Patient Stories
Read testimonials from our patients who have been treated for the following disorders:
- Acoustic neuroma (vestibular schwannoma) in a 35 year old female pharmacist
- Acoustic neuroma (vestibular schwannoma): Annie's Story — In One Breath
- Craniopharyngioma in 40 year old female teacher: Celebrating life as a new mother
Acoustic Neuroma (vestibular schwannoma) in a 35 year old female pharmacist
By Catherine Paiste
On the morning of August 31, 2009, one phone call from my family doctor turned my life upside down. That day I was diagnosed with a 1.5 cm x 0.95 cm brain tumor (a vestibular schwannoma). My initial thoughts were all over the place, from "oh my God am I going to die? to how did this happen?" After the initial shock wore off, I went into research mode and learned everything I could about my condition and all the treatment options available to me. With my MRI in hand, I consulted with 6 different surgeons. The last and final consultation was with Dr. Giannotta. Like the old saying goes: I saved the best for last. Once I met Dr. Giannotta, I knew he was the right surgeon for me. I trusted him instantly, and was comforted with the knowledge that I would be in great hands. After a few months of researching my treatment options--either radiation or surgery, I made the biggest decision of my life to have brain surgery. On December 11, 2009, I had a retrosigmoid craniotomy to have my brain tumor removed. The surgery was successful and no real complications occurred. However, I was left deaf in my left ear, I had temporary facial paralysis on the left side of my face, and part of the left side of my head was shaved revealing my surgical scar. My recovery was slow but steady. I had to walk with a walker for about 2 weeks and basically needed assistance with most things. Aside from the great support that I received from my family and friends, reflecting on the positive side of my journey helped me put things into perspective. I was fortunate that the tumor was operable and was not cancerous and no major complications occurred during my surgery. I know things could have been a lot worse. Once I fully recovered and got my smile back (about 4 months post-op), I got clearance from Dr. Giannotta to go skydiving. I have always wanted to try skydiving, but never had enough courage to do so until now. Through my battle with a brain tumor, I gained a new sense of appreciation for life and I am learning to live life to its fullest. So I took to the air and soared like a bird in the sky 13,000 feet up. It was the most amazing experience ever. The adrenaline rush was like no other. I hope my story will inspire others faced with adversity to be brave and to take chances. I now know that in life we cannot change the cards that we are dealt but only the way we play the cards.
Acoustic neuroma (vestibular schwannoma): Annie's Story — In One Breath
On July 25, 2010 I was admitted into the hospital. It was after a day spent in the Emergency Room trying to stop an awful headache and vomiting. After an entire day of medications and doctor’s trying to help they ordered a CT scan. The comment was you are not making any sense you should have relief by now, let’s do a CT scan, we are not planning on finding anything but we want to be sure not to miss anything. Well, about 10 minutes after I returned to my ER room the doctor ran into the room looking pale and shocked stating in one breath, oh my goodness we have found a huge mass in your head, you are on your way to ICU and we have ordered a MRI.
I’m not sure how most patients have found their tumors but that was the abrupt way mine was found. I had no idea what acoustic neuroma was, had never heard the term before and due to the very large size of mine I was startled to say the least. Once I had a chance to exhale (be it about one night) I knew I wanted a second opinion and that is how I found Dr. Steven Giannotta and USC University Hospital. I had heard from other doctors whom I trust “he is the best” I knew I needed to go meet him and show him my golf ball size tumor!
After one meeting I knew he was the man and I was in great hands. We set the date, then I prepared to grasp what I was about to endure. On 8/11/2010 after 9.5 hours of surgery I was back in the ICU at USC University hospital and the tumor was gone. So was the hearing in my right ear but that was a small price to pay to be alive. See my tumor was so large I could have lost a lot more than the hearing in one ear. When I woke up I had major facial paralysis, yes that was scary, but I am here 7 weeks post op and it is almost back to normal. I do have some issues with my right eye and I do not have any taste buds but those too will recover in time. Two of the hardest things for me to accept are 1) getting used to being deaf on the right side and the amount of weight gained from the strong steroids I was on for the swelling of the brain. The deaf in one side is a new lifestyle I adjust to daily and as for the weight and the steroids, I have been off of those for 4 weeks and the inches are starting to drop off but this too will take some time and effort to get back to me!
Recovery for me, well, physical therapy is the key! Learning balance and all after losing the hearing in my right ear has been work. At first I was extremely dizzy and nauseous. Be sure you find a good physical therapy facility. I am with Pro Sport of Newport Beach, CA (www.prosportpt.com). They are the physical therapy home of the NHL Anaheim Ducks. I am so fortunate to have a team of people who not only work with me on my balance but work on my overall strength, stamina, flexibility and well being. Making sure you find a place you trust, who challenge you and who know and understand what going through head surgery is all about is a must! I have found that you also need the support of family and friends. You can’t stay alone or drive for 4 to 6 weeks so be sure your support team is in place. This is not an extremely painful surgery to recover from but it truly helps having the right mental approach, commitment to yourself, commitment to your healing and most of all finding a team of professionals to take you through the journey!
Annie is the founder of American Soldier Network, an organization aimed at raising awareness to honor and thank our men and women in the United States Military. Annie, described as dynamic and inspirational, raises money to support soldiers and their families. Please learn more at the following link: www.americansoldiernetwork.org.
Craniopharyngioma in 40 year old female teacher: Celebrating life as a new mother
Woman who was diagnosed with a brain tumor while seven months pregnant shares her story.
May 08, 2010|By Kelly Mitchell
Special to the Daily Pilot, Newport , CA
A few days ago, while waiting to meet someone, I wandered into a high-end boutique. Then I saw the dress. $200. And I fell in love. I tried to justify buying it, but knew there was no justification.
See, I am a new mom. And any mom can tell you that they could drop $200 in record time with a few clicks of the mouse on www.diapers.com. But, oh, how I wanted that dress!
The cute 20-something sales girl could see that I was conflicted. She tried her best to convince me that it was an investment.
“You could always use a cocktail dress,” she said.
A cocktail dress?
The only cocktail that I am familiar with these days is an elixir of baby cereal and sweet potatoes.
I walked away. I was strong. But I went back the next day. This time I had my 8-month-old baby boy with me.
“Oh, you came back for the dress,” said the 20-something. “And you have a baby! Well, if you had a baby, you deserve the dress.”
And there it was. A revelatory moment if ever there was one. Just like that it all started flashing back in my mind. I was speechless and lost in thought.
I looked up at her, paused, and said: “You have no idea.”
My pregnancy was pretty standard for the first seven months. I had the usual symptoms: nausea, daily milkshake cravings, frequent bathroom visits. But my “pregnant brain” suddenly reached a dangerous level. I could barely see or remember anything.
It was time to stop consulting the pregnancy blogs and see my doctor. She sent me to an eye doctor, who sent me to a neurologist, who sent me to get an MRI. As we were leaving the office, a nurse chased us down.
“A neurosurgeon has read the MRI. You need to be admitted to the hospital — now,” the nurse said.
So with no clothes, no toiletries, no notice — and no real explanation — I was admitted.
A few minutes later a neurosurgeon came to see me: “You have a brain tumor. It is impressive. We need to talk about your options.”
Impressive? A tumor? Was I supposed to be flattered? I kind of was for a minute before I became scared to death.
As it turned out, I had a very rare tumor that started out as a normal cell, but it wandered and got lost. The wayfaring cell settled down in my brain cavity and started to divide. The tumor had been growing my whole life. The good news: It was benign. The bad news: It was making me blind and delirious. I had to get this thing out, but I had to get my baby out first.
So started my journey to giving birth to both a baby boy and an avocado-sized brain tumor.
After numerous consultations with surgeons and anxiety attacks, it seemed that the only option for removing the tumor was to have a craniotomy. (Read: Cut my head open, drill a hole in my skull and physically pick the tumor out of the pituitary and brain stem area for roughly seven hours). That settled it. Once the decision was made, we could get on with it.
By this time I had gotten pretty close to completely losing my mind, and I asked the same questions every few minutes. Then I’d forget
When am I having the baby? Did I have the baby yet? When do I have brain surgery? I have a tumor? What? Where’s my phone?” then back to “When am I having the baby?”
It was driving people nuts, so my husband, Jon, came home one day with a white board.
It read: “You are having a baby in eight days. You are having brain surgery in 16 days. Your phone is in your bag.”
I referred to it constantly. It worked like a charm.
The day finally came (according to my white board) to deliver the baby via C-section. In retrospect, I remember all of it. On Aug. 27, at Hoag Memorial Hospital Presbyterian, I delivered Curran Jon Mitchell at 35 weeks. He was so tiny and perfect. They handed him to me, and I was overcome with joy that he was out safely and healthy.
The name Curran means “hero” in Gaelic. There could not be a more appropriate name, considering the situation. To me, he is a true hero. He saved my life.
Curran still had some developing to do, so he spent the next few days in the neo-natal intensive care unit. There, I was taught how to breast feed. The nurses were patient with me because every time I went in, they had to teach me all over again because I didn’t remember how. One particular day, two of my girlfriends came to meet him, and I took them to the wrong incubator.
“Isn’t he cute?! Oh wait ... this isn’t Curran. Where is he?”
The nurses were getting used to me. They’d see me coming and guide me to my baby.
The next challenge, brain surgery, came a week later. I was scared but couldn’t really remember why. On Sept. 8, I went under the knife (and drill) for brain surgery at USC University Hospital. The last thing I remember was being wheeled down to the operating room, asking the residents the same questions over and over:
“When am I going to get the anesthesia? Is it going to hurt? How long will it take for me to fall asleep? When am I going to get the anesthesia? Did I have a baby? Are you on ‘Scrubs’? Where’s my phone?”
Next thing I knew, it was over. I woke up in the intensive care unit with a throbbing headache. The pain was intense, but I was ecstatic. I could remember things and I could see! It was not easy to be away from my brand new baby, but I knew I had to heal in order to be able to go home and be a good mother. After four days, I was finally reunited with my baby.
The day I got home, I would not, could not put him down. It was all so surreal. I would hold him in the rocking chair and just sob. I was totally overcome with emotion. I felt so incredibly lucky, relieved, in love, blessed, exhausted, ecstatic, nervous, appreciative, and the list goes on.
Recovery took a while, I have to be honest. It was not like I came home that day and was skipping to the park, tugging Curran in a little red wagon. I had to take each day at a time and slowly get my strength back and wait for the headaches to subside. Little by little, day by day, the headaches disappeared and life finally resumed to normal. We have a beautiful healthy baby boy, and I have a sparkling new brain.
I know now that the power of love can truly get you through anything.
So now I am about to celebrate my first Mother’s Day as a mom. I have so much to celebrate.
It is such a special occasion. I think I need a new dress.
