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sariberri
10-21-2008, 05:46 AM
First of all I don't really know where to post this so sorry if it is in the wrong place.

I don't think any of you would know, but I have been having really severe back pain lately and been unable to walk straight. I have been experiencing this since about May.

I had a doctor appointment yesterday and we found out something we weren't expecting.

5 months ago, when my curvature was a typical scoliotic curve of 41 degrees, I was instructed just to continue wearing my boston brace 23 hours a day.

I had been having difficulty wearing the brace but my parents still encouraged me to wear it.

Now I will try to explain what my doctor said yesterday but I don't exactly understand it all.

First of all I was seen by the registrar who told my mum, dad and I that my curvature did not look like a typical scoliosis curve and that he would have to go get my surgeon (the hospitals system is weird, you just see any of the 3 surgeons on duty, so it's hardly ever the same one).

So then there was 3-4 doctors/surgeons in the room. My main surgeon was the main person talking, I think the most experienced one there. He explained that my curvature looked different as in the new x-ray my hips and shoulders were extremely uneven. I'm sorry if your not following as I really don't understand it all myself. When i lied down he was able to push them into place, despite the fact I was really, really, really uncomfortable!

They said they had never seen anything like this and they were not going to operate on something they were unsure of. They then said something that surprised me. They said I should not wear my brace anymore! I just have to do physiotherapy and come back and see them in 3 months.

I'm really confused and in so much pain and don't know how much more of this I can stand, definitley not 3 months of it. I am sick of people staring at me wherever I go! I don't want to even leave the house anymore!

What should we do? Should we get a second opinion? Really any advice will help!

Jimbo
10-21-2008, 06:36 AM
sariberri, I know you are scared. I am 26 years and I am scared! I think since you are so young it is best to try and leave your worries with the surgeons. I think the reason they are not yet operating on you is because your scoliosis is a little different from other peoples and they need to confer with other surgeons to find the best way to fix you. They may also think the brace may be doing you more harm than good, so do as they say and don't wear it. And do the physio and go back to the surgeons and they would, hopefully, by then have had more time to understand your scoliosis.

I know it sucks when people stare, it is one of the hardest things some of us have to deal with. Just try and get through those three months and remember that there is hope that you will be fixed. Be strong.

Oh and it is always a great idea to get a second opinion, as long as it is from a scoliosis specialist, so do it. It can't hurt.

Kitty
10-21-2008, 07:58 AM
Hey Sari,

*big hugs hun* You will be okay - it all seems really confusing at the moment and i know how you feel about not understanding the doctors. They aren't the best at explaining things, but trust them, they know what they're doing. I agree with Jimbo, you're in the best hands, and if they didn't think 3 months without the brace was good for you, they wouldn't have suggested it.

Enjoy your 3 months without it!!:D, do the physio and go back in 3 months. But like Jimbo said, go get a 2nd opinion if you like - it can't hurt.

And by the way, tell your parents (If you haven't already done so), how you're feeling. I'm sure they'll want to be there to help you through your worries. That's what they're there for!!

Take care,
Lisa

The Slice
10-21-2008, 11:23 AM
Sariberri, I know you must be very scared right now and this is the time when parents come in real handy. I suspect that there might be some info missing, stuff that you perhaps didn't hear, or because you didn't understand. Talk to your folks and ask them to try and explain things to you. Ask them if there's a way to see someone about some relief from the pain. What you've described about them being able to straighten out your shoulders and hips, sounds as if there's good flexibility in the spine. This is good if you should have surgery as it means that they have a better chance for successful straightening of your spine. Hang in there and take it one step at a time.

sariberri
10-21-2008, 08:30 PM
Thanks everyone who has replied so far.
I will do everything the surgeon told me to as I do trust him, I just don't quite understand all he said.
I have spoken to my parents, especially my mum.
She said she's very confused as well.
I do think she understands a bit more than me though.
My dad on the other hand is a very optimistic man, so there's probably no help talking to him. lol!
In regards to the second opinion, it's really hard here in Victoria, Australia as the surgeons which work at the Royal Children's Hospital are basically the only scoliosis surgeons in the state. They each work at their own clinics as well I think. There may be 3 or so surgeons who work individually though according to scoliosis.org.au
I am going to the adolescent outpatients at the hospital today so that they can hopefully prescribe me some strong pain medication as all I have been having is over the counter stuff.
Anyways I'm beginning to except that 3 months isn't as long as the 5 months I have been in pain for so far and that I just need to remain strong and try to keep my mind on other things.

Once again thank-you for your replies so far.
For those of you reading this that have something further to contribute please do! :)

Jimbo
10-22-2008, 06:52 AM
You have to wait 3 months, you are lucky! I have to wait another 9 months to see my surgeon.

Ian P. Torode, MD
64 Chapman Street
North Melbourne, VIC 3051
Australia
Phone: 61 03 9329 4937
Adolescent, Juvenile/Infantile

This guy was listed on the scoliosis research society specialist list. You may want to contact him.

Plenty of great surgeons in Victoria, and I think you will be fine. The good thing is you found out about your scoliosis whilst you are still young and it is easier to fix than when you are an adult. Stay stwong :P

sariberri
10-23-2008, 12:52 AM
I saw Dr. Ian Torode at the Royal Childrens once.
He is the best scoliosis surgeon in the Victoria to my understanding.

The Slice
10-23-2008, 09:15 AM
Hey Sarah, hang in there. Perhaps you, and/or your mom could put together some questions that you have from the last visit and could try to either ask the doctor, or someone from their staff over the phone to see if they can help clear things up.

SarahJL
03-10-2009, 03:16 PM
I feel for you sweetheart. I am 51 and had surgery at 16. Never really had pain until this past year when I broke a rib and my shoulder started giving out. I would do the phsio but also talk to your Mum and your Dr. about the pain. Find out if there is some kind of medication they can give you to deal with the pain and the anxiety. Cymbalta is a drug that I just started with. It helps a little with the pain but also helps your mood so you aren't worrying all the time. Not sure if they can give it to teenagers, but maybe you can see a pain specialist and they can give you advice. As far as people who stare, just ignore that and know that God loves you and you are precious. Speaking from experience, I really think that some kind of counseling or support group would be such a good idea for adolescents going through any kind of scoliosis situation. You are just starting to come into your own and you have to see yourself as beautiful and whole even with the problems. Massage helps a lot if you can afford it or get some insurance coverage for it. Good luck honey.
First of all I don't really know where to post this so sorry if it is in the wrong place.

I don't think any of you would know, but I have been having really severe back pain lately and been unable to walk straight. I have been experiencing this since about May.

I had a doctor appointment yesterday and we found out something we weren't expecting.

5 months ago, when my curvature was a typical scoliotic curve of 41 degrees, I was instructed just to continue wearing my boston brace 23 hours a day.

I had been having difficulty wearing the brace but my parents still encouraged me to wear it.

Now I will try to explain what my doctor said yesterday but I don't exactly understand it all.

First of all I was seen by the registrar who told my mum, dad and I that my curvature did not look like a typical scoliosis curve and that he would have to go get my surgeon (the hospitals system is weird, you just see any of the 3 surgeons on duty, so it's hardly ever the same one).

So then there was 3-4 doctors/surgeons in the room. My main surgeon was the main person talking, I think the most experienced one there. He explained that my curvature looked different as in the new x-ray my hips and shoulders were extremely uneven. I'm sorry if your not following as I really don't understand it all myself. When i lied down he was able to push them into place, despite the fact I was really, really, really uncomfortable!

They said they had never seen anything like this and they were not going to operate on something they were unsure of. They then said something that surprised me. They said I should not wear my brace anymore! I just have to do physiotherapy and come back and see them in 3 months.

I'm really confused and in so much pain and don't know how much more of this I can stand, definitley not 3 months of it. I am sick of people staring at me wherever I go! I don't want to even leave the house anymore!

What should we do? Should we get a second opinion? Really any advice will help!

Pooka1
03-10-2009, 06:27 PM
Sarah,

First, I am very sorry you are in this pain. I think someone should help you with that rather than make you wait three months for another visit with no game plan other than to do PT and return in 3 months.

I don't understand the point of waiting three months. You are in the surgical range now. Are your parents on board with getting surgery if you need it? There is no evidence PT can stop or reduce a curve though it might help with the pain.

If you were my kid and your curve stumped the three surgeons near you, I would seek out another surgeon or three elsewhere in Australia who can give you a definitive answer as to whether surgery can help you and why or why not. Based on your post, it is not clear if this group of surgeons will ever figure out if you need surgery, all the while you are in pain.

If you truly have a one in a million curve (as opposed to inexperienced surgeons) then you may need to travel to someone who is far more experienced with unusual curves.

From your signature, you have a 55-60 degree curve. My kid had a ~58* thoracic curve which was very rotated but still corrected to 5* with almost no rotation.

Do you know where the curve is on your spine? Is it high or low? What EXACTLY makes it so unusual? The amount of rotation?

I wish you luck. I hope the PT helps with your pain until there is some better-defined game plan.

kaizan
03-11-2009, 08:20 AM
HI Sarah,
nice to meet you, i also live in Melbourne.

I'm sorry to hear you are in so much pain, the doctors at the RCH are all fabulous but there are other specialist around here that might be worth trying. What did the doctors say about managing your pain?
I would be doing the PT as regular as recommended and looking for a 2nd opinion.
I've been seeing my specialist since i was 12 (reckon he was mid 40's then) and he was the best in the business back then. he's been monitoring my progression for nearly 30 years and now has referred me on to a surgeon. he may even be a starting point if you want to try him to get pointed in the right direction.
goodluck and i'll follow your posts for your progress.

warriorgirl245
04-26-2009, 09:33 AM
Sorry, but I don't quite understand it either:confused:.I do have one thing to say though, if you just hold one, and stay focused, I am sure you can get through whats going on with you right now. ( I know this might not be much help from a newcomer, but I know that if you stay calm in your situation things usually come out right.):D:D:D:D

S4Sarah
05-18-2009, 09:01 PM
We are here for you if you ever need someone to talk to. remember there are lots of other kids (and adults) out there going through the same thing as you, don't feel left out.
There are a lot of therapies out there and treatments, and as a last resort surgery. Have you heard of or tried, Shoe wedges, Spinecor, or Physical therapy or any of the exercise programs, Chiropractors, braces, etc.
You may also want to find a doctor that deals with rare cases or go to a really good hospital like a Mayo clinic hospital or something like that.
I hope you get better, I'm here for you if you ever wanna talk. Good luck and God Bless you! :)

S4Sarah
05-18-2009, 09:12 PM
SarahJL- I am not a strong supporter of Psychiatric drugs. First of all Scoliosis is a big thing especially to the extend of severity in some cases, it is completely normal to be scared and worried. With support from friends and loved ones this can be dealt with.
I also have OCD and I was precribed Psychiatric medication, I felt so bad and I began to develop serious Side effects like shaking, vomiting, drooling, and uncontrollable jerks in my arms and legs. Luckly I got off of it and have never tried any since then. Once I stopped the side effects went away. Many companies are being sued and there are a lot of major lawsuits going on. I do not believe they are safe and I think doctors are too quick to prescribe a pill, there are medications for everything, it is a bit ridiculous. I can understand allergy medications, antibiotics when needed, and stuff like that, but pharmacuticals are going a bit far.
It's completely normal to be scared and worried about Scoliosis.

cactigirl96
05-20-2009, 07:57 PM
i think u should see a second opinion
theres probably a surgeon/doctor out there who is willing to operate on u.
you should look around with your parents at different doctors. maybe a spine specialist like mine would be the best choice, but try to see a different doctor if u can.

~*Hannah*~

sariberri
12-13-2009, 09:10 AM
Thank-you for all the replies!!!

I haven't been on this forum for quite some time so I will give you all an update on where I'm at.

October 2008 - (when I first posted this topic) My curve appeared to be between 55 - 60 degrees due to the way I was standing. My surgeon had never seen a curve like this especially since it had increased by between 15-20 degrees in just 3 months.

February 2009 - My curve was 50ish degrees and looked more normal, even though it still slightly puzzles my surgeon. He wanted to put me on the list for surgery but I was too much underweight so he told me to come back in 6 months and I would hopefully have gained some weight.

August 2009 - My curve was about 52 degrees (maybe a bit more) and I was put on the waiting list for surgery. We were told it could take over one year though till I have the surgery!

Anyways, I still suffer from a lot of pain. There is not one day that goes by when I am not reminded of my scoliosis. Simple daily tasks such as sitting and standing are incredibly difficult for me now. I hope that one day soon my back will be "fixed." I know that I will always have scoliosis and my back will never be completely normal but it has to improve. :)

Pooka1
12-13-2009, 10:19 AM
Hi. Glad you posted and sorry to hear about your pain.

Your trajectory seems unusual but yet similar to the one Pam (from here) had. Are you wearing a brace or were you when the curve stabilized? If not then the brace proponents certainly have their work cut out for them between you and Pam.

It shot up to about 50* and held there. Your curve has been stable for almost a year and possibly longer. If the 15-20* in three month figure is correct, that would be similar to my one daughter whose curve moved on average 5* a month for at least five months.

I hope something can be done for your pain. If you can get a handle on that and your curve remains stable you may not need surgery.

Good luck.

Pooka1
12-13-2009, 10:49 AM
Okay I'm trying to figure out from what you wrote what is going on. I have hte following:

May 2008 - 41*

October 2008 - 55-60* and stopped wearing the brace.

February 2009 - ~50*

August 2009 - ~52*

So your curve progressed 14-19* in 5 months or about 3-4* a month and then stayed stable for almost a year.

The reason they asked you to stop wearing the brace when you were over 50* is I don't think braces even claim to help once the curve is in that territory but I don't know that.

The unusual part is the stability after reaching ~50*, not the documented rate of progression or anything else as far as I can tell.

They simply have to help you with the pain and not continually ask you to wait.

Have you had a MRI?

sariberri
12-14-2009, 12:55 AM
Sharon, your timeline is correct but my surgeon ignores the major jump as the degree of my curvature was because I couldn't stand properly (i was like a hunchback for 6 months). He just goes by that it has gone up +10 degrees in the past year.

Oh and yes I had an emergency mri last year but all was normal.

Pooka1
12-14-2009, 06:46 AM
Sharon, your timeline is correct but my surgeon ignores the major jump as the degree of my curvature was because I couldn't stand properly (i was like a hunchback for 6 months). He just goes by that it has gone up +10 degrees in the past year.

Oh and yes I had an emergency mri last year but all was normal.

Sarah,

From your signature, are you saying you have to endure pain for another year before you get into surgery? Is the surgery expected to hep the pain?

I certainly hope they are helping with your pain now.

Did you ever find out what exactly is not unusual about your curve?

ETA: You progressed ~10* in 15 months, not a year if your timeline is correct. At least six months of that you were stable. That is a very interesting trajectory if you don't mind me saying so.

Good luck.

sariberri
12-15-2009, 11:41 PM
Sarah,

From your signature, are you saying you have to endure pain for another year before you get into surgery? Is the surgery expected to hep the pain?

I certainly hope they are helping with your pain now.

Did you ever find out what exactly is not unusual about your curve?

ETA: You progressed ~10* in 15 months, not a year if your timeline is correct. At least six months of that you were stable. That is a very interesting trajectory if you don't mind me saying so.

Good luck.

My surgeon said that he can not guarantee anything in regards to my pain. He said some people find the surgery helps their pain whereas others find it causes more pain.

They are not helping my pain at all now. My mum asked my doctor (not my surgeon as they don't prescribe anything) for something to help my pain but he wouldn't do anything.

I don't really know why my curve is so different my surgeon is just worried about it when he goes to operate. He hasn't decided whether he should fuse just my curve or the rest of my spine as well in case the top or bottom curve.