Here's My Story...



From:"Amy Jagemann" amy_jagemann@hotmail.com
Sent: October 7, 2003

Amy Jagemann I woke up one Saturday morning in February with a huge To Do list. With my wedding only 6 months away, the list was constantly growing. As I rolled over in bed early that morning, my head was aching. "Oh Man, I must have been clenching my jaw again during that night." That darn TMJ. I was tired of having headaches. I got up, took some Excedrin and went back to bed for awhile. An hour later, I knew that I had to get up and couldn't sleep the day away. With my head hurting, I got in the shower. After my shower, I laid back down in bed again to try to ease the pain in my head. Again, another hour later, I thought this was enough and had to get dressed and get going. I managed to get dressed and as much as I didn't want to, I laid back down. After about a half hour, I got up, walked downstairs and laid on the couch. My husband (fiancé at the time) fixed me some breakfast and I ate it on the couch. Then, I laid back down and thought I'd take a nap to try to sleep off the headache. A few hours later, I awoke and still had this headache. My neck was sore as well. Then, I started thinking something was wrong. I took my temperature, thinking maybe I had come down with something. Then, I was worried it was Meningitis. After a bit of researching on the internet, I retreated back to the couch where I spent the rest of the afternoon. Around dinner time, I woke up and was feeling a little better. So, my husband and I made dinner together.  We rented a movie and popped it in after dinner. A short time into the movie I had already fallen asleep, even though I spent the majority of the day sleeping.

We went to bed Saturday night and I thought, well, this will surely be gone in the morning and I'll be super efficient on Sunday and get done what I was going to get done today. Well, I awoke on Sunday morning, and, it was STILL there. I looked up at the ceiling in our bedroom and felt a strange sensation--almost a pressure, behind my eyes. I told my husband and he told me to get dressed, he got in the shower and he said we were going to the walk-in clinic.

We got to the clinic, they took my temperature and asked me if this was the worst headache I had ever had. "Ahh, yes, I think so?" All I knew is that I wasn't feeling well. The doctor came in and saw me. He looked at my eyes (optic nerve), checked my reflexes and asked if I woke up with any tingling or numbness

He went out, came back in, and said that they were going to take me to the ER by ambulance and started an IV. He said, it probably wasn't anything to be concerned with, but he didn't want me to have a stroke or anything. So, I was put on the gurney and waited for the ambulance to arrive. I remember sitting in the back of the ambulance and watching my husband follow us to the hospital. I didn't want to call my parents (I was only 23) yet and have them worry until we knew more of what was going on. At this time, we were in Colorado and my family was in Wisconsin.

There, the ER was full. We were the last ambulance they let arrive there. I got into a room and a dr. and nurse came in. They asked me some questions, started some pain medication in my IV and then ordered a CT scan. After the CT scan, I was taken back to the ER room. Shortly after, the ER doctor came in and told me they found bleeding on my brain and ordered an MRI. This is when I really started to get scared. What did that mean? What caused this? How can it be fixed? I had to sit there and wait until the MRI. Finally, I was taken down for the MRI. That was the first time I'd ever had an MRI. Not the best experience, to be lying there, cramped in this loud tube with a pounding headache! A neurologist came to see me after the MRI. He looked at me and said I looked great considering the amount of bleeding and swelling in my head. He said he would have expected to have seen some deficits. He explained that he didn't know what it was that was causing the bleeding, but that they'd look at me again in a month. So, I was admitted to ICU that evening and released the next day with limitations--no heavy lifting, etc. I had a follow-up MRI and appointment with the neurosurgeon a month later

I hoped and prayed that whatever was in my head had disappeared, but that wasn't the case. I also hoped that this thing wasn't an AVM, but rather a CM. I knew that an AVM was more dangerous and risky. My doctor said it didn't appear to be an AVM, but I would need an angiogram to confirm that. My husband and I made the decision to move back to Wisconsin the next month. So, I asked my doctor if we could wait with the angiogram until we got back to Wisconsin.  He said ok, but don't wait much longer than a month. I had an appointment set up to see a doctor at the University of Wisconsin-Madison upon our return to Wisconsin. Meanwhile, I was told if I got another headache like that one, to get to the hospital. So, with that, my husband and I went home and began to pack.

The packing continued as our move date approached. My husband took extra time off of work to pack. My sister flew out from Wisconsin to help pack and friends came over to help. With all this pulling together, we got everything packed and ready to go.

The Middle: Wisconsin

In April, we made the trip from Colorado to Wisconsin--both my husband and I driving a moving truck. I just prayed that I didn't get a headache during this trip.  We arrived in Wisconsin safely. Our families greeted us and we began the long process of unpacking.

It was about 3 weeks later when I went to see a doctor at UW-Madison. He told me the same things the doctor in Colorado told me: I needed an angiogram. We scheduled it for the June 7. We left and waited in anticipation of June 7, hoping to get more answers.

Meanwhile, I continued to work out of the house for the company I worked for in Colorado. I progressed with wedding preparations. On Saturday, June 1, my bridesmaids came over and we addressed the wedding invitations. After they all left, I wasn't feeling well and decided to lie down. A few hours later, my husband came in and woke me to go get some dinner. I sat up, went into the living room and got sick! I had a bit of a headache, but primarily was sick to my stomach. I was afraid I was coming down with the flu. My husband's sister had the flu and I thought I'd picked it up from her. So, I didn't do much the rest of the night. For the next 3 days, I couldn't eat/drink anything without it coming back up. On Wednesday night, I finally decided that this wasn't right and called my doctor in Madison. They called back and told me to come down the next day (it is a 3 hour drive). So, we made arrangements to make the trip the next day. For some reason, I packed as if we would be there for awhile. Thursday, we made the trip to Madison, where they did a CT scan and examined me. The doctor came back with the results and told me that "it" was bleeding again.

I was admitted that night to ICU and started on anti-seizure meds and steroids. The next day, I was to have my angiogram. Only now, the doctor decided I should have the angiogram, as well as a functional MRI. So, I was up early on Friday morning to have the Functional MRI (which was painless) and then the long awaited angiogram. Initially, they had a hard time getting the shunt into the artery and that was a bit painful. Finally, it was over and I was taken back to my room. The doctor was to come in that night.

Friday night my doctor came in and said that the results were inconclusive. He still didn't know if it was an AVM, cavernous angioma or a tumor. So, Saturday, I was taken down for chest x-rays (in the event it was a tumor, they were looking for the primary tumor). But, that came back okay. Saturday my doctor came in and said that he still wasn't sure what it was, but it measured 2.8cm x 1.7cm and he knew that whatever was in my head needed to come out. He explained he was planning surgery early next week to remove "it". He said he would be spending the entire weekend putting together a team of doctors and would map out the process to remove it.  (My CM was located deep inside my head. My doctor in Colorado said that "it" was inoperable due to it's location).

So, we called our families. By this time, I was feeling better. I think it had stopped bleeding. Sunday, my doctor gave me a pass to leave the hospital and my husband and I went out for dinner. I was scared to death about BRAIN SURGERY!! I had never had any sort of surgery before! Surgery was set for Tuesday!!

On Monday, both our families made the trip to Madison. I spent the majority of the day on the phone with relatives and friends, explaining what was going on. Prayer chains were started all over. Monday night we all ordered dinner in and ate together in the hospital. Then, the doctor came to talk to all of us about the surgery.

After everyone left on Monday night, my husband and I talked for awhile. Then, I said some prayers and tried to sleep. I was scared stiff. How was I supposed to sleep!!

The Surgery: Wisconsin

Finally, Tuesday morning came and I showered and used my "special" shampoo.

All I wanted was for noon to roll around, them to come get me and get "this" over with! I was a complete nervous wreck!

Finally, it was time and they came to wheel me out of my room and I just started crying! I hugged my family and my husband came as far as he could with me. Then, I was wheeled into the pre-op room. I remember nurses talking to me and by this point I was just shaking! Finally, the anesthesiologist came over and asked if I wanted a "happy cocktail"-Yes, please--something! He started that and I was feeling better. Then, they came to take me into the operating room where Dr. Robert Dempsey would perform the procedure. I remember just a little of that room, and I remember them getting me ready. Next thing I remember is waking up in the ICU and my wrist hurting from the line they had put into my artery. They continued to run Neurological exams on me, but because of my wrist hurting, I wasn't able to squeeze equally as hard. I just wanted that thing out!

I spent the night in ICU, most of which is fuzzy. I remember saying good bye to my husband's family and they couldn't believe I was smiling and waving good bye to them. I remember having to do breathing exercises during the night because my temperature was rising. I was so tired that I just wanted to sleep. And, I was getting hungry. I was finally allowed to have ice chips. I also remember that my throat was very sore and my lips were chapped. The next morning, I wanted that stupid catheter out and I wanted to use the restroom. Well, I got out of bed and my IV friend and I used the restroom. It was this day that I was moved out of ICU into my own room! I was still tired at this point. I was talking and moving around a bit but tired easily.

The next day, physical therapists came to look at me. They concluded I was okay and didn't need any physical therapy.

I was released from the hospital on Friday. We drove home and I just wanted to sleep. I was so tired. The next morning, after my shower, I was exhausted!

During my recovery, I was on Dilantin for preventative reasons (though, I had never had a seizure). I moved forward with planning my wedding and took frequent naps. I scheduled an EEG in July before the wedding, hoping to get off the medicine before our wedding. I was devastated when the results came back with some abnormal activity! But, in the whole scheme of things, this wasn't too bad.

I continued to recover and get stronger. However, I still tired easily. At the time of my surgery, I was in between jobs, so while I was recovering, I continued interviewing and searching for a job! I had another EEG in November, right before my husband and I took our honeymoon. But again, it came back abnormal. I really wanted my life to get back to normal. I couldn't wait to get a job and get into routine. I accepted a job requiring me to drive 1.5 hours each way! I did this, but soon realized, I "bit off more than I could chew" and continued looking for another job. I accepted a much better position in May.  I went off all my medications in February with no problems! In July, I started grad school and continued working full-time.

I have been going to school and working full-time now for 4 months now.  I still struggle with fatigue, but feel a lot of it is due to my lifestyle and the hours I keep.

Remember, things can return close to normal following this ordeal! Be strong, push yourself and have faith!

Thank you for reading.

Update January 13, 2008

Since writing the story and now 5 ½ years since my surgery, I have graduated with my Master’s Degree (Master of Business Administration, May 2006). I also gave birth to a healthy daughter in September 2006. I had a natural, vaginal delivery with no complications. She is now a year and a half old. In my career, since surgery, I’ve been promoted three times. My husband and I have built a house, doing a fair amount of the work ourselves (moved in June 2006). In 2007, our lives changed when I cared for and supported my mom and family during surgery and treatment of pancreatic cancer. My mom is doing well to date and remains cancer-free. In addition, I continue to serve on the Angioma Alliance Board of Directors.

My health continues to be well. I do still have problems with my handwriting. I have found ways to hold my pen differently to compensate for the poor handwriting and that has helped my handwriting improve and be more legible. Sometimes, I get an occasional headache (usually caused by stress) that reminds me of what I have been through.

I continue to speak with affected people about my experience and am happy to share my experience with you. Feel free to contact me at amy_jagemann@hotmail.com. I’m happy to discuss my symptoms, surgery, recovery and the challenges I have faced along the way.

Amy Jagemann