View Full Version : first surgery and scoliosis getting painful and making me scared

01-13-2010, 02:23 PM
Hi Im Syd
Im 13 and I have been through alot and i was born with a 59 degree curve and now it has increased by 30 degrees so its 89 degrees nd it will make me take a life risk because i just found out that I have a little worst than scoliosis and its called klipple fiel syndrome my surgen dr.nested,an all childrens hospital docter,is making me take all these cat scans and mri's and xrays sleeping tests because I am getting preped for surgery :( and i need some help how to keep my stress down and how to not think of the pain with myself and also the depression of my familys worrys:( I would really apprieciate someones help because I really need it before I get my back fused. Also I have questions for who had had experience or ideas what to do :o How will I feel after sergery ??? and will I be able to walk and move my arms? and the most important what kind of cast will it be?? and also how long does it take to heal??? Well those are most of my worries and I hope I can get some help :) Thank you for your time ! PLEASE REPLY I NEED THE ADDVISE

I will update you guys on my docters appointment and tell you what happens and see what he will say about my cat scan and I hopr its something good too!!! (praying to god!)

01-13-2010, 02:47 PM
Syd, my heart goes out to you. This surgery is difficult to face at any age, but at 13, I can't imagine the turmoil you are going through. You are a good person to be aware and caring of the worry this is causing your family. It's perfectly natural to be worried and scared. We all were/are.

However! The good news is, that the doctors are minimalising all the risks by doing all these tests so that you will know that on the day of surgery, they will be very well prepared and very knowledgeable about your case. Sounds like you're getting the very best of care. I think you're going to be very happily surprised at the great result you get.

When is your surgery?

There is a kids' forum somewhere and I am sure some other teens will stop by to talk to you and direct you to the site.

Good luck Syd. You are not alone.

01-13-2010, 02:56 PM
Hey jennifer ,
Thank you soo much you could not believe how much i have been going through but thank you lotts for support ! Also my surgery is march 24 and it is coming soon just a couple weeks :( But i am appriate all the care i am recieving because i heard alot of good things about this hospital i am visiting ! Have you ever heard of klipple fiel sydrome ? its just like scoliosis but worst?

thank you from,

01-13-2010, 03:05 PM
hey jennifer ,

I have forgotten to ask you something would know if the brace really works?Again thank you for your help:)

01-13-2010, 04:19 PM
Hi Syd

I'm really sorry to hear about your pain. I'm afraid you're way past the point of bracing, usually bracing is only prescribed for curves under 40 deg. The good news is that if you have surgery, it should relieve most of your pain since you're so young. You can see my daughter's pre and post op pictures in the link in my sig. She was 15 at the time of surgery.

There is a support forum just for teens and kids, it's called Spinekids. Last time I checked, it was very active and you'll be able to connect with a lot of kids your age.

Also, google Klippel Fells syndrome if you would like to find out more about your condition. I personally don't know anything about it.

Good luck with your surgery. :)

01-13-2010, 04:23 PM
Hi sherie,

Thank you for the advise ! Also what surgery did your daughter have? And what kind of cast did she have?

01-13-2010, 04:27 PM
My mother says thank you for the support and the pictures we are having a rough time tring to find out about the sergery . The pictures really helped thank you!!

01-13-2010, 04:54 PM
I'm very glad to help, there was no one in "real" life that we could talk to because this surgery is not so common. I found a lot of support on this forum.

Sheena had a posterior spinal fusion, this is typical for teenagers but you would have to check with your surgeon. Your curves are pretty high so it's possible you will have additional procedures.

She did not require a cast, in fact, most people do not get casted nowdays. Sometimes braces are prescribed after surgery but they're usually not necessary because the hardware is so stable nowdays. But again, you would want to check with your doctor, maybe he's doing something different for you. Has he told you you'll need a cast?

01-13-2010, 05:00 PM
In the past they did when I was little but tomarrow im going to my surgen and he will be talking to me about my recent cat scan and I will be putting a thread out to tell how it went though .But I am deffently getting the fusion and said he had seen worse so that me feel a little better because he fixed them . thank you again for the support!


01-13-2010, 05:01 PM
Hey Syd,
Welcome to the forum. Sorry to red about the rough time you are having. Sounds like you are receiving good care though. Its natural for people and their families to worry. My advice would be to take one day at a time, take care of your pain and think positive thoughts. All the tests they are running for you now, will help you and the doctors achieve a smooth surgery. I have a couple of questions - is your curve thoracic or lumbar? Has your doctor said how long your fusion would be?

01-13-2010, 05:11 PM

Thank you for the help ! and mine is both and its servical too (in my neck). but mine is mostly thoracic mostly but mine is very bad i have the worst kind of scoliosis its called (klipple fiel syndrome) and tomarrow my surgen will be telling me how long the fusion is going to be . Also i will be making a new thread to up date you and tell you what will happen :) hopefully something good!

Thank you for your support,

01-13-2010, 05:26 PM
Good Luck with everything tomorrow. Let us know how you get on. :)

01-13-2010, 05:29 PM
okay I will thank you for your time:)

01-13-2010, 07:41 PM
Hi Syd,

I would suggest you check out www.spinekids.com

It's a kid friendly site for kids with questions about scoliosis. My son has read the whole site to answer his questions about his surgery this coming June. My son also has a nerve and muscle disease too that makes stuff hard too....lots of CAT scans and MRI's so he knows how tiring those tests are.

John is a sports nut. What's your favorite sport? Who's your favorite team? Right now, John's into basketball and watching Univeristy of Michigan or Michigan State University. He also is looking forward to the start of baseball season....then he's a Detroit Tiger fan. We are glad that football for the Detroit Lion's is over since their season was bad.

Don't forget to check out www.spinekids.com I guarantee you'll like it.

01-13-2010, 10:02 PM
Thank you for giving me that idea to check out that site i appreciate it alot !:) And also ya I have a hard time trust me. tomarrow im going back to the docter and usally there is not great news to hear :( but I believe there will be another miricle to happen because I know once it happened and that was because my docter thought I would be in a wheel chair all my life but guess what im not I am such a sports fan too haha I love basketball , football, and valleyball that is all I do is watch sports all day on the couch with friends :))) My favorite team is for football would be the giants and the colts . They are awsome ! Also ya I have to have alott of xrays ha but I dont try to think of negative thoughts by thinking of things I enjoy doing like hanginig out with my friends and fishing . Do you like to fish ? I love to fish that is like my life insted of xrays and cat scans :o Do you like the colts ?

01-13-2010, 10:07 PM
May I remind folks that this IS a kid's forum, and is meant for kids to talk to kids. The Parent's forum can be found here:


01-13-2010, 10:17 PM
hi ,
this forum is for kids? or parents? im sorry I do not not understand?

01-13-2010, 10:21 PM
hi ,
this forum is for kids? or parents? im sorry I do not not understand?

Sorry Syd, didn't mean to confuse you. This IS a kids' forum.

01-13-2010, 10:23 PM
ohh okay thank you for your time have a nice day!:)

01-17-2010, 12:18 PM
Thank you for all the help guys!

03-30-2010, 12:34 PM
Hello Syd, I was wondering how you are doing after surgery?
My son is 11 yrs with a curve over 96 degrees - surgery this spring - sometime soon I hope... he is special needs (he has SMS - Smith Magenis Syndrome) & doesn't ask questions like you were able to so I thank you :) for bringing your concerns forward so I have an idea of how things are & what kids your age would ask.
I truely hope you are doing well in your recovery --- Ben's mom Nancy

04-07-2010, 01:49 PM
hey Nancy ,
I am happy you had asked me about the surgery I have not had my surgery yet but soon i will because they have been post poneing my surrgery because of my breathing . I am so very sorry that your son has smith magines syndrome and I hope his segery goes well ! I know quit alot about the surgery if you have any questions please just ask I would be really happy to answer any questions about the surgery . Oh and if I had the surgery I would be drozy feeling because of the pain medicine that my docters will be putting me on they have told me that they will try there best to keep me out of pain and after the surgery to most likely im going to be asleep so will your son . So he wont be in pain he will be sleeping most of the time . Has your son got a cat scan or a mri yet ?


04-08-2010, 11:14 PM
Hello Syd, I am so sorry your lungs are not so strong right now...I hope you breathing becomes strong enough soon so you can feel better!!
Ben has not had a recent MRI or xray, they say everything will be done the Thursday before his surgery ... it looks like they are going to try for a mid May date (May 12 or 19) I hope this goes through as this is extremely hard waiting & he is always getting worse as he grows. I sure hope they have him sleep a lot as he does not understand what we will be doing ... hope he still likes me after this is over LOL - thank you for all the info, you sure are well prepared.
Ya being an SMS kid is not the easiest thing - a lot of behavior & learning difficulties but he is a good kid & very well liked by all ages in his school. I sure hope this surgery helps with his mobility - he is quite curved & has a hard time walking, running & playing.
Again thank you & good luck... Ben's Mom Nancy

04-11-2010, 06:53 PM
Hey Nancy ,
Im so sorry that ben has to deal with all that pain with his curve !!:(
I hope everything goes good for ben's surgery!! I am positive he will love you after becuase he will be out of pain :) I know its really nerve racking to think of all whats happening but the best part is that you dont have to worry about him in pain anymore:) The growing part stinks I have to worry about that as well but I will pray that everything will go amazing after and before the surgery:) Tell me how he is after the surgery I would love to hear how he is doing !! I hope every thing will go great! Have a nice week too:)