nicole's 8 month check up!

[jc3]

hi lori
i understand totally about her having a meltdown. My nicole did not want to have the surgery, she saw nothing wrong with herself, but we knew she had to have it. The months leading up to the surgery we had a really tough time with her. She practically wouldn't even talk to us. The night before her surgery she had a complete meltdown. She was hysterical. The morning of the surgery she wouldn't get out of her bed. We practically had to carry her out of her bed and once we pulled up at the hospital that was another problem getting her out of the car. But we definitely bonded again after her surgery; she really needed me afterwards. I'm sure tonight will be hard for your daughter being the night before her surgery, but you can't blame her. It's a scary thing.
good luck and you know your daughter is in wonderful hands with dr. boachie.
Jennifer

[jc3]

hi theresa
7 months post op like marylou said those are about the only rides will be able to ride. He didn't say to us this visit when she would be able to go on a rollercoaster, but i know lindy sent me a list of restrictions and i forget if rollercoasters were at one year or two and of course i can't find that list. I think it said amusements at one year and rollercoasters two years.
jennifer

[mamakay]

Hi Jennifer,
I am checking in on everyone here and glad to see you are still here too.
I am so glad for nichole. Did her Dr say how far she was fused?
Did I mention Steph's Dr said she was fused pretty much at the bottom and looked like it was "starting" to fuse at the top! That was so great to hear!
I could not read the xray that way and thought it was almost impossible to see fusion on an xray but he 's the Dr and I believe him.
So it sounds like they are about the same and restictions are similar.
Ste wants to be pulled behind the boat but Dr said wait till at least the 8th month. Which is now and I have put off calling him about it. It takes alot of shoulder pulling to get up and she still has pain up there off and on.
I think some of it is the shoulder muscles.
We go back Nov 3rd!!(Can't forget that day can we!!!)
Are you all going to mark that day in any way?
Ste is pushing me for a puppy as her "celebration".
How does Nichole feel about her surgery now?
I am glad Nichole got to go to Disnyland. They so deserve to get back to being a kid again
Stay in touch.....Kay

[jc3]

hi kay
Yes i am still here! I can't seem to stay away from this board. Nicole thinks i'm nuts that i still go on here, but there isn't a day that goes by that i don't think of her surgery. I am always worried about her still and i don't think that will ever go away.
At nicole's last check up the dr. did say that her fusion looked really good and he said that now it will just get stronger. Who knows they say that it really cannot be seen i thought??
Nicole is still in disney and i cannot wait for her to get home already. This wednesday she will be home. I am sorry that i let her go. She said she is fine, but i really thought 2 weeks there would be too much and it is. She said her back is fine, but she is done being there too. There are alot of rides in univeral and they seem to have been there for days.
Nicole hasn't had any complaints (knock wood) but i just hope that continues. I read too many stories that all of a sudden pain appears down the road.
So there will always be worry.
Glad to hear step is doing well also.
I don't know what nov. 3rd will be like. It will be a good day though and i can't believe how fast it has went. I remember it like yesterday us being on here so worried about them having the surgery.
stay in touch
Jennifer

[mamakay]

Jennifer(and others!),
Thanks for your update to me.
I am so glad you said all those things about reading too much and nic thinking you are crazy for still being on this board also everyday thinking of the surgery.
I thought I was neurotic for doing and feeling the EXACT same way.
Ste did admit to me she thinks of her surgery everyday too.
This is the first month I can talk about it to others with out crying.
I guess we are not so crazy huh!
Till later!! Kay..

[lhaag]

Associated complications post surgery and beyond

Hi Kay and Jennifer,

My name is Lisa and my 14 year old daughter had her first appointment with Shriners last Monday. She has a 70-75 degree kyphotic curvature and they are recommending surgical correction via anterior and posterior fusion. Of course since then I have been doing nothing but research on pros, cons, risks, etc. I have not found a lot of detail on associated complications down the road. If you are comfortable sharing, I would love to hear what you have found or been told as you both expressed concern regarding future complications associated with the surgery.

We do not go back to meet with the surgeon on 9/23 for the final analysis and to hear about treatment options. I to be able to go with as much knowledge and as many questions as possible as I do not think we will see him again until the day before the surgery.

[susannajon]

Hi Jennifer & Kay,

It was good seeing both of your messages. While I don't log on every day anymore, I still find myself coming back from time to time to see how everyone is doing. I feel like I have to "pay it forward" for all the moms who helped me make it through the research, my daughter's surgery, and the recovery. My daughter continues to recover well. She went to a 3-day Anime convention this weekend with her friends, 12 hours a day on her feet, and she was fine. No pain and she's still up right now, chatting online with her buds.

Hi lhaag,

Which Shriners are you going to? There are lots of mom's on this board who's kids were treated at various Shriners hospitals. As far as complications, any major surgery is risky. I will give you a link to a good article to read:

http://www.spine-health.com/topics/c...oliosis04.html

You will want to ask your surgeon lots of questions. If you want the list of questions I put together, just send me your email address by PM, and I'll send it along.

Good luck!

[jc3]

susanna
that is awesome that she was able to do all that already and be on her feet for that many hours without any pain!!! Awesome. I'm glad to hear everything is going well.
Jennifer
Kay
you're definitely not neurotic for still being here. We've been through alot!!
stay in touch
jennifer

[jc3]

hi ihaag
My daughter is 15 and is now almost 9 months post op and is doing great. She did not have any complications from her surgery nor did most of the people on here whose children just recently had surgery, but i do every now and then peek on the revision board and that is where all the people are that have complications. I know i shouldn't read it, but i do every now and then. I just worry that my daughter will not have any problems later on in life.
Good luck i know it is a very stressful time before the surgery, but post op is definitely easier.
Good luck and if you have any questions feel free to ask away, that's what we're here for!!
Jennifer

[Alison]

I'm a bit further on (6 years post op in Nov) and I think as for complications down the road.....I'll worry about them when and if they happen....I've got my life to go out and live first. I've got a lot of stuff to fit in and a lot of stuff to experience.

I also think.....what would my back have been like now without the surgery

Alison

[mamakay]

Hi susannajon,
It's great to keep in touch with you too.
I'm like you about checking in here every once in a while as I also feel a need to be here for other moms like there were for me.
So glad your dtr is doing good.
That's a long time to stand, my steph wouldn't be able to stand that long at a time I don't think. That's great she is so strong.

Hi Ihaag,
I am happy for you that you found this site.
It has been a wonderful support as you will see.
Sounds like susannajon may have you covered on the questions. It was such a whirlewind for us that I didn't research or know enough questions,but I will tell you what I've learned.
1.Get all dental work done before the surgery, this is a concern afterwards bc of the instrumentation that may require antibiotics.
2.Make sure they are not going to do wake up tests and they have a machine that monitors the spinal sensations instead. I know some people think of course they don't do wake up test but I actually talk to someone who had their dtr surgery done where they did the wake up method!!!!
3.Have lots and lots of pillows of different softnesses.
4.Try to have her get in bed on the side w/o the incision. I am referring this to the hip gratf my dtr had. She didnot have an anterior so I am not expert on how to approach that.
5.Keep on schedule with the paiinkillers when you get home bc if you wait too long it's so hard to get controll of the pain. Some people get off them in 2 weeks and some it takes 6 wks.
6.Don't be afraid to ask Dr.for a different prescrip of pain killers bc some are just too strong, we had to change from Vicodin to tylenol3 and valium.
7.At the hospital see if they have a salon service for the patience to have their hair washed and get a Dr note and appt. to do it before you go home.
8. We let steph do all the normal things up to her surgery.
9.Most of all I had to learn this on my own....
Be vigelent in your beliefs or intuitions of taking care of your child.
I had to stand my ground with family and nurses for just a few things. I am normally a shy person.
Also stay with your child every minute you or someone like your family can.
This I feel is very important.
I think you will be in very good hands and this surgery has come a long way it seems.
My dtr's thoratic curve was discovered at 47degrees in (June)and we research 3 Dr's.
The first said we could wait a year but by (Sept) 3-4 mo it had gone to 52 then by surgery(Nov) it was at 65.(in 5 months)
She is fused from T4 to L2.Also has a hip graft.
Take care of yourself and know we will all be here for you and praying too.
Kay

[Mary Lou]

Jennifer,

Okay, correct me if I'm wrong, but isn't Nicole almost 10 months post-op? Jamie will be 9 months post-op on the 7th of Sept. and I thought you guys were a month ahead of us. If my memory is correct, GOOD FOR YOU! It shows that you aren't constantly worrying anymore and have moved on with your life even if it doesn't feel like it!

Ihaag,

Sounds like you've done your research. Good for you, because I think the better prepared you are, the better things tend to go--less surprises. I hate to be the bearer of bad news, but you asked about complications after surgery. Our doctor told us that sometimes the back will curve above or below the fusion. Well, Jamie has some increased Kyphosis above her fusion. The Kyphosis is about 24* (in her neck area) I think, I'll look it up later to be certain, but it is enough for the doctor to be concerned about. I know he wasn't happy about it happening and it really does sound like it is rare, but yet it is always a concern. I'm not trying to worry you, but just wanted to make sure you are aware of everything so you can ask the appropriate questions when you next meet with your doctor.

Mary Lou

[jc3]

Marylou
You are right Nicole will be 10 months!! LOL. Thanks for that correction on that. Wow, i just can't believe it.
Nicole is still in disney coming home the day after tomorrow! She is so ready to come home and we can't wait either. They spent alot more time at the parks then i thought they would and would have wanted her to. She said her back is not bothering her. I hope she is telling the truth. Some days they were there for 12 hour days.
Jennifer

[jc3]

Alison
You are absolutely right that i shouldn't dwell on the things that could go wrong down the road. I do keep my thoughts on that to myself and would never let my daughter know that i worry so much about that.
Thanks
Jennifer

[Mary Lou]

Jennifer,

I'm glad you didn't take my correction the wrong way. How time flies except when your daughter is in Florida! lol I bet you can't wait for her to get home. I know when we've gone to Disney, by day 10 I'm ready to come home, so I'm sure everyone is ready to come home.

I'm glad that you don't let your daughter know of all of your fears/concerns for the future. As a Mom, I find myself worrying more about Jamie than her sister. I know she isn't that fragile, but I don't want her to do anything that might end with her back in the O.R. for more surgery.

Mary Lou