For one of the first times in my life I am trying hard to wrap my mind around the information we received yesterday at the Chiari Institute. First of all, I was feeling a little out of place once we finally got there. Let's face it ~ there are many people who are worse off than me. I work full time and although it might be a little hard at times, I still manage to run a 5K a couple of times a week ~ definitely NOT the picture of someone in critical condition.
The first person I saw during my stay at the Chiari Institute was a nurse. She spent an hour with me doing a full medical history work up on me. Next, I spent time with a neurologist, who after examining me, wrote me some scripts for some high powered medication should the need arise to take them. Then he explained that someone who is very highly skilled at determining if someone has tethered cord syndrome would be looking at my spinal MRI and then crunch some numbers to determine if I had it or not. I kind of nodded politely when he was telling us all of this information. I had been tested for this and wasn't really showing many signs that I might have it ~ so I wasn't overly concerned. We then had a break until 4pm when we would meet with the neurosurgeon, Dr. B. It was lunch time so we walked down the hill to a cute Italian bistro for a bite to eat.
The day was going good so far, we hadn't learned anything new, but it was extremely comforting to be talking with the chiari experts about my symptoms and condition. We were busy eating lunch when I got a call on my cell phone from Dr. B's assistant ~ she sounded urgent on the phone ~ she asked where we were ~ they needed us NOW! So, we paid the bill and headed uphill to the institute. It was 1:30 and Dr. B was ready to see us. We were thinking, this is great news, he's early and we will be getting out of here and on our way back sooner than expected. I was so not prepared for what came next.
Next thing I knew, I was meeting the world renowned Dr. Bolognese. I liked him immediately, he was smart and witty, yet professional. Then, we realized that we were headed up Shit Creek ~ He proceeded to tell me that I am basically a "triple threat" ~ not only do I have a significant Chiari Malformation (yes ~ I already knew that!), but I have Ehlers Danlos Syndrome and Tethered Cord. We both looked at one another, eyes wide open, feeling like we just had the wind knocked out of us. Then Dr. B told us his surgical plan for me was to do THREE surgeries ~ not one, but THREE!
The good news ~ I am trying to look at the positive side of this ~ is that I am in no immediate danger of permanent damage. The ball is in my court ~ more like an elephant than a ball. It's going to take some time for me to digest this new information. So ~ we continue to play the waiting game ~ all the facts are on the table ~ I am praying that I will get a clear sign so that I know when the time is right to get started on the surgeries. Where are those $%^&*$%^#$ paddles when you need them?!?
The first person I saw during my stay at the Chiari Institute was a nurse. She spent an hour with me doing a full medical history work up on me. Next, I spent time with a neurologist, who after examining me, wrote me some scripts for some high powered medication should the need arise to take them. Then he explained that someone who is very highly skilled at determining if someone has tethered cord syndrome would be looking at my spinal MRI and then crunch some numbers to determine if I had it or not. I kind of nodded politely when he was telling us all of this information. I had been tested for this and wasn't really showing many signs that I might have it ~ so I wasn't overly concerned. We then had a break until 4pm when we would meet with the neurosurgeon, Dr. B. It was lunch time so we walked down the hill to a cute Italian bistro for a bite to eat.
The day was going good so far, we hadn't learned anything new, but it was extremely comforting to be talking with the chiari experts about my symptoms and condition. We were busy eating lunch when I got a call on my cell phone from Dr. B's assistant ~ she sounded urgent on the phone ~ she asked where we were ~ they needed us NOW! So, we paid the bill and headed uphill to the institute. It was 1:30 and Dr. B was ready to see us. We were thinking, this is great news, he's early and we will be getting out of here and on our way back sooner than expected. I was so not prepared for what came next.
Next thing I knew, I was meeting the world renowned Dr. Bolognese. I liked him immediately, he was smart and witty, yet professional. Then, we realized that we were headed up Shit Creek ~ He proceeded to tell me that I am basically a "triple threat" ~ not only do I have a significant Chiari Malformation (yes ~ I already knew that!), but I have Ehlers Danlos Syndrome and Tethered Cord. We both looked at one another, eyes wide open, feeling like we just had the wind knocked out of us. Then Dr. B told us his surgical plan for me was to do THREE surgeries ~ not one, but THREE!
The good news ~ I am trying to look at the positive side of this ~ is that I am in no immediate danger of permanent damage. The ball is in my court ~ more like an elephant than a ball. It's going to take some time for me to digest this new information. So ~ we continue to play the waiting game ~ all the facts are on the table ~ I am praying that I will get a clear sign so that I know when the time is right to get started on the surgeries. Where are those $%^&*$%^#$ paddles when you need them?!?
