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Support groups
  • AdventHealth Brain Aneurysm Support Group

    Winter Park, FL

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  • Baltimore Brain Aneurysm Foundation Support Group

    Lutherville-Timonium, MD

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  • Bay Area Aneurysm and Vascular Malformation Support Group

    San Francisco, CA

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Tiffany Fry’s Story

My name is Tiffany Fry, and I was diagnosed with an aneurysm on May 30, 2006. It all started on Thursday night, May 25th, when I had a temporary loss of vision for approximately twenty minutes. After what seemed like the longest twenty minutes of my life, my vision returned to normal. Shortly thereafter I developed a horrible headache. However, I had suffered from migraines for years. I convinced myself that it was just an ocular migraine and decided not to go to the emergency room.

When I woke up Friday morning I was still in too much pain to work. However, I am a pharmaceutical rep who calls on neurologists and psychiatrists, and I happened to have a business lunch that day with a neurologist. I called my boss (who is also my dear friend) and explained that I still had a really bad headache, but that I wanted to go to the lunch I had in hopes that the neurologist might be able to shed some light on the situation. At that point I had no idea how much I would grow to love this wonderful neurologist (my Godsend) Dr. Ann McLean. When I arrived at lunch I explained the situation, and Dr. McLean and her nurse worked me into their busy schedule. They were also able to get me an MRI right then. In fact, I was not going to be able to get an MRI, but miraculously the woman who was scheduled for the 1:00 appointment had car trouble and had to cancel. I was able to take her spot… as you will learn I am a big believer in guardian angels! Anyway, the MRI did not clearly show anything of concern, but it was going to be sent away and would be back on Tuesday due to the Memorial Day Weekend. I was given strict instructions to get to the hospital immediately if anything changed or if the pain worsened. I went home and pretty much felt lousy all weekend.

Tuesday morning I received a call from Dr. McLean and my heart sunk. It was the news that no one should ever have to hear, especially not a twenty-eight year old woman who is the mother of an almost two year old son. All I could think was, “God this can’t be happening to me. This has to be happening to someone else.” It was literally like watching a movie about some poor woman who was about to die and my heart broke for her, but I was not able to process that I was that woman. After calling my Mom, my husband, and my two sisters we came up with a plan. First and foremost, we reminded each other to breathe. Second of all, we asked my dear father who died in 2003 to watch over us and guide us through all of the tough decisions we knew were ahead of us. Finally, we started researching everything we could about aneurysms, options, neurosurgeons, and hospitals.

The first thing I did was call two dear family friends who happen to be brothers. Both of them are doctors in the field of neurology, so I knew they could point me in the right direction. Little did I know they would be there for me through the entire process. Their guidance and support was more than anything I ever expected. During something like this, it is so hard to focus on anything positive. However, the one thing that kept me going through all of this was realizing that I have been blessed with the most amazing family and friends. I have never in my life realized how blessed and loved I am. I remember telling my Mom that it was literally like getting to be alive at my own funeral. Everyone sent cards, called and visited me to make sure I knew how much I was loved. It made me realize that I wanted to take time to do more of that myself if I made it out of this alive. It is so hard to slow down and appreciate those around us, but what a difference it makes when we do! All of my friends were so supportive, and for anyone going through this… take advantage of your friends! They want to help, and believe me, you need their help.

So the time had come to make some decisions. Since I live in Columbus, Ohio, I had a few amazing hospitals to choose from that were close to home. I first went to one well known institution to get a consultation. I was told that it had not leaked, the HA was unrelated to the aneurysm, and that I could wait and see or go ahead and have surgery. Nothing was urgent. I am not exactly the type of person who wants to wait and see how long it is going to take for this time bomb in my brain to blow up, especially given my young age. Realistically, the chances of this thing needing to be operated on at some point were pretty good, so why live my entire life in fear if I could just go ahead and get the surgery behind me and start living my life again? At that point I wanted a doctor who was somewhat more urgent and understanding of my needs as a young woman who had an entire life ahead of her. I kept thinking, “Am I going to have to worry about sneezing, coughing, and bowel movements the rest of my life until this thing decides to rupture? Where will I be when it ruptures? Can anyone be sure there was no leak? Why did I go blind for twenty minutes?” There were way too many questions left unanswered.

Then I went for a second opinion to an even better known hospital. At that hospital, I found they were much more urgent, in fact too urgent. The neurosurgeon did not make me feel comfortable with all of my options, which was something I felt I needed to be at peace with before making this decision. I have also been told by numerous people that you don’t need your neurosurgeon to be your best friend. You just need him to be good at what he does. While I agree to a certain extent, you still have to feel comfortable enough with him or her to say “Go ahead and take a saw to my head. I trust you.” I just was not comfortable enough with the doctors there to give them the go ahead. So, I decided to go back to the first hospital. The neurosurgeon there performed an angiogram and then basically told me I wasn’t a great option for either surgery because I had a wide-neck aneurysm that was in a difficult spot. A clip would not easily fit, and a stent would be a challenge to fit in place.

With his guidance and willingness to explain each option to me, we decided to attempt to coil it first based on the less invasive nature of the surgery. After five and a half hours of surgery and trying four different stents, he could not get a stent to fit. Apparently, I have a sharp right turn that would not allow the stent to get to the right place.

At this point, I knew I had to have a craniotomy. Given the seriousness of the surgery, I just decided I wanted to get some other opinions before anyone took a saw to my head! I swear I thought I didn’t have the strength to go through searching for a new neurosurgeon. It is amazing to me how God gives us the strength and the support we need when we think we can’t possibly go on. I was ready to lose faith when my incredible Mom gave me a swift kick of courage right when I needed it the most! Then my cousin Florence got me opinions from the top neurosurgeons in Texas and offered to let all of us stay with her during recovery if we decided to have the surgery done in Texas. Then my cousin Dr. Santosh Kesari informed me about Dr. Ogilvy and Dee Dee and everyone at MGH. My sister, Tracy, and my brother-in-law, Antonis, also lived in Boston about five minutes away from MGH and insisted I could recover at their home. My Mom and sister Molly said, “Have Sky Miles Will Travel.” I could not believe I had so many options and so much support and love. After weighing all of my options, I decided to send my records to Dr. Ogilvy’s office.

I was somewhat nervous calling Dr. Ogilvy’s office. I have no idea why, especially given what I do for a living. However, I was somewhat afraid that they would be too busy or rude or just not able to see me for months and months. I could not have been more wrong!

On Wednesday morning, July 12th, I received a call I had eagerly been anticipating. It was Deidre Buckley, NP from Dr. Ogilvy’s office. Dr. Ogilvy had received my records and he wanted to talk to me. I will never forget the first thing he said to me. He said, “Wow. You’ve really been through the wringer. How are you holding up through all of this?” I just remember thinking, “He sees me as a personÉnot an aneurysm.” He explained the pros and cons of all of my options. I decided I wanted to move forward as quickly as possible. He was able to get me scheduled for the pre-admissions work up on that Friday (7/15) and the surgery was scheduled for Monday, July 17th, 2006. He had set aside time on Friday to discuss everything with me in further detail and encouraged me to bring questions and welcomed my family as well.

He probably regretted telling me to bring questions, because I literally had a list of thirty-two questions. He answered every single one of them, and was so compassionate. One of the last questions I asked him was if there was any way he could save my hair, and he explained that sometimes they don’t have a choice, but that if he could he absolutely would do that for me. He told me to go enjoy the weekend with my family, and he would see me early Monday morning.

At his office, I also I met one of my now dearest friends, Maryann, who was also facing the same horrible challenge I was up against. Again, you never know when and where God will give you an angel! Maryann and I were both there to see Dr. Ogilvy and instantly had a bond that words could never explain.

I know this sounds crazy, but I actually had a great time that weekend, mainly because of the comfort level I had with Dr. Ogilvy. My confidence in him as not only a neurosurgeon, but as a compassionate human being was the most calming aspect of this entire nightmare.

I remember writing letters to everyone I loved incase I didn’t make it out alive or God forbid, couldn’t remember them when I woke up. My surgery was scheduled one week before my son’s second birthday. So, we went ahead and had his birthday party because we didn’t know if I would make it, and if I did make it we didn’t know who or what I would be when I woke up. There were so many unknowns, but all I remember is feeling calm that I had gotten to the best possible hands, and I had the best possible faith (especially knowing that my Dad was routing for me), and I felt that the combination of the two was enough to get me through this.

Most people who know me would agree that the likelihood of my being calm on the morning of the surgery was not very good. However, I was totally calm. I don’t know if I was in denial or if I was just really comfortable that all my hard efforts to get to Dr. Ogilvy were finally going to pay off. Regardless of the reason, I was calm. Everyone at the hospital was wonderful. I have never in my life seen a hospital with more focus on patient care and satisfaction. Everyone was friendly, helpful, and genuinely sympathetic to what I was going through. I remember the anesthesiologist had a great sense of humor and was keeping me well entertained. The next thing I remember is waking up in my room. Apparently, the aneurysm was much closer to rupture than the other doctors had thought. I was incredibly fortunate that they did the surgery when they did because the aneurysm was “ incredibly messy and bloody and on the verge of rupturing when we got in there.” I was only in the ICU for three days and step down for two. Again, the nurses were the best I have ever seen. I then spent five days at my sister and brother-in-law’s, and I got to fly home on the tenth day. Not to mention, Dr. Ogilvy and his team saved my hair!

Don’t get me wrong, there was a long two months where I had to take at least three or four naps a day, and I have had a few short-term memory issues. However, my physical recovery has been so mild in comparison to what I was expecting. The emotional recovery is something I am still working on, and I know I will be for life. You can’t possibly go through this and not be changed forever. But I want to share with you the best advice I have been given. My dear friend, Dr. Bassel Shneker, gave me this advice which was seriously the turning point in my mental recovery. He told me to start with a new baseline and don’t be upset if things are different. They are going to be different anytime you have brain surgery, and you have to accept that. However, different is not bad. We all have the right to mourn over the death of the pre-aneurysm version of us that is forever gone. It is tragic, and it is unfair, and we have the right to be frustrated and sad that we and are family and friends had to go through this. However, what I am learning is that the new version of me (the post-aneurysm version) is still amazing and in many ways has much more to offer this world than the old me ever could have.

This type of experience leaves you no choice but to grow from it, and hopefully that growth will lead to something positive. I am still trying to figure out what that is. I’m sure that will be a life-long process, but at the very least I know I will never take a single second for granted. Now that I have survived, I am actually glad this is a part of my history. Don’t get me wrong, during it I would have given anything to have not been going through it. However, it has made me a different person and I really am thankful, not only that I made it out alive, but that I learned so much by going through it. Life’s greatest lessons are unfortunately often learned in the most difficult classroom. I know it seems a little cheesy to steal a line from a country music song, but it seems to perfectly sum up what this experience has taught me. To quote Tim McGraw, “And I loved deeper, and I spoke sweeter, and I gave forgiveness I’d been denying, and he said someday I hope you get the chance to live like you were dying. Like tomorrow was a gift and you’ve got eternity to think about what you’d do with it. What would you do with it? What would you do with it?” Every morning I thank God that I’ve been given the chance to figure that out!

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