June is Scoliosis Awareness Month, so here's our interview from the end of last summer with the brave and determined Tabitha Sullivan, as she talks all about her Scoliosis surgery.
Meet 15-year-old Tabitha Sullivan. While many other 15-year-olds spent last summer relaxing at the pool or on vacation with their families, Tabitha underwent extensive back surgery to treat her scoliosis, a disorder that causes your spine to curve abnormally. Tabitha has come through her surgery and is making a fantastic recovery thanks to a great attitude and the support of her family and close friends.
Tabitha, thanks so much for talking to STRONG and sharing your story. Can you tell us how you were first diagnosed with scoliosis?
Basically, when I was ten, we went to the doctor for my regular annual physical and they said I had a little curve in my spine. A lot of kids have it and it just corrects, so we weren’t too worried, but the doctor just said that I should get it checked because I was tall for my age.
You went to see another doctor and they started keeping a closer eye on you?
Yes. It just kept progressing though, and every single year I would go back and it would be worse. So when I was 13 they put me in a night brace just to hold my spine straighter when I slept, and they hoped that would move it back into the correct position.
What was the night brace like?
Well, one side is straight down and on the other side it’s curved. There’s a lot of velcro. You do it up really tight. It’s supposed to straighten out your spine when you’re sleeping. You wear it every night and eventually it kind of shifts your spine back.
Was it hard to sleep?
At first it was super hard and I couldn’t sleep at all. I had to take melatonin. But after a week or so I got used to it. At first I could only sleep on my back, but then it got so I could basically sleep in any position.
But the night brace didn’t do the trick for you?
No. It helps a lot of people, but I wore it for two years and then the doctor decided I should get a day brace as well. I got that the summer of 2016. I didn’t wear that as much because it’s really uncomfortable to wear it when you’re sitting down, which obviously you do a lot of the time at school. So at first I was told just to wear it in the morning and then when I got home. One day I wore it to school and I could only wear it for an hour and then I went to the nurse and took it off because it was just so uncomfortable.
“The first day I wore it I wore a huge sweatshirt because you could see it under all my clothes.”
What was your emotional state like throughout all of this? It must have been upsetting going through all of this as a teenager?
Yes. It was horrible wearing it to school. I didn’t have to wear it for that long, but I couldn’t imagine wearing it everyday. The first day I wore it I wore a huge sweatshirt because you could see it under all my clothes.
How did your friends and other kids in your grade react?
My friends were fine with it because they know me and they knew what was going on. But when other people noticed it they sometimes said “What are you wearing?” because it looked kind of like I was wearing a shield over my body!
Did the day brace make you feel very self-conscious?
I was super self-conscious. I had a friend in my gym class though who had scoliosis too. Hers was almost as bad as mine, but she hasn’t had to have the surgery yet because she’s still really tiny. She had been wearing the night brace so she knew how hard it was for me and she helped me with that. She really supported me.
But ultimately, the day brace didn’t help your condition?
There’s this thing where bracing doesn’t work for everybody. Most people, but not everybody, and it didn’t work for me. So last year I had another appointment and the doctor said I was in the 50 degree zone, which is when you have to start considering getting surgery.
“Basically, if you looked at my spine from behind, instead of being straight it was like a big letter S.”
Can you explain the 50 degree zone?
Basically, if you looked at my spine from behind, instead of being straight it was like a big letter S. The top curve was bigger and there was a smaller curve at the bottom of my back. Once you get to 50 degrees on your curve that’s when you’re in the surgery zone. I was 54 degrees at one point. We were going to appointments every six months during the last year and a half and each time the number of degrees was going up. You have to wait for it to be more than 50 degrees though to know that surgery is worthwhile.
Could people tell by looking at you that there was a problem?
Yes. There was a girl at school whose sister’s friend had had scoliosis and she said she could see it through my shirt. My mom said she could tell from my shoulders; one was up, the other was down— and my waist was uneven.
“Everything’s out of balance, so it affects your joints, everything.”
If you hadn’t had surgery to correct your condition you would have been in a lot of pain when you were older. What did the doctors tell you about that?
That it impacts everything. They told me when I was older it could affect my lungs. Some people can’t get air in, some can’t get air out because their lungs are all messed up and they have to be on a machine to help them breath. Also if I were to have children it would make it difficult. Everything’s out of balance, so it affects your joints, everything.
Could you feel that there was something “different” about your spine?
I couldn’t when I was 13, but this past year when I walked around a lot I could. For example, we went to New York for the day and at the end my back really hurt.
“I think it had been going on so long that we just never thought it would actually happen, so although the angle had kept on getting worse we were still in shock.”
What was it like the day you found out your were going to need to have the surgery after all?
My mom was with me. They took an x-ray, which they always did just to see what angle my spine was at. Then the doctor, Dr. Smith, showed them to us and we knew right away that I was going to have to have the surgery. We didn’t talk to him too much more about it that day because we were just so upset. I think it had been going on so long that we just never thought it would actually happen, so although the angle had kept on getting worse we were still in shock.
I was really upset when I got out of the appointment and I was crying and stuff, but then after that day I didn’t even think about it. It still seemed so far away! It was March and we knew they would perform the surgery over the summer because otherwise I would have to take six weeks off school. I had finals and end of year stuff to think about and I was in school mode. So I didn’t really think about it again until June.
And the date for your surgery was?
Did you do lots of reading on the internet to find out about the surgery?
No! My parents didn’t let me look on the internet at all.
Did that actually stop you?
No! I looked on it once, but then I actually got really scared because it’s a really big surgery. My mom said please don’t look on the internet again! We went to an appointment later that month with Dr. Smith and he explained the whole thing. He showed me the rods and told me the whole history of scoliosis surgery. We’re lucky these days because things have changed so much. In the past, people would be in a hospital bed for a whole year having their scoliosis corrected. He showed me the screws and stuff and showed me how much it’s improved. I also saw pictures of scars so I had a good idea what mine would look like.
It sounds like he did a great job of preparing you and making sure you knew what to expect.
Yes, I did. But I also have a really low pain tolerance, so I was really freaking out about how much it might hurt! The doctor didn’t really know what to say because whenever he asks the kids about the pain they don’t remember it because they’re on medication after the surgery!
The surgery is called a spinal fusion. Can you tell us what it involved?
Basically, they had two titanium rods that they put down either side of my spine. There are 24 screws holding them in place. But before they did that they had to break my spine in lots of places. Then I have these freeze dried bones that come from a donor. Over the course of two years those bones will grow over the rods so it becomes like a new spine.
The worst bit was that I had to give a pint of blood. It was honestly like one of the worst things, because I hate having shots!
Wow, that’s quite a major surgery. Did it last a long time?
It was nine hours. We went in really early in the morning. My parents didn’t see me for 11 hours though because I had to wake up afterwards and everything.
Is your back much straighter now?
Yes. Now I’m only 13 and 6 degrees —you can see the difference. Also, I’m taller! I grew an inch after the surgery. When I stood up to leave hospital my brother and my dad were like “You’re so tall!”
What was it like when you first woke up after having had the surgery?
Well, when I woke up I wasn’t really with it. I was on a lot of meds. I didn’t feel any pain for the first three days. Normally they do the surgery on a Monday and you leave the hospital by Friday, but I had a complication. Before you leave the hospital they like you to be able to walk the ward and also climb stairs, but I kept getting these horrible headaches, and I got really nauseous.
I know it took them a while to find out why you were having the headaches.
Yes, my mom kept saying I seemed fine apart from the headaches and in the end they gave me an MRI, and that’s when they found that there was a spinal fluid leak. They had nicked the spinal cord a little during the surgery.
I understand that’s pretty uncommon and that that’s why it took them a while to figure it out. What did you need to do to recover from that?
I had to go on bed rest, which is not what I was supposed to be doing for my scoliosis, but they had to let the spinal cord heal first. It healed quickly and they gave me some medicine that I had to put up my nose. It tasted horrible, but it made me not feel the headaches anymore, and after that I could walk just fine.
Phew! That was a complication you didn’t need!
Most people are in the hospital for a week, but I was in for eight days total.
And now you’re four weeks post surgery. How has your recovery been so far?
It’s amazing how quickly you heal! I had a PT person come at the start and they would walk with me--—ten minutes in the morning and ten in the evening—but that’s it. Now I can go out in the car and around stores and things and I get my walking in that way. I don’t need to wear a brace or anything. After three weeks I came off my meds and was only taking Advil. I’m sore sometimes, but not in pain. It’s more because my muscles and skeleton are in a different place and they’re having to get used to being used in a different way.
I just feel really straight when I sit up and stuff! People keep saying my posture is great because I can’t bend at my back, I only bend at my waist.
Have you seen many of your friends since your surgery?
Lots of my friends have been over to the house to see me. They brought balloons and so much candy! I went out once to a party, but I only stayed about 20 minutes because it was a bit overwhelming. But it was fun to see everyone. My best friend, Tate, came to the hospital twice, and brought me books and things.
That’s really lovely. How are you feeling about going back to school?
I like school, so I’m excited to go back!
“You probably think that people are thinking about you more than they do. They’re not going to look at you differently because you got surgery.”
Your mom says you’re pretty tough. She says you’ve always been really brave and deep down you don’t really care what people think—you’ll do what’s right. She says that really came through after surgery and it made you strong.
Well, you probably think that people are thinking about you more than they do. They’re not going to look at you differently because you got surgery. It’s a big deal to you, but no one looks at me differently or anything. Other people aren’t going to be as preoccupied with it as you are. It didn’t change the way my friends looked at me at all. Even when I had the day brace. No one cared— it didn’t affect them. To me, I thought everyone would be looking at me, but they really weren’t.
“Everyone else is always very absorbed in their own lives so no one really noticed!”
Were you teased at all, when you had to wear the day brace? When people knew you had to have the surgery?
No. It wasn’t a problem. Everyone else is always very absorbed in their own lives so no one really noticed! In fact, I know now that when I was in 6th grade there was another girl at my school who had to wear a day brace and I didn’t even notice!
I’m guessing a lot of them didn’t really understand what you were going through either.
Yeah, some people still don’t really understand. Some of my friends didn’t think that it was a big deal. My closest friends did, but others said things like “Oh I had knee surgery and it was so bad” and I was thinking “It’s not the same thing!”
I think it was just my closest friends that really looked it up and talked to their parents about it so they knew what I was going through.
In the future, are there any restrictions or things you can’t do?
Well, I can’t run until the end of winter and normally I play lacrosse in the spring. I won’t be in shape so I probably won’t be able to play. Also there’s a lot of twisting, so I’m not sure how that’s going to work out. It’s one of my favorite sports, so that kind of sucks, but maybe I can do cross country or something instead.
‘It’s not as bad as you think it’s going to be! I am already so happy I had the surgery.”
Tabitha, there are going to be other girls reading this who maybe have just found out they have scoliosis and are really worried. What would you say to them?
Firstly, you might not have to have the surgery. Most people don’t. Lots of people in my family have had it [it can be hereditary] and they have grown out of it. Also, for lots of people, the braces work. If you do have to have the surgery, then this may sound like bad advice, but it’s not as bad as you think it’s going to be! I am already so happy I had the surgery.
That’s pretty amazing news after only four weeks! You’ve been through something most kids your age haven’t even had to think about. How do you think it’s affected you as a person?
It’s changed my perspective a bit. I know now that life isn’t always smooth and I appreciate certain things more than I think some other kids my age do. I was super scared and now it’s done I’ve been through something a lot of my friends haven’t, so it does makes me a little different.
Tabitha, thank you so much for talking to us. You are a shining example of a STRONG girl. Someone who has faced adversity, in your case a really major surgery, with an amazing attitude. We hope you heal quickly and you feel stronger and stronger each day!