Isn’t it ironic…

It’s like rain on your wedding day, it’s a free ride when you already paid, it’s like when you get an epidural after major surgery and it only works on the leg that was NOT operated on. That last line is not so catchy, but it’s what happened to me.

Back on Tuesday, we entered the hospital for surgery around 9:30 a.m. They took me back to my pre-surgery room pretty quickly – about 10 a.m. I got my IV shortly after and my parents were allowed to come back to the private waiting room with me – where we waited and waited. Luckily for me, my parents had just bought me an iPhone the night before. (Instead of a push present it was more like a grow gift.) So I was pretty entertained for a while. My mother ended up telling my dad the whole story of the Hunger Games. Not the trilogy, but the first book – in great detail. My surgery was scheduled for 11 a.m., but that time came and went. We were told it would probably be another hour. I began updating my Twitter account with pictures and texting some friends. Finally around 1 o’clock, my surgeon came in and said he was finished with his first operation of the day and they would take me back in about 30 minutes. He had me sign a paper and that meant I could finally get some calming drugs. They put it in my IV and I began laughing immediately. I was taken back for surgery at about 1:30.

 My mom and dad sitting with me before surgery.

The last thing I remember before going completely under was getting the epidural. It hurt and felt pretty weird. It was two pokes in my spine and a long thin thing being shoved up underneath my skin. I thought I would pass out but I just kept thinking – this will be worth it.

The next thing I know, someone’s calling my name as I’m being wheeled in a bed down a hallway. “Carly, Carly. How do you feel?” “It hurts,” I say. “I can feel my legs! I thought I wasn’t supposed to feel them! It hurts!” When they got me into a recovery room they began testing my legs with ice. We soon discovered my left leg was completely numb, but I could feel everything in my right leg. My right leg is the one they had just operated on. “How could this happen? Please give me something else.” It took about 10 minutes of sitting with excruciating pain, but they just kept pumping more drugs into me until it was tolerable. That was the most pain I’ve been in since the surgery. They say sometimes that can happen with epidurals. If it’s placed just a hair one way, it can go more to one side. This whole time my left leg has been completely numb while my right leg has gotten up to about 25% numb, but that’s it. They give me other drugs though which help and knock me out. Right when I woke up, my pain was probably at a 9, but since then it’s fluctuated between a 3 and 7. It’s been tolerable. But seriously?! Pretty upsetting it happened that way. What are the chances?

The funniest thing that’s happened I think is that after they gave me some medicine, I fell asleep with an egg salad sandwich in my mouth. Made me laugh, anyway.

Dr. H says he is extremely pleased with the surgery. He says I have a very strong bone, and he was even able to place the device in at the top of my leg around my hip. (This is where most people get theirs inserted, but he thought that part of my bone was too thin and he would have to place it in at my knee – which could have potentially caused some trouble for my knee.)

I still haven’t moved very much. Wednesday, the physical therapists made me get out of the bed and sit in a chair. I cried a bunch, but then they gave me some more medicine and I calmed down. They moved me into a chair again today and I did a little better.

 This is what my legs look like right now.

One thing’s for sure, I definitely feel a lot less pain and more comfortable than when I did this 16 years ago and for that I am very thankful. Right now, being nauseous is almost bothering me more than the pain.

Also, having this new iPhone has been great because many friends and family have texted, called, Facetimed, Facebooked and Tweeted me so that’s very nice and keeping me busy!

I’m still in a weird state where I’m falling asleep a lot and have  no real concept of time. My sweet parents are helping me a lot. I hope this entry makes sense because I wrote it in between about six different naps. I’ll continue to write when I can.

We need to talk…

Dear Short Leg,

This was not an easy decision, but after 27 years I think it’s time we part ways. It’s not you – it’s me! I have come to realize I lean on you far too much and it’s time for me to stand on my own two feet – literally. Okay, so it is you, too. I have grown so much over the years and you just have not. You still have many shortcomings I just cannot accept. Quite frankly, you’re annoying. But if I could go back, I wouldn’t change a moment of our time together. You’ve made me who I am today. You taught me to love myself despite my flaws and be confident even though I am different. We both know you are not the best looking leg in town, but I loved you nonetheless!  Breaking up is hard to do and just like when any other relationship ends, this is going to hurt for quite some time. It’s going to be really painful for me and I may even question my decision to do this. Although I know in my heart it is the right thing. No need to call or e-mail. I like to make a clean break. I have many pictures and memories that I will hold dear.

I will never forget you and am thankful for all we’ve learned together.

Thanks for everything,

Carly Flynn

PS – You need to get your stuff out of my apartment ASAP, because your shoes are taking up way too much space in my closet.

Birthing a Leg and Other Ways of Thinking

I am one week away from having rods rammed into my bone – stretching two inches out of my short leg. Half the time I think about it, I’m cool. “You got this,” I tell myself. “It’s going to be pretty bad, but it’s nothing you can’t handle.” The other half of the time I have to fight off an intense panic attack and the urge to projectile vomit. In order to approach this journey in a way that will not make me want to run screaming from the hospital, I have to put it into some perspective. I have a few scenarios that I run through to be able to handle what’s to come.

Birthing a Leg: I liken this surgery to birth. When you get pregnant, a baby grows very slowly in your belly. As it gets bigger, it pushes around other things in your abdomen and gets pretty uncomfortable – or so I’ve heard. At the end, you have to squeeze the thing out in a horrendous marathon of terrible excruciating pain. My surgery will kind of be like birth – backwards. The intense, unbearable agonizing pain will be at the very beginning – when I wake up from anesthesia and I’m guessing the first three days. Hopefully after that it will be bearable. Then comes the stretching, little by little, as my leg is forced to grow. As it gets longer, it will stretch my skin, muscles, tendons and nerves. This will be uncomfortable. But like a million women push out babies every day. And my ordeal won’t even be nine months. I could be back to normal after five or six. At the end I will not have a baby, but I will have a longer leg. Instead of onesies and rattles, I may register for shoes. (This is only a half-joke. I have told my friends I want them to throw me a shoe-er when this is all over. That’s a shoe shower, as I will have to buy all new shoes.)

It Will Get Better: I am choosing to have this surgery and at the end I know my life will be better. I have a choice in this matter and I know the outcome. This is so much easier to handle than people who are thrust into painful life and death situations where they do not know what will happen. I can’t imagine getting the diagnosis of cancer or having my legs blown off in Afghanistan or being shot during a robbery. What about that guy whose arm got stuck in a boulder and he had to cut it off himself? People who face these fates are blindsided one day out of the blue. They don’t always know whether they’ll live or die. They also might have to realize the rest of their life will be different than they had planned. Many people in these situations still manage to deal and stay positive. So I can too.

I Have it Good: Everyone has challenges in their life, but I really could not have asked for a better 27 years. I have loving parents who are still alive and in love today. No one did anything bad to me when I was little. My family had enough money. I’ve always had good friends and extended family. I got a good education and now have a career that I love. I’ve had a lot of fun and have the pictures to prove it. The biggest challenge was probably having a younger brother with a mental disability, but I’ve never known life without him. It felt normal to me. Having him be the way he is has also been a blessing in many ways. (That could be its own blog, really.) If having a short leg and facing painful surgery is the worst thing I’ve ever gone through I am truly blessed. I am thankful there is an operation out there to fix my physical problem. I know there are not surgeries to fix every birth defect and deformity.

My mom sent me an e-mail today that is very sweet. Here’s what it said:

Hello Doll, please know that feelings of apprehension are normal as a surgery date approaches. Everything should go fine. You have a skilled and caring surgeon and you are in general good health and will have strong support from family and friends to recover. But nerves are normal. We will be praying for God to comfort you and I am sure he will. Love, Mom

When I think about things this way, it makes me feel better. Although I still may have a panic attack or two before this whole thing is over. I think that’s okay. At least I have family, friends and faith to help me through.

Isaiah 41: 10 “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”

Good News & Great Neighbors

I got some good news from the doctor this week.  I didn’t explain it in my earlier blog, because all of that was a lot to take in as it is. But there is a relatively new way to lengthen bones, and it is done completely internally. This procedure is called lengthening over nails or LON. It involves reaming out your bone canal and placing a rod inside. At first the doctor told me my bones were too small and the rod wouldn’t fit – so we’d have to do the lengthening with an external fixator. But he’s been looking at my x-rays and now says he thinks he can fit the rod inside if he puts it in from the bottom instead of the top.

Image    This is a side x-ray of my right leg. Dr. H says he’ll break my femur where it’s bowed slightly at the bottom – to straighten it out. He’ll insert the rod near my knee and ram it upwards. (Ram is a harsh word, but that’s basically what will happen.)

Why is this good news? By LON, I won’t have as many scars. With the external fixator – each pin gives you a long scar. I have 22 of those already from the last time I had the surgery. Also, having equipment on the outside is uncomfortable. You can only sleep in one position. Plus you can’t pull pants and underwear overtop of an external fixator. You have to Velcro them – kind of like a one-sided diaper. Check out the cool pants and underwear I already had altered before I knew my doctor could do LON.

Image  Image

From what I understand with LON, there is a thin rod inside of a thicker rod placed inside the bone canal of my femur. One rod will be anchored into my bone at the top – the other at the bottom. The doctor will break my bone in the middle. There is a little magnet somewhere in the rod. Everyday we’ll hold another magnet on top of my leg which will activate the other magnet inside of my leg to push the rods apart little by little. We’ll do about a millimeter a day and after 50 days my leg will be 2 inches longer. The lengthening and recovery/healing is pretty much comparable to the external method, but there’s no pins through my skin, equipment on the outside or cranking of bolts – which sounds like a plus.

Image This is a picture of the LON method from my surgeon’s website. Mine would be on my femur instead of the lower part pictured here – but same concept.

Dr. H has only performed this LON method on eight other patients, but he says all have been a success.

The downside is it’s so new that the FDA has not yet cleared the outside magnet for home use. A “medical professional” has to hold the magnet over your leg. Dr. H admits it’s a simple device to use and anyone could do it. He expects it to be cleared for home use soon, but it isn’t yet. So my two options were live in Baltimore for 2 months so my doctor can hold a magnet over my leg every day – or find a medical professional who lives in Pittsburgh to travel to Baltimore, get trained in using the magnet and commit to coming to my house every day for two months to hold a magnet over my leg.

I thank the Lord for George and Susan. I grew up with Susan’s daughter Ashley. We attended the same church. We live in the same neighborhood. They are the kind of people who feel more like family than friends. After Ashley’s father passed away, Susan married George and the two have continued to be a part of our lives. George is a retired surgeon who has graciously agreed to take on this task – so I can lengthen at home.  It is no small favor and a huge commitment for them. I am so blessed. They will come to Baltimore a week after my surgery so George can get trained on the magnet. Once we’re back in Pittsburgh, I’ve been told George can train other “medical professionals” how to use it, so the burden won’t be totally on him.

I never imagined the thought of getting my bone reamed out would be good news, but in this case it is. I’m taking this with a grain of salt. Things can change and it might turn out I have to have the external fixator at the last minute. I really feel in my heart that I am meant to have this procedure now. I’m hoping it goes as smoothly as possible, but I’ll hang onto my Velcro undies just in case.

Romans 8: 28 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Five Months for 50 Years

After many months of thought, discussion and prayer I’ve decided to undergo leg lengthening surgery for a second time.

A little background for those of you who don’t know – I was born with what’s basically a birth defect. My right leg grew slower and is smaller than my left leg. By the time I was in 5th grade, my right leg was about 4 ½ inches shorter than my left leg. I wore a 4 inch lift on my shoe. It never really stopped me from doing anything I wanted to do, but it was certainly bothersome.

Image This is me with my Grandma when I was 3 or 4. Notice the lift on my right shoe.

In May of 1996 when I was 11 years old, I underwent leg lengthening surgery. It was the most painful experience of my life. An external fixator with pins was surgically installed onto my leg. We basically “cranked” it once a day, which pulled my bones apart slowly. After about 3 months I had gained around 3 inches of length. Then my bone had to heal. I wore the fixator for 6 months total. From the time I had the surgery in May, I went from a wheelchair to crutches to a cane. It was one full year until I could walk again on my own. During this time I also had to go through many intense hours of painful physical therapy to keep my knee and ankle from losing flexibility. It was a very emotional time for me and my family, but it was a success and – looking back now – certainly worth the pain.

Image This is what the external fixator looked like the first time I had surgery. Here I’m walking during physical therapy at the hospital. (Somehow this picture got inverted. I swear the thing was on my right leg!)

Over the next few years, I continued to grow. By the time I was full grown (at a staggering 5’1”), my right leg ended up about 2 ½ inches shorter than my left. That was certainly much better than the possible 5 inches, had I not had the surgery at all, but still quite a bit short. For the past 16 years, I have worn a 1 inch lift on all of my right shoes.

Through my high school and college years I never considered having surgery again to gain the rest of the length. How could I take time out of my busy/amazing life? It never felt like an option to miss homecoming, summer fun or football season.

Over the past two years, the shortness of my leg began to bother me more. It’s like if you put a book under just one of your feet and tried to stand comfortably. You have to point your other foot, tilt your hips or bend your leg to stand even. That’s what I have to do all the time. The difference also gives me some back pain from having to contort my body. Not to mention that lift I spoke about above costs at least $50 for every pair of shoes I buy.  Not a small investment. Plus I can’t just wear any shoes I want. I’m limited to what a lift can be attached to. Oh, and all of the right legs of my pants need to be hemmed higher than the left side, as well.

Image This is my most recent x-ray. You can see that everything from my hip down is smaller on the right side. Notice how my femur is also shorter. I’m standing on about 2 inches of blocks on the right side for this x-ray.

I’ve come to realize it’s a now or never situation with this surgery. If I’m going to do it, it needs to happen before the potential next big steps in my life like getting married or having kids. Also, with my career, I never know where or when I’ll be moving. Right now, I know Chattanooga will be my home at least through 2012. My parents are at a place in their lives where they can rearrange their schedules and take time off to do this with me. They will be sacrificing a lot to support me through this time and I can’t even begin to describe how blessed I feel to have them in my life.

I have scheduled surgery for March 27th at The International Center for Limb Lengthening in Baltimore. I have been seeing the same doctor I worked with 16 years ago – Dr. John Herzenberg.

What does this entail? Unlike last time I had surgery, we will only be lengthening my femur and not the bottom part of my leg. On the day of my surgery, the doctor will hollow out the marrow from my femur and slide a rod inside my bone. Then on the outside, I will have some external rods and partial halos attached to pins that will be drilled into my bone. Then, they’ll break my femur. Over the next two months, I’ll use a wrench and turn a bolt that will pull the pins and my bone apart at 1 millimeter a day. There are 25 millimeters in an inch and I need at least 2 inches – maybe a bit more. So we will be lengthening for at least 50 days. After we have all the length we need, the doctor will remove the external device, but leave the rod inside my bone (supposedly I won’t even know it’s in there). Then the 2 inch gap in my bone will have to heal. Bone regenerates, so it will fill in on its own. In 8 to 10 weeks after we stop lengthening, it should be healed and I can begin to put all my weight on it. Dr. Herzenberg says I could be walking on my own without crutches and with two legs the same length in four to five months from the time I have the surgery. During this whole time I will have to go through physical therapy to keep flexibility in my knee, hip and ankle.

I will need to take some time off of work and plan to go on short term disability for the most intense part of my lengthening, physical therapy and recovery. During that time I plan to live in Pittsburgh under the care of my parents.

By no means am I in a life or death situation. If this surgery was not available, I could live out the rest of my life and deal with the small challenges my leg presents – being happy and complete. But this surgery is available and it will make my life better. It will be hard and it will hurt and it will be a very challenging time for me and my family, but many times you have to do unpleasant and painful things now to improve your life in the long-run. This is one of those times. I am grateful to my 11-year-old self for having the surgery 16 years ago. And 16 years from now, when I’m 43 with two legs the same length and normal shoes, I think I’ll be thankful to my 27-year-old self for doing this now. I’m sacrificing 5 months to make the next 50 years better.

Your thoughts and prayers are welcomed! Thanks for being interested in my life and I promise to keep you updated!

Joshua 1: 9 “I hereby command you: Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go.”