I still have not figured out how to use the NSF Forums. My account was also deactivated so I continue to look for new ways to communicate with fellow scoliosis patients. Right now I'm just happy to 'pretend' I'm normal and carefree. Since the surgery will take place in the summer, my focus is primarily on school and work right now. There are times when I question my sanity throughout this mess. I want answers. I know most causes of scoliosis are unknown, as mine is. I want desperately to know what causes it though. I wouldn't wish scoliosis upon anyone. I've found that dealing with it is much more mentally and physically challenging than I ever would have thought. Sometimes I wonder if we had caught my scoliosis just a year or two earlier if I would still have to have surgery. I know if I had been in sports it would have been spotted earlier. Not needing a physical though I went three or four years straight without needing to see a doctor.
Talking to my godmother, who has had many back surgeries in her time (none for scoliosis might I note), she told me not to have surgery if at all possible. She knows better than anyone I know that any type of back surgery is no walk in the park. I'm very blessed and thankful to have family such as my godmother to support me through whatever troubles me. I feel guilty talking about it at times though. Most don't understand what it's like or how to be supportive when they don't know how it feels or what exactly scoliosis means for my future, or present for that matter.
With my appointment at Mayo Clinic in Rochester about two months away I've decided to better educate myself on scoliosis surgery. I read two books on scoliosis that I would highly recommend to anyone with scoliosis or even family and friends of people who have scoliosis and want to know and better understand scoliosis and spinal fusion surgery. Those books would be When Life Throws You A Curve by Elizabeth Golden and Scoliosis Surgery: The Definite Patient's Reference by David K. Wolpen. While When Life Throws You A Curve is a personal story of the author's journey through scoliosis and surgery, the second is more an informative book on scoliosis surgery. Both are great if you have scoliosis or you want to better understand it.
Sunday, March 27, 2011
Wednesday, March 16, 2011
One Step Forward, Two Steps Back
My main goal right now has been to find others with scoliosis, or who have had scoliosis surgery to communicate with. Sounds easy right? With internet it's easy to connect with all sorts of people! WRONG! I do not believe in putting my identity out there with some sketchy website claiming to be a "scoliosis chat room". Today I became a member of the National Scoliosis Foundation Forum. I thought, "great, now I can share my story and communicate with others going through the same thing I am!". Again, WRONG!
When I tried to post a new thread it took me to a screen that told me I did not have permission because my account is either not sufficient enough to make posts or the administrators of the website are not allowing me too. I am by no means, dissing the National Scoliosis Foundation. I think it would be a great tool if I could use it. And quite possibly I do not know how to use it.
Right now I'm just frustrated. I'm having surgery in anywhere from 2-4 months and I'm ready for some answers to my questions! I want to be able to confide in someone who knows exactly how I feel because they've been there or they're feeling the same way now too! If anyone who is tech savy in the slightest bit could help me figure this out that would be great! Like I said, I'm ready for some answers.
When I tried to post a new thread it took me to a screen that told me I did not have permission because my account is either not sufficient enough to make posts or the administrators of the website are not allowing me too. I am by no means, dissing the National Scoliosis Foundation. I think it would be a great tool if I could use it. And quite possibly I do not know how to use it.
Right now I'm just frustrated. I'm having surgery in anywhere from 2-4 months and I'm ready for some answers to my questions! I want to be able to confide in someone who knows exactly how I feel because they've been there or they're feeling the same way now too! If anyone who is tech savy in the slightest bit could help me figure this out that would be great! Like I said, I'm ready for some answers.
Friday, March 11, 2011
It's All Becoming Too Real
Today my mom called Mayo Clinic. Instead of getting x-rays here now, they want us to get x-rays there. My appointment is set for May 27. I'll get x-rays an hour before I meet with my surgeon. Whoever my mom talked to on the phone also suggested we make a tentative surgery date just in case. Then if surgery is the final decision we won't have to wait for a date the 4-6+ weeks that it might take. Dr. MacIntosh is the doctor I've seen there the two times I've gone for yearly check-ups. She's an amazing doctor and I have total faith in her whether I have surgery or not.
Needless to say, whether I'm seeing the greatest doctor in America or the worst, I'm nervous. With a date to talk about surgery set, it all seems so real. I've never enjoyed going to the doctor. I usually stay healthy and I don't play sports so there's usually no need for me to see the doctor very often at all. When I had my first appointment, she said my scoliosis would never get bad enough for surgery. My growth plates indicated I was done growing, my thoracic curve was 30.6 and my lumbar 36.9. Just in case, we would get x-rays October 2010. We did, and although I only grew half an inch my lumbar curve increased by almost 10 degrees in just a year.
Learning that I had scoliosis wasn't a big deal at the time, and now it could very possibly change my entire life. As of right now, I'll just have to play the waiting game until May 27th.
Needless to say, whether I'm seeing the greatest doctor in America or the worst, I'm nervous. With a date to talk about surgery set, it all seems so real. I've never enjoyed going to the doctor. I usually stay healthy and I don't play sports so there's usually no need for me to see the doctor very often at all. When I had my first appointment, she said my scoliosis would never get bad enough for surgery. My growth plates indicated I was done growing, my thoracic curve was 30.6 and my lumbar 36.9. Just in case, we would get x-rays October 2010. We did, and although I only grew half an inch my lumbar curve increased by almost 10 degrees in just a year.
Learning that I had scoliosis wasn't a big deal at the time, and now it could very possibly change my entire life. As of right now, I'll just have to play the waiting game until May 27th.
Wednesday, March 9, 2011
Time To Get This Ball Rolling!
In the words of my mom, "it's time to get this ball rolling!" Meaning, here begins my journey through the good and bad scoliosis and very possibly surgery. Although my previous two blog posts say they were posted today, they were not written today. The first one was posted in January and the second was two week ago. That's a side note though.
Nothing much has changed since then. I still have a little pain every now and then. I'm still anxious about getting x-rays next week. Even more anxious about getting the results!! Right now it's simply a waiting game I have no choice but to play.
Few people know why I started this blog and I decided it was important for anyone who reads it to know the purpose. In the past few months, my nerves have increased little by little at the thought of surgery. I've turned to the internet in search of personal scoliosis surgery success stories but haven't found much. I figured, I can't be the only one out there wishing I could hear some other people's stories about what I'm currently going through. Hence, my blog was created.
My intention is to give whoever reads my blog the full story of my journey through scoliosis. I will keep it updated and answer any questions! Scoliosis isn't as simple as it seems, especially for anyone who has it. I can only hope that with my blog I can raise awareness of scoliosis and maybe even help prevent scoliosis surgery for some!
Nothing much has changed since then. I still have a little pain every now and then. I'm still anxious about getting x-rays next week. Even more anxious about getting the results!! Right now it's simply a waiting game I have no choice but to play.
Few people know why I started this blog and I decided it was important for anyone who reads it to know the purpose. In the past few months, my nerves have increased little by little at the thought of surgery. I've turned to the internet in search of personal scoliosis surgery success stories but haven't found much. I figured, I can't be the only one out there wishing I could hear some other people's stories about what I'm currently going through. Hence, my blog was created.
My intention is to give whoever reads my blog the full story of my journey through scoliosis. I will keep it updated and answer any questions! Scoliosis isn't as simple as it seems, especially for anyone who has it. I can only hope that with my blog I can raise awareness of scoliosis and maybe even help prevent scoliosis surgery for some!
Scoliosis Anyone?
In my first blog I told of my journey through being diagnosed with scoliosis. As of right now it has been five and a half months since my last x-rays and I can get more x-rays after it's been six months. Only two more weeks! (Which will be spring break also!!!) I'm not sure if we will actually get x-rays then since the next x-rays I get have to be within three months of when I have surgery, if I do have surgery that is.
Just in the past couple days I started having some odd pain in my back on my lower right side. I was at work when it started so I couldn't really sit down. The pain started dull and got sharper the more I tried to just walk it off. This led to a tingly feeling in my right leg that wasn't unbearable but wasn't exactly pleasant either. The day after this happened I woke up with pain in my mid lower back right where my spine curves. It's been really tender to touch and when my mom looked at it she said their was a green bruise. This is odd because I was never hit or run into or anything that might cause a bruise on my back.
Today the pain has been even more sensitive and I've tried to look up if there are any ties between this bruise and my scoliosis but I haven't found anything. If any of you out there reading this know the answer, have scoliosis, or any comment at all (if there are any of you out there that is) please feel more than free to comment your advice or suggestions as to what might be the cause of my bruising.
Just in the past couple days I started having some odd pain in my back on my lower right side. I was at work when it started so I couldn't really sit down. The pain started dull and got sharper the more I tried to just walk it off. This led to a tingly feeling in my right leg that wasn't unbearable but wasn't exactly pleasant either. The day after this happened I woke up with pain in my mid lower back right where my spine curves. It's been really tender to touch and when my mom looked at it she said their was a green bruise. This is odd because I was never hit or run into or anything that might cause a bruise on my back.
Today the pain has been even more sensitive and I've tried to look up if there are any ties between this bruise and my scoliosis but I haven't found anything. If any of you out there reading this know the answer, have scoliosis, or any comment at all (if there are any of you out there that is) please feel more than free to comment your advice or suggestions as to what might be the cause of my bruising.
A Pain in the Back
About a year and a half ago I was diagnosed with Scoliosis. It's not uncommon, especially in teenage girls. It can be easily cured with a back brace, and life goes on. In my case it's not so simple. Unfortunately, I wasn't diagnosed early enough and I am done growing. As far as my last x-rays from September 2010, my highest degree is 45. Any degrees between 40 and 50 usually call for surgery. The big S word...I can't say I'm not scared. I'm scared out of my mind. Although there is no set date yet, I will be having surgery this coming summer (approximately 4.5 months).
It's just so much to think about...Since I am a junior in high school this means I must start thinking about senior pictures now, I have to think about talking to my boss since I will not be able to maintain my part time job for about 3-6 months after surgery (due to lifting restraints), I automatically start thinking about pain....I've always had a small threshold for pain. What is an emotional teenage girl to do?!
I think the worst might not even be the surgery. My mom isn't sure if she'll stay with me the entire week I'm in the hospital. My ex-boyfriend still promises me he'll be there, and I have plenty of friends who say they'll come and visit. Thinking about surgery right now I'm not scared of being alone afterward. I'm more freaked out by the thought of any complications during surgery. I try not to think about that though...
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| September 2010 X-Rays |
It's just so much to think about...Since I am a junior in high school this means I must start thinking about senior pictures now, I have to think about talking to my boss since I will not be able to maintain my part time job for about 3-6 months after surgery (due to lifting restraints), I automatically start thinking about pain....I've always had a small threshold for pain. What is an emotional teenage girl to do?!
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| September 2009 X-Rays |
I think the worst might not even be the surgery. My mom isn't sure if she'll stay with me the entire week I'm in the hospital. My ex-boyfriend still promises me he'll be there, and I have plenty of friends who say they'll come and visit. Thinking about surgery right now I'm not scared of being alone afterward. I'm more freaked out by the thought of any complications during surgery. I try not to think about that though...
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