Thursday, December 8, 2011

The Craziest Thing That Has Ever Happened To Me...

This is a really really long post... basically I had brain surgery because I had fluid on my brain. If you want ALL the details, keep reading. Also, I posted a picture of the incision on my head, don't look if you get sick.

1 month ago my world was totally rocked and not in a good way. This semester in school has been particularly intense. I have been taking 3 classes and working 2 internships 50 miles apart which means a TON of driving. Plus I have been so busy every weekend with no time to take a breath. Along with this crazy schedule I have been having headaches. They usually got worse throughout the day and by night I would be in a ton of pain and totally exhausted. No medication seemed to even touch the pain. The first of November, I had had enough so I went to the health center on My Campus. I don't really have insurance in CA but I can be seen at health services for $10. So I went in and talked with the Nurse Practitioner. She was going to treat me for migraines with headache medicine but because I have a crazy family history of Aneurysms and Brain Tumors she wanted me to get an MRI just be sure. Because I don't have insurance I was very hesitant to get the MRI, it was a lot of money and I would have rather gone on a cruise :) I scheduled the appointment for a few days later but I cancelled it because I wanted to wait on some lab results and not spend the money if something minor showed up. Nothing came back in the labs which shocked me because I had been so tired and I am usually always a little anemic. The NP was very persistent I get the MRI so I scheduled it and Meg went with me. I am so glad she was there. I had taken a xanax to relax me because I am a little claustrophobic. The NP left it up to the radiologist whether or not to do contrast and when I got there they told me I didn't need it. So when I was in the MRI I was surprised when they took me out and started an IV to do contrast. When I was done and had changed they told me the NP from the school was on the phone. I was slightly out of it when I took the phone. She was very nice and told me she was "very glad we did the MRI". I was like "Okay, ya me too" (still totally oblivious). Then she said they did find something. I was like "ya okay sounds good." And then I started to get it. They found something bad. She told me they had found "Fluid on the brain" and I needed to see a neurologist in the next few days and if this was left untreated, I could die. I told her I would talk to my parents and call her in the morning. I walked out to the waiting room, where my sister was waiting, and shook my head to tell her I wasn't ok. I still had to keep it together long enough to pay and walk out to the car.

When we walked out the door I lost it and just started to cry. I had no idea what all this really meant and I was totally drugged, adding to my confusion. We called my parents and the first thing my mom said was "we are flying you home tomorrow". We had to overnight the images to a Doctor my parents know in Utah to see if I need to take care of this now and if I was safe to fly. After we mailed the images and we went back to Meg's house I got the worst headache I have ever had and it didn't go away until Friday.

The next day was the longest day of my life! I just went about my usual Thursday activities by going to my internship. I told my director at Career services and she got very emotional. It was very sweet, she is not necessarily the emotional type. I was still in shock so I wasn't upset when I told her. After my internship, which was totally wasted because all I did that day was google hydrocephalus to find out what was going on, I went and hung out with Meg before I had to go to class. I was also waiting for DR in Utah to see the images and call my parents. Then I went to my first class and I love my professor in that class so I thought I would be upset when I told her but I was still in shock. She was very sweet and concerned. She even she kissed me on the checks! She is very motherly. By my 2nd class of the night, at 7pm, we still hadn't heard from the Dr. I was going crazy. Finally at 9pm CA time the Dr. called my parents and they called me to tell me he wanted me to get a lumbar puncture so they were flying me home in the morning. From that point on I kind of lost it. After class I had to tell my other professor what was going on and I totally lost it and was just sobbing. So embarrassing! Then I started yelling at everyone. My parents called me back and I was just yelling at them and then I yelled at Carin, which I feel terrible about because she was being so nice and even bought me a Christmas CD for my flight. I am jerk. By the time I got home, at 11pm, my head was still killing me and it was hard knowing that the pain was really pressure on my brain, I think it made it hurt worse. I had to hurry and pack for my 7am flight. I literally just threw everything in my suitcase. I am glad I actually packed decent things to wear!

When I woke up on Friday morning my head was still hurting and this was odd because I usually don't wake up with a headache. I think the added stress made the pressure worse. Carin took me to the airport and I made my flight. I was so worried about flying because I knew there were risks involved. I pretty much just waited for my head to explode. Luckily it didn't. Jessica picked me up with her kids and we went straight to American Fork hospital where I met my parents and had a lumbar puncture. I was really scared because anytime they stick a needle in your back, it can't feel good. But it actually wasn't too bad. The radiologist is in my parents ward and he was wonderful. We just chatted the whole time, I hardly noticed there was a needle in my back. After, he was really great and looked at the MRI with parents so they could see the Ventricles, which were/are HUGE. He removed 26cc of CSF but didn't expect me to get any relief. But about 2hrs later the most amazing thing happened... my headache was GONE! and it stayed gone for like 2 days. It was wonderful.

The Neurosurgeon was out of town so we had to wait until monday to see if he wanted to do surgery. It was a long weekend and everyone was just waiting. Monday came and we found out the Dr. wouldn't be back until Tuesday. Another long day of waiting and my headache had returned so it felt extra long. Finally on Tuesday the Dr called and said surgery would probably help and he could do it tomorrow. Finally the waiting was over and we could get a plan. My sister in CA really wanted to be here so her and her family got in the car and drove up that night. It was so great to have them here!

I checked in at 7am for surgery. They had ito draw labs and I had to give a urine sample. A little known fact about me is that peeing in a cup is super traumatic for me. I worried about it all night! Kind of a crazy thing to stress about the night before you are having brain surgery. But when I went in I was fine and gave them the sample. No problem, it was a miracle!

We were able to talk to the Dr before and he was really optimistic everything would be great and that this was the right decision. When I had talked to him on the phone he didn't make it sound like it was urgent but right before the surgery he said its a good thing we are doing this because the pressure would keep building and you never know when/what can push you over the edge and you can go into a coma and have brain damage. YIKES!! After he said that I felt at peace about the surgery. All my other options would have been risky and just delaying the inevitable surgery.

After the Dr. left I said good-bye to my parents. This was my 17th surgery. My mom said this is just like before except now I am bigger. She is a champ when it comes to this sort of thing. They wheeled me into the prep room and the Anesthesiologist came in. I had been having a lot of anxiety about seeing the operating room, not like it was my first time, but I was so nervous this time. I told the Anesthesiologist that and he gave me a shot of "Liquid Courage" and that is the last thing I remember. I woke up and I don't remember a ton because I had also made the Anesthesiologist promise I would not wake up in pain. Eventually I ended up in my room and my mom stayed with me the rest of the day. My sisters came down to see me with the Graham and Ava, 2 4-year olds in a hospital room isn't a good idea so they didn't stay long, plus I was pretty out of it.

When I woke up from surgery my right arm was throbbing which was weird, I had brain surgery not arm surgery. It was seriously the only thing that was hurting and none of the pain meds were helping. I barely knew I had had brain surgery because my arm was killing me! I had to prop it up on a pillow and keep a hot blanket on it. I had a few visitors including my brothers-in-law, Marty and Chris, they brought my laptop and set it up so I could watch a movie, I didn't but it was still sweet of them. Sleeping in the hospital is never great. They are always coming in to check vitals and I had to get up at least 20 times to go to the bathroom, no joke. Plus they put these annoying squeezing things on your legs to prevent blood clots. And then they took me for a CT-Scan at 1:00am. All of these equal no sleep.


Yikes! It looks worse than it is! My hair has already grown back like 1/2 in and you don't even notice is because my hair is so thick.

The next morning, Thanksgiving, the Dr came in and I told him there was still pressure in my head. He told me it would take time for everything to adjust. The CT-Scan showed everything was in place and so now I just had to give it time. He told me I could go home but I didn't see how that was possible because I felt so terrible. The nurses suggested I walk around and so when my dad got there we walked around. I was really drugged so this was really hard but I started to feel better and decided I could go home. I came home about 3:00 and my mom finished making Thanksgiving dinner and we ate about 6:00 that night. I didn't feel great but it was good to be home and spend Thanksgiving with everyone, especially Meg and Chris because they had driven so far. It was seriously one of the tastiest Thanksgivings I can remember.


Me and my great hat and cool sling made out of Penny's baby blanket, it worked like a charm

The next few days are a blur filled with lots of sleeping and pain meds. But basically, I wore a sling because my arm hurt so badly and my head hurt just like before the surgery, frustrating. By Saturday I felt good enough, on meds, to get a pedicure and go to dinner with everyone. I have continued to feel stronger every day and my mom took the staples out a week later and that helped. My head has continued to hurt off and on and some days worse than others. I have been reassured this is normal. I was able to finish my classes from here so I won't be behind when I get back. I have been in Utah for a month and I am going back to CA in 3 weeks. I hope everything is resolved by then. The Nurse Practitioner, at the neurosurgeon's office, is optimistic and has a few more things to try. Until then, I am just trying to hang in there!


At Dinner with the Family, trying to feel good!

7 comments:

sumthinghappened said...

It's good to get stories like this written down so you never forget the details. Suzy, you have been through so much. You are one amazing trooper! Love you!

Karly said...

Suzie!! I am so sorry this happened to you! There is nothing worse than a killer headache! I am glad u are doing better!

Shellie said...

I'm so glad that everything worked out and that you are starting to feel better!! Love you!

Cori said...

Suzy, that is so crazy. I cannot imagine how scary that must have been and you are such a brave, strong person. I am so happy that everything went well, though, and I really hope you are starting to feel better now.

Jana said...

You are such a trooper!! So glad everything went well and that you are starting to feel better! Hope you had a Merry Christmas!!

Natalie Speth said...

I'm so sorry you had to go through all of that, I had a pulmonary embolism 1 year ago and just reading your experience made my heart heart. Hope things keep improving!

Diane said...

Oh my Suzy, I'm so glad that everything went well in your surgery and hope everything gets better for you. You're awesome!!