MY JOURNEY WITH SCOLIOSIS
Here is my story...
In 2010, I went to my doctors for a bad cold. I was 10 years old. They took an x-ray and found my lungs were clear, but discovered I had scoliosis. :(
That was the start of my journey with scoliosis.
I was referred to a children’s orthopedic specialist, Dr. Hahn, at All Children's Hospital. He was very nice and explained that I had idiopathic scoliosis. He measured it at a 24 degrees thoracic curve. I was sent to West Coast Brace and Limb where they fitted me for a night brace, which I wore each night pretty good. In 2011 my follow up appointment showed a spinal curve progression to 37 degrees. How could this be happening? I felt fine. My mom has scoliosis and hers stopped curving at 39 degrees...so we thought I would be okay too! In 2012 I was re-fitted for another brace as I grew. But after two years of wearing a brace each night I began using it less. I was feeling good so I would forget to put it on or just didn't want to wear it. This year snuck by us without updating my x-rays. In Jan of 2013 we had a scoliosis recheck at Moreno Spine and Scoliosis. He is a great doctor who helped both my parents. Not expecting much change to my scoliosis - because I felt so good - we were shocked when Dr. Moreno put my films up measuring my curve at 56 degrees thoracic and a 46 degree lumbar curve! What?? Dr. Moreno was very nice and explained at this level of curvature that surgery was the only helpful option. I followed up with my Dr. Hahn at All Children's Hospital. Although a bit suprised too, he agreed, with my scoliosis curve over 50 degrees surgery was necessary to keep my spine from getting worse. After several more consultations with Dr. Hahn, and his surgical partner Dr. Neustadt, as well as other doctors for their opinions, we are confident that surgery is the best option for me and will give me a better quality of life. We are happy both super great doctors, Dr. Hahn and Dr. Neustadt, will be doing my spinal surgery together at the All Children's Hospital. I like that hospital too because we hear all good things about it. I know they will give me excellent care during and after my surgery. Keeping positive...
05/26/13 - Woo hoo! Today I finished the details and quietly launched my Kick'n Curves website! I will soon announce my website where I want to connect and empower both boys and girls who live with scoliosis like me. I hope I can reach out to many kids locally and all around the world who don't want to feel alone living with scoliosis and going thru treatment plans. I hope we can share stories, experiences and feelings on my site to help others who feel the same. I look forward to writing more and hearing from YOU in support of Kick'n Curves - A place kids can go and understand. Smiles =)
07/23/13 - As my surgery date approaches today I had my final follow up appointment with Dr. Hahn at Children's Orthopedics. After talking to his assistant about my upcoming surgery and what I need to do in order to get ready for it, Dr. Hahn had some "bending" x-rays taken of my spine. This is where the radiologist pushed a pillow against my side on my lower back. This shows how flexible my bottom curve is and whether the curve is compensitory to my thoracic scoliosis. The x-rays let Dr. Hahn decide whether I needed full spinal fusion or partial. And yeah! Dr. Hahn felt I needed only a partial spinal fusion from T2 - T11. Then Dr. Hahn answered any of my questions and talked to my parents too. Afterwards we went to the All Children's Hospital (where my surgery will be). They took a 3D image (CAT scan) of my scoliosis. This will help the doctors through surgery. I liked how clean and colorful the hospital was. There were fun computer games for me to play while waiting for my x-rays. =)
08/10/13 - Wow time flew by! I have been keeping myself busy and really enjoying summer. We went to Universal Studios a few times this summer because I am not sure how soon I can ride all those rides again. Fun!!! It is hard to believe it is getting so close to my surgery day. I can't believe this is actually going to happen. A part of me is anxious to get this over with and the other part of me is a little scared. I know everything will be okay though. I just wish it was over already!
08/14/13 - Today I went to All Children's Hospital to get ready for my surgery on Friday 08/16. They had to take my blood (and it didn't even hurt)! They also asked me, my mom and dad lots of questions. Then they gave me a wristband that I cannot take off. All my medical information is in the computers now so I am ready for surgery in two days. The hospital also had a lady come talk to me about the surgery and care I will get. She explained everything and what to expect. She was very nice. Afterwards she gave me a tour of the hospital. It is such a nice hospital and my parents get to stay in my room with me the whole time I am in the hospital! =) We were there about 5 hours! Then my parents took me to lunch on the way home. It was a full day.
08/15/13 - Tomorrow is my surgery day! Oooo I am nervous but I know everything will be okay. I was afraid I will wake up during my surgery, but the doctor explained to me that I will be watched and monitored very closely by the anesthesiologist. That is all he will do is watch me. He will never leave my side because his job is to make sure I am sleeping well and I do not wake up during surgery. There will also be about 9 other doctors and nurses taking care of me during surgery. Each one has their own special job to do. They all work together as a team to make sure I am well taken care of and the surgery is a success. I feel good knowing that. And I will get to meet most of them in the morning before I go to sleep. I can ask any questions I want and they will answer them for me. They want me to be happy and feel good. =) I love my doctors and the hospital I will be in (All Children's Hospital, St. Petersburg, FL).
Starting last night (3 days before surgery) I have to shower each night with a special soap and scrub my back really well with it. My mom helped me last night to make sure I cleaned my entire back with the special soap.
Tonight I am having a sleepover with two of my very best friends. We are going to go to Karaoke and will sing "The Best Song Ever" by One Direction! =) LOL I can't wait!
I can't have anything to eat or drink after midnight so my mom said she would take me for ice cream on the way home from Karaoke! We have to get up at 5:30am because we have to be at the hospital by 6:30 am! Surgery is at 8:30. I am not sure I will even sleep, but two of my best friends will be with me. And it is nice to know everyone is keeping me in their prayers too.
08/16/13 - Surgery day - We left for the hospital at 5:30am. It was still dark. My sister and her husband and my two little nephews came by to hug me before we left. My family and friends stayed with me in the hospital and made me laugh up and keep my mind of the surgery until the nurses said it was time to go. Only then I got scared and cried a little. They said most all kids do, and it was okay. The nurses and doctors were nice and tried to make me feel better. I decided to use the mask for anesthesia with bubblegum scent but changed my mind cause I got too nervous. I asked for the i.v. and liked it better. I didn't even get to count down before I fell asleep! =)
My dad set up a blog for my surgery day. So many family wanted to know how I was doing so this blog was great. He sent all the updates in the hospital and my progress now too! Just click on http://allisonsurgery.blogspot.com/2013/08/allisons-surgery.html
08/21/13 - It was time to go home and I was feeling happy the surgery was over! I was worried for so long but it wasn't as bad as I had thought. I had so many visitors and cards and gifts. =) That was the best part! lol ...along with getting taller! Did I mention I am about 2 inches taller now? That is pretty cool!
When my parents packed up our things I got kind of nervous to go home cause I wouldn't have the nurses there if I needed them. I also worried I might hurt my back. But my parents are pretty great. They help me anytime I need it. They make sure I get my medicine on time too. =)
08/28/13 - It has been 12 days since my surgery. Although my back is still achy and stiff feeling and bothers me, (especially when its coming time to take my medicine), I am doing really good. I have been out shopping with my mom at Walmart and craft stores. I went out to eat twice already, I go for walks and I might even go to Karaoke this week if I am feeling stronger. When I go out I just make sure I know where the benches or chairs are in case I want to sit down. I can't overdo it or my back hurts more. And I get tired really easy right now. One of the hardest parts of recovery is also remembering not to bend, twist or lift. I keep forgetting!!
My parents and I believe one of the hardest parts of this journey, since finding out I needed surgery, was the worry and not knowing what to expect. So if you are going through this, we totally understand. For 7 months before my surgery we worried, talked to many different doctors from the best hospitals in our area for their second opinions, talked to chiropractors, families of kids who had spinal fusions and read books on the subject. And even after doing all this we still felt nervous but knew I had to have surgery because my spine continued to slowly curve. The doctors all agreed I would be at 90 degrees before I was 30 if I did not do this now! And having surgery while you are young helps you heal faster. So we knew we were doing the right thing, and now I am glad we did!
If you are going through the same thing I am - or will be - I am here to talk to you if you need me.
I will keep posting updates through my recovery .....so stay tuned! ;)
08/30/13 - 2 weeks since my surgery! That went by fast! Today my surgery bandages came off! Yayy! It took my mom about 20 minutes to take it off cause I was scared it was going to hurt, but she took it off slowly. She peeled it from side to center and side to center. This helped so much. Now that the bandage is off, it feels weird. When I touch around my scar it still feels numb, but that will go away in time. It also looked better than I thought it would. I am not sure what I thought it was going to look like when the bandage came off, but there was no blood or anything. Just a scar line and is healing well. I am proud of my scar, it looks pretty cool and makes me feel special.
I am still tired alot but I feel like my energy is coming back more and more each day and I can do more things. =) My back is still achy and sometimes bothers me more than other times, but I understand it is still healing. When it does ache - finding a comfortable position is challenging but feels good when I rest and my mom and dad stuff pillows everywhere around me. I feel like a marshmallow! lol
09/06/13 - It has been three weeks since I had my surgery. I am doing just about everything I normally did, except for bending, twisting and lifting. I can't do that (or sports) for a while yet. I still need to rest in between doing things during the day because if I do too much my back hurts and the muscles feel really achy. When I take my medicine I feel better. I am not taking the strong medicine anymore because the nurse says I don't need it. But I take Tylenol every 4 - 6 hours to keep my back feeling good.
Yesterday I went to the mall with my sister for about 3 hours. I sat down in between walking around. It was fun to go to the mall again! And today I went to my music lessons for the first time since before surgery. It feels really good to be back in routine with things. =)
Everyone who sees my scar feels bad for me and thinks I am a real trooper. lol But I just feel good knowing I don't have to worry any more about my scoliosis anymore. That was kinda scary for me, just not knowing how bad it might get. I wish I could go back in time to tell myself before surgery how good I would feel afterward with not having to worry about my scoliosis anymore! I would also tell myself not to worry about the surgery too because it was not scary like I imagined! The only thing I wished I had done was get a picture (not the x-rays but a real picture) of me standing showing my back before surgery so I could take the same picture after. That would have been cool to see the difference!
09/15/13 Wow!! It has almost been a month since my surgery! Last week was my follow up appointment with Dr. Hahn (my orthopedic surgeon). He took new x-rays and was very happy to see how well I am recovering. He was pleased with the new x-rays and said the surgery could not have gone better. My scoliosis went from 66 degrees to 11 degrees!! And my lumbar curve is straightening out on its own. It was a compensatory curve that went from 43 degrees to now 28 degrees! This was great news for me! The doctor said I still cannot bend, lift or twist... but in three weeks I will be able to do most everything again like swimming, bike riding and even ice skating too!
Tomorrow is my fist day back to school! Yeaaaa! This is also a new school for me so I am nervous and excited to start back and make new friends. I hope sitting for long hours at a desk won't bother me, but my parents talked to the teachers and they said they will work with me. The doctor also wrote a school note so the school can see what I can and cannot do at school. I still cannot lift over 5 pounds so I am getting a rolling backpack. I cannot go to gym so I will be a standby helper. The doctors note says I can leave 10 minutes early from classes if I want so I can get to my next classes easily. So I think I will be fine.
I am feeling good and off all my medicine except for extra strength Tylenol. I only take it at night to get a good nights sleep, and I probably will take before school just to make sure the day is not too long for my back. Everything is getting back to normal ... and I like that! I can even walk for long distances without getting too tired!
Life is good! LOL =)
09/26/13 My backs been great! On 9/19 I turned 14 years old! I had a great 1D Birthday party and sang at Karaoke with my friends. It was a great weekend! I have been in school for almost two weeks now and I love it! I have made lots of friends. Going to school keeps me busy and helps me forget all about my back pain. It’s really nice being distracted from any pain. When I don’t think about it, it really doesn’t bother me, although I still have to be careful. But anyways I'm doing great and my scar is healing really well. Some days I actually forget I ever had surgery! LOL I will write again and talk to you guys soon. Byee! =)
11/14/13 It's been 4 months now since my surgery and I feel great! I can do almost everything. I have been off all medication for about 6 weeks now because my back doesn't give me any pain. This past weekend we went to Sea Worlds Discovery Cove and I snorkled and swam with the dolphins! I held on to "Rascal's" dorsel fin while he pulled me around. I had to be guarded with my back because the dolphin had a lot of strength and speed when he pulled me! It was a really fun experience!
At school I started participating in gym class now. This week I played basketball and even a little "no tackle" football!! lol I really like being able to participate and have fun with my friends.
I honestly don't feel any different now that all the pain is gone and I am back into the swing of things. The center of my back is still a little numb feeling and I don't like anyone touching my back. Other than that I am very happy I don't have to worry about my scoliosis any more!
We planned a cruise before my surgery...a family trip that I could look forward to after my surgery. =) I am ready now and so excited that my cruise is soon! We are going to celebrate my good health and recovery after a long year of first experiences.
I have one more follow up appointment with my doctor in a few weeks. I am confident it's all good!
I will continue to write in my journal from time to time to keep everyone updated, but I am not sure how often. Now that I am on the mend life keeps me distracted with other things.....and that is a good thing! lol =)
I hope with my journal I am able to connect with a few kids like me that are experiencing some of the same things I did. I also hope anyone reading this understands if you have scoliosis and need to wear a brace...it's important to wear it. Especially if the doctors feel it will make a difference. This is just a small slice of your life and you need to take care of you. You don't want to look back and wish you had. If you have scoliosis and need surgery, you are not alone..don't be afraid. That is why I am sharing my experiences, so you can take a peek into what happened to me, and know in the end it will be okay. It's important to connect with others who share the same physical experiences, and important to have your families and friends support. And when you are alone...just know God is always there watching over you.
You can email me anytime - I would love to talk to you...
HAPPY HOLIDAYS !
12/10/13 Today I had my follow up with Dr. Hahn. He said I look really good and the surgery was a success! He said the results are better than he could have hoped for. My spine looks great and my lower compensetory curve has straightened itself out from 43 degrees to 11 since the surgery!! I can now do just about anything. The incision scar has healed nicely and will fade a little more in time, but not all the way. I still have a numb feeling on the center of my back. I can feel pressure if someone touches me, but I don't have the sensation of hot or cold , sharp or dull. This is normal Dr. Hahn says. And I still have to be a little careful with some things like no "heavy" lifting, contact sports or rough play. My spine is still fusing itself. It usually takes a full year. But....I feel great and I feel like I can do anything...lol ! I am totally in the Christmas spirit this year! School is great and I have great friends who support me. I am happy I am feeling so good!
I HOPE YOU HAVE A VERY MERRY CHRISTMAS!! AND A HAPPY NEW YEAR!!
06/05/14 - I know it has been a long while since I last updated. I have been so busy enjoying my friends, school and the things that make me happy. Today is... The first No school day!! Woo hoo! It's the start of summer!! I like it, I love it, I want more of it!! LOL I am feeling so great this summer! I am physically able to do everything I want to! =-) I penny board alot with my friends now, swim in my pool, play some tag football now and then, and am able keep up with the crowd without my back aching or getting tired. It is such a great feeling! When I look back on how I felt before surgery and how I feel now, it is like a new me! And my scar is hardly even noticeable anymore! It was a long year before my surgery in preparation, and this year was a year in healing and feeling good again. I will keep my updates coming as I enjoy the summer and look forward to being in High School next year. I feel older already! lol
Fast forwarding to 01/30/17 - Wow! Time sure flies when you're young and having fun! :) The last few years have been really good to me. My back feels great! My scoliosis follow up appointments have all been good. :) No issues. I can do anything I want and feel good about my back. Once or twice I think I over did it and my back ached but once I relaxed and took it easy it was fine by the next day. I forget so often that I even had surgery. Every now and again someone asks me about my scar if I have a shirt on that exposes it. It is kind of cool. ;) And the big joke is whenever anyone thinks I am getting mad they say...."Hey don't get her mad she's gonna pop a rod!" LOL !! I have to say when I think back of when I first found out I had to have surgery I was so scared. And the healing process took some time but wasn't too bad at all. Now that it is all behind me, and I know just how good I feel - I think to myself.... "if only I knew then what I know now, I would have felt so much less scared". That is why I am here for you.