Personal Stories: My Aortic Dissection Story-Brian S. Tinsley

My name is Brian S. Tinsley and here’s my story of my aortic dissection. On August 22nd, 2003 I was just starting to play my usual Friday afternoon match. We had played about 3 games and while lunging for a low ball to my backhand side, I “cringed” as if my entire chest had exploded. I immediately sat down on the bench on the court as my partner said that’s it. I sat there for maybe 3 minutes and we walked back into the main lobby of the club.

Then I was approached by several folks wanting to know what was wrong with me? Anyways, a “key” mistake I almost made was allowing my partner to drive me to the hospital versus calling 911. The traffic was bad on Friday afternoon and no telling how long of a delay there might have been? So, I moved out to the front entrance of the club and we called 911. They arrived about 12 minutes later. I was taken to Everett General hospital-about 6 miles north of my club. I was given some baby aspirin and nitro tablets on the way up in the ambulance. I still had no idea of what was wrong with me, just a feeling like never before.

To my luck, EVERYTHING fell into place for me! GOD has this all planned out for me. I was immediately taken to the ER room, where to this day, that ER doctor was a “crucial” factor in my survival. From what I can remember is that I was taken to the CT scan/MRI lab and put down in this tube that completely submerged me. I was very scared and wanted out of that thing! The next thing I remember is this man, about 6’4″ standing at the end of my bed telling me that I had a 50/50 chance of living. As my wife-who was over with my kids at a friends house arrived to hear this news, we all were terrified. For some strange reason, I was completely out of it and just remember being taken away with out any chance to say goodbye to my wife and kids.

The next thing I remember was waking up-seemed like I was missing a few days, in a room with all kinds of devices stuck in my body. And, with my wife right at my side. From what I heard is this, when I arrived at the hospital my Blood Pressure was very high and they needed to get it down as well as them not being able to find a pulse in either of my legs. I have a 6 inch scar on my left thigh towards my groin and a 11 inch one down the middle of my chest. I was told that my surgery lasted from about 10:00pm to 0600am. Little did I know that the hospital that I was taken to was the number one cardiac hospital in the state and top 5% in the nation.

Thanks GOD! And, I also was fortunate to have Dr. Jim Brevig on call who did the operation of replacing my ascending aorta. I can not thank Jim and the team of nurses at the hospital enough. I have to tell you what happened on 3/27/04, I was on my walk while my daughter was at ballet. I decided to go a different route and then head back and get my wife her Starbucks coffee. Guess who I run into while walking? Jim Brevig! Here’s a great article about Jim! I got a another chance to tell him how thankful I was for him saving my life and gave him a big hug!

Furthermore, I was able to stay in their new unit too! So that meant, I spent the entire 5 days in the hospital in my “single stay unit” versus having to go to various rooms during my recovery process. The hospital stay was tough-I hated lying there and not being able to do anything. I would see the cleaning lady come in and pick up the trash cans and change them thinking-man… I would love to have that job!

Suddenly, the simple things seemed like they were so important to me. When you are given a second chance, that’s how everything becomes. It’s funny that you sometimes need a second chance to realize how fortunate you are to have family and friends who love you and pray for you. My dad had told me that he had asked God to save me during the late night and was comforted when he felt God would take care of me and see me through this. Being at the right place and right time-and with the GOOD LORD on your side was the “key” to my survival.  With a skill saw running down my chest and clamps pulling everything open wide for the doctors/nurses to repair me, I was sore! Even, 8 months later, my chest is still tender when you really press on it.

After the surgery, I could barely walk or do anything that might risk having my chest open back up. My wife-who is my number one fan, was incredible! She was at my side helping me with EVERYTHING! I could not shower, go to the bathroom, get out of bed, into bed without her help! Thanks GOD! When I got home, I ended up living in our down stairs (main floor) as I could not make it upstairs to the bedroom. Although, I was looking forward to a bed that was big enough for me as my feet stuck out on those hospital beds and my son’s bed that I used while staying down stairs.

I can remember sitting up on couch just gazing out the window feeling every heart beat. It seems like (and still even today) any beat or funny sensation is felt and somehow sends a message to your brain that you better pay attention. My parents were amazing too! As well as my brother. Listen to me, forget everything……Remember your family! They are the only thing that matters!

As I was starting my recovery process-I was told that I would make a full recovery in 2 months! Literally, this was written on my “short-term” disability insurance forms. I work for MCI-formally Worldcom (bankrupt) and luckily had pretty decent coverage for the 2 months that I was out. Little did I know that the 2 months was the expected time that my breast bones would be healed back-not necessarily me ready to go back to work and just all of the sudden be like the “old Brian” and as if nothing had ever happened.

I started a walking program while on disability we would drop my son off at pre-school and I would start walking and then when my wife put him finally into the class, she would come pick me up down the road. I noticed a pain in my right hip. I had never had any hip problems before and as a competitive tennis player, I was in pretty decent shape. However, once you go through this type of surgery, you are pretty much back to square one and will need to work on getting back into shape. Chance are, you might not get back to your old self again. That’s tough, but I got a second chance! I am very thankful!

The hip pain eventually moved down to my right calf muscle and stayed there for almost 5 months! I went to my doctor, who referred me to a vascular surgeon-Jim Cook. He had me do a test where they measure your Blood Pressure on your ankles and arms, do a stress test and measure you again for your circulation. I thought everything was OK, but when I met with the doctor again, he said that I had a form of
claudication” in my leg. Then, I panicked! I thought-great, my leg is going to come off and I will be in  a wheel chair. That’s what happens when you go to the internet and are not sure what you are really looking for. Be careful!

The pain in my leg would seem to come and go. It turns out that when you have a tear, it moves around. Which explains why some days I wouldn’t really notice it and others I would. Especially on hills or stairs. It was determined that I could do a couple of things. Do nothing, with the chance that it would improve over time or, get an angiogram and see what was really going on.

I was leaning to the opinion, I will give this one year and if it’s not better, I will get the procedure done. However, I was goofing around on the internet one night and came across the Stanford University Website. Little did I expect a return email as I had sent other experts on AD emails with no responses. I sent them my story and I received an email back from Dr.Craig Miller himself. He’s probably the most knowledgeable surgeon on Aortic Dissections on the planet. Here’s his biography! Craig put me in touch with Sunny and the co-department head, Dr. David Liang and I sent them my medical records and all my CT scans. These folks have a special ward called the Marfan’s Syndrome Clinic. It turns out that a majority of Marfan’s patients have aortic dissections or other connective tissue disorders.

My time at Stanford was going to consist of me getting some tests done on 3/19 and having a “flap fenestration” done on my left leg and an aortic stent either in my iliac artery or aorta (true lumen). However, after a series of tests, it appears that my circulation had improved enough that I didn’t need the surgery. My present situation is half of my body is being fed the blood via the “false lumen” and the other side (right) is the “true lumen” side. Dr. Liang decided that I basically needed to work to get my heart rate back up, after discovering that the root cause of my aortic dissection was most likely caused from a defective valve. It turns out that I have a “bicuspid valve” instead of a tricuspid valve. He thinks that this is what lead to a weakening of my aorta. I originally thought it was caused from High Blood Press/Stress and many years of competitive tennis and some heavy weight lifting in my late teens and through late twenties. I am also taking some medication for depression. Read my depression section for the name of it. It seems to be helping.

My hope is that this site will help other people find more information on living and dealing with an aortic dissection. Part of my therapy is trying to make this site very helpful to others. I feel fortunate that GOD gave me another shot at life and I need to help others too!

Update: 8/20/04:

I had my CT scan done about a week ago at CDI imaging in Federal Way WA. They have the most sophisticated machine in the country. I had my echo cardiogram done about 2 months ago. So, I had my meeting with my cardiologist, Dr. Sandra Gan from Stanford a few days ago. My CT seems to have stabilized as I am 2 days away from my 1 year anniversary. My echo seems to look good as well. But, my Blood Pressure is high about 50% of the time and I had neglected to take my night time medications, so I am taking them now and will start checking my BP starting Sept 1, 2004 and track it. I am also going to really try to make sure that I exercise EVERYDAY (7 days) a week for a minimum of 45 minutes.

Update: 12/25/12:

It’s Christmas 2012, I am coming up on 10 year anniversary on 8/22/2013!!! I made it over another hurdle -the 10 year mark! I am going on 2 years now w/o a CT/MRI and believe that I will need to get one this next year again after having a CT 8 straight years and then switching to a MRI/MRA. I am still playing tennis 4-5 days a week and plan on trying to … Or… I will finish in the top 5 in the PNW for the Men’s 50’s next year. I am also going to be captain again of the USTA team 4.5. I am also going to get over my fear of flying as well. I am sick and tired of living in fear of the “what if’s?” and let it ruin my ability to travel and go on vacations with my family the last 20 years! I am amazed at the response I have had on this website and the incredible help that Dr. David Liang at Stanford has been able to provide. I am so thankful for his support!!! I am so blessed to be able to still have my wonderful family and beautiful kids.  I hope to have this website for another 30 years! Or more!!!!

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