-04-2014, 07:49 PM
Hey i'm 28 and live on the sunshine coast... I got diagnosed at 11, had surgery to correct syrinx and spinal nerve tethering at 13, anterior fusion L1-L5 at 15 (2001). My doctor told me to come back "when i can't walk", i have regular migraines and chronic back pain. It was hard as a teenager but i'm a lot better at dealing with things now. Great to find this forum I've never talked to anyone else with the same condition

MissJen
02-04-2014, 08:47 PM
Reading about kids going into casts, reminds me of my childhood.... although back when I was first diagnosed (in the 80's) they were doing casting on children for scoliosis (as far as I understand)....I was put in a brace, and my straps were always at the back... anyway

Hi, Im from WA.... I don't actually remember a life before scoliosis, as I was diagnosed so young... by chance I was diagnosed by my GP as a 15 month old, and by 18 months I was put in my first brace.... For 23 out of 24 hours a day I wore the brace, full time up until the age of 7/8.... then again from ages 11 to 13 until my spinal fusion from T2 to T11, where they managed to hold the curve, but got a very poor correction ...... To be honest it wasn't until I was an older child that I begun to realise that wearing a brace was not 'normal' (as a young child I thought it completley normal to wear a brace).. and that I had a massive hump on one side (I think I noticed it more as an older child because trying to get things like bras and singlet tops to fit was impossible)..

So here we are 2014... for many years I pushed the limits when it came to what my back could do/handle... While I didn't regret it, probably wasn't the smartest move. These days I still have a damaged right shoulder (from the last back brace.. you would have to see it to understand why) which there isn't a lot they can do to help it ...... and I have a lot of pain and discomfort in my lower back, hips, butt and up and down the spine as the years have increased ..... I don't dwell on it really, yes it hurts but, really it could be a lot worse :-) , and I just get on with it.... That is all xx

Rodverta Braefusion
04-04-2014, 10:23 PM
Welcome to the forum Miss Jen. I hope you find it to be a friendly and informative site to help you in your scoliosis journey.

Outkast1972
02-05-2014, 02:49 PM
Hello all. I am the Dad of a 3yo with severe scoliosis. I started noticing her left rhomboid muscle was bulging out when she was about 6 months old. No one else in the family thought it was anything to worry about except me. I even mentioned it to the family Dr who said it will even out when she starts crawling. Then it become it will even out when she starts walking. Then at about 1yo he said her spine is curved. We where sent to the a hospital spinal unit and they monitored it for awhile. Then she was made a brace at 2yo. Now she is in a full body cast as her last check up showed her spine check up showed her spine had gone from 65° to 90° in a year.

We had a lot of trouble keeping her in the brace as she hated it and as she got older could take it off herself. We would often find it laying around the house and her Kindy teachers told us they would find it laying around the playground! We could only keep it on her for 5-6 hours on a good day so I guess that is why it wasn't working. So it is easier having her in the body cast, we don't have to battle to keep it on her at least. But the poor kid misses out on swimming/pool activities as well as baths/showers.

I found this site and thought I would join up to talk with others in the same situation.

Thanks,

C

Hello everybody

I thought I would give an update on my little girl. We had an update at the hospital today. She is now on her 3rd cast and her curve has gone from 99° to 75° on the X-ray 8 weeks or so after the first cast. And today it was 64° from the X-ray done at the change of the second cast. They didn't do an X-ray on the 3rd cast or today so I don't have a current angle but it should be even lower then that as the 64° was from her X-ray from about 10 weeks ago now.

Eliz
04-05-2014, 10:03 PM
That sounds like great news, hope you are all coping ok! Liz

Bruna
18-06-2014, 07:44 PM
Hi my name is Bruna and my 5 1/2 year old son has just been diagnosed with scoliosis. I don't know anything about it and saw a new paediatrician today and am overwhelmed with everything.

Hoping to speak to others.

jane
19-06-2014, 08:32 PM
Hi bruna, welcome to the forums,though I wish you did not have to be here. there are a few people who contribute to the forum who have very young children like your son who have been diagnosed with scoliosis. for each mother and father there is a different journey through this surprisingly common medical problem. my daughter had her spinal fusion at 15 and that is nearly two years ago. she recovered quickly and doesn't even think about it really. her life is no different now to before the scoliosis diagnosis aPart from her massive scar. Hope you get some good help from so e of the awesome surgeons Nd specialists out there. The people on this forum will support you al the way. they are awesome.
Regards,
jane

Stephaline
07-07-2014, 09:48 AM
Hi there,
I'm Steph, I'm 28 and was diagnosed with adolescent idiopathic scoliosis when I was 14. I went through brace treatment which prevented some curvature growth, enough for doctors to feel i could opt out of surgery if I wanted to. I did opt out, but as it's been 10 years since my last check up I am nervous about going back to see how my curve is faring as an adult!! My last scan at 18 showed an S curve with 43 thoracic and 49 lumbar degrees.

I didn't feel like I had a lot of understanding or support when I went through brace treatment (and I only had 2 years in it so was one of the lucky ones really!) so I'm in the process of creating a website aimed at children & adolescents to give them support & information. I'd love some help with it, so if you're interested, please PM me :)

Anyway thanks for having me here!! :)

MicheleJ
09-12-2014, 05:08 PM
Hi everyone,
I am 54 years old and have had back problems since I was around 30
I have never been formally diagnosed but my Chiro say, after seeing my X-rays 13 months ago that I have scoliosis and the beginnings of kyphosis.

I am in an enormous amount of pain and have a great deal of trouble functioning

My doctors have been swapping me form one NSAIDs to the next saying there is not much that can be done

I now have a new doctor who has given me a referral to a spinal injury specialist and said I will need to have a proper diagnosis and probably an MRI

My appointment is on 21 at January. I am very anxious about it and wonder if my Chiro"s diagnosis is correct considering neither of them actually showed me the reports, only the xrays

faerygirl
16-12-2014, 05:34 PM
Hi everyone, I thought I might introduce myself. I joined up a while ago however I have not posted on here until today I think. Anyway Hi.

I'm 55 and live in Brisbane and I have had scoliosis ever since I can remember - curves are around 65 degrees both ways. I haven't had any surgery on my back and I am interested in natural ways to manage scoliosis.

Shaz
14-05-2017, 08:16 PM
Hi everyone,
My name is sharon, I'm 47 and have had scoliosis since infant.. I was braced from the age of 5-15.. I am now at the stage I need surgery as my curves are at 60 and 38, stenosis appearing in the lumbar... Thanks heaps Shaz

Lucyharry68
16-05-2017, 04:14 PM
Hi Shaz,
Welcome to the forum. I am 3 weeks post surgery. There is heaps of info and members experiences posted on this forum that I found so helpful. Where are you from? I'm in Melbourne.

Shaz
16-05-2017, 10:39 PM
Thanks for the welcome. I'm from Sydney. It's wonderful to have such a forum with everyone sharing.. I look forward to hearing about your recovery and I'm sure I will gain inspiration from you all.. I wish you all the best xx

Beth
19-06-2017, 08:50 PM
Hi,
I'm a 30 y.o. in Melbourne with a 72 degree c curve with an anterior fusion (T10/11 - L3/4) booked for late August this year. Short version is I was diagnosed in my late teens (62 degrees) and the surgeon I saw at the time indicated I should not get surgery but I have had significant deterioration in symptoms in the last 3-5 yrs with increasing restrictions in movement/physical ability.

Any advice and/or information would be much appreciated (PM me).

Also, does anyone know where I can get a copy of the book by David Wolpert that a few people have mentioned was very useful?

Lucyharry68
19-06-2017, 09:46 PM
Hi Beth,

Welcome! I'm just on 8 weeks post surgery, T6-L2, also in Melbourne.
I had approx 68 degree curve prior to surgery and handing out till the 12 week mark to see what it is now.

There is heaps and heaps of information on here regarding advise and peoples experiences with surgery that was very informative in the lead up to my surgery. I do think that the surgery performed now allows for a quicker recovery that those who had surgery a number of years ago. I found that I had prepared myself for much worse. For example, not having to go to ICU after the op and going straight to a ward, wearing a brace being optional rather than mandatory for 12 weeks post surgery and being able to drive from 6 weeks post surgery.

If you haven't already, start building up those leg muscles with squats and lunges if you can - it will help your recovery

I got an electronic version of David Wolpert's book from Amazon Kindle on my iphone.

I have sent you a PM as well

Feel free to ask any questions.. Happy to help

Linda

Shaz
20-06-2017, 09:33 PM
Hi Beth,

Welcome.... Hope you find the forum helpful... It's great to read other peoples experiences and how they have recovered.. I am also awaiting surgery, I have s curve, and like you the last couple of years things have declined.. Wishing you all the best.
Sharon

Backtothefuture
06-10-2017, 04:13 PM
I’m ‘starting out’ (again?) seeking clinical/medical help. I’m 46, Male, Melbourne based. Why am I starting to look for medical help middle aged?? I’d like to share a story- preserved by the anonymity of this forum- a first share. Naturally, no names, places per forum rules.

When I was a teenager, I noticed one shoulder higher than the other and that my back would ‘hump’ when I bent over to touch my toes, peering over my shoulder in a mirror I noticed with horror a lateral ‘S’ visage. I went to my parents but they discouraged medical intervention (misplaced religious doctrine mainly) so it wasn’t until I was 19 and ‘rebelled’ and saw a Chiro, a Dr and ultimately, an orthopedic surgeon. I was already deeply body conscious, a shy teenager that was already accustomed to avoiding the beach and ‘over-dressing’ to mask what I felt was a deformity.

‘Deformity’ was one of the words used by this Surgeon when he stepped me out of a small office in a Melbourne hospital in my underwear into a theatre full of students and medical professions- (approx 50) after having mislead me that there was a “couple of colleagues” in the next room that could assist resolve the question of surgical intervention or not. I was then paraded, a study. At one point, he said “do that thing” (indicating for me to touch my toes to demonstrate the ‘hump’ forming when I did).

I remember almost everything, what he wore, the faces of his colleagues, the students, the room and most of all the shame that I did nothing. I said nothing, even when he twirled his finger at me (“Do that thing…”) all I did is tilt my head like a confused dog wondering where the cheese treat is for the trick.

After I walked back into the smaller consulting room (office?) and put my clothes on, another more astute Dr knocked and entered, seeming aghast he asked me “Did you know that was an auditorium?”. I think he clocked the shocked look I had when walked out like an exhibit. I shook my head, mumbled something… he apologized…a lot, but I didn’t seek medical attention for another 17 years.

At 36 I grew so comfortable with my GP that I mentioned my back and he ordered some X-rays but I think mainly through ignorance advised that as I appeared comfortable and mobile, orthopedic intervention was unlikely at my age and it was sidelined again.

Now, after months of pain it’s impacting my life again- carrying my young children upstairs from the car when they’re asleep saw me staggering to the medicine cabinet, cramps and leg pains. Right now, I’m dad- and in their eyes, I’m bullet proof and yes, they’ll develop to a point where my humanity and vulnerability will be understood but for now- it’s my job to be a total rock for them (together with their mum) and I’m scared of failing… all of them.

So, here I am, pouring it out (very cathartic). When I stumbled on this forum (thanks google) I thought maybe…. Just maybe I can feel a connection (despite the anonymity) to others that might have done such things growing up like… avoid the beach, agonize over clothing choices to select those that were the most concealing.. rather than the most flattering, over-dress in warm weather, avoid relationships, self-exclude from social activities etc… or maybe it was just me and I handled it all rather badly.

Either way, this long-winded introduction serves two purposes; 1) It was cathartic like I said.. please forgive my indulgence and 2) Obtain qualified recommendations from people in Melbourne that have had spinal surgery and/or alternative treatments. The backstory gives context- I don’t think I could go knocking on specialist’s doors/ health providers somewhat randomly, I need to limit who I trust with my care to those that have gotten results for real people in Melbourne. Please, if you can spare a moment PM me your recommendations- I’m open to various treatments but primarily I expect that orthopedic intervention is the only course that will secure the results I need physically as well as psychologically providing I am a suitable candidate. Thanks so much, apologies if I bruised any eyeballs.

Christine
06-10-2017, 08:16 PM
Hi Everyone!

So nice to see you pipe up Rodverta! xxx! And extra nice to hear you are well.

I had fusion T4 to L1 in 2011 and then thoracoplasty (5 ribs) in 2012. Now aged 55 (how did that happen!?) and flying to see my specialist in Melbourne for a follow up in a few weeks.

Feeling ok most of the time but still struggle with energy and muscle weakness. Mostly due to middle agedness and me juggling too many things :D

Finchi
22-05-2018, 11:17 AM
hi All,
as I have read elsewhere it seems a whirlwind introduction to the twisted journey of scoliosis is not that uncommon.
as it was when I found out my child was a curvy girl.
We have just recently had my daughter confirmed with scoliosis, thoracic curve at 48 degrees.
firstly it was guilt as to how I could have missed this ?
we have learnt to supress the guilt,
now it is research and how we can help.
we are in perth W.A if anyone has some info on centres that offer non surgical treatment, like Schroth etc?
or if anyone knows of any groups where the kids get together to talk and support each other.

thanks

Everett
12-02-2019, 12:46 PM
Hi! I’ve just joined the forum. I’m 71, S curve scoliosis since age 12 (in Adelaide), current thoracic Cobb angle 54 degrees, now deteriorating and with increasing back pain. I just missed Harrington rods (I was an exhibit later in the UK to students who were used to rods for my degree of curvature), but I had exhaustive physio as a teenager. Both my daughters have scoliosis (no-one told me it was genetic). One needed a Boston Brace, which halted the progression of her curvature. I have many stories about problems with various medical professions, and a few beefs that still bother me. For example, no-one ever asked me about Marfan, and the family clearly has Marfan body syndrome. And I am so sorry that the Orthopaedists have monopolised research - it’s such an exciting operation for them, no wonder they love it in teenagers and don’t give a damn about later years. I’ve tried the current physio/ chiropractic mob, but they seem to focus on prevention, and that is a long way too late for me.


I would love to hear other experiences about pain control. I cannot tolerate NSAIDs, which makes things difficult, but I do reasonably well with turmeric/blackpepper/ginger as the ‘natural’ alternative. I have a nice and affordable comfort brace (Ebay, from Latvia), and multiple hot water bottles. I take a fair bit of codeine, but have no trouble stopping it when I am over a pain episode (so far it has been episodic, longest episode 3 years). I have taken 100mg Tramal daily for 20 years, and it raises the threshold for difficult movements that result in pain (always hours later, which makes it hard to predict). I have tried 2 pain clinics, 30 years apart, including everything from low-dose psychiatric drugs to hypnotherapy. I would love to get advice about exercises that would strengthen my back but not cause pain, or anything else about pain control. I am also happy to correspond by email with anyone asking about my own experience.


Greetings to you all!

aldeani
16-03-2019, 10:51 PM
Hi all,
I just found this forum yesterday and since then have been reading all the posts I can. I’m 43 years old and pretty much always have known I had scoliosis as my Dad also had a small curve. We really didn’t go to doctors unless you were extremely ill so nothing was ever officially diagnosed till I was at least 30 when I sort treatment for increasing pain from a Chiropractor. Anyway I am now managing my daily pain that seems to be steadily increasing ☹️ and am now looking at surgical options. I am in Victoria and would love recommendations for specialised surgeons (I have private health cover) in Melbourne. If you could PM me your experiences I would really appreciate it.
Thanks Ali