Monday, October 31, 2011

Holley's Story


Hi, My name is Holley.

The cause of my seizures is unknown, however it is suspected that a severe illness as a young child when I was 2 years old was the cause of damage in my brain. The illness gave me a long term and extremely high fever (104-105 F) resulting in partial paralysis. At the time my parents were told that if I indeed lived, I would likely be physically and mentally handicapped. Of course, I healed wonderfully and to every one's amazement, there was nothing seemingly wrong with me. Doctors now think that a young brain is able to just rewire itself, so children can often heal in these cases.

As a young child I was often thought of as a "day dreamer." I can remember telling my parents by at least age 7 that I had "weird feelings" in my head. I didn't know how to describe what was happening to me. Thus, I spent a lot of time in school going to counselors, no one ever thought of it as a medical issue. Academically I was an excellent student often with straight A's.

The only time I encountered a doctor before college was in high school, I finally figured out that what was happening to me was not some feeling, but was a seizure (or so I thought). I said this to my family doctor who shrugged and told me, I would outgrow it and not to worry about it. Shocking when I think about this now, but I let it go. (At the time I would have partial complex seizures for 3-5 days at a time.) BUT, I really didn't know any better and things like the Internet for research just weren't available. The school library leaves a lot to be desired on current medical information. Frankly, I was being given a full scholarship from the USAF to go to college, so if the doctor says it's not a medical issue, so be it at the time.

In college is when the seizures really took control of my life. I went from minor absence seizures and partial complex seizures to full out grand mal (tonic clonic) type seizures. I ended up in the hospital of course, because that is what people always do, and in medical treatment for the Air Force. This was three years into college, so I am almost 20 and still not getting any form of medication for my seizures. Very quickly my body began to shut down and the seizures were taking over as the stress level in college was growing immensely. The military tested me multiple times until I had seizures at the AFB. After that I was discharged and lost my scholarship. Fortunately though, after that I could promptly start going to see a neurologist to be medicated for having seizures. I did not have anymore tonic clonic level seizures, just partial complex seizures. So medication for me was a mixed blessing. It was clearly helping some, but never seemed to make a difference in the day to day seizures that were an issue.

I got funding to complete college from the Texas Rehabilitation Commission. I was already 3 years into my BS in Electrical Engineering. Despite some setbacks due to medical issues and bad semesters physically, I was able to complete college thanks to the funding and the wonderful support of the folks who worked at the TRC. One more horrible incident that hit me in college was a severe level overdose on the epilepsy medication. So much so that I again ended up in the hospital. It's a constant battle for those of us who don't get full control of the seizures from our medication, which causes our medication level to get raised. I woke up with triple vision and loss of depth perception. I had been sick for weeks and again went back to the student clinic at the University. I was immediately sent to the hospital again.

My reason for going through all this is, I still succeeded. Despite the epilepsy and the setbacks, I still did well. Epilepsy doesn't define me. I still completed my college degree. I still got my BSEE. Despite several bad semesters due to health issues and several periods where professors encouraged me to just quit or drop out. I still made it. It was frankly shocking at their calous treatment since one bad semester could be immediately followed by a 4.0 semester. You are still often remembered as the "problem student." My senior semester my final project was "Photorefractive Crystal Curing on Barium Titanate." My university became the 7th place in the world where that achievement occurred. After that, the same professors who were encouraging me to quit and leave the department were now patting me on the back and asking me to stay on for a graduate school scholarship. My final work was nominated to the National Science Foundation that year and received an Honorable Mention in the Engineering Category. Many schools recuited me after that despite my 2.99 GPA. I didn't chose to go back to school. My experience at college was not positive.

So my engineering career got started and I worked as a Test Engineer writing software in LabVIEW with hardware systems for all sorts of military, aeronautics, science and technology projects such as: F/15 E Lauch Box, C5 Aircraft Engine Tester, C-5 Multiplex Box, VXI-DASS, International Space Station Test System, Dell Fan Test Systems, Tensor Automated Calibration System, Energy Star Compliance Testing. Just fast paced work and amazing technology projects. Work often included long days, nights and weekends, high stress and major deadlines. My health was slowing declining, my seizures were increasing and my medications were increasing. I worked companies in San Antonio, at NASA, and Austin, TX.

By 2006 I was maxing out on medications, at three medications per day. The doctor added Effexor XR to control my mood as my dose of Keppra was changing my mood constantly and causing outbursts similar to panic attacks that I had never had before. I was also having excessive sleepiness. I had started to sleep 10-11 hours per day and gained at least 30 pounds over the last 2 years. Days when I would have seizures became horrible. I couldn't have any activity, any tv, radio, anything that my mind would consider stimulating. This could even include art, reading, or walking outside. I had to sit still in the dark during those days. Like a prisoner in my own body. I was starting to get dizzy and vision problems when outside. I would get severe eye pain (like something was stabbing me in the eye).

By 2009 I had declined even worse, the current doctor I had sent me to an Epileptologist, Dr Sami Aboumatar of Austin Epilepsy Clinic. At the time I went to see him, I was taking maximum doses of 5 medications, weighed 195 pounds, slept 12-14 hours a day, was in a pretty strong level of depression (but the previous doctor had been working on my Effexor dosage), and still had regular seizures. I couldn't really leave my house or even sit next to the window if the sun was shining in at times. Of course, it seems so bleak now, but at the time, that was just life to me, so I couldn't see it as bad, or even as sad. It was just life, and so I was making do with it. I still loved artwork, I loved my husband, I loved work, I enjoyed lots of things and I avoided lots of things that would make me sick....

My first appointment with the doctor, we went through my medical history, standard practices, then he's talking about the next steps and starts off with the process for testing. I didn't really understand at the moment what he was talking about. I asked him, he said, "You're very sick. You need Surgery." I guess I knew deep down that he was right and that I did need it, I was just stunned that is what has happening RIGHT NOW. I was not at all suspecting that is what this appointment was for. He kept on with his talking. I stood up and walked straight to the door. The doctor is staring at me now. I turned around, "Excuse me for a minute, I need to get my husband." After that, I can't recall much more of the appointment. I can recall asking my husband in the elevator when we were leaving what was going on. We had an MRI scheduled and a week long EEG scheduled for the following week.

I went home and cried. I called my boss and told him I needed some time off. I called my family and my church. I told them I had always resisted surgery before now, but NOW surgery was clearly my best option and everyone please start praying that testing and pre-surgery trials go well. Surgery was now 100% my goal no matter how afraid I was. It was my opportunity to get better. This I know without the doctor saying anything to me. The doctor knows you are so overwhelmed at the appointment that he doesn't speak about anything past just your first test. I did research; about the surgery, about my doctor, about the surgeon, about the testing, and I did a lot of praying.

I won't go into a lot of detail about the testing done, but going through the testing does make you feel better than just a doctor telling you, "Oh, you need surgery." The testing is extensive and detailed. They are looking at every aspect of your brain, every possible location through tons of tests to determine where your seizures occur, if they occur in the same place, and so forth. There are very specific things they are looking for that make you a good surgical candidate. They also give IQ testing and personality testing to determine your state of mind, your personality and attitude (so you can be tested post surgery and compared). They take detailed MRIs. They test your brain for dominance to determine if you left side or right side is stronger, ensuring that the surgery will be taking place on the less dominant side. It's a lengthy process to go through, but it also adds a small comfort level with the doctor and to see how carefully they are working on your case.

So after all these series of tests, the doctor will actually set you up to meet the surgeon and then you will set up a date and time for surgery. In my case, I was having a mass remove on the left hand side. This area was CLEARLY visible in my MRI. I have had MRIs before and never had a doctor see anything. When Dr Aboumatar showed my MRI, it was shocking. He says, "Do you see it?" I looked at him, stunned and pointed at this HUGE (ok, maybe big as a quarter) and said, "THAT?" of course I can see it! I have had SO many MRIs in my life, how come I have never had that show up?

At any rate, that would be the area removed. Because of it's critical location, the left temporal lobe, extra testing and surgery would be required to ensure that the surgeon would remove the least critical areas. The Temporal lobe is used for memory recall and word association along with several other key features. That increased the amount of time necessary for hospital stay for me including the time in ICU.

Surgery Day, I was so nervous and so ready to get through it. I don't of course recall anything, I was prepped and taken into surgery at 6:30 am and saw my family late that night. It's not an easy surgery. There is a lot of pain. They are working on your brain and they need to ensure you are remaining conscious and lucid at some level so they do give you pain med, but not nearly the amount you probably would want. It's certainly do-able. It's a time when prayer comes in a lot and whatever you use for relaxation is handy.

After my second surgery, I spent another week in the hospital healing and was allowed to go home. In the beginning, recovery can be slow, mostly because of general trauma from a head injury. I spoke a little slower and had to think carefully about what I wanted to say, but it all came back pretty quickly. Most importantly, I didn't have any seizures! Immediately following the surgery or during recovery. That was wonderful and something that I thanked God for constantly. Everyday, sometimes every minute. "Thank you God, for giving me this 10 minutes of pain free, seizure free life."

The real miracle hit me about 2 months after my surgery. It just struck me that I felt better. Not better than yesterday, not better than last week, not better than 2 months ago, better than YEARS ago. Better than longer than I could remember back to. I can remember telling my husband that. I could remember laying there in the hospital bed helpless and hardly able to move being so weak. After healing, I decided that would NEVER be me again. I went outside one day and started walking.

I learned almost immediately that I no longer had eye problems. Before the sun would hurt my eyes. I would get horrible headaches being outside. Now I can go outside without sunglasses. I started walking and didn't stop. I had been a prisoner in my own house for YEARS. Really, for years!! Not anymore. I couldn't wait to jump out of bed, put on my tennis shoes and get out of my house. Initially I was doing about 10 miles per day, 5 days a week. That was 3 hours. That quickly went to 7 days a week.

There's something that walking seven days a week will give you--I dropped SEVENTY pounds! Just from walking. I basically went straight back to my normal size that I was from age 16 to 31. It took me 6 months of walking everyday to go back to my original size. And, I have stayed that size for the year since. Now I do 15-20 miles a day, and it's a joy everyday.


I have also realized a lot of other things I gave up at some point, like concerts. I used to love concerts. Then I stopped going to them because the flashing lights and noise would give me the worst headache. I would dread going to them because I knew I would be miserable half way through it. Four months after surgery I was pushing up to the front of a stage in Austin. I had forgotten how much I love concerts. I stopped doing engineering when I was waitning to have the surgery and then healing from surgery. Afterwards, I started doing the work I love, art! I started designing for rubber stamp companies, now I do what I love. I have learned to just appreciate every wonderful day that I have.


After one year of being seizure free, I got to start the process of reducing my medications. I have reduced the Synthroid I take (due to the weight loss and increase in activity), and three times now-the amount of Keppra); I have also had a wonderful change in my blood tests. My white blood cell count has been abnormal for years. Since surgery, the count has been rising and is very close to a normal level now!! My body is healing. Both photos shown here are me at 1 year post surgery.

Epilepsy doesn't control me anymore. I encourage everyone to take control of their life. Don't be afraid. Talk more to your doctor. TELL your doctor what is going on and what you want. If you need to, write it down and hand it to him. Tell your doctor the truth. If you are not getting help from your doctor, GET A NEW DOCTOR. If you don't understand your doctor, get a second opinion. Your life is so precious. Don't waste a moment more.

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23 comments:

Becky Dunham said...

Wow Holley. I had not realized what you had your brain surgery for. I found your blog about the time we were all sending notes to your doc saying how wonderful he was because he cured you :) This is amazing! Praise God for his goodness! I am so glad you found help. I will certainly remember this story for the rest of my life.

Anonymous said...

So glad you shared your story Holley. I hope you will put a link to this post on blog hop day. I find it interesting that you also went undiagnosed even after telling your reg. doc about it. Just like my son. Some docs just don't know what they are doing. Such a shame.

Christine aka blankiefinder said...

Holley, you are an inspiration, and I am so glad that your surgery was such a success! I wish you health and happiness, and a very long life! Hugs!

Larisa said...

Holley, you are a very strong person. I am very glad that you could defeat the disease and there the good doctors and others were around of you when you needed in them. Your story has a happy ending. Enjoy every day. You deserve it!
Hugs. Larisa. xx

Hlora said...
This comment has been removed by the author.
Hlora said...

Sorry, the first message was not correct even- the internet system spoilt it somehow..

Holley thanks you shared this with us! I read your story and my eyes awe wet... I am happy all is finished as well. You are a very lucky girl!
I wish you all the best forever!! @@@@@@@@@@@
Love. Hlora. xxx

craftykitten said...

Hi Holley,
I knew you had had problems and surgery but had never known the "full" story. It made quite sad but nevertheless very interesting reading. I would like tothank you for sharing your story and I am so glad you are doing so well. Long may you continue to enjoy life, love and living.
big hugs
Dawn xx

Holly said...

Amazing story Holley. So glad you persevered through all the bad medical stuff! thanks for sharing your story.

Trish said...

Hi Holley,
I, like many others, knew that you had brain surgery- the outcome of which was a new you. This is the first time I've read the whole story. Now I can understand what you've been through and why each day is a new beginning.
You have come far and are an inspiration. Thank you for sharing your life story and I pray that it will help many who are experiencing similar problems.
Big hugs,
Trish x

Anonymous said...

Holly-what an amazing story. Heavenly Father has surely been watching over you. Thanks so much for sharing your story and your faith.

Debbie F.

judyjstamper said...

Hi Holley - thank you for your inspirational story. We 'met' back in 2009 and you were just starting with the center. It's been an amazing journey and glad you are doing so well. God Bless.

Anonymous said...

Holly, thank-you for sharing your story. I am married to John's uncle David. I love your cards and your creativeness--wow, you are so talented. Glad things are going good for you and John. Love your posts and even tho we are far apart, I feel a "closeness" having read your story and wish you only the best for the rest of your life.

Marlene said...

Thanks for sharing your story, Holley! It's truly an amazing one. Had no idea all you'd been through. (And you look great, by the way!)

Patty Chalas said...

Wow Holley. This is amazing! Praise God for his goodness! I am so glad you found help. I will certainly remember this story for the rest of my life.
Thanks for sharing it!!

Kate P. said...

Thanks so much for sharing your story Holley, gives hope to others out there suffering with debilitating illnesses. Really happy for you that you were finally able to get your quality of life back :O)
Hugs,
Kate

Net said...

Oh wow what a truly inspirational story Holley. I hope your road road to recovery carries on apace.

Angela said...

Thanks Holley for sharing your story with us. I am so glad you now have your life back and it seems as if you feel better than you ever have. I can't believe you walk 15 to 20 miles a day. I think I would die from being out of breath. lol. Amazing life story Holley.
Hugs:)
Angela

Sandra said...

Holley...I thought I had read this...but it was not this long. I remember you working for Nasa projects, and I remember you have 2 surgeries, I also remember your saying you lost weight. I do know God is definitely on your side. So glad you made it thru this hell. But all that walking... I wish !! Amazing girl...Amazing !

Teresa Kindred said...

Amazing! So Glad you are better. May God continue to bless you and keep you in HIs care!

Teresa from NanaHood.com

Sylvia said...

I am so glad that you are finally seizure free after all these years. My daughter had a brain tumor removed in 2000 and had bi-weekly Grad mal, complex partial, and simple partial seizure clusters for 12 years. She's on 3 meds now and has not had a seizure since 10/4/12. We are hoping it lasts. She isn't a candidate for surgery. I invite you to visit us at http://faithfulmomof9.wordpress.com

Doreen said...

Dear Holley
Thank you for your inspiring story.....
My daughter is 29 years old and still not in control of her seizures...now she is having blackouts. She's had petit mal seizures since 4 years. And only start on grand mal seizures at 17. Ironically they started after a "specialist" in NYC took her off depakote immediately and put her on lamictal when she was have just the absence seizures. He said she was not a candidate for surgery. That was in 2001. Bad move on his part...she should have been weened off depakote. We know that now. I'm up at 3:20 am because yesterday morning she had a blackout seizure, she broke her nose, sigh, again. Two weeks ago, she sprain her wrist. And these are not her first injuries. I'm afraid one day ill get THAT call that she will be no more due to a head injury or worse paralyzed. I feel very helpless because Cait is one not to sit around and do nothing. She recently has been diagnosed with diabetes, but then she had gained weight when the took away topimax. She is now on office and depakote. She's going to who I thought was the best dr at Yale New Haven, but now I'm thinking even he is guessing and he is in his eighties now. I'm thinking she needs to be reconsidered for that operation....so I thank you for your story...it's given me courage to push her doctors into at least retest her for being a candidate. Sincerely, a worried mom. Doreen Balimidi. Dorajidesign@gmail.com

Doreen said...

Auto correct! She is on Onfi. Not office.

Donna Ellis said...

Thank you for sharing your beautiful story of hope and perseverance, Holley! I'm so grateful that your life has been transformed by the surgery, and the walking, too! WOW! hugs, de