Scoliosis Support  

Go Back   Scoliosis Support > Scoliosis > Infantile, Juvenile and Congenital Scoliosis Room

Notices

Reply
 
Thread Tools Display Modes
  #1  
Old 4th March 2011, 02:53 PM
azlynn_n_aurora's_mama's Avatar
azlynn_n_aurora's_mama azlynn_n_aurora's_mama is offline
Junior Member
 
Join Date: Mar 2011
Location: USA
Posts: 5
Default Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

I can't do this to my baby I just can't. When I read all the tubes and such this girl had to be hooked up to I can't do it. And she had to be on morphine. Is that the case for everyone that gets the spinal fusion surgery??? It seems really horrible and I read somewhere that the risks of complication is actually quite high, I thought it was low?? I need help because my heart is broken over all this.
__________________
Ephesians 6:12-13
12 Our fight is not against people on earth but against the rulers and authorities and the powers of this world's darkness, against the spiritual powers of evil in the heavenly world. 13 That is why you need to put on God's full armor. Then on the day of evil you will be able to stand strong. And when you have finished the whole fight, you will still be standing.
Reply With Quote
  #2  
Old 4th March 2011, 03:12 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,309
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

First of all, have a hug

There are a lot of horror-stories out there on the net. However, if you read through past posts here, you'll see that hundreds of us have been through the surgery and have come out smiling. Children are particularly resilient and often the whole thing is much harder on their parents!

The risk of very serious complications is extremely low. If you are worried, ask your daughter's surgeon for statistics. Minor complications happen more frequently, but they can be anything from an allergic reaction to dressings to constipation.

The tubes and things are standard things to help you breathe and pee and to give you fluids when you have surgery, they're nothing to worry about. And morphine is just a painkiller, it works well. The surgery is a big one so it would cause a lot of pain if it weren't controlled, but drugs like morphine mean that it doesn't have to be terrible.

It's good to be aware that there are a few unscrupulous people on the net, who are trying to profit from unproven "cures" for scoliosis. They seem to prefer to make out that surgery is extremely risky and dangerous rather than concentrating on showing how their treatment can genuinely work. Make sure that you seek info from honest and reliable sources, and ask your daughter's surgeon if you are worried about anything. It sounds like you really should do this, for your own peace of mind

Toni xx
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #3  
Old 4th March 2011, 08:37 PM
clairabella68's Avatar
clairabella68 clairabella68 is offline
clairabella68
 
Join Date: Jan 1970
Location: Castleford, near Leeds
Posts: 856
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

Oh azlynn_n_aurora's mum - I know exactly how you feel.

I was scared, terrified and how could I do this to my daughter. And what if something went wrong - it would be MY fault!!!! (My daughter has had lots of problems and nothing has been STRAIGHT FORWARD, so I believed that, although the risks were low, if something was to go wrong - it would go wrong with her). I was scared and anxious and I was on antidepressants, cos I just found it all too much.

This support site helped me through it all. I read stories and look at photos and it really did prepare me for the surgery and the days after.

Once the surgery was over - it was such a relief. She was well, had done well in surgery and they were really pleased. Recovery was very fast and we were home on Day 5. Her recovery was uneventful.

I am sorry that you have been scared by someone's story. We put our stories on here to help other mums (and their children) understand about surgery and the recovery.

I really do understand how you feel. We will be here to help and support you through this difficult time.

Thinking of you ((((BIG HUGS))))

Claire xxxxxxxxxxxxx
Reply With Quote
  #4  
Old 4th March 2011, 10:33 PM
DeborahBen DeborahBen is offline
BlueL
 
Join Date: Jul 2010
Location: South of England
Posts: 118
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

Okay you are going to get us all started now with the tissues!!!!! I have one child Oliver, he is my life, everything to me and we have been through this twice! I understand totally where you are coming from and it is really horrid, I think more for us as parents rather than our children. Oliver is ten, first operation 18 months ago and the last one 11 weeks ago. Please read Rachies piece about hospital diary as this mirrors my experience and I am sure a lot of others as well. Who is your surgeon? Being a parent is the hardest job in the world and I think it is because we have to make such big decisions for another human being. I think that I made the decision as I wanted to ensure that I did everything I could for Oliver in the hope that when he growns up and (hopefully) everything is fixed he could get on with the rest of his life. Children are amazing, far more resilient than adults and I am sure that your daughter will cope well with the recovery. Morphine is fanastic and a very good pain killer, I dont think that you need to worry about this but if you are I am sure your doctor would be able to advise you. Sending you lots of hugs and you are really in the right place for lots of reassurance, the help and advise I have been given has been a godsend.
__________________
Mummy to Oliver aged 10. Failed spinal fusion at Standmore 09 second surgery on 15th Dec 10 at GOS with Mr. Tucker.
Reply With Quote
  #5  
Old 5th March 2011, 02:36 AM
dcintron dcintron is offline
Junior Member
 
Join Date: Feb 2011
Posts: 17
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

I know how you feel. A month ago we found out our 4 year old daughter was diagnosed with congential scoliosis. I was a basket case. The wonderful people here gave me the support to get through the initial shock. I spent a better part of a week crying. The first thing we were told that while this is a big shock it is not life threatening and she was not in any pain. Our specialist sat down with us and comforted us and said this is not the end of the road. My specialist has scoliosis and said take a breath and let's talk. First we needed to get some other tests done to make sure they're no other problems. So he recommended a ultrasound for her kidneys and an MRI of her spine. The reason was this type of scoliosis happens in the pregnancy. This scared the crap out of us. We hurried and got the ultrasound 2 days after we found out. That came back normal. Then it was time for the MRI and it was another normal outcome. We had a sigh of relief. Now we would tackle the scoliosis. Our doctor said now we just wait and observe how the curve progresses. We are praying it doesn't, but we're taking it a day at a time. I read your posts and I know it's hard, but we're here for you. Also get a second opinion to make sure you are comfortable with what they are doing. Surgery is always a big deal, but technology is truly amazing. As I write this I am enjoying a cartoon movie with my girls while they eat popcorn. Take care and lean on us for support.
Reply With Quote
  #6  
Old 6th March 2011, 11:45 AM
magnumlady magnumlady is offline
BlueL
 
Join Date: Jan 1970
Location: Ireland
Posts: 704
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

For every horror story there are so many more positives. Yes it is very difficult to see your child going through any kind of trauma but when you see the positives after surgery and in my case how well my child coped it is worth it.
Reply With Quote
  #7  
Old 6th March 2011, 01:01 PM
Philbo Philbo is offline
Junior Member
 
Join Date: Feb 2011
Location: Portsmouth, UK
Posts: 12
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

I really wouldnt listen to the stories on the internet, anyone who has had a bad experience feels the need to massively exagerate the whole thing!, think if you went to a resturant and it was terrible? everyone who asked you how it was you would make it out to be the worse place you've ever been to!. People do this by nature, and everyone else is spot on, for one bad case there is a hundred, or more, great ones.

my brother is due in for his fusion next week and speaking to the surgeon is very good for peace of mind and even better is speaking to people on here!. so try to think of how much better it will be after the surgery and let everyone know how it went.

Tom
Reply With Quote
  #8  
Old 6th March 2011, 01:18 PM
madmum's Avatar
madmum madmum is offline
Teenager at heart!
 
Join Date: Feb 2010
Location: Camberley, Surrey
Posts: 165
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

It is very natural to feel scared and anxious when your cherished child is about to undergo such major surgery. I truely went 'to pieces' when my son was told he would need an operation. You would not be a loving, caring mum if you did not feel like you are right now. Speak to people who have had positive experiences, and ignore the scare stories - I had to do just that.
The nurses and doctors at the hospital are very used to parents asking searching questions. Talking to other parents helps too.
Be kind to yourself. How you feel is only natural.
Tracyx
__________________
Hi I'm Tracy - mum to Cameron 17yrs who had anterior release, costoplasty, and posterior fusion at RNOH Stanmore 2009 under care of Mr Sean Molloy. All procedures done in one 9 hour operation. Thorocolumbular curve reduced from 74 to 16 degrees. Fused T3 to L2. Adolescent Idiopathic Scoliosis.
Reply With Quote
  #9  
Old 6th March 2011, 07:27 PM
azlynn_n_aurora's_mama's Avatar
azlynn_n_aurora's_mama azlynn_n_aurora's_mama is offline
Junior Member
 
Join Date: Mar 2011
Location: USA
Posts: 5
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

Thank you. I know our church will be lifting her up a whole bunch and I'll make sure she has her prayer shawl with her. I think it's more me that I know what she'll go through and what all the wires and everything mean. And the IV is going to upset her really bad she hates needles like I do.
__________________
Ephesians 6:12-13
12 Our fight is not against people on earth but against the rulers and authorities and the powers of this world's darkness, against the spiritual powers of evil in the heavenly world. 13 That is why you need to put on God's full armor. Then on the day of evil you will be able to stand strong. And when you have finished the whole fight, you will still be standing.
Reply With Quote
  #10  
Old 7th March 2011, 11:24 PM
clairabella68's Avatar
clairabella68 clairabella68 is offline
clairabella68
 
Join Date: Jan 1970
Location: Castleford, near Leeds
Posts: 856
Default Re: Bawling because I read a story of 13 yr old girl and her surgery, I can't do this

Hi

Katie has needle phobia - taking a blood test is absolutely traumatic for her - and me (and everyone involved actually)!! So much so that the last time she needed a blood test, she was having a general anaesthetic for an MRI scan for something else, so I asked them to take it while she was "out"!!!

Regarding the IV - it was there when she woke up and didn't phase her at all! I think it is the thought of the needle going in that "freaks" her! (I am going to have all the trauma again when she has her next pre-op and has to have blood taken again, so I am not looking forward to that)!

It is a very worrying time for us mums, and we DO understand how you feel.

Thinking of you, Claire xx
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT +1. The time now is 12:52 AM.


Powered by vBulletin® Version 3.7.1
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
(c) Scoliosis Support