Today was another great day at the Mayo. What an amazing place, I am so thankful for the opportunity to be seen by some of the worlds best doctors. Today, I saw an orthopedic surgeon about my scoliosis and the bony lumps that are on the first two ribs of my left rib cage. She was PHENOMENAL! She was so kind, gentle and actually had the time to address my concerns and questions. My Mom and I explained about our little incident yesterday with the neurologist and she actually was apologizing to my Mom and I! She even offered to have an appointment set up for me to see a pediatric neurologist tomorrow! After she took a bit of history of me and my scoliosis, she sent me to have x-rays of my neck. Yesterday, the neurologist was concerned about the curvature of my neck, but she said my scans looked good and everything was fine. She also suggested that the lumps on my ribs are due to the fact that the scoliosis has pushed my rib cage out, causing the bones to stick out as well. After that appointment, we went to go see the urologist for my frequent urination. He suggested that one of the tumors in my pelvis might be pressing on a nerve, which is causing my bladder to spam and then release urine when it isn't supposed to. Also, my brain could be making too much ADH (which makes you have to urinate), and if that is the case then that can be treated with medication. He set up an "extensive" test to measure the pelvic floor activity of my bladder.
Finally, after the urology appointment I went down to have an MRI. It lasted about an hour and a half, and it was absolutely BRUTAL to try and stay still. Near the hour mark, I started getting really uncomfortable and started squirming.
To all my Canadian friends, you have no idea how lucky we are to have free health care. We don't have to worry about paying outrageous costs for consultations and even for a simple blood test. Here, you have to pay for each individual hormone being tested. That's CRAZY!
I believe my Mom and I have made a new friend.... one of the guys who drives the shuttle back and forth from our hotel to the Mayo Clinic. Honestly, he kind of looks a bit like Santa Clause!!!. He is so funny, and is kind to everyone. He has actually given me a pet name... Smiley!
Oh! My Mom booked two seats on one of the local shuttle buses to go up to the Mall of America on Friday... I am SUPER excited about that!
My Mom and I have a bright and early day tomorrow, make sure to look out for my post!
Wednesday, July 20, 2011
Tuesday, July 19, 2011
My First Day!
Well, today was my first day of appointments at the Mayo Clinic. First, I saw Dr. Babovic (who was the genetics specialist) to discuss issues related to my NF. After my appointment, she said I was a rather "complex" case and was interested in how all of my test results turned out. Both my Mom and I decided to go ahead with some genetic testing. What this will do is tell us if my NF was due to a simple "mutation" of my chromosome 17, or if it was due to a deletion of a set of genes within the DNA of chromosome 17 (see image below).
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As you can see from this image, a piece of the chromosome is missing. Although this is rare (it only appears in about 2-4% of patients with NF), Dr. Babovic said considering the complexity of my case, it wouldn't be a huge surprise to her if my results showed a deletion of genes. This can later in life lead to problems such as heart disease. After we set up this test, she scheduled me for some blood work (which I ended up doing today). My growth hormone levels were checked to see if being on growth hormones had any effect on me, and my cortisol levels were also checked (cortisol is an important hormone during times of stress as it regulates many things like blood sugar levels and heart rate). When I had hormone testing last June, the results showed that my cortisol levels were "borderline low", so nothing was done about it. Dr. Babovic wanted to make sure that the levels didn't change. In addition to those hormones, my thyroxin levels were checked, as I am showing signs of not enough thyroid hormone being produced. In addition to the blood work, an MRI scan of my brain was scheduled for tomorrow, as was an appointment with a endocrinologist AKA a hormone doctor (whom I will be seeing later next week or sometime this week if they can squeeze me in).
After being thoroughly examined by Dr. Babovic, I went to go see the neurologist Dr. O'Neill. To be honest, I didn't really like him all that much. Although he answered a few of my questions, I kind of feel like a lot of loose ends were left untied. He suggested that the brain tumor that I have is in fact not an optic glioma like I was originally diagnosed with, but with a tumor called an astrocytoma. This is a very slow growing tumor that rarely becomes a problem. He also pointed out that on my MRI, my neck has an abnormal shape. Usually, people have a slight "C" curve in their neck, but mine is bent the other way. He believes that the abnormal curve could be putting pressure on the base of my brain, which is causing the headaches. Dr. O'Neill was a fantastic doctor, don't get me wrong but I felt like he wasn't totally committed to my case. At one point in time, he was called out of the room to attend to some sort of "emergency", and after that he seemed a little preoccupied. Depending on the results of the MRI, my Mom and I will decide if I want to go back to see him just to tie up some loose ends.
So tomorrow I will be seeing the urologist, orthopedic surgeon and will have an X-Ray done of my neck and an MRI of my brain. The results from all the testing should be done by about Thursday, so I will have more information to share then.
In the mean time, I am going to go relax and read a book. I hope everyone is enjoying my blog!
After being thoroughly examined by Dr. Babovic, I went to go see the neurologist Dr. O'Neill. To be honest, I didn't really like him all that much. Although he answered a few of my questions, I kind of feel like a lot of loose ends were left untied. He suggested that the brain tumor that I have is in fact not an optic glioma like I was originally diagnosed with, but with a tumor called an astrocytoma. This is a very slow growing tumor that rarely becomes a problem. He also pointed out that on my MRI, my neck has an abnormal shape. Usually, people have a slight "C" curve in their neck, but mine is bent the other way. He believes that the abnormal curve could be putting pressure on the base of my brain, which is causing the headaches. Dr. O'Neill was a fantastic doctor, don't get me wrong but I felt like he wasn't totally committed to my case. At one point in time, he was called out of the room to attend to some sort of "emergency", and after that he seemed a little preoccupied. Depending on the results of the MRI, my Mom and I will decide if I want to go back to see him just to tie up some loose ends.
So tomorrow I will be seeing the urologist, orthopedic surgeon and will have an X-Ray done of my neck and an MRI of my brain. The results from all the testing should be done by about Thursday, so I will have more information to share then.
In the mean time, I am going to go relax and read a book. I hope everyone is enjoying my blog!
Monday, July 18, 2011
Checking Out Rochester!
Today my Mom and I had the opportunity to tour the Mayo Clinic as well as some of the downtown area. We actually learned some pretty cool stuff and got to see a lot as well. From what we learned, the two brothers who founded the Mayo were amazing people. They gave so much not only to their profession, but to their community and the whole field of medicine.
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Me with a statue of the Mayo Brothers
The Mayo is an absolutely beautiful building. The floors and walls are all made of marble, and everything is so clean and shiny! It is so massive, it won't be too hard to get lost! The Mayo Building has 20 floors (with 10 being added on sometime in the future), and that is just one of at LEAST five! To give you guys an idea how big this place is, there are about 2016 doctors and physicians, 2789 resident/students and 27,544 "allied health staff"!!! Rochester has about the same population as Red Deer (about 90 000).... so 1/3 of the city is employed at the hospital!!!! WOW!!!
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Downtown was so nice! There are a lot of little shopping centers and restaurants to choose from! My Mom and I went to a little Italian place called Victoria's. Well, my Mom and I both agreed that the pizza we had there was the BEST pizza we had EVER had! It was so good!
When we were done touring downtown, we went back to the Mayo Clinic and checked in for my appointments tomorrow. If you guys are interested in what appointments I have I created a new page on my homepage called "My Appointments"!!!! I'm looking forward to seeing these doctors, but I'm also nervous to hear what they have to say!
The Mayo is an absolutely beautiful building. The floors and walls are all made of marble, and everything is so clean and shiny! It is so massive, it won't be too hard to get lost! The Mayo Building has 20 floors (with 10 being added on sometime in the future), and that is just one of at LEAST five! To give you guys an idea how big this place is, there are about 2016 doctors and physicians, 2789 resident/students and 27,544 "allied health staff"!!! Rochester has about the same population as Red Deer (about 90 000).... so 1/3 of the city is employed at the hospital!!!! WOW!!!
Downtown was so nice! There are a lot of little shopping centers and restaurants to choose from! My Mom and I went to a little Italian place called Victoria's. Well, my Mom and I both agreed that the pizza we had there was the BEST pizza we had EVER had! It was so good!
When we were done touring downtown, we went back to the Mayo Clinic and checked in for my appointments tomorrow. If you guys are interested in what appointments I have I created a new page on my homepage called "My Appointments"!!!! I'm looking forward to seeing these doctors, but I'm also nervous to hear what they have to say!
Sunday, July 17, 2011
Rochester!!!
WOO HOO!!! My Mom and I have made it safely to Rochester, and are just settling into our room. The flights were good, and we didn't have any problems with our flights or bags.
We have met some fabulous people so far, and they have really made us feel welcome in the USA. First, we met a young guy who was a maintenance worker in the Minneapolis airport who was fascinated with our "accents". He thought it was funny how we call the bathroom "washroom" and then he threw out the "typical Canadian saying... "eh!!". Then we met two lovely ladies Connie and Jody who were on the same flight as my Mom and I to Rochester. They were so helpful in telling us where to go for good food, how to get to the Mayo, extra things to do in my spare time and so on. Oh and also when we were waiting for the shuttle to pick us up from the Rochester airport an older lady who would have been in about her 60's came up to my Mom and I and offered to drive us to where we needed to go. I just can't believe how many amazing people I have met so far... and my journey has just begun!!!
So tonight my Mom and I are going to go find somewhere to eat. The restaurant at the hotel is supposed to have very good food, and there is a little Italian restaurant a few blocks away that we have been told by quite a few people to check out.
The weather is hot here... a humid 100 degrees Fahrenheit (which is about 38-40 degrees Celsius).
Anyways, my Mom and I are about to check out the rest of the hotel. I'll make sure to write another post tomorrow!
We have met some fabulous people so far, and they have really made us feel welcome in the USA. First, we met a young guy who was a maintenance worker in the Minneapolis airport who was fascinated with our "accents". He thought it was funny how we call the bathroom "washroom" and then he threw out the "typical Canadian saying... "eh!!". Then we met two lovely ladies Connie and Jody who were on the same flight as my Mom and I to Rochester. They were so helpful in telling us where to go for good food, how to get to the Mayo, extra things to do in my spare time and so on. Oh and also when we were waiting for the shuttle to pick us up from the Rochester airport an older lady who would have been in about her 60's came up to my Mom and I and offered to drive us to where we needed to go. I just can't believe how many amazing people I have met so far... and my journey has just begun!!!
So tonight my Mom and I are going to go find somewhere to eat. The restaurant at the hotel is supposed to have very good food, and there is a little Italian restaurant a few blocks away that we have been told by quite a few people to check out.
The weather is hot here... a humid 100 degrees Fahrenheit (which is about 38-40 degrees Celsius).
Anyways, my Mom and I are about to check out the rest of the hotel. I'll make sure to write another post tomorrow!
Friday, July 15, 2011
Anxious, excited, worried and so much more
Well, it's official..... my Dad (and brother) are driving my Mom and I to Calgary tomorrow afternoon, as we have an early flight on Monday morning and didn't want to be getting up at 4 am!!!!
These past few days have been a bag of mixed emotions for me, and to be honest I just don't know how I'm "feeling" right now. Don't get me wrong, I am definitely excited for this trip, but I"m also scared, nervous and anxious! I want some answers for all the unanswered questions I have, I want to be "fixed". I know I cannot be cured of my NF, but I just want relief of some of the symptoms! But in the same breath, I am so excited to get answers and I will be happy if they tell me my headaches (and other symptoms) are not able to be cured or fixed. What I mean by this is this trip is almost like closure in some way, because we are going to the top doctors who are educated thuroughly on NF (and that's a change!) I am actually so nervous/excited/anxious that I only slept 5 hours last night..... EEK!
This morning the Mayo Clinic called my house to confirm that we were still coming on the 17th. They informed me that I will have 3 appointments on Tuesday, 2 on Wednesday and 3 on Thursday! I can't believe that in the first 3 days I will have seen seven doctors already (I still don't know which doctor I an seeing on which day, so I'll keep you guys posted).
Lastly, I want to thank everyone who has been there for both me and my family in the past few weeks. All of your words of encouragement have meant a lot to me.
I"ll write another post once I get to Rochester, but for now I hope everyone has a great day!!!!
These past few days have been a bag of mixed emotions for me, and to be honest I just don't know how I'm "feeling" right now. Don't get me wrong, I am definitely excited for this trip, but I"m also scared, nervous and anxious! I want some answers for all the unanswered questions I have, I want to be "fixed". I know I cannot be cured of my NF, but I just want relief of some of the symptoms! But in the same breath, I am so excited to get answers and I will be happy if they tell me my headaches (and other symptoms) are not able to be cured or fixed. What I mean by this is this trip is almost like closure in some way, because we are going to the top doctors who are educated thuroughly on NF (and that's a change!) I am actually so nervous/excited/anxious that I only slept 5 hours last night..... EEK!
This morning the Mayo Clinic called my house to confirm that we were still coming on the 17th. They informed me that I will have 3 appointments on Tuesday, 2 on Wednesday and 3 on Thursday! I can't believe that in the first 3 days I will have seen seven doctors already (I still don't know which doctor I an seeing on which day, so I'll keep you guys posted).
Lastly, I want to thank everyone who has been there for both me and my family in the past few weeks. All of your words of encouragement have meant a lot to me.
I"ll write another post once I get to Rochester, but for now I hope everyone has a great day!!!!
Sunday, July 10, 2011
Wow!
I just can't believe that I am going to be leaving in a weeks time! I am so excited to finally be going to Rochester Minnesota (after much planning and anticipation!)
I will try and keep this blog updated as much as I can. If and when there are days that I'm not well enough to blog, I will get my Mom to do some posts for me! Hopefully I won't need her to do it though! Also, once I know some sort of "schedule" for which doctor I will see on which day, when I'm getting tests/scans/blood work etc I'll make sure to post it for you guys!
I want to thank everyone for being there for me not only in the past few months, but in the past few years as well. Because of some very special people (you know who you are), I have finally accepted NF as part of me, and I no longer want to hide it. I used to be so afraid that people would think I was some sort of "freak" and once they figured out I had this disorder, they wouldn't want to be friends with me anymore. I know that might sound cheesy, but high school can be a mean place. I've seen kids get pushed around because of their "differences". Now, I KNOW that my NF makes me who I am, and its allowed me to grow up to be the person that I am. I want to be able to help sick kids, and I also wanting to raise more awareness for NF. Most of you have probably never even heard of Neurofibromatosis until you met me, and I want to be the one to change that. Someday, NF WILL be a commonly known disorder!!!
I will try and keep this blog updated as much as I can. If and when there are days that I'm not well enough to blog, I will get my Mom to do some posts for me! Hopefully I won't need her to do it though! Also, once I know some sort of "schedule" for which doctor I will see on which day, when I'm getting tests/scans/blood work etc I'll make sure to post it for you guys!
I want to thank everyone for being there for me not only in the past few months, but in the past few years as well. Because of some very special people (you know who you are), I have finally accepted NF as part of me, and I no longer want to hide it. I used to be so afraid that people would think I was some sort of "freak" and once they figured out I had this disorder, they wouldn't want to be friends with me anymore. I know that might sound cheesy, but high school can be a mean place. I've seen kids get pushed around because of their "differences". Now, I KNOW that my NF makes me who I am, and its allowed me to grow up to be the person that I am. I want to be able to help sick kids, and I also wanting to raise more awareness for NF. Most of you have probably never even heard of Neurofibromatosis until you met me, and I want to be the one to change that. Someday, NF WILL be a commonly known disorder!!!
Sunday, July 3, 2011
2 More Weeks!
So two weeks from now, I'll be leaving with my Mom to go to the Mayo Clinic! I'm definitely getting more nervous as the date approaches for my first appointment, but I'm also getting more and more excited! We fly out on the 17th (of July), and my first appointment is on the 19th. I'll be seeing a geneticist who specializes in NF, and from there we will have all of our other appointments, tests, scans etc booked.
I'm supposed to see a neurologist, endocrinologist (hormone doctor), orthopedic surgeon, urologist, gynecologist, geneticist and a general practitioner.
We're all crossing our fingers that we'll find some kind of answer to my headaches and other health issues, and if there are no answers, we're just looking for some kind of closure!
I'm looking forward to keeping this blog, and I hope you all will enjoy it!
I'm supposed to see a neurologist, endocrinologist (hormone doctor), orthopedic surgeon, urologist, gynecologist, geneticist and a general practitioner.
We're all crossing our fingers that we'll find some kind of answer to my headaches and other health issues, and if there are no answers, we're just looking for some kind of closure!
I'm looking forward to keeping this blog, and I hope you all will enjoy it!
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