Surgery in April. What to do in the meantime?

[phaden]

Caitlin's checkup was bad news yesterday. Despite total bracing compliance, her curves had progressed from the low 40s to the low 50s since May. The surgeon says it's time to go in and fix things before it gets harder to do so, and she'll be having the procedure in March or April of next year.

What we can't figure out is how to get along between now and then. Not the blood giving and bending x-rays and so on, that will just be following instructions, but the attitude in the home.

On the one hand, five months is a long time to stay in Red Alert Anxiety Mode, and we'd like to have a nice Christmas and summer (summer starts in December down here), so maybe we should just ignore it and go on as normal.

On the other hand, we don't want to trivialise it by pretending it's not scary, because it is.

On the third hand (everyone knows Mums have more than two hands) we don't want Caitlin to feel she can't talk about it because we're ignoring it, or, alternatively, obsess about it all the time because there's really nothing to be accomplished by that.

I guess I've run out of hands. Anyone who has been through this, or is going through it now have any suggestions?

Thanks - Patricia
New Zealand

[jc3]

surgery in april

hi patricia
sorry to hear that your daughter complied with her brace and still is going to need surgery. I hear so many kids who wore their braces and still ended up needing surgery. My daughter had a brace but hardly wore it and just had surgery 3 weeks ago. It's hard not to think about it for the next five months because i'm sure there will not be a day that goes by that you won't think about, but i would try to make things as normal for your daughter for the next few months and let her enjoy herself. If she sees you're stressed about it then she will sense that. I would leave the door open for her though for her to talk to you about it maybe bringing it up every once in a while and see if she wants to talk about it or talk to other girls who are going through the same thing or went through it already. It's a tough time on us and on them. Could you imagine how they feel? I know i couldn't think about anything else before my daughters surgery and even though my daughter didn't want to talk about it before she was feeling it. I'm glad the surgery is over and now we're doing the recovery part. I don't know which is harder.
This board was and is great support for me.
Good luck
jennifer

[Carmell]

Hi Patricia,

I agree with what Jennifer said. Try to live life as normal as possible. One other thing may be to plan a small (or big, doesn't matter) vacation that you and your family can go on about a month before her surgery. This will give you something positive and fun to look forward to, rather than the heavy emotions of the pending/looming surgery. We knew for 8 months before Braydon had his major implant surgery. Very hard to function, emotionally, about anything else during that time. We managed to plan a trip to Florida/Disneyworld for the month before Braydon's surgery. It was a wonderful way to occupy my thoughts and the time before surgery. Maybe Caitlin would like to help plan the vacation - or even a big party. Something to have to look forward to rather than always thinking about the surgery. The surgery is going to happen, regardless. You might as well enjoy the time leading up to it.

You'll do great. Take care and feel free to use this board to help you make it through the coming months. That's what we're here for.

[mumof5]

Hi,
I agree with Jennifer and Carmell, planning something fun will be good.
I have another suggestion on a more day to day basis. Why not 'get into shape'.
Besides being good for everyone and giving the family something healthy to do together, it may help with her recovery. Try something that is core strengthening, like yoga or pilates. Even with a curved back there should be plenty of things to do. Check with the doctor first of course.
Even if it turns out to be going for a walk, it will give Caitlin a goal to work towards and concentrate ( like making a set distance) as well as helping her after surgery.
Best wishes.
Cheryl.

[phaden]

Dear Fellow Scoli Mums and Dads:

Thanks so very much for all the feedback. The consensus seems to be to try to get on with life, plan a visit to Disneyland and maybe do a Yoga class. If it wasn't for the surgery part, this would sound like a pretty good time.

Again, my thanks for the support; it helps a great deal.


Patricia
New Zealand

[Peggy]

Hi Patricia,
First let me wish you a successful surgery and recovery. Know that lots of prayers and well wishes are with you. This site is a great place to vent and to share. It helps first and foremost to know you are not alone. My daughter had a double fusion last April and we knew from October on that she would have it. So like you it was a long agonizing wait. All I can offer in hopes of helping is to keep positive thoughts. Live life normally. See this as a step to a much healthier life. Try hard not to dwell on the surgery to come. I know that is really a difficult thing to strive for at this stage but it helps to let it go sometimes. It is inevitable and the day will come. Till then all the worrying and hand wrangling you can do won't change the outcome. Just hang tight, know things will get better and stay positive. I was a total wreck for months. Some days I had trouble functioning. All because of the fear and dread that was in me. We love our kids so much that we can't handle being out of control of things that happen to them. We can control the atmosphere in which they live though. Keep a smile and a light hearted approach (even though inside you are a knot) and get thru each day. This Spring you will be at the recovery point and have this apprehension behind you. You will be walking around with a smile on your face everytime you look at your child. I don't know if you are a religious person or not but if you are a believer, put it in God's hands. He will take care of your daughter and the rest of your family. Take comfort in those around you that care. Everyone here on the board too that supports and prays are with you all. There are so many of us success stories out there...remember us all as you hang on thru these months. God Bless.

[phaden]

Peggy --

Beautiful. Thanks.


Merry Christmas and happy New Year to you all.

Patricia
New Zealand

[mamakay]

phaden,

It is impossible to not think of your childs surgery and scoliosis EVERY day. But! your life has not changed (yet) bc of it as far as activities right? Our doc told my daughter to do everything she was doing before bc that may help strengthen the muscles. As long as there is no pain of course. Kids can be great at this and I think it was good therapy as it was summer and she did all the normal water activities then.
Also it will be a while before they are allowed to do those things after the surgery so I felt I had to give her those days.
You will have up and down days prior to the surgery day but just be glad they can help her and know everyone recovers differently, some quickly others slower but with so much advice and experience here you will feel you have a good view of things to come.
My daughter did not go into ICU but was in the hospital for a week and had nauesea and healing issues long after she came home, she was not bloated either. So many different factors depending on what choices you make like donor and type of operation(posterior/anterior/ribremoval...etc).
You will do great bc you have found this site early and also it was suggested to me to get this book: Scoliosis Surgery by David Wolbert?? I think all that is right, anyway it was good advice to me and I am still referring back to things in it.
Good Luck ,later..kay

[Karen Ocker]

waiting for surgery

I actually was grateful that here was help for me. I concentrated on hope. Can you imagine having the opposite situation where nothing could be done?

I waited 3 months for my surgery. I walked 12 miles a week to strengthen my impaired breathing. I also did Pilatesexercises. This actually helped me post-op because I would tighten certain muscles when I moved. This reduced pain greatly. I also went on a vacation right brfore I had to start saving my own blood.

Karen

[matt]

Hi Patricia!

Hi Patricia. My name is Ross. I'm a 15 year old boy from SW Louisiana, USA. I was diagnosed with Scoliosis and Scheuermann's Kyphosis Disease in March. At the time my scoliosis curve was about 21*, and my kyphosis curve was about 57* (normal-about 40-45*). At that time I joined the NSF. I was very depressed. So after 3 months of going to my ortho in Lake Charles, he told me that I needed to see a Scoliosis specialist at a pediatric hospital. So that is exactly what we did! So we took the 10 hour trip both ways to Shreveport, La. to see Dr. Richard McCall at Shriners Hospital for Children in the beginning of June. When we came home the news wasn't so good. He told me that my scoliosis was now 41* and my kyphosis was in the 80's. The only thing that they could do was surgery. And the closest date was September 20th. So I had to wait for 3 1/2 months. For the three and a half months it was kinda hard. I mean it is practically always on your mind. Your child may not show it, but you constantly think about it. Watching TV for example, you may see someone running, and think, man I won't be able to do that for a while. All I can tell you, is to make sure that your child knows that you are there for them if they need you to talk or whatever! Make sure that you talk to them too. And if you need to talk to other parents, this is the best place to do that. Like me and my mom talked about it occasionally. But the day before my surgery, me and my mom went into the hospital courtyard to watch the sunset (it's better than staying in your gloomy hospital room!), and my mom came out and told me that if she could do this for me that she would. That's when me and her got really close on the subject and just cried in the courtyard together. Just make sure that your little girl is prepared for it, and you too. Research everything and be prepared! Hope that this helps you! Merry X-mas! If you would like to talk you can email me at hard_roc_child08@hotmail.com

Good Luck! Ross

[phaden]

Thanks so much for that Ross (matt). We parents can agitate at length about all this, but it's only you guys who have actually been through it who know what it really feels like.

Understanding how you felt helps me to understand what Caitlin is thinking. One of the things that has been puzzling us is how rarely she mentions it. We aren't sure if she's not concerned, or if it's just too hard to talk about, or what. It's really interesting to hear that for you it was always on your mind. Maybe it is the same for her.

Since you had your surgery in September, you are presumably pretty well into recovery by now. Are things going well for you?

Cheers -

Patricia
New Zealand

[matt]

Merry Christmas Patricia. How old is Cailtin? Is she a teen or a young child? My recovery was very very good. The doctors and nurses were amazed at my recovery. A Scoliosis surgery patient is supposed to sit up on the 3rd day and start to walk on the fifth day. I was sitting up and walking on the third day. I got up from bed immediately after the nurses came in and removed the catheter and I told the nurse that I needed to use the bathroom. So she helped me get my legs out of bed and I stood up and walked to the bathroom (with the aid of my mom and the CNA) and used the restroom standing up by myself. I was very proud of myself. But I was in horrible pain after I got back in bed. You get so tired so easily. I would love to be able to talk with you and Caitlin via email. On my last post it showed my email addy. I wish that you would email me. And anyone else who reads this, if you ever want to email me, feel free! I hope that you have a safe and Merry Christmas! Ross (Ross was taken as a name so I used my first name, Matt as my username, if you were wondering)

[jc3]

pat
my daughter just had surgery nov 3rd and is having a great recovery. It is amazing how well she is doing. My daughter would not talk about it at all either before her surgery, but now after the surgery she told us how nervous she was and could not stop thinking about it. She said it was always on her mind, but still would not talk about it with us. She is so relieved that it is over as we are too. The anticipation before the surgery i think was worse than the actual surgery. I would try and talk to her about it and feel her out to see if she wants to talk and be there for her. It's tough for these kids to have to go through this.
good luck
jennifer

[donkeelover]

Hi!
My name is Carole, I'm 14, and I'm getting surgery this coming summer. Ever since I was diagnosed with scoliosis at age 11, I knew it would come to surgery. I guess I'm kind of pessimistic, but I knew. So when they announced that I needed a brace, I wasn't at all surprised, but I wondered what help it was going to be, because I'd just be getting surgery anyway. I've had a very positive attitude about my brace for the 2 and a half years I've had it, and I've worn it diligently. However, in September, I was told that I would be having surgery. I'll be getting it in the summer.

So, basically, I've lived with the knowledge for about three years, but only solidly for a few months. It's really easy to get on this whole "impending doom" trip, but that's not good. I had that attitude for quite a while, but then I realized that the surgery didn't have to be a bad thing. So, I've recruited a whole group of friends to come wait on me when I come home, and I make comments like "now I'll get to set off the metal detector at the airport for the rest of my life!". I don't think of my surgery as a negative thing anymore, it's just a fact of life. I think that attitude will help me get through the months to come.

[jc3]

hi carole
my daughter is 14 and just had surgery 9 weeks ago. She has always had a negative attitude about having scoliosis and was supposed to wear a brace and hardly wore it and therefore kind of knew all along that she would probably end up needing surgery. Up until her surgery she had a negative attitude about the surgery, but now that the surgery is over she is so much happier and is glad that she never has to worry about scoliosis and her brace again. So having surgery can be positive. You will do just fine.
good luck
jennifer