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Peggy
03-01-2004, 02:29 PM
Hi everyone. I have been coming to this forum since December and reading all the messages. My 13 yr. old daughter is having surgery in April. Her curves are 60 and 35. This message board has given me hope that things are going to turn out well. Yet I still am so afraid. Just the thought of her having to go thru all this is driving me crazy. I guess I just want to thank everyone for sharing their experiences. I'm so thankful that I can read these stories. They give me hope. My daughter is shy and won't talk about the surgery. I know she is afraid but her way of dealing with it is to push it aside. We go on a pre-op tour pretty soon so that she can see intensive care, the child center, etc. Do you that have been through this think this is a good idea? If any of you went to this, did it help you or scare you more? She begins blood donation next week and I feel that this is all going to start hitting home for her. If you have any ideas that will help ease a 13 year old's mind, I would really appreciate it. Thanks.

racin2win
03-01-2004, 05:16 PM
Hi :)
I just recently had the surgery done back in November, almost 4 months ago now. I know exactly what you're experiencing though, because my mother experienced probably the same amount of mental pain that I did physical pain before and after my surgery. It's such an awful thing to go through, especially for a child, but it can also be a great thing if you look at it in the way that it can be done now, while she's young, and you/her will hopefully never have to worry about her curvature getting worse, or any other severe back pains in the years to come. This experience can help instill in her strength and character, and I know that you will certainly get a valued education from this--myself and my family learned new terms, how the spine/spinal cord work, what all a massive surgery like this entails, etc. But honestly, when it is all done and overwith there will be such a big relief off your chest, (and as someone earlier said on this board) you'll be able to come back and post on this site, comforting other patients and parents, and giving them advice from your personal experiences. Just hang tough, and be tough for your daughter, and tell her to stay as POSITIVE as she can--that is what I had to do--and it will help her maybe pay less attention to the pain, and help her look more into the future, and at what she'll be able to return to in order to regain her normal life again--soon enough after surgery.
P.S.--also regarding the blood donations, that will build character as well if she gets through it successfully, b/c afterwards, she'll always be able to share with her friends (especially "tough boys" in her class) that she's given more blood than they'll probably ever have to give in their life! (This always came in handy for me when we just recently had a Red Cross blood drive at our high school...so many of my friends just kept saying, "I don't know how you gave all those units of my blood...I hated just having my finger pricked when checking for iron!") HANG TOUGH PEGGY!

Peggy
03-02-2004, 12:06 PM
Thanks for your encouragement! We are all trying to stay positive. I know this experience will make her strong to face other hurdles in life. You sound like you have a great attitude. Good Luck with all you face ahead in life. Hopefully it will all be smooth sailing from here.

emery_13
03-02-2004, 09:26 PM
Hi. I'm thirteen and am having surgery on March 25. I'm scared to death and just as you said it didn't really hit me until my pre-op visit. I don't like to talk about it either. At least not with my friends and when I have to refer to it with them I kind of just make up slang for it. I don't like to be babied at all and this is gonna make me have to be babied. I'm a really active person and hate sitting still. I can't say anything to encourage you because, obviously, I haven't been through it yet.

Emery is signing out.

Peggy
03-03-2004, 10:05 AM
Good luck with your surgery Emery. I will be anxious to read your post-op posts. As far as I know my daughter hasn't even told her friends about the surgery yet, so that shows you how she is dealing with this. Hopefully you will find some activities to keep you from getting stir crazy. Fortunately my daughter loves to read and spend time on the internet so she should keep busy with those two things. Know she will get bored too though. Just hang in there, keep the faith, everything will go well and it will soon be over and you will be on the road to recovery.:)

racin2win
03-03-2004, 01:14 PM
I know how those of you feel, that are very active and do not want to go through with this surgery because it will limit so much of your life/activities for some time. I am the same as you, but I've also been through it and learned so much. Don't worry about the "being babied" thing because you deserve to have people care for you and help you around after going through a major, massive surgery such as a spinal fusion. Also, you will find other things to occupy you for the several months that you cannot do much, (contact sports, etc.) I barrel race horses, and I haven't been able to even sit on a horse since Sept. (when I had a spinal cord surgery before my fusion surgery in Nov.) That's crazy for me, because I show horses almost every weekend, all through the year. I've just managed to stay occupied with school, college preparations, and (getting back to SOME dancing at my tap/jazz dancing classes, not much though).
One other thing to tell you all is that it's ok to talk about it, and to tell your friends about it. You will find who your true friends are during this surgery--you'll find the ones who stay with you the most and support you. I got e-mails, phone calls, and visitations from friends/family in the hospital and at home, and believe me, you'll enjoy those things. It's nice to see how many care about you and are concerned for you. When I was home from the hospital, I even had a group of friends come out and give me a surprise visit, which really made me feel good inside b/c I was feeling so sore and lousy anyway. It's healthy and positive to talk about it, because you not only educate others and yourself, but your friends/family will support you and help you keep things in perspective. Good luck to you all who haven't gone through surgery yet--just keep the faith--you have so many people praying for you--more than you think! :) Take care...

dapsbounce8
03-06-2004, 12:31 AM
Hi Peggy,
I had spinal fusion for my scoliosis three weeks ago, so I know exactly how you feel. Its scary, and like others have said, the hospital tour really made the experience seem real.

I'm not going to lie, the first week of recovery is awful. My mom said that when I came out of surgery I looked like a porcelain statue with Angelina Jolie lips. It was uncomfortable, and the morphine made me really irritable. My best suggestion is to get off the morphine as soon as you can - while it handles the pain well, it also makes the patient less alert and very "out of it" on a regular basis.

It was frustrating because people kept saying, "You're getting better" but I didn't feel it. It took me about 6 days to feel semi-normal again. I also had a lot of digestive issues that I've heard are fairly common. My whole system still hasn't returned to normal.

I don't mean to scare you, but I think its important to know what its like. The good news is that I'm feeling great now! I love my new shape and height and life is slowly returning to normal. I'm returning to school on monday and going out to visit my horseback riding center tomorrow. This is not a fun experience, but it is the best choice in the long run. Good luck!

Peggy
03-08-2004, 01:16 PM
Thanks for all the helpful and positive encouragement. It is really nice to be able to see so many of you getting on with your life so soon after surgery. Did you have a double or single fusion Charlotte? I ask because my daughter's surgeon said that she wouldn't be able to return to school at all this year. Her school year ends 8 weeks after her surgery date. She is having a double fusion. He also said she possibly might need tutoring to start the new school year in the fall. I find this frightening because that would be 4 months after the surgery. I know that she is in for a rough time but I thought except for physical restrictions things would be pretty much back to normal for her by then. She is really shy and only has one close friend so she won't have a bunch of support that way. She does have a lot of supportive family members at least. Good Luck returning to school and visiting your horseback riding center. I'm really happy to hear you are recovering so well. Gives me hope! Thanks

dapsbounce8
03-08-2004, 04:02 PM
I only had a single fusion - luckily my brace was able to control my lower curve. I don't know what your daughter's school is like, but my tutoring during the past three weeks has been really positive. I wouldn't worry about your daughter catching up in school. The teachers are paid to make sure every student learns what they need to learn in order to do well, even if the student can't attend classes, and if the teachers don't do that, its their fault, not yours. The school has a responsibility to every student, so you just need to trust that they will take care of it.

I'm sorry to hear that your daughter will be out for so long. I know that sitting around the house gets old fast, so I would recommend buying lots of craft projects - latch hook, needlepoint, paint/color by numbers, and puzzles. Also, use this experience as an opportunity to open your daughter to new people. I sound just like my mom, but its true. Being out of school and homebound is a great reason to invite someone new over.

By the way, I went back to school today, and though I was really nervous it felt great. It was a testimony to the miracle that this surgery is, that I could have gone through that much and come out like my old self. Good luck with the upcoming surgery - I'll be anxious to hear how everything goes.

Peggy
03-09-2004, 09:55 AM
Thanks Charlotte. I will keep posting after surgery to help out those waiting yet. I'm glad your first day back went well!

Sherri B
03-14-2004, 10:45 AM
Peggy,

My son is 13 and is having surgery in June in St. Louis. Like your daughter, he is also very shy and non-verbal. He has only one good friend who comes over, etc., but most of his classmates have known him since Kindergarten and kind of "watch out" for him. Luckily, he is still in 6th grade, which will enable me to go in to his class before the end of school and explain to them what Brad will be going through over summer. I'm going to invite them to come see him if they want to. They may not, but I thought it couldn't hurt to put out the invitation. Because of my involvement in PTA, I know many of the families will be supporting us in various ways. Our church will also provide support and visits to Brad.

So, if you have any of these type of groups you're involved in (PTA, church, sports groups, dance groups or anything she is involved in), let them know about your daughter's surgery and invite them to come see her. Even though she is shy, maybe some visitation will help distract her from any discomfort she is in. At least she'll focus on the social interaction of the visit. I think it'll help her feel good about herself, knowing that people cared enough to come see her. We're never really sure what's going on in the minds of our 13 year olds, but shy or not, attention from others has to be a mental boost for them.

Like you, I have many questions. The surgical nurse I've been talking to gave me the name of a mom who doesn't mind talking with other parents about the surgery experience. I plan to give her a call soon. They also recommended we visit www.iscoliosis.org. We've found lots of good info there and I've personally enjoyed reading and watching the videos in the Patient Stories section. It's giving me a better idea of what to expect.

Feel free to email me personally at any time - I'd love to correspond with you as you go through the surgery process with your daughter. I'll also keep her in my prayers for a successful surgery and quick recovery.

Email me anytime at the3bryants@everestkc.net

Kindest regards,
Sherri

Sherri B
03-14-2004, 10:50 AM
Peggy,

I gave you the wrong website. Our surgeon recommended www.iscoliosis.com (not .org).

Sherri

Peggy
03-16-2004, 10:03 AM
Thanks Sherrie for the web address. Good Luck with your son's surgery in June. I will keep posting on this board and definitely post how my daughter's surgery and recovery progresses. It helps alot to read how others are getting through all this. We have a lot of supportive family so at least my daughter will have that. I guess I just am nervous about everything. I think just get us through the surgery and bring her home safely and the rest we can handle...and then I think about months of recovery and how hard it will be on her and I get crazy about that. These kids on this site seem remarkable to me how fast they seem to bounce back though. Most everyone seems to have such great attitudes! I will keep your email address handy, thank you.

paulasue2
03-16-2004, 04:28 PM
Hi, Peggy,

My 16 year old daughter is having double fusion on March 18th. We took the tour of the hospital last night. She was very reluctant to do it initially, having a "don't want to talk about it" attitude. I made the appointment anyway but told her we certainly didn't have to go if she didn't want to. She eventually decided to go, and told me on the way home afterward that she was very glad that we had gone. She will be in a pediatric wing of the hospital, and the people and environment there are really wonderful - much different from an adult situation. We actually walked the exact route she will take on the day of her surgery, including donning hospital "duds" and going into the operating room. Nothing was held back in terms of explaining where and what, but they took care not to go into any detail that would only serve to frighten. Yes, it did make it seem real; but it also took a little terror out of the unknown. Our doctor anticipates she will be out of school three to four weeks, but, of course, there is no way to know in advance how fast her recovery will go.

Peggy
03-18-2004, 12:01 PM
Thank you PaulaSue. Your daughter sounds a lot like mine. I know she would rather not do the tour but I really think it will help to ease some of the fear afterwards. I see that todays is your daughter's surgery. I will keep her and your family in my prayers. Please post when you feel up to it and let us know how everything went.

ritaeliza
03-21-2004, 03:56 PM
Hi, I am another very worried mom who is facing the possibility of my 15 year old daughter having surgery for a 49 degree curvature. My daughter survived open heart surgery and kidney surgery as an infant and the possibility of her having to have this surgery is really freaking me (and her) out. I can't seem to calm down and not be frightened about this. This is the first time I have been on this site and reading the other mom e-mails brings tears to my eyes. It is really helpful to read about other moms going through this same thing. The e-mails from the kids are extremely hopeful. This is the closest I have gotten to dealing witht he possibility that surgery may be a reality this summer. I have mostly been in denial and desperately looking for non-surgical alternatives. Any info or support would be greatly appreciated. My e-mail address is ritaeliza@aol.com. I will check back to this website for more information each week. I'm glad you are all there. Thanks for listening. Elizabeth

racin2win
03-22-2004, 01:18 PM
Ritaeliza,
I understand where you're coming from. My mom was of course a nervous wreck when I went through my surgeries (I had a tethered cord surgery in Sept., and spinal fusion in Nov.) and it's normal for family to worry about their loved ones.
First of all, I want to tell you you're obviously a very strong individual to begin w/, your daughter having gone through open heart surgery, kidney surgery, etc. already. Just trust and know that this spinal fusion will help decrease her curves, improve her posture, and w/having the surgery conducted now while she's still young, if it goes well, she won't have to worry about it hopefully when she's older. If all goes well, it truly is a life-changing experience, but you can make it a positive one :)

Peggy
03-23-2004, 08:09 AM
Hi Ritaeliz,
I know just how you are feeling along with all the other moms awaiting surgery. Its like a nightmare that won't go away. I try to be logical and positive but the emotions just take over sometimes. It does help to come here and read the messages from the kids that have come thru the surgery and are on the road to recovery. My daughter doesn't like to talk about it so I am afraid that when it comes it will be so overwhelming for her. All we moms can do is keep a positive mindset in front of our kids, reinforce that they are going to be ok and help them get through this any way we can. Hang in there. I wish I had some magic words. Pray, pray, pray is as close as I can get. I will keep posting after the surgery in April and I hope that helps other moms out there.

Bleach Girl
03-28-2004, 11:37 PM
I know it is frightening. There's not much I can add, except to repeat what other people have said. Best of luck to anyone who is having surgery or in recovery. Btw, I'm shy too, so I can relate to how that feels.

When I was 13 I had surgery (52 deg. curve) , that was April 16, 1998. This coming Thurs. is my 19th (!!) birthday. It is almost 6 years since my spinal fusion. I felt the same as anyone else in the situation, frustrated, in denial and afraid. But all these years later I am OK and people who see me, who don't know about my back until after I or my mom tells them, say they wouldn't have guessed I've ever had a back problem. They say I look normal.

Don't worry about your daughter (or anyone facing an op) not being able to do activities. Of course for a certain time she won't be able to do them but it's not forever. She WILL be able to do things in the long run.
While initially surgery patients have to take it easy, they do go back to normal. For me it took about 2-3 months to start doing certain things again, but maybe that's because I was more cautious. Others might start doing things sooner.

In 2000 I even learned figure skating and now do it regularly, only problem being my back is less flexible but that doesn't matter much. People say I have good balance and posture. A few months ago I started doing some ballet.

I only wish 6 years ago there had been a message board like this to talk to people, but my family didn't have Internet access then even if a scoliosis board had existed.

Andrea

Peggy
03-29-2004, 02:29 PM
Thanks Bleachgirl. I'm so glad to hear you are figure skating and living a normal life. Congratulations on your recovery. I am so proud of all you scoliosis survivors and so thankful for you. It gives me hope for my daughter. God bless you.

KELLIE ROSE
03-29-2004, 07:59 PM
Hey Peggy,

I was 13 when i had my fusion for a 86% curve... That was 13 years ago this April... I was sooo scared and it was not easy for me. I was a tall girl to begin with and of couese grew 2 inches after surgery... so bending is hard for me to this day, BUT not impossible. I think the important part foryourm daughter is talkimng, she needs to talk to somebody, if not you a friend. It is very important. She needs to understand what is going on and what is going to happen in the future. 13 years there was not websites or boards like this, and this helps, i wish i had it... i am learning more about my situation now than ever before, but i think by not talkimng about it when i was young and holding things in, it is messing with my head now... Please try to get her to open up to you... or if she needs someone to talk to, i'd be more than happy to mentor... you can email me togagirl@comcast.net

Good Luck to you and her!! It really is for the best! What area are you in??

Peggy
03-30-2004, 07:40 AM
Thanks Kellie,
I really wish I could get her to talk to others. This site has helped me trememdously. I printed out some scoliosis stories and other information about what to expect before, during and after surgery and I am going to have her read all that and talk it over with her before we go on the hospital tour. She doesn"t have any close friends which makes it hard. She is just a very private, shy person. Thanks for the offer and if I will keep working on her to come here. Glad this site has helped you. I wish you had had it at the time of your surgery too.

Mary Lou
03-30-2004, 09:51 AM
Hi Peggy.

Try not to feel too bad if your daughter doesn't want to use this forum. My 12 1/2 year old daughter won't use it either, but like you, I get a lot of support and answers from this forum. I make it a point to make my daughter talk to me if no one else to keep her up-to-date with what's going with her and also how she is feeling inside. Would your daughter consider keeping a journal? I personally keep a journal and it helps to get my feelings out sometimes.

Good luck,
Mary Lou

Peggy
03-31-2004, 08:36 AM
Thanks Mary Lou. I will suggest the journal idea to her. And I think she is warming up to the idea of at least posting on this board post surgery so that she can share her experience. I told her not only would it help her, more importantly it would help those kids awaiting surgery who are nervous and scared like she is now.

duke4303
04-17-2004, 01:46 PM
I was fused twice at thirteen y.o. since 1960 13 vert. in all and I've been there, done that , and seen that. I was fused in Ann Arbor, Mi. by the head of the osteo dept. Dr. Badgley(now deceased) I also was scared and called home saying I didn't want to stay. Instead of putting me in the kids ward they put me in the adult floor where everyone was having stomach surgery's. Talk about being scared that was me. the first one was 7 vert. ansd the last was 6vert. I had no pain on the first one but the second one I did feel a lot of pain. I could hardly eat and then the pain meds started once that was done i felt like my old self. In my day they used bone from the bone bank. But I was one of the unfortunate ones. I developed and Infection that sometimes get started.I carry that with me the rest of my life. I just have to be careful the rest of my life. I will say one thing around the incision you will not feel pain at all. I've had a needle in my back several years ago for an infection nearly 20 years later and didn't even feel it. Trust me when i say this. everyone will do just fine and up in no time. I AM A SURVIVOR OF 40 YEARS PLUS.


































































































































































































































:) :)