Once I came home from school yesterday, I greeted my mom as I walked in the front door. She replied with, "Someone from Mayo called, you need to call them back." I turned to my friend in confusion. Why would they need ME to call them, usually my mom handled the phone calls. Feeling very anxious about what they could be calling me for, I picked up the phone and dialed the number my mom wrote down. I found out right away it was the orthopedic surgeon line, but I was put on hold for a very long time. So long that I think they had forgotten about me. I stayed on the line and grabbed my cell phone and called the same number and got through right away. So much for waiting 20 minutes!
It was a mandatory phone call, reminding me of my upcoming surgery the 29th. Reminding me I had to be there the 28th for blood tests, urine tests, MRIs, x-rays, meeting with the surgeon, etc, etc. Here came the unexpected news: I had to be there the 27th to meet with yet another doctor. This one being a specialist on the spinal cord. He will be assisting during the surgery. I assume because of the myelomalacia on my spinal cord, which they found in July when I was first scheduled to have surgery.
My biggest fear is that the myelomalacia has gotten worse, or that it will prevent me from being able to have surgery to correct my scoliosis, a second time. Having it cancelled the first time was a similar feeling to having Christmas cancelled. I can't put the dissapointment, sadness, and fear into words that anyone will understand.
Next week I meet with my principal and counselor to figure out what we'll do my second semester of my senior year if I have surgery and have to miss a month or more of school. Being a senior in high school, my biggest goal right now is to graduate. Which is the main reason we were going to have surgery in the summer: so I wouldn't miss school, and it wouldn't interfere with anything important.
I'm praying for the best for myself. I have a great support team, and I have something that not many others can say they have. My best friend is having surgery on her nose 10 days before my surgery to correct her deviated septum. We both support each other, share our concerns and our hopes. Best friends do everything together: even have surgery. Along with my best friend, her family has been great support, so has my boyfriend and his family, and even greater my own family. Whatever happens, I do know I'll have lots of people if I need anything.
Thursday, December 8, 2011
Tuesday, August 23, 2011
No, just because I have nerve damage to my bladder does NOT mean I pee myself a little everytime I sneeze
It's been so long since I posted and I decided it's time to update all of you that follow my blog! I had two tests on my bladder August 10th and I met with my urologist in Rochester, Dr. Douglas Husmann, the next day. These were not tests I was looking forward to! I was surprisingly much more nervous to have these two tests performed than I was to have major back surgery! I suppose you can chalk that up to all the time I had to mentally prepare myself for a spinal fusion, and the lack of time I had to wrap my head around the idea that there might be something wrong with my bladder.
The first test was a VCUG, or a urinary x-ray. Going into this test my stomach was in knots and I thought I would pee myself from nerves (no pun intended). The technician who did my test was more than awesome! He had a great attitude and was sorta goofy but it helped lighten the mood. The first thing they did was get x-rays of my bladder and kidneys, which by now x-rays are something of regular occurrence in my life so that was the easiest part of the day! After that they took me into a small room and put me on a weird table and we waited for what seemed like hours for the female catheter team to come. Once they were there technician and his intern left the room. The nurse Jess stayed to let me squeeze her fingers!
Just a warning, but I'm not going to hold back on anything in the next few paragraphs so if you are extremely squeamish I would advise you to hire someone else to read the rest for you and then have them tell you what happened in less grotesque terms.
The nurse had to tell me several times to relax my legs, but come on! If there was a stranger with a catheter telling you to relax I doubt you would!! I didn't have to hold Jess's hand but I did let out a few whimpers. Having a catheter in is the weirdest feeling! I suppose having any foreign object in your body is weird feeling though. Once that was in they drained my bladder and let the guys come back into the room. The technician was shocked I wasn't crying at this point (apparently most women cry when catheters are inserted?) and decided to congratulate me by getting down on his knees and making rock on signs and calling me a 'superstar'.
After this the test went pretty well! They filled my bladder as full as it could go with sterile water and dye. I was supposed to tell them when I got the urge to pee like I've never had to pee before. Or in the technician's words, "when it was time to stop the bus and pee in the corn field". He said he would probably push me even after I said it a couple times, just because they were watching my bladder fill with water on a monitor so he could see when it was actually as full as it could possibly be.
I was trying to be brave and they decided on their own they would stop filling me up. Apparently my toes were curled and one of my legs was twitching so they knew I was pretty uncomfortable. They then took out the catheter, but I had to hold all the water and dye in me at the same time. The table was then turned upright so I was standing and they put a weird bag in between my legs. Scott, the technician, compared it to a female urinal. I was then told to pee, but let them know when I started and when I ended and they took x-rays all the while.
Scott also told me that 50% of people miss the bag when they start going and he said to just keep going if I missed. A sheet was laid on the ground, and all it was was water and dye anyways. I didn't miss, and once that was done I was pretty much done with that test. What was supposed to take about an hour and a half only took me about 40 minutes. Keep in mind I was in the adult urology department, not the childrens. So I was feeling pretty good at this moment. Scott told me that they usually waited at least ten minutes for most women to start peeing into the bag. Not because anything is wrong with them physically but because women are told a) they can't pee while standing b) they shouldn't pee in front of others and c) they should never pee in front of men! I was so darn uncomfortable that I really didn't care about any of the above!
Since the first test went so swimmingly I was feeling great going into the second test (which was a urodynamic study)! I was very let down when it got going though. During this test I was to sit in a chair that had the middle missing, and I had two catheters put in. One in my urethra and one that could either go in my butt or my baby making hole. Needless to say it was put in the second option. After that the technician attached electrodes to my butt (to measure the pelvic muscle activity). The catheter going to my bladder was bigger than the one during the VCUG, so it was very uncomfortable to say the least. At one point it even fell out and had to be put in a little more forcefully. This hurt very badly and everyone in the room was aware that I wasn't too happy. Once it was in again, she filled my bladder with water and I was told to tell her when 1) I had the first sensation that I had to urinate 2) when I had to pee so bad I would stop watching TV to go to the bathroom 3) when I had to pee very bad 4) when I had to pee so bad that I would stop at a gas station that I was next to even if I was only 3 blocks from home. When I would stop to tell her these she would ask me to cough at certain times and squeeze my butt muscles as hard as I could.
This all went well until I was done and had to try to pee through the catheter. This hurt so bad she took it out and let me pee on my own, which hurt even then. On the bright side though, I got to watch TV while she did the test! After this I was on my way home to relax! Or at least try to relax since I still had to wait for the results...
The next day we were up bright and early since my appointment was at 8 and we had to drive there! Once we got there, we didn't wait very long at all before we were called back. I was a bundle of nerves and I think my parents caught onto that very quickly. Unfortunately they did discover I have some nerve damage when they did the second test. To try to make this as easy to understand as possible, here's what I understood: The nerves in my brain are kinda like a stoplight. My bladder has sphincters and their job is to hold my pee inside and keep it from coming out when it's no supposed to. There are nerves that go from my spinal cord to my bladder, from my spinal cord to the sphincters, and there are nerves that go from my bladder to the sphincters.
What the machine picked up is that when I coughed the "stoplight" in my brain flicked from red to green, and it should have stayed red the whole time. What this means is there is some damage. I really can't remember exactly what the doctor said but I think he said the damage is on the nerves that go from the sphincters to my spinal cord. I'm not positive on this, but I know for sure there is noticeable damage. Thankfully, the damage isn't affecting any of my functioning so if I hadn't had the tests I never would have know about the damage. Unfortunately, if my spine keeps rubbing up against my spinal cord this damage could get worse. The urologist said that having scoliosis surgery could stabilize the damage which is a good thing! Either way if I have surgery in December, I have to go back in a year for the same two bladder tests, and again in three years to have another ultrasound on my kidney where they found the cysts.
I'm hoping that I will actually be able to have surgery this December on the 29th. I'll find out for sure on the 28th when I go up for another MRI and meet with the neurologist and orthopedic surgeon. It's amazing how all of these doctors have been communicating together just to make sure I'm going to be healthy and they're doing the best thing possible for me. Being in this limbo with surgery in the future, I'm not sure how to prepare myself. I was so ready to have it last time that I don't want to be crushed if it's canceled again in December but I'm praying for the best! I know God has a plan somewhere for me in this mess!
The first test was a VCUG, or a urinary x-ray. Going into this test my stomach was in knots and I thought I would pee myself from nerves (no pun intended). The technician who did my test was more than awesome! He had a great attitude and was sorta goofy but it helped lighten the mood. The first thing they did was get x-rays of my bladder and kidneys, which by now x-rays are something of regular occurrence in my life so that was the easiest part of the day! After that they took me into a small room and put me on a weird table and we waited for what seemed like hours for the female catheter team to come. Once they were there technician and his intern left the room. The nurse Jess stayed to let me squeeze her fingers!
Just a warning, but I'm not going to hold back on anything in the next few paragraphs so if you are extremely squeamish I would advise you to hire someone else to read the rest for you and then have them tell you what happened in less grotesque terms.
The nurse had to tell me several times to relax my legs, but come on! If there was a stranger with a catheter telling you to relax I doubt you would!! I didn't have to hold Jess's hand but I did let out a few whimpers. Having a catheter in is the weirdest feeling! I suppose having any foreign object in your body is weird feeling though. Once that was in they drained my bladder and let the guys come back into the room. The technician was shocked I wasn't crying at this point (apparently most women cry when catheters are inserted?) and decided to congratulate me by getting down on his knees and making rock on signs and calling me a 'superstar'.
After this the test went pretty well! They filled my bladder as full as it could go with sterile water and dye. I was supposed to tell them when I got the urge to pee like I've never had to pee before. Or in the technician's words, "when it was time to stop the bus and pee in the corn field". He said he would probably push me even after I said it a couple times, just because they were watching my bladder fill with water on a monitor so he could see when it was actually as full as it could possibly be.
I was trying to be brave and they decided on their own they would stop filling me up. Apparently my toes were curled and one of my legs was twitching so they knew I was pretty uncomfortable. They then took out the catheter, but I had to hold all the water and dye in me at the same time. The table was then turned upright so I was standing and they put a weird bag in between my legs. Scott, the technician, compared it to a female urinal. I was then told to pee, but let them know when I started and when I ended and they took x-rays all the while.
Scott also told me that 50% of people miss the bag when they start going and he said to just keep going if I missed. A sheet was laid on the ground, and all it was was water and dye anyways. I didn't miss, and once that was done I was pretty much done with that test. What was supposed to take about an hour and a half only took me about 40 minutes. Keep in mind I was in the adult urology department, not the childrens. So I was feeling pretty good at this moment. Scott told me that they usually waited at least ten minutes for most women to start peeing into the bag. Not because anything is wrong with them physically but because women are told a) they can't pee while standing b) they shouldn't pee in front of others and c) they should never pee in front of men! I was so darn uncomfortable that I really didn't care about any of the above!
Since the first test went so swimmingly I was feeling great going into the second test (which was a urodynamic study)! I was very let down when it got going though. During this test I was to sit in a chair that had the middle missing, and I had two catheters put in. One in my urethra and one that could either go in my butt or my baby making hole. Needless to say it was put in the second option. After that the technician attached electrodes to my butt (to measure the pelvic muscle activity). The catheter going to my bladder was bigger than the one during the VCUG, so it was very uncomfortable to say the least. At one point it even fell out and had to be put in a little more forcefully. This hurt very badly and everyone in the room was aware that I wasn't too happy. Once it was in again, she filled my bladder with water and I was told to tell her when 1) I had the first sensation that I had to urinate 2) when I had to pee so bad I would stop watching TV to go to the bathroom 3) when I had to pee very bad 4) when I had to pee so bad that I would stop at a gas station that I was next to even if I was only 3 blocks from home. When I would stop to tell her these she would ask me to cough at certain times and squeeze my butt muscles as hard as I could.
This all went well until I was done and had to try to pee through the catheter. This hurt so bad she took it out and let me pee on my own, which hurt even then. On the bright side though, I got to watch TV while she did the test! After this I was on my way home to relax! Or at least try to relax since I still had to wait for the results...
The next day we were up bright and early since my appointment was at 8 and we had to drive there! Once we got there, we didn't wait very long at all before we were called back. I was a bundle of nerves and I think my parents caught onto that very quickly. Unfortunately they did discover I have some nerve damage when they did the second test. To try to make this as easy to understand as possible, here's what I understood: The nerves in my brain are kinda like a stoplight. My bladder has sphincters and their job is to hold my pee inside and keep it from coming out when it's no supposed to. There are nerves that go from my spinal cord to my bladder, from my spinal cord to the sphincters, and there are nerves that go from my bladder to the sphincters.
What the machine picked up is that when I coughed the "stoplight" in my brain flicked from red to green, and it should have stayed red the whole time. What this means is there is some damage. I really can't remember exactly what the doctor said but I think he said the damage is on the nerves that go from the sphincters to my spinal cord. I'm not positive on this, but I know for sure there is noticeable damage. Thankfully, the damage isn't affecting any of my functioning so if I hadn't had the tests I never would have know about the damage. Unfortunately, if my spine keeps rubbing up against my spinal cord this damage could get worse. The urologist said that having scoliosis surgery could stabilize the damage which is a good thing! Either way if I have surgery in December, I have to go back in a year for the same two bladder tests, and again in three years to have another ultrasound on my kidney where they found the cysts.
I'm hoping that I will actually be able to have surgery this December on the 29th. I'll find out for sure on the 28th when I go up for another MRI and meet with the neurologist and orthopedic surgeon. It's amazing how all of these doctors have been communicating together just to make sure I'm going to be healthy and they're doing the best thing possible for me. Being in this limbo with surgery in the future, I'm not sure how to prepare myself. I was so ready to have it last time that I don't want to be crushed if it's canceled again in December but I'm praying for the best! I know God has a plan somewhere for me in this mess!
Wednesday, July 20, 2011
What the Next Few Months of My Life Will Consist of....
I just got home today and as of right now I have appointments to go
back to Rochester in August and December. Yesterday the neurologist
said the spot on my spinal cord is mainly just scarring and is caused
directly by my scoliosis. The scarring is right where my my spine
curves the worst. After an ultrasound on my right kidney they found
3-5 cysts on that one kidney but they are 'renal cysts' so they are
totally harmless and should go away on their own. The cyst on my ovary
is very tiny so that one we aren't worried about either.
When
I met with the urologist he said they are concerned because where the
scarring on my spinal cord could be causing nerve damage in my bladder
so I have to go back August 10th and 11th to have testing done on that.
Once we get the results on that we will know better what to do moving
forward.
Then December 28th I will go back to have a
check up with the neurologist and have another MRI done to see if the
spot on my spinal cord has changed at all. Dr. Kumar (the neurologist)
said he is positive we have nothing to worry about with future back
surgery or the spot changing but we need to make positive that it is
stable and not getting any worse. If we were to have surgery now the
screws they put in would block the spot from being viewed in an MRI
scan and we would never know if it was getting worse. I will also go
through all the pre-op work again on December 28th and if all results
are good I will have scoliosis surgery on December 29th! This is just a
tenative surgery date though, nothing is for sure until I have another
MRI!
Thank you for your prayers!! This has been a roller
coaster emotionally, mentally, and physically! I'm just very grateful I
have access to such amazing healthcare!
Tuesday, July 19, 2011
What a Curveball!
I was supposed to being in surgery mow but we've had an unfortunate change in plans. Yesterday during pre-op testing I was called back for a second MRI. My nerves immediately kicked in! I was so proud of myself, testing was going so well! I didn't even pass out during my blood tests (that is AMAZING for me!!!!) But during the second MRI they had to put a needle in so they could inject my veins with dye. I did not do well with this! It hurt much more than the previous needles and I started crying immediately! Shortly after the room started spinning and everything started changing colors! After a while (and the nurses scurrying around trying to help me!) I was feeling better and all I had left for the day was to meet with my surgeon and another assistant surgeon!
We waited over an hour in the waiting room to be called back and when we finally were called back, we found out why we had to wait so long...my surgeon had to consult with a neurologist because they found a spot on my spinal cord right above my lumbar curve and where they would fuse! They called the spot mild myelomalacia which is the softening of the bone. We had to cancel surgery for today because they're worried if they were to fuse my spine it would block this 'spot' from being checked in future MRIs. It could also cause motor nerve damage which we don't want!
They also found cysts on both a kidney and an ovary! Talk about news! I have an appointment this afternoon for an ultrasound of my kidney and an appointment tomorrow with a urologist. I was going to have to wait until August for an appointment with a neurologist to find out more about the spot on my spine but we got a call this morning and they are fitting us in today!! I am in the waiting room as we speak waiting to be called back! I am also seeing an adult neurologist which was controversial..
We waited over an hour in the waiting room to be called back and when we finally were called back, we found out why we had to wait so long...my surgeon had to consult with a neurologist because they found a spot on my spinal cord right above my lumbar curve and where they would fuse! They called the spot mild myelomalacia which is the softening of the bone. We had to cancel surgery for today because they're worried if they were to fuse my spine it would block this 'spot' from being checked in future MRIs. It could also cause motor nerve damage which we don't want!
They also found cysts on both a kidney and an ovary! Talk about news! I have an appointment this afternoon for an ultrasound of my kidney and an appointment tomorrow with a urologist. I was going to have to wait until August for an appointment with a neurologist to find out more about the spot on my spine but we got a call this morning and they are fitting us in today!! I am in the waiting room as we speak waiting to be called back! I am also seeing an adult neurologist which was controversial..
Tuesday, July 12, 2011
Surgery in one week! Scared? Absolutely NOT! :)
In exactly one week I will be under the knife, I'll have two rods on both sides of my spine, screws, hooks, and all sorts of needles and tubes coming from my body. I have the lowest tolerance for pain out of anyone I know, I have a phobia of needles, so how in the world am I not scared?! To anyone freaked out about having surgery of any kind my advice is to fill up your schedule with all the fun things you love to do, or things you've always wanted to do.
I've kept so busy, working lots, hanging out with all sorts of people, and spending time with my family. I can honestly say even though my summer is being cut short, it;s been the best summer of my life. I'm so ready to face my scoliosis head on. I have the most amazing support team anyone could ask for, and surprisingly I have the strength to face major surgery: something I never in a million years thought I would have.
Thank you to everyone that has listened to my story, whether in person or from my blog, caring bridge website, via other family members, anything, and everyone! You are all amazing and thank you for being here for me during this stressful, scary time. I will make sure to update my blog on my day of pre-op work for all of you followers! You can also check out my caring bridge website, which my mom will be updating when I have surgery and the week I stay in Rochester! God bless!
caringbridge.org/visit/lauradobrzynski
I've kept so busy, working lots, hanging out with all sorts of people, and spending time with my family. I can honestly say even though my summer is being cut short, it;s been the best summer of my life. I'm so ready to face my scoliosis head on. I have the most amazing support team anyone could ask for, and surprisingly I have the strength to face major surgery: something I never in a million years thought I would have.
Thank you to everyone that has listened to my story, whether in person or from my blog, caring bridge website, via other family members, anything, and everyone! You are all amazing and thank you for being here for me during this stressful, scary time. I will make sure to update my blog on my day of pre-op work for all of you followers! You can also check out my caring bridge website, which my mom will be updating when I have surgery and the week I stay in Rochester! God bless!
caringbridge.org/visit/lauradobrzynski
Sunday, June 19, 2011
Only 30 More Days!
Time is flying by! I can't believe that I only have a month until surgery!! My mom was definitely right about waiting until July! Originally I wanted to have my surgery on June 30th, which would be in only 11 days! This way I have about half my summer to enjoy before I have surgery!
I am determined to have as much fun before surgery as possible! I'm hosting a jewelry party with my best friend tomorrow and going Valleyfair on Thursday! I've also been working more than I usually do. I work at a cookie shop in the mall and I want as many hours as I can get before the 19th! Especially since I don't know when I can come back! My boss has been very helpful with arranging my schedule so I can get hours an still have time to enjoy my summer while I can!
I spend as much time as I can outside (although the weather hasn't been entirely cooperative). I know I won't be able to do too much after having surgery so I am taking advantage of the time I do have! It's almost like a 'live like you're dying' thing except I'm not dying! I figure why waste time lying around now when that's all I'll be able to do a month from now?
I haven't been worrying too much about surgery. I'm saving all that stress for later! It's really a scary thing to think about, so I try not to think about it as much as possible. When the time comes I'm sure I'll be ready! Or at least I hope so!
I have more summer to enjoy so I'll update all my supporters closer to my surgery date (July 19th)!!
I am determined to have as much fun before surgery as possible! I'm hosting a jewelry party with my best friend tomorrow and going Valleyfair on Thursday! I've also been working more than I usually do. I work at a cookie shop in the mall and I want as many hours as I can get before the 19th! Especially since I don't know when I can come back! My boss has been very helpful with arranging my schedule so I can get hours an still have time to enjoy my summer while I can!
I spend as much time as I can outside (although the weather hasn't been entirely cooperative). I know I won't be able to do too much after having surgery so I am taking advantage of the time I do have! It's almost like a 'live like you're dying' thing except I'm not dying! I figure why waste time lying around now when that's all I'll be able to do a month from now?
I haven't been worrying too much about surgery. I'm saving all that stress for later! It's really a scary thing to think about, so I try not to think about it as much as possible. When the time comes I'm sure I'll be ready! Or at least I hope so!
I have more summer to enjoy so I'll update all my supporters closer to my surgery date (July 19th)!!
Sunday, June 5, 2011
"You will be doing what exactly with my spine...?"
Needless to say this past week has been more full of drama than my past three years in high school! In my last post I mentioned how all went smoothly at my doctor's appointment at Mayo Clinic in Rochester. Unfortunately, it didn't go as well I thought it had. My parents (mainly my father) were very skeptical and basically scared shitless.
The main thing my surgeon discussed was the possibility of doing the surgery anterior (making the incision on the side) approach versus posterior approach (making the incision on the back). When they do anterior scoliosis surgery, it involves breaking one to two ribs, deflating a lung, and putting in a chest tube. With both surgeries they also put in a rod(s) and screws to hold the rod(s) in place. Only one rod can be put in when they do anterior, whereas with posterior two rods are used. Posterior surgery they strip the muscles off the spine, which isn't done during anterior, leaving the back muscles much weaker afterward in posterior surgeries. My surgeon explained how not many having scoliosis surgery can have anterior approach because it requires the major curve to be primarily in the lumbar region of the spine. That means that it isn't done very often. My surgeon guesstimated that she does 95% posterior and only 5% anterior, which is also a very scary thought. Just by looking at what I've said, anterior approach seems like a very drastic, and more complicated surgery than posterior. In ways, yes, it is. There are positives to it though. Though she did mention that although the first week after anterior surgery is much worse than posterior, after that recovery becomes much quicker with anterior surgeries than posterior.
Although I am a candidate for anterior scoliosis surgery, whether I can actually have that approach of surgery all depends on the results of my bend tests. A bend test is when they make you bend as far to each side as possible and they take an x-ray to see how flexible your spine is. If your spine isn't very flexible, you aren't a good candidate for anterior scoliosis surgery. Just knowing my body, I know that my lower back isn't very flexible at all! I've done yoga, and always realized that my lower back always felt stiff. Even tying my shoes can be difficult at time and puts a big strain on my lower back. As a family, we decided that posterior scoliosis surgery would be the best option for me.
The day after my appointment at Mayo, I had to work in the morning. On the way to work my mom told me her and my dad had discussed my situation the night before and decided (without consulting me) that I would be going to see a different doctor in Iowa City. I was crushed. I love my doctor in Rochester and fully trust her! Besides that, I was more than disappointed that my parents didn't include me in their discussion or decision to see another doctor. I stayed angry and bitter for a day or two before getting a good family friend to come over and talk with my mother and I about my parent's poor handling of the situation.
My mom admitted that she was scared and just really doesn't want to see me have such major surgery at a young age, but she came to the conclusion that this is reality and it has to be done. My dad was the main one making the decisions and he had only met this doctor once, besides that he already pre-judged this doctor and said he didn't like her well before even meeting her. My main concern was that, summer is the best time for me to have major surgery and they agreed on that. That being said, next summer I am going to New Orleans and it is the summer before I head off for college. It is my personal preference that I have surgery this summer, while I'm still home and in high school while recovering (since the recovery will last months). Waiting for an appointment in Iowa City would take months, and I know I didn't want to put myself through the stress of waiting to be told the same news.
In the end, my parents let me make the decision whether to go see another doctor in Iowa City or have surgery in Rochester. I chose to have surgery this summer in Rochester by my surgeon, Dr. Amy MacIntosh. This started a whole new adventure: calling Mayo Clinic to ask further questions before setting up my surgery date.
This brought on new stress and anxiety that I've never experienced in my life. I thought finals at the high school were stressful, but man were those a cakewalk compared to this!! We would call, and Jodi (the woman who runs the orthopedic surgeon appointment phone line) would either be unavailable or the line wouldn't be open. We waited two days by the phone for her to call back. Literally, every time the phone would ring we would jump up and run to the phone to see if the caller ID would say 'Mayo Clinic'. The first time she called back, we weren't home. My mother stayed home those two days but had to leave for a short period of time to pick me up from work and drop off my brother at baseball. By the time we got home to call back, the lines were closed leaving me in tears of frustration and my mother in utter disappointment.
Eventually (Friday the 3rd) we got a call back from an assistant of Dr. MacIntosh's to answer our questions and we got a call back from Jodi to set up the surgery. I wanted to have surgery in June, and the only date open was the 30th. This date didn't work because our insurance takes at least 6 weeks to process the information and get all the codes and whatever so that it's covered to some extent. Our family cannot afford to not have the surgery covered (it is a very expensive surgery and I will not mention the outrageous numbers, google can tell you how ridiculous it is).
I also couldn't get a date the beginning of July because my surgeon is on vacation then. So the soonest date we could get was the 19th of July and that is my surgery date! Not as soon as I had hoped but better than nothing. I can't even describe the wonderful feeling of relief now that it's scheduled and that anxiety is gone! Now I can focus on having a kick ass summer before I have surgery! I have to go in the day before for an MRI (to figure out if my back pain is due to something other than scoliosis, especially since scoliosis doesn't usually cause much pain and I've been dealing with a lot of that!), and to have more x-rays, meetings with the anesthesiologist, and photographs of my back, etc. I am more than ready for this and anxious to get this ball rolling!
Thanks to all of you who have been here for me during this especially stressful time! I have no idea what I would have done without you! Blessings!
The main thing my surgeon discussed was the possibility of doing the surgery anterior (making the incision on the side) approach versus posterior approach (making the incision on the back). When they do anterior scoliosis surgery, it involves breaking one to two ribs, deflating a lung, and putting in a chest tube. With both surgeries they also put in a rod(s) and screws to hold the rod(s) in place. Only one rod can be put in when they do anterior, whereas with posterior two rods are used. Posterior surgery they strip the muscles off the spine, which isn't done during anterior, leaving the back muscles much weaker afterward in posterior surgeries. My surgeon explained how not many having scoliosis surgery can have anterior approach because it requires the major curve to be primarily in the lumbar region of the spine. That means that it isn't done very often. My surgeon guesstimated that she does 95% posterior and only 5% anterior, which is also a very scary thought. Just by looking at what I've said, anterior approach seems like a very drastic, and more complicated surgery than posterior. In ways, yes, it is. There are positives to it though. Though she did mention that although the first week after anterior surgery is much worse than posterior, after that recovery becomes much quicker with anterior surgeries than posterior.
Although I am a candidate for anterior scoliosis surgery, whether I can actually have that approach of surgery all depends on the results of my bend tests. A bend test is when they make you bend as far to each side as possible and they take an x-ray to see how flexible your spine is. If your spine isn't very flexible, you aren't a good candidate for anterior scoliosis surgery. Just knowing my body, I know that my lower back isn't very flexible at all! I've done yoga, and always realized that my lower back always felt stiff. Even tying my shoes can be difficult at time and puts a big strain on my lower back. As a family, we decided that posterior scoliosis surgery would be the best option for me.
The day after my appointment at Mayo, I had to work in the morning. On the way to work my mom told me her and my dad had discussed my situation the night before and decided (without consulting me) that I would be going to see a different doctor in Iowa City. I was crushed. I love my doctor in Rochester and fully trust her! Besides that, I was more than disappointed that my parents didn't include me in their discussion or decision to see another doctor. I stayed angry and bitter for a day or two before getting a good family friend to come over and talk with my mother and I about my parent's poor handling of the situation.
My mom admitted that she was scared and just really doesn't want to see me have such major surgery at a young age, but she came to the conclusion that this is reality and it has to be done. My dad was the main one making the decisions and he had only met this doctor once, besides that he already pre-judged this doctor and said he didn't like her well before even meeting her. My main concern was that, summer is the best time for me to have major surgery and they agreed on that. That being said, next summer I am going to New Orleans and it is the summer before I head off for college. It is my personal preference that I have surgery this summer, while I'm still home and in high school while recovering (since the recovery will last months). Waiting for an appointment in Iowa City would take months, and I know I didn't want to put myself through the stress of waiting to be told the same news.
In the end, my parents let me make the decision whether to go see another doctor in Iowa City or have surgery in Rochester. I chose to have surgery this summer in Rochester by my surgeon, Dr. Amy MacIntosh. This started a whole new adventure: calling Mayo Clinic to ask further questions before setting up my surgery date.
This brought on new stress and anxiety that I've never experienced in my life. I thought finals at the high school were stressful, but man were those a cakewalk compared to this!! We would call, and Jodi (the woman who runs the orthopedic surgeon appointment phone line) would either be unavailable or the line wouldn't be open. We waited two days by the phone for her to call back. Literally, every time the phone would ring we would jump up and run to the phone to see if the caller ID would say 'Mayo Clinic'. The first time she called back, we weren't home. My mother stayed home those two days but had to leave for a short period of time to pick me up from work and drop off my brother at baseball. By the time we got home to call back, the lines were closed leaving me in tears of frustration and my mother in utter disappointment.
Eventually (Friday the 3rd) we got a call back from an assistant of Dr. MacIntosh's to answer our questions and we got a call back from Jodi to set up the surgery. I wanted to have surgery in June, and the only date open was the 30th. This date didn't work because our insurance takes at least 6 weeks to process the information and get all the codes and whatever so that it's covered to some extent. Our family cannot afford to not have the surgery covered (it is a very expensive surgery and I will not mention the outrageous numbers, google can tell you how ridiculous it is).
I also couldn't get a date the beginning of July because my surgeon is on vacation then. So the soonest date we could get was the 19th of July and that is my surgery date! Not as soon as I had hoped but better than nothing. I can't even describe the wonderful feeling of relief now that it's scheduled and that anxiety is gone! Now I can focus on having a kick ass summer before I have surgery! I have to go in the day before for an MRI (to figure out if my back pain is due to something other than scoliosis, especially since scoliosis doesn't usually cause much pain and I've been dealing with a lot of that!), and to have more x-rays, meetings with the anesthesiologist, and photographs of my back, etc. I am more than ready for this and anxious to get this ball rolling!
Thanks to all of you who have been here for me during this especially stressful time! I have no idea what I would have done without you! Blessings!
Friday, May 27, 2011
Surgery As Soon as 3 Weeks! WHAAAT!?!
Today's appointment at Mayo Clinic in Rochester went very well! They were actually ahead of schedule with both x-rays and appointment with the doctor so we were out of there before 2:20, which is when my appointment with Dr. MacIntosh was supposed to start!
The news is, my degrees haven't changed any in the past 7 months, which is good! But unfortunately, I will still be having surgery. To make this clear, I will have surgery now by choice, but there are reasons why I'm going to have it now, even though it's optional. Dr. MacIntosh told me that my curves would continue to slowly increase for the rest of my life, by approximately 1/2 a degree each year. That means in 20 years both my thoracic curve and lumbar curve would increase greatly, making surgery necessary then. 20 years from now, yes the medical technology might be more advanced, it might also not be. What is guaranteed is that recovery will be a hell of a lot easier now, since I am young and healthy. Yes, if I get surgery now I might need another in the far future, but I'm much better off doing the major surgery now at 17 rather than in my 40's.
We were going to make the appointment for surgery today, but after talking with the doctor and asking all our questions my parents and I both were a little overwhelmed with all the information so we will call on Monday or sometime next week to set up the surgery. Unfortunately, Dr. MacIntosh only has two openings in June left. Those would be the 16th and the 30th. It would be my preference to have it done on the 16th but we will just have to see how everything plays out. She said she's open almost all of July and August, I definitely want mine done in June though!
One thing I really like about Dr. MacIntosh is that if she schedules a surgery for one day, she will devote that entire day to that surgery and no other appointments, which would explain the wait for surgery and to get appointments with her! She is truly the most amazing doctor I've ever met! She never rushes appointments, she sits with you answering as many questions as you might have, she'll personally go get you information pamphlets, or in my case today and model of the spine with rods and screws in it, like what they use in the actual surgery!!
I'm very nervous thinking about how real all this is now!! Surgery in three weeks isn't that long and I'm sure the time will fly! Just standing there getting x-rays today I started shaking like a leaf and couldn't control myself. My nerves just took over!! It makes me worry I'll be a complete mess when the actual surgery comes! I'm ready to call Dr. MacIntosh's assistant now and set up that surgery so at least we get the date I want! I'll just have to wait until Monday though! Keeping my fingers crossed for the 16th to still be open when we call! Until then! Keep your fingers crossed for me!
The news is, my degrees haven't changed any in the past 7 months, which is good! But unfortunately, I will still be having surgery. To make this clear, I will have surgery now by choice, but there are reasons why I'm going to have it now, even though it's optional. Dr. MacIntosh told me that my curves would continue to slowly increase for the rest of my life, by approximately 1/2 a degree each year. That means in 20 years both my thoracic curve and lumbar curve would increase greatly, making surgery necessary then. 20 years from now, yes the medical technology might be more advanced, it might also not be. What is guaranteed is that recovery will be a hell of a lot easier now, since I am young and healthy. Yes, if I get surgery now I might need another in the far future, but I'm much better off doing the major surgery now at 17 rather than in my 40's.
We were going to make the appointment for surgery today, but after talking with the doctor and asking all our questions my parents and I both were a little overwhelmed with all the information so we will call on Monday or sometime next week to set up the surgery. Unfortunately, Dr. MacIntosh only has two openings in June left. Those would be the 16th and the 30th. It would be my preference to have it done on the 16th but we will just have to see how everything plays out. She said she's open almost all of July and August, I definitely want mine done in June though!
One thing I really like about Dr. MacIntosh is that if she schedules a surgery for one day, she will devote that entire day to that surgery and no other appointments, which would explain the wait for surgery and to get appointments with her! She is truly the most amazing doctor I've ever met! She never rushes appointments, she sits with you answering as many questions as you might have, she'll personally go get you information pamphlets, or in my case today and model of the spine with rods and screws in it, like what they use in the actual surgery!!
I'm very nervous thinking about how real all this is now!! Surgery in three weeks isn't that long and I'm sure the time will fly! Just standing there getting x-rays today I started shaking like a leaf and couldn't control myself. My nerves just took over!! It makes me worry I'll be a complete mess when the actual surgery comes! I'm ready to call Dr. MacIntosh's assistant now and set up that surgery so at least we get the date I want! I'll just have to wait until Monday though! Keeping my fingers crossed for the 16th to still be open when we call! Until then! Keep your fingers crossed for me!
Thursday, May 26, 2011
Can you say nervous!?!?
Tomorrow is my appointment in Rochester for x-rays and meeting with my surgeon! Needless to say I'm a little nervous! I'm used to getting x-rays here in town before going to Mayo Clinic. Then I know what my current degrees are before going to meet with my specialist/surgeon. This appointment I have no idea what my progress is now so I have no idea what to expect going up there tomorrow.
My dad and twin brother are also coming with. It will be nice having Jeff there. He's a really supportive brother and I love that about him! I'm a little worried about my dad meeting Dr. MacIntosh though. He's never met her and I really hope he likes her. It's rare for me to enjoy going to see a doctor, but I feel like I just clicked with Dr. MacIntosh. I want my dad to like her too, especially if she does my surgery. Speaking of which we will set up my surgery tomorrow so I'm pretty nervous about that. I hope we can schedule it as soon as possible so that I won't have a lot of time to worry about it in between this appointment and the surgery. I will make sure to update you guys after my appointment tomorrow! I want to thank all of you who have contacted me and wished me the best! My email is laura_dobrzynski11@yahoo.com if anyone has questions, comments, etc. I appreciate all of you followers and your prayers! Until tomorrow!
Wednesday, May 11, 2011
The Countdown Begins!
Only two weeks left until my appointment for x-rays with my surgeon! Time is flying by and I don't know how to feel about it! This past week has been a real wake up call for me. My twin brother broke his wrist at baseball practice and had to have surgery. Seeing him after surgery while he was waking up from the anesthesia made me imagine myself in his place, which I will be when I have surgery. The thought of having needles in my arm, feeling groggy, tired, and weak make me a little weak in the knees! My brother is very tough, and I'm pretty sure he can handle anything life throws at him. I, on the other hand, am a big baby and I'm okay with admitting that. I have a very, very small threshold for pain and a phobia of needles.
I know as my appointment gets closer nights are become much more difficult. I'm quick to stress and worry which makes this that much harder! This isn't even the surgery! I don't even want to think of what that will feel like... I have a great support team, as does my brother right now during his recovery, but regardless my nerves are starting to set in. I'm hoping the appointment goes smoothly and maybe we won't even have to schedule a surgery, but I really think the chance of that happening is very slim. Maybe it's just my nerves kicking in but I really feel like my curves have progressed. I can't wait to find out if they have! Maybe I'll turn this into a guessing game with my friends and see who's guess is closer! Anyone interested in this possible contest should comment!! In September of 2009 my thoracic curve was 30.6 and my lumbar was 36.9. In October of 2010 my thoracic changed to 31 (big progression right?!) and my lumbar went to a whopping 45 degrees. Let's make some fun out of my sucky situations! Anyone have any guesses what it might be now?!
I know as my appointment gets closer nights are become much more difficult. I'm quick to stress and worry which makes this that much harder! This isn't even the surgery! I don't even want to think of what that will feel like... I have a great support team, as does my brother right now during his recovery, but regardless my nerves are starting to set in. I'm hoping the appointment goes smoothly and maybe we won't even have to schedule a surgery, but I really think the chance of that happening is very slim. Maybe it's just my nerves kicking in but I really feel like my curves have progressed. I can't wait to find out if they have! Maybe I'll turn this into a guessing game with my friends and see who's guess is closer! Anyone interested in this possible contest should comment!! In September of 2009 my thoracic curve was 30.6 and my lumbar was 36.9. In October of 2010 my thoracic changed to 31 (big progression right?!) and my lumbar went to a whopping 45 degrees. Let's make some fun out of my sucky situations! Anyone have any guesses what it might be now?!
Wednesday, May 4, 2011
"No One Can Make You Feel Inferior Without Your Consent"
I have dedicated this blog to posts solely about my scoliosis. I haven't had a post in a while and some reoccurring events have led me to this point. Although, indirectly related to my scoliosis, this is important nonetheless. I am short. I'm 17 and only 4'11". Yes, part of my lack of height is due to my very curved spine, but I also have short parents.
For some reason, people seem to think this means I am a weak person and they can take advantage of me in whatever way they see fit. To this I strike back. I may be short but don't think you can pick fun or get what you want just because you are superior to me height-wise. If you really think you're that much better than people that you have to physically assert yourself over others, you obviously aren't better. Everyone deserves respect, regardless of their size, shape, color, etc.
This post is dedicated to everyone who isn't getting the respect they deserve. It's time to stand up for yourself. I certainly have, and yes I've been called out for it. Regardless, it was worth it. If people can't respect you for who you are and what you bring to the table don't waste your time on them! They don't deserve to be in your life! If people truly care for you, it will show. "No one can make you feel inferior without your consent."
For some reason, people seem to think this means I am a weak person and they can take advantage of me in whatever way they see fit. To this I strike back. I may be short but don't think you can pick fun or get what you want just because you are superior to me height-wise. If you really think you're that much better than people that you have to physically assert yourself over others, you obviously aren't better. Everyone deserves respect, regardless of their size, shape, color, etc.
This post is dedicated to everyone who isn't getting the respect they deserve. It's time to stand up for yourself. I certainly have, and yes I've been called out for it. Regardless, it was worth it. If people can't respect you for who you are and what you bring to the table don't waste your time on them! They don't deserve to be in your life! If people truly care for you, it will show. "No one can make you feel inferior without your consent."
Monday, April 18, 2011
Time is Moving So Fast!!!
I can't believe that in about a month I will have my next appointment at Mayo! Last time I checked I thought I still had a couple months! Not that I'm complaining. I would rather have all this done with and move on as quickly and swiftly as possible. I'm surprisingly still not nervous about having surgery at all. I am a little anxious to find out if and how much my scoliosis has progressed over the past year. Back pain has become such a daily issue that my heating pad is on on a nightly basis.
I've honestly been so busy with school lately that I've forgotten how fast this appointment is creeping up on me! I'm thankful for the distraction though, even if school itself is pretty hectic right now. Once this school year is over I'll only have one day of summer and the day after that will be spent in Rochester getting x-rays and consulting with my surgeon. I suppose it still seems so surreal that I would need surgery that it just hasn't sunk in yet. I've always been the healthy one of the family. I've never broken any bones or anything like that.
As much as I would like to say this surgery is not a big deal, it's a huge deal. I can't even imagine myself straight as a rod (literally), and not able to bend my back like I can right now. One of my biggest worries is that surgery will limit things I like to do right now like yoga. My worst curve is in my lower back so I should still have flexibility in my upper back. I'm sure once everything is done it will be nothing like I imagined it. That's usually how it goes.
I would like to thank everyone for the support I've gotten through this blog and through emails!! It's great learning about others who are going through the same exact thing I am. Your support means the world to me!!
I've honestly been so busy with school lately that I've forgotten how fast this appointment is creeping up on me! I'm thankful for the distraction though, even if school itself is pretty hectic right now. Once this school year is over I'll only have one day of summer and the day after that will be spent in Rochester getting x-rays and consulting with my surgeon. I suppose it still seems so surreal that I would need surgery that it just hasn't sunk in yet. I've always been the healthy one of the family. I've never broken any bones or anything like that.
As much as I would like to say this surgery is not a big deal, it's a huge deal. I can't even imagine myself straight as a rod (literally), and not able to bend my back like I can right now. One of my biggest worries is that surgery will limit things I like to do right now like yoga. My worst curve is in my lower back so I should still have flexibility in my upper back. I'm sure once everything is done it will be nothing like I imagined it. That's usually how it goes.
I would like to thank everyone for the support I've gotten through this blog and through emails!! It's great learning about others who are going through the same exact thing I am. Your support means the world to me!!
Wednesday, April 6, 2011
Is There Really No Simple Solution?
I usually don't have much back pain. If I do, I've found ways to manage it very easily. Lately, this proves to be a very different story. Last week I was having some pain in the middle of my back so I decided to do some yoga. Thinking I hadn't exercised for a while and my body was just telling me I needed to stretch, I did yoga for about an hour. It felt great to stretch out my back muscles! Unfortunately, when I woke up the next morning I was in a decent amount of pain. I used to just have pain in my lower back but now it's spread to my mid back and neck also.
Usually when this would happen I would heat up the gel compress but that doesn't do much for me anymore. I've also bought a big body pillow so I can have it against my back when I sleep. Although this wondrous pillow has made sleeping much more comfortable it hasn't done tons for the pain. Taking Ibuprofen is starting to become part of my daily routine. I haven't taken any in the past couple days though because it really doesn't help much. It might eliminate any pain I have for an hour or two but then it's back.
My mom has said that she could take me to the doctor but we both know that would be extremely pointless unless there's something else causing my pain (other than scoliosis). I have an appointment with my specialist/surgeon at the end of May and we can't get in any sooner than that. If my pain continues like this or gets worse I might consider seeing a doctor to see if something else is the cause. Life is way too short to spend hours having back pain, or any type of pain or illness for that matter. I'm so thankful for the advancement of medical technology and the wonderful doctors, nurses, surgeons, etc. that God has blessed us with! I'm just as thankful that in as soon as 2 to 3 months I will have a straighter spine, less pain, and I will be able to put this behind me!
Usually when this would happen I would heat up the gel compress but that doesn't do much for me anymore. I've also bought a big body pillow so I can have it against my back when I sleep. Although this wondrous pillow has made sleeping much more comfortable it hasn't done tons for the pain. Taking Ibuprofen is starting to become part of my daily routine. I haven't taken any in the past couple days though because it really doesn't help much. It might eliminate any pain I have for an hour or two but then it's back.
My mom has said that she could take me to the doctor but we both know that would be extremely pointless unless there's something else causing my pain (other than scoliosis). I have an appointment with my specialist/surgeon at the end of May and we can't get in any sooner than that. If my pain continues like this or gets worse I might consider seeing a doctor to see if something else is the cause. Life is way too short to spend hours having back pain, or any type of pain or illness for that matter. I'm so thankful for the advancement of medical technology and the wonderful doctors, nurses, surgeons, etc. that God has blessed us with! I'm just as thankful that in as soon as 2 to 3 months I will have a straighter spine, less pain, and I will be able to put this behind me!
Sunday, March 27, 2011
Looking For Answers
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.
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.
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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