Surgery is coming SOON and I am scared!!

[iluvnickjonas94]

I am 13 years old. My surgery is coming, August 14th. I am scared I dont know what to expect. I cry when I think about it, and I am having terrible nightmares, almost everynight. My friends and family are feeling nervous too, could someone please tell me what to expect, or share their story? Thanks so much.
-Nikki

[Susie*Bee]

Nikki-- I'm hoping you'll get some good responses from kids about your age who have gone through surgery-- or from some of their moms. It's very normal to be anxious and scared of something big and new-- which this surgery is. You've only got a couple weeks to go or I'd suggest some books that are good. Just remember that there are tons of people on the forum who have gone through this surgery, so you can do it too! And very soon you'll be straighter and taller and this will be behind you. I'll try to do a search--or you can-- and read some accounts people wrote. I know it's a little different for someone your age (easier!--but that doesn't mean easy!) than for someone even a little older, but if my memory serves me ok, vndy wrote an account of her surgery last December, in the adult section. She is in her twenties. I am sure there are many in the adolescent section.

I'm going to go ahead and add your name to the thread of upcoming surgeries wev'e got going in the adult section-- you can find it at this link: http://www.scoliosis.org/forum/showthread.php?t=7443 If you want more info put in, just let me know what... and if you want help adding it to the official surgery calendar, I'll be glad to help with that. Big hugs, Susie

[Pooka1]

Hi Nikki,

Everyone's surgery experience is a bit different and protocols differ with each surgeon but there are some common themes I've noticed with reading the testimonials and helping my daughter through it.

You will be admitted a few hours before surgery and prepped. They will attach electrodes to your head in various places with a special type of glue that can be removed with washing. These will monitor your nerve impulses so that the surgeon can avoid nerve injury when operating. These electrodes have brought the incidence of nerve injury down to very small numbers, making this surgery very safe.

You will be taken into the operating room and put to sleep for about 5 hours. You will wake up in the ICU and they will start giving you pain medicine, most likely a morphine pain control device (PCA). Your parents can visit you in the ICU. You will be there anywhere from a few hours to a few days depending on surgeon protocol and skill of the nursing staff on the regular hospital floor. This is very arbitrary.

The first day will be hard in terms of every movement will hurt. You will get morphine automatically and can top that off yourself if you need more by hitting a button that will give you an extra dose not more than once every eight minutes. You will sleep a lot. You do not have to get up because you will still have the catheter from surgery. You need to do the breathing exercises to recover and avoid post-op complications. These are breathing into a small plastic tube every hour. This first day you will be on you back.

The second day you will likely get up out of bed and sit in a chair and walk a bit around the unit. You may or may not be allowed to eat until your intestines wake up. My daughter was not allowed to eat anything including ice chips until this happened on the third day. This is to avoid bloating, nausea and vomiting which some surgeons view as set-backs. She had diluted juice and a little jello after that but she really didn't eat much in the hospital. You'll have a TV most likely. My daughter watched some TV and listened to her IPOD. Starting this second day they will turn you every few hours from side to back to side around the clock. This is to avoid post-op complications. I have to tell you these turns were very uncomfortable for my daughter and it took a while to get comfortable after each turn.

You'll continue to recover and get a better handle on the meds for the pain and increase your walking. It will still be painful though. My daughter had to climb stairs before they would release her to go home. They will change your wound dressing at some point... the tape on those bandages is heavy duty and my daughter had a hard time with that. Also, they will take a post-op x-ray as some point. They might also remove the PCA on day three and switch you to oral pain meds.

Most kids stay about 5-6 days and then you'll continue your recovery at home. You will need a comfortable bed and chair and be on the oral meds for about 2-3 weeks, tapering off to nothing. The more you walk, the better you will feel but don't overdo it.

There are plenty of surgery stories in this section...just look around. As I said, each surgeon does things differently, in some cases, radically so. You just have to wait and see but it's going to be generally what I wrote.

Good luck!

[iluvnickjonas94]

Wow those were amazing stories. Thanks for everything. I am going to show my mom these when she gets home from work. I really hope things go well, and I can stay strong. I think it is going to be harder for my parents watching me in pain than me actually feeling it. I really do appreciate your stories....

[Qikdraw]

Hi Nikki,

I remember my weeks before my surgeries. It was a stressful time. I told off a few teachers (back then this was a big thing), knocked over a few desks and ran out of the room. It definately is not an easy thing to think about. Y'know what though? I got through it and so will you.

I also had a great mom who helped me through the tough days and nights. She was there for me the entire time. I'm sure your mother will be there for you, just as mine was for me. And yes, it is hard for parents to see their children in pain, but you can be their strength as they are for you through all this.

If you read through this forum there are a lot of great success stories if that helps. Or just keep posting and asking questions and we'll answer the best we can.

Brad

[iluvnickjonas94]

Wow. I dont know how I will be able to balance school and pain, but I am going to try my hardest. I have never done this b4 like I said and I am not exactly eased about it all.

[Pooka1]

Wow. I dont know how I will be able to balance school and pain, but I am going to try my hardest. I have never done this b4 like I said and I am not exactly eased about it all.

You won't be back in school until the pain is under control.

There's no way to concentrate if you are in pain so there is no point in returning until it's under control.

You will likely be able to work at home for short periods of time during the second week.

Scoliosis sites like SRS and Scottish Rite state that most kids are back in school by three weeks but this is highly variable.

It will go quickly. By the second week, my daughter was saying she was glad to have the surgery.

Good luck.

[kimg]

Hi Nikki,

My son is 13 and just had surgery 2 weeks ago. Trust me the worst part for you and your family is the waiting. Try to keep busy for the next few weeks, see your friends and have fun with your family--it will help the time go by quickly. The explanation that Pooka1 gave about the surgery was very accurate.

My son is very relieved now. While he is in pain, it is getting better everyday and the waiting is over.

Good luck--everything will go well and soon you will be on the road to recovery too!!

Kim

[fcefalu]

Stay Strong

Nikki: Let me tell you a little story about my son Christopher who is 16 years old and just had surgery on July 30. I am sitting here looking at him sitting in his bed watching tv. Christopher has special needs, specifically cerebal palsy. He walks with assistance and communicates with a touch talker (sort of like a lap top). We are not really sure what he understands, but I can tell you that he had no idea what was going on. Perhaps that was a good thing since he wasn't worried ahead of time. However, he was surprised when he woke up.

Don't be scared. It is ok to be nervous, that is just human nature. Christopher was in surgery at Childrens hospital of buffalo for almost 10 hours. That number is not really accurate as to what is going on because it takes 2 hours to get all the stuff and you ready. After the surgery, it takes over an hour to take x rays and finish up.

The doctors understand that it is going to hurt, but I can tell you for a fact that my son has cried for a total of about 2 minutes since he had surgery. He was taking morphine for 3 days and no longer needs it. right now he takes lortab for his pain and has been sitting in a chair and doing great.

So, although everyone is different, I am sure you will be fine. As parents we are so happy we did this. His curve in his spine was close to 70 degrees. Now it is so small you can hardly tell.

Sometimes we have to take a step back to take 10 steps forward. Be strong and you will be in good hands.

[Jennybear]

Hey Nikki,

I had the surgery on May 21st and to be honest I don't remember to much pain and I'm not in any now at 2 months post op. I was never in extreme pain but my thing was getting comfortable in chairs and stuff( I dont have that problem anymore) I'm 14 but when I had the surgery I was 13 and I definatly needed my mom. The hardest part of the whole surgery was leaving my dad when I went to the operating room, It took me alot not to burst into tears right there. I didnt really think about my surgery before but when I did I cried.

Best of Luck

[sparklegirl59]

good luck!

hi nikki.
i hope all goes well. good luck! i will be praying for you...
(maybe when the surgery is all over, and you've recovered well, your mom will plan something special for you! maybe a jonas brothers concert...lol)

[txmarinemom]

Nikki ...

I'm not a kid, but I wanted to try to ease some of your worry ...

It's tough to overcome fear of something completely unknown to you, I know, but you're going to be fine, hon. Naturally, you're scared, but you *will* get through it. Very likely, you'll be surprised how soon it's behind you - and fascinated by your new, straighter spine .

Pooka gave a very good general description of how things will go: As she pointed out, surgeons do vary, so don't worry if things proceed a bit differently. For example, if they put electrodes on my head, they did it after I was put to sleep (I didn't have any sticky residue on my head I'd recognize from previous non-scoli surgeries, so my guess is they did not). My surgeon also doesn't do post-op x-rays. Neither of these are big issues, nor do they make him better or worse ... just different.

You'll check in to the hospital and be amazed how quickly all the pre-op stuff goes ... there's so much going on (people asking you questions, doing their best to make you feel at ease), the time literally flies by - and you have few moments to dwell and worry.

Honestly? I was prepared for things to be SO much worse than they actually were. Yes, the first few days will be pretty uncomfortable, but the worst of the pain will be controlled by the PCA pump Pooka described. It has a button you can push that allows you to give yourself a dose of very strong pain medicine. It's designed so you can't give yourself too much, and if you're still in pain they can give you other pain medicines by mouth to help.

The most common feeling afterwards is tired and *stiff* (both get better with time). Believe it or not, the incision on your back isn't likely to hurt at all (that was one of my bigger fears). The catheter and the drain line (it collects excess blood ... they'll come in to empty the container periodically - and you'll notice by the 2nd day the fluid more resembles red tinged water) don't hurt, even though it seems they would. I just found them both uncomfortable (and mainly only when laying in certain positions), and they're a bit of a hassle to lug around for walks, but that's about it.

It doesn't hurt when they remove them, really, either ... they do it so quickly, you don't even have time to say "Ouch!". And then you're free .

You probably won't feel it immediately (like the day of surgery - or even the day after), but your ribs/hips may feel sore in a bruised kind of way after the surgery. You may feel off-balance (I really couldn't walk a straight line for a few weeks). Both are caused by your new posture, and it's only temporary: Once your body loosens up - and your mind gets used to your new body - it will get better on its own.

Don't be alarmed if a shoulder that was dropped before surgery is higher afterwards. That too will resolve as the muscles that have been short stretch out. Be sure to pass that one on to your Mom, because I'm sure she'll be looking .

When they say you can have food, you may not feel like eating much ... or at all. This doesn't happen to everyone, though: I was starving from the moment I woke up after surgery, and ate EVERYTHING they brought ... and then some - lol.

Finally (and I may think of more later ... just trying to cover the stuff most surgeons don't tell you), they'll likely use dissolvable stitches on you. It's not at all unusual for a piece of them to come out of the skin (it is not painful, I promise!). It will look like a piece of fishing line, and it's safe for your Mom to trim it with a pair of clean scissors.

Again, I know you're going to do fine ... it's a bit challenging the first week or two, but try to focus on the excitement of your new body! I just had surgery 6 months ago, and I can sincerely say I've never regretted it for a moment.

Listen to your surgeon, and just as importantly, listen to your body. Walk as much as you can when you're up to it, but if your body tells you it needs rest, rest. It will talk to you in ways you never thought possible, and remind you who's in charge if you overdo .

Best wishes to you.

Regards,
Pam

[Pooka1]

I was just trying to think of all the arbitrary stuff that surgeons differ on...

1. time spent in the ICU
2. after x-ray while in the hospital
3. when eating/drinking is allowed
4. requirement for a BM prior to leaving the hospital
5. days spent in the hospital
6. how much walking done on which post-op day
7. having a drain at the wound site
8. having an epidural
9. when bathing is allowed
10. others?

As far as I can tell, there is a range of "correct" answers on these issues so they are completely arbitrary depending on surgeon preference.

[tillgurl]

I a bit older than you...almost 18...but I totally know what you're going through.
I had my surgery June 26th, almost 7 weeks ago.
I had it about one-two weeks after my final exams for highschool, as if I wasn't stressed out enough already!

I'm not gonna lie, the surgery was probably the hardest thing I've ever done and the recovery was NOT fun. For most of July, I really didn't do much, just relaxed around the house and watched movies, TV, slept.

My friends and family were soooo great to me during my recovery. I'm pretty independent and I hated having people do/get things for me. But now, I don't need them really at all.

The first week or so is actually horrible, but you will notice that you made STRIDES in your progress weekly.

It's also really hard to walk for a while at first, without feeling like you'll pass out from exhaustion. But I just walked a little bit longer outside each day...and listened to my ipod to distract me from thinking about how tired I was. Haha my ipod was a life saver!

Anyways, I'm doing GREAT now, and am sooooo glad I did the surgery.

It was the hardest thing I've done, but also one of the best decisions I've ever made!

Feel free to send me a Private Message if you have any more questions...since I've had it so recently I'm sure I can answer all your questions!