Hello Dr Newton!

It's not everyday you receive a direct call from your neurologist! And today was that day.....

I had been recently talking to his nurse about when to schedule my yearly MRI scan. They wanted to see me this year and my last scan was after my December 2013 surgery. As many know after one or two surgeries your pockets are pretty empty. My goal was to schedule my scan in early 2015, but the nurse wanted to just double check with the doctor. Mainly this was due to the fact that I was suppose to have a follow up with him after surgery, but I cancelled it. I had all my surgery follow ups with my neurosurgeon, so why pay a $60 co-pay to be told the exact same thing.....right?!?!

Anyhow, back to the phone call......

Apparently they are doing a new study on certain brain tumors/cysts. As Dr Newton mentioned to me on the phone how very, very, very rare mine was. (I am sure my BP went up a bit when he said that) So rare that they wanted to go back and get all my pre-operative scans from different facilities. He asked if I personally had any of these. Hmmm......that was a big fat NO. I don't know many people that have copies of there MRI/CT scans. X-rays....maybe. I called my primary doctor and got all the info of where my scans (pre-op) were done. Now the rest is up to them......

I guess by the time I go back in early 2015 I will have an idea if my case was used! Too bad I can't get royalties out this!! Darn.....

Getting ready for surgery #5

After weeks of trying to get my surgery moved up it has been officially confirmed that my last surgery will be next Monday. Which is when it was originally scheduled for.....*sigh*. I had a feeling that would be the case. I'm still waiting on the time, but I assume since I had booked it weeks ago it will be early in the morning. 

For this they will be putting in a plastic piece that was made to fit exactly the size of the hole in my skull. They had 2 made so I wonder if I can take the other one home....hey, I paid for it! At least I won't have to worry about any ridges with this piece unlike the bone cement and titanium mesh from before. 

This recovery should be a lot easier since I will only have to be on IV antibiotics for one weeks after surgery instead of 6 to 7 weeks. I know my skin might take a little longer to heal this time because it is the 5th time it's been cut open. 

I'm more anxious than nervous about the surgery. I'll be praying that everything goes well and I have an easy recovery.

Bone Infection?

Two weeks after my surgery I had a follow up appointment with my neurologist. I was so excited to get my staples out and finally be able to wash my hair! He removed the wrap from my head and had just started to take a few staples out when I felt something dripping on my neck. He immediately said "Hold on. I'll be right back." I had a feeling that this was not good news. In the meantime my mom and I were trying to figure out what the liquid was that I felt on my neck. It was brown and didn't smell the greatest. A few minutes later my neurologist came back in and said he had just paged the neurosurgeon because it was clear I had an infection. I thought okay....infection. They're going to give me some antibotics and it will clear up. I can deal with that. My neurosurgeon walked in and looked at the back of my head. Yep....infected. He said:  "I have good news and bad news. The good news is that we can treat your infection through IV antibiotics for a couple of weeks. The bad news is that we're going to have to admit you tomorrow for surgery to remove the bone flap due to the infection."

I just went through 6+ hours of brain surgery and now I was going back into surgery. Yikes. And there was more bad news....it was a two surgery process. First to remove the bone flap, insert a picc line and be on IV antibiotics for 4-6 weeks. I would have to let the area heal without anything protecting the open part of my skull (the size of half dollar). And second surgery would be at the beginning of December to put in titanium mesh and bone cement.

Three surgeries in 6 months and I didn't have a choice. It had to be done.

We left the doctors office and called my father and a few close friends to fill them in on the news. Back to the hospital in morning!

Surgery Day 7.11.07

My surgery day had final arrived. As usual I had to be at the hospital around 4 or 5am with the actual surgery to begin around 8 or so. The prep for brain surgery takes a bit longer than a more standard procedure. This is mostly due to the fact that they have to shave parts of your head and attach probes to monitor brain activity. Of course this was something that was NOT mentioned prior. Therefore I had tears running down my cheeks as the nurse took a bic razor and shaved different parts of my head. I was determined to keep as much hair as possible! (Side note....this was the same time that Britney Spears had shaved her head, so I kept reminding the doctors and nurses to NOT go "Britney Spears" on me!)

After getting the IV all hooked up I waited for almost what seemed like 40 minutes before I was taken to the OR. I wasn't given any medication to make me more relaxed because there were additional probes and equipment they needed to hook up. Plus I had to be moved onto a special operating table. They notified me that they would inserting a catheter and a breathing tube. The breathing tube would be removed before I would be woken up in the middle of surgery so I could talk to the speech therapist.

*Note that most surgeries do insert a breathing tube, but because of the length of brain surgery (6+ hours) you can expect your throat to be sore and scratchy for the next day or two.

I do recall a few things when I was awoken in the middle of the procedure. The speech therapist kept calling my name and repeated her name to make sure I was aware of who she was. I was lying on my left side and she was pretty close to my face. I didn't notice anyone else in the room. Before she could say anything else I do recall mentioning that I was quite thirsty and would like a diet coke. I heard laughter from the others in the room. She proceeded to ask me the questions which we had gone over before. They also make you make faces and move your mouth and tongue. Again, this was a bit hard to do because your mouth is extremely dry. I'm not quite sure how long they kept me awake, but the overall surgery lasted about 6 1/2 hours.

Next thing I knew I was in the ICU (since they don't take you to the regular recovery area).

Prep time!

A few weeks before the surgery my neurosurgeon mentioned that TV One was looking for a candidate who would do pre and post interviews, as well as filming my actual surgery. Really? Me? Before I could even answer his question or even ask more questions my mother quickly jumped in and responded "NO." That was it. Although it would have been interesting to look back on it and have that documented for generations, I was DEFINITELY not in the emotional state to go through talking to a camera crew on multiple occasions. I guess this varies on the person, but I wanted control with what was being put out there. Not some third party.
Okay...now it was prep time. There was to do before surgery....EKG, blood work in case I needed a transfusion, meetings with a speech therapist. That's right...I was going to be only in "twilight" and not fully knocked out so I would be able to talk, which is common. Of course they wanted to stick to subjects that were neutral and wouldn't cause any emotional response. Makes sense.

One thing that I wish they had offered was patient support. You can talk to a nurse or doctor about expectations and outcome, but I wanted to talk to someone who had been through what I was going to go through. I wanted the REAL story. I did some online research, but I was scared to do too much and find something I really didn't want to see. Basically I was going into this whole thing blind and only had a casual idea of how things would turn out.

Ready or not....I had to go through it.

What's that on my MRI?

When you think of going to the doctor for a check-up you think the common things they check for: weight, temperature, and blood pressure. They look in your ears, nose and throat...maybe even check reflexes. And then in the case they can't find something wrong they revert to....the dreaded blood test!! (And yes, I dislike needles if you couldn't gather from my previous sentence).

 My case started off pretty similar, but my symptoms were not and had the doctor a bit puzzled. What were they you ask? Sweating. The strange part of it was my sweating was on one side of my body and not the other. Now if I was engaging in any type of physical activity I would sweat normally. If I was just sitting in a warm room and I would start to perspire....only on one side. Yep, I know it's very strange. Anyhow the doctor referred me to a neurologist who could do further testing to see what was causing this and if there was any treatment.

My first visit to the neurologist was very standard. We went over the same information and tests my regular physician did, but there was one additional part....a MRI. I was a bit nervous to be stuck in a tube where I couldn't move for 45 minutes and then on top of that have dye injected in the middle of the scan.....but I made it through! Now to wait until the radiologist read my scan and reviewed it with my neurologist. A few days later I finally received the call....."Overall everything looks standard and we don't see anything that would cause the perspiration issues." Dang. A dead end, but the words that followed that would change my life forever: "We do see a small blimp on your scan that looks like an enlarged blood vessel. We don't want you to worry, but we recommend following up with additional MRI scans every year or two just to keep an eye on it."

All that was back in 2002. Around the end of 2004 I would have another MRI scan from a different doctor (since I had moved from Cincinnati to Columbus). I have to admit I wasn't a big fan of his and when I got my second scan he basically just repeated everything I was told in 2002. To me that basically meant everything was fine. I went about the next three years like a normal mid-20 year old female and hardly thought about it until March 2007. I can't remember exactly what triggered it, but I went to my new doctor and filled her in on the details and how I was supposed to have follow up MRIs ever couple of years. I had my previous scans to show her and without hesitation the next thing I knew I was being sent to have an MRI with contrast. As usual I was more worried about the injection of the contrast rather than what they scan would show. A couple days later I was sitting in my cube at work and my cell phone rang. It was my doctor, not a nurse....my doctor. She shared the radiologists results. That small blimp that was presumed to be an enlarged blood vessel had doubled in size. Although it was still small (pea sized) the fact there was growth and it was around the area that controlled my motor function was extremely worrisome. As tears rolled down my cheeks the only question I asked was "What happens now?". Being very calm she replied "I'm referring you to the James Cancer Hospital. I'm going to have a nurse call and get an appointment setup for you."

Two questions came to mind: 1.) Could I have brain cancer? 2.) Was I going to die?