Like a caterpillar waiting inside it's cocoon to become something beautiful, I was diagnosed with Scoliosis at the age of 12 and have waited for 16 years and approximately 2 months to become this majestic creature. My life is now a blank slate where not only do I have to go back to school, but I have to find another career. I also have to regain my self assurance and esteem. Like the butterfly, I have finally been able to sprout my uniquely flawed wings and search for my new beginning. This is my chance to prove to myself that I am beautiful.
Hopefully my experiences have assisted you with yours. Remember that you are beautiful inside and out. Never listen to the negativity because it will bring you down. Be strong for yourself and stay positive. Like the butterfly, you will spread your wings and fly to places you never could of without Spinal Fusion surgery. You are not alone in this battle. You are a survivor.
Battle scars and all.
My brace came off today! I no longer have to wear it on car rides or walking around. It feels like I moved a mountain. It has now been 2 months to the day that I have had my Spinal Fusion surgery. This obstacle in my life has been a horrendous one, but I made it. I dreaded these days since June 2013 and it is complete. Now I just have to be careful, watch what I eat to maintain a healthy weight, wear my electromagnetic brace 2 hours a day for a little while longer, and get stronger. In February, I will go back to my surgeon to have him evaluate my spine again. They will take another x-ray to make sure the rods are still secure.
I also came home today to my boyfriend and our son. Oh, it's good to be home.
As the days pass, the pain gets better. I don't seem to take my Percocet as much as I previously did. I am allowed to downgrade to Vicodin as soon as this last bottle is finished. I also am not taking naps as much. I am able to walk a mile too. Every night I now have to wear a belt that is electromagnetic. It's supposed to help the bone graft solidify faster. It's uncomfortable to sit in for 2 hours a day, but whatever works.
I am also going into town more often with my mom. Of course, I do not do much. Mainly I walk around the stores. People do stare. Be prepared for that by the way. Humans are a curious bunch you know. Some just stare, others whisper as the walk past you asking what do you think happened to her, then occasionally a few will have the guts to ask you. I was asked if I was in a car accident, if I broke my back, and one lady even asked if I was in the CIA because of the brace.
I had my IVC filter removed on 11/18/13. (Remember this portion of the blog is behind due to the condition I was in at the time.) It was a piece of cake since I knew what to expect. Just like when they placed it, I was awake the entire time. I wasn't nervous at all, but I can tell you one thing- I NEVER want to go through all this again! The removal of the filter was the last big hurdle. I am now hospital free!! Yay!
As of 12/3/13 my brace will be gone! That's 2 months since my surgery! I am ready to live normally again!
I went to my 1 month post op appointment with my surgeon on 11/6/13. It was nice to get out of the house. When we arrived at the doctor's office, they took a new x-ray to check the rods and to make sure everything is stabilized. My wonderful surgeon then came in to check my reflexes and checked the incision. He said everything was healing beautifully.
My surgeon gave me a card that I will have to carry with me at all times due to the titanium that now rests inside me. Metal detectors, more so airport metal detectors, have a tendency to pick it up.
So, today was a great day with great news. Oh, I can also stop wearing my brace in 1 more month! Yay! He says I am strong enough!
Below are my x-rays. I went from 62 degrees to 15 degrees! Bless my surgeon and the astonishing world of science.
Today was the same as Day 4 except for one thing...they told me I can go home today! I am walking well, eating pretty good, and my incision looks great too! The hospital is giving me a walker and a raised toilet seat to take home.
After lunch, 2 of my coworkers stopped by to check on me. They gave me some beautiful flowers. While they were there, nurses came by to prepare me to be discharged. The girls left and next thing I knew I was being seated in a wheelchair and being took down to my mom's car. I was so excited!
The drive to my mom's house was long, but I was happy. By the time we got there, I was so tired that I feel asleep and slept for a few hours. It felt glorious to lay in a comfortable familiar place again. Unfortunately, the pain was hard to forget. During the night I woke every 2 hours. My pain in my rib cage and hips was unbearable. The Percocet helped but not totally. It was just enough to lull my back to sle
Hello all! I am so happy to be writing again! My energy is finally high enough so I can concentrate! I have so much to share so I'm just going to hit the ground running and start talking.
My Spinal Fusion surgery was October 3rd. I had about 2 hours of sleep and had to be at the hospital by 5am. Mom drove me in the wee hours of the morning. Let me just say, there wasn't much said on that trip. We were both pretty nervous I think.
We checked into the Spinal Care Unit and it wasn't 20 minutes before they called me back to the holding area. I had to walk back there by myself, get changed into a diposable hospital gown (due to the "involvement of blood"), and the nurse began prepping me by asking all the medical history questions. After what seemed like 50 questions later, the nurse said she would get my mother. By the the time my mom came, the nurse was placing more chlorahexydine (antimicrobial) on my back.
I was a freaking nervous wreck. I was so scared. I was shaking my foot so bad that I was rocking the whole bed. Mom noticed and naturally starting tearing up telling me that it was going to be fine. I cried a little, but I was trying to be strong for her. Inside I was screaming. Unfortunately, I only got to see her for 15 minutes before being rolled into the pre-op holding area. I could not look back at her. Never in my life have I been that terrified.
Inside pre-op holding, I was the youngest person. Everyone else was middle aged or older. I was rolled into a corner with no one around me. I just stared at the wall trying to meditate and stay calm. A nurse by the name of Frank introduced himself. He said he was going to be with me the entire operation. He was very nice and made me as comfortable as he could.
The prepping began by placing pulsating cuffs on my calves to help stop blood clots. The IV was placed on both arms. A nurse came walking towards my bed with a cooler and placed it on the table directly beside me. It read, "Blood Bank for Tiffany O'Neal". That's when I started to panic. I started to hyperventilate, but the nurse named Frank mellowed me out. My surgeon stopped by to check on me. He was very kind and reassuring. The moment he walked away however, I started crying like a baby. Finally, they gave me Versed (anxiety medicine) to get me to chill out. Then it was lights out. I did not remember a thing.
Well, today was an interesting day. I had my final pre-op with the surgeon today. He went over how he was going to make the incisions and where. If I remember correctly, the incision will start at T2 and extend to L2. It will be titanium rods and screws as well. Now, the doctor did say that he was doing selective fusion, which means he is basically choosing the best area to fuse since I have a curve in my Thoracic (upper back) and one in my Lumbar (lower back). He says he is not going to extend to far into my Lumbar because he thinks it will correct itself due to manipulating the Thoracic. Of course, there is a chance he will have too. Just depends....
The doctor said he will have me placed in ICU for 1-2 days depending on recovery. He will also have me up and walking the next day. I will be fitted for a brace and will possibly only have to wear it for 6-8 weeks. Just depends on how I am healing. A nurse will also come to my house everyday to check on my incision site.
Now, here's the great news. He informed me that due to the possibility of forming blood clots and the family history of clots, I have to have a IVC filter placed. This contraption is inserted into my main artery and filters out the blood clots. I will have to have this placed prior to the Spinal Fusion.
Yea...more stuff, but if it helps me in the long run, the better.
Below are some pictures that took of my xrays:
Today was one of the hardest things I've had to do. I talked to my 5 year old son today about what is getting ready to happen to his mother.
I decided to tell him at bedtime because that's when he seems to discuss his day a little bit easier than other times of day. I laid down with him and asked him if he remembers that Momma sometimes can't play because of her back. He said, "Yes, your back hurts a lot." I then hugged him as tightly as I could and told him that Momma is getting ready to have an operation to help my back feel better. He started crying saying he didn't want me to hurt. It took everything I had not to cry with him.
I told him that I was going to go to the hospital and then to his Grand-moo's house until I get better, so I will not be around him very much. I told him that he can come see me at Grand-moo's, but he has to stay with Papa (his dad) until I am stronger. My son cried and said he doesn't want me to go, but I said, "You have to stay and take care of Papa. He is scared just like you. He needs you to help him around the house and be a big man." He then replied, " Papa scared too? Oh, I have to be brave!".
I hugged him, kissed him, and told him that when I am gone, if he ever wants to see me, then to look inside his heart and that's where I'll be. I told him to also dream of me because I will be of him. That little boy is my heart and I have to be brave for him. He is the main reason I am having the Spinal Fusion. I want to know what it is like to play with my son without hurting. I want to enjoy the rest of our lives without being in pain. He is my love bug......he gives me strength.
I created a Facebook community page called, "Scoli Club United". It's a page where people from all over the world can come together and share their experiences with Scoliosis.
When I was diagnosed with Scoliosis at 12 years old, there was hardly any information or support groups out there. Everything was a take it as it comes experience. It would have been phenomenal is there was something out there to help educate myself and my family, but since there was not, I thought I could lend a helping hand. Educating and showing people with Scoliosis that they are not alone and helping with the self esteem issues that arise, especially since we all know that our society can be cruel. I was on the front lines battling with bullying and body self image problems.
This is where not only the Facebook community page, "Scoli Club United" comes in, but this personal blog of mine that you are currently reading. If I can make one person out there realize that they are beautiful, twisted and all, then I feel I have helped. I felt very alone growing up and my goal is to make the world see that yes, only 2-3% of our population has this condition but it deserves recognition. Just because you see someone who has a hump on their back, can not stand straight, complains about back pain, or you can not see it at all because you were aesthetically lucky growing up until you bend over and cruel peers ridicule you, please know that you are special.
Go to Scoli Club United Facebook page and "Like" it and share your experiences. Whether you or someone you know has Scoliosis, please share your stories, pictures, writings, or artwork.
One day there will be better research, better education, and better treatment options for Scoliosis. We are survivors.
I had a dream that I was walking alone through a forest full of beautiful large pine trees. I could tell that it was late autumn by the slight chill in the air. I could hear the squirrels digging for acorns, see the breath of a fawn while it enjoyed it's meal of forage, and I could hear my own heart beating. None of the animals scatter as they see me approach, like as if I am one of them.
I soon realize that I am no where familiar. I continue to walk ahead, but a foggy mist sets in. Softly out in the distance, I can hear a small voice. I speed my walking to see where it is. Then I realize that it is my son calling for me. I begin running calling out his name, but all he says is, "Mama! Mama! Where are you?" I keep running but never reach him. Then I wake.
My heart is heavy....I am fearful...but I have to be strong because no one else can do it for me.
To be so strong that nothing
can disturb your peace of mind.
To talk health, happiness, and prosperity
to every person you meet.
To make all your friends feel
that there is something in them
To look at the sunny side of everything
and make your optimism come true.
To think only the best, to work only for the best,
and to expect only the best.
To be just as enthusiastic about the success of others
as you are about your own.
To forget the mistakes of the past
and press on to the greater achievements of the future.
To wear a cheerful countenance at all times
and give every living creature you meet a smile.
To give so much time to the improvement of yourself
that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear,
and too happy to permit the presence of trouble.
To think well of yourself and to proclaim this fact to the world,
not in loud words but great deeds.
To live in faith that the whole world is on your side
so long as you are true to the best that is in you.
― Christian D. Larson
Lost in Wonderland and my name is Alice. Or so it seems because apparently I have been bonkers lately. Oh me, oh my, I'm waiting for a very important date. Only I can't be in a world chasing a white rabbit down a hole. My world is a Spinal Fusion clock tick tick ticking way too fast.
It has been brought to my attention that while I am trucking through the days at work or being home with my family, I have been oblivious to the fact that I have gone mad. Everyone says I'm still nice, funny, and thoughtful but, it seem as though I'm always somewhere else. Like I'm here but not really. I have been told that I am being distant. Trust me, I do not mean to be. My mind is on a vacation, I guess. The last thing I want is to make anyone feel unwanted.
All the stuff I have to get situated at work before my surgery, all my doctor appointments coming up, being a mother, and going into a surgery not knowing if I'll even have a job afterwards is really weighing heavy.
I will try to be knowledgeable when my mind wants to check out of Hotel Tiffany. In the mean time, please be patient with me.
"But it's no use going back to yesterday, because I was a different person then." - Alice in Wonderland
To be honest with you, I never thought Yoga would be able to relax me or be beneficial to my health. With this Spinal Fusion surgery coming up though, it has me thinking about my life. The tension and negativity that I have carried throughout my life not only made the muscles in my back tight and hurt more, my mind was hardly ever clear. Let me tell you, I have only been doing yoga for a couple of weeks and I can already feel a difference in my muscles when I do the poses. My attitude is changing as well. I have noticed that I let negativity just roll off me, unlike in the past. I got to say....I am liking it. I can see myself doing this for possibly my whole life.
Yoga has positive effects on your body's systems too. Muscles, skeletal system, circulation, glands, immune system, nervous system, and mind. It teaches you to stay grounded, to breathe, and relax. I am mad at myself for not trying Yoga sooner. It doesn't hurt my back; it stretches it really well.
I am still a newbie but hopefully one day I'll be a pro. I really enjoy Yoga and would recommend to to anyone.
You know the song from Grease where Frenchy sings about being a Beauty School drop out? Well, that tune is stuck in my head like a broken record. The only difference, I dropped out of college. I had too. I went to the school and the Advisers suggested that it would be best not chance failing any classes even though I was going to take them online. One of my classes' tests would be at the college 3 times that semester but, my surgery would be hitting at mid-term time. Bad combination. Especially when you can't walk that great.
So, I guess that means I'll have to try again for the Spring 2014 semester. It's only taken me a decade to enroll and all.......
I decided to make an appointment at an Orthopedic office about 2 months ago because the pain started to get intolerable. I can barely make it through a day of work. I'm stuck in ergonomically horrible positions for someone like me. Why couldn't they tell me before I started school for dental assisting, " If you have a bad back, do not pursue this career." Private college be truthful? Ha! Yeah right.
Anyway, I arrived at my appointment an hour early. I was so nervous. It poured down rain on the way there and I was yelling at my boyfriend because I thought we'd be late. Poor Yvenson. He just kept calm and kept telling me it would be fine.
He keeps me grounded.
When I was called to go back to a room I thought I was going to puke. 11 years is too long to keep this waiting.... I changed into my gown and took x-rays. The Physician's Assistant came in and got a run down on what's going on and why I came. She checked my reflexes and any areas that did not feel normal to me. Besides the constant thoracic pain, left shoulder feeling on fire, no feeling in my left arm and hand, right palm numb, and hips hurting to walk.... I felt great.
The doctor came in and told me something I never expected. My curve progressed to 62 degrees. My heart fell into the pit of my stomach. It took everything I had not to cry. He said I needed surgery or else it will keep getting worse. It has started to push on my lungs. I will become disabled by the time I am middle aged if I do not do anything. On top of that, my curve has now begun to curve outwards causing my right shoulder blade to protrude.
The surgery will last minimum of 6 hours and I would be opened from basically the point right above my shoulder blades to right above my hips. All types of rods and screws will be placed. He says that he should be able to get my curve to at least 22-24 degrees. Fantastic! That would be like a having a brand new back!
The doctor gave me the information I need on what to do if I decide to have the surgery. His office staff was really nice and told me I can come back to consult again if need be. No paralysis, impairments, or deaths on this doctor's table either.
I have to do it. I have too. My son is counting on me. I do not want to be in a wheelchair or be disabled any worse than what I am.
I felt like I got sucked into another dimension. Yvenson drove home. I do not remember anything that was said. I feel like I am in mourning. Like I'm mourning the normal straight spine I never had. I feel like a freak.
I have not slept tonight.....
New diagnoses: Right Thoracic Kyphoscoliosis