Meet and Greet

[Rodverta Braefusion]

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]

The actual curve degree was 58 not 50. Just realised error, no edit buttons here!

[Admin]

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.

[Rodverta Braefusion]

Thankyou Admin - my apologies.

[Admin]

You're welcome Rodverta.

[Jimbo]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Thanks Jen. Yes it is rib pain- or at least pain where my rib used to be!

[Jen]

I sent you a PM Bonnie.

[macky]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

And to Christine....thanks for all the greay feedback and encouragement!!
:)

[Tee]

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]

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]

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]

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]

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]

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]

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