Originally Published: 03/04/18 at 11:54 am
|The glowing ring is the stent in my Aorta|
This story all begins on April 10, 2010. I will tell a very long story as briefly as I know how. I was visiting my sister Lauren in Memphis with my new boyfriend Patrick for the weekend. Saturday morning we were going to a farm in Mississippi. We were having a great time, riding around the farm on ATVs, until the day took a tragic turn. While I was riding on the ATV it tipped over and I was thrown out, the ATV then fell on top of me, with the roll bar landing on my chest.
This is similar to the ATV that we were riding in
Patrick probably saved my life, and acting quick lifted the ATV off of me, I was already unconscious. Patrick later told me he thought I was dead at this point, I didn’t wake up for a few minutes and remember about 1% of this. Patrick went and flagged down someone riding another ATV, and they went back to the house and came back with a pick-up truck, and my sister. I was later told they wouldn’t let my sister come by me, because they thought I was dying and didn’t want her to see. That was a scary thing to hear. By this time they had called an ambulance, and then my sister, who knew something was wrong called a MedEvac (helicopter) and I was airlifted back to Memphis to the Med, which thankfully is a level I trauma center. This was the scariest most blurry few hours of my life, I only have a few memories from that day after the accident. The greatest one in my mind is when I got PISSED at the guys in the MedEvac for cutting off all of my clothes without asking first. I was wearing a brand new Victoria’s Secret bra, and those are NOT cheap! I really didn’t think anything was wrong with me, I was probably in shock, because I was still expecting to fly home the next day somehow. They knew I was in trouble, but didn’t know how bad until they ran some tests.
Thumbs up after the accident
They had a fantastic Vascular Surgeon on call at the Med, and Dr. Michael Rohrer was able to go in the less invasive way, and did an endovascular repair to my aorta by feeding the stents in through my femoral artery near my groin, all the way to my aorta. It was in place, but was covering part of my left subclavian artery, which I would learn much more about a few years down the line! I spent 10 days in the hospital, I had a chest tube inserted for my lung, I was wearing a sling on one arm for my broken collarbone, and taking a few steps was a huge milestone. It was a tough recovery. I spent a few weeks in Memphis to recuperate before making the trip back to Chicago. I wasn’t cleared to fly yet, so we would have to drive back to Chicago. After another few weeks I was given the ok to go back to work, but looking back now, I went back much too soon. Once I went back to work it was one thing after another. It began with anxiety, losing feeling in my left arm, dizziness, panic, headaches, one thing and one doctor after another.
By August 2010 I was already getting ready for more surgery. I found a great vascular doctor in Chicago, that I still see and he was able to place a bypass through an incision in my neck, that connects the left subclavian artery to the left carotid artery. This corrects what the original stent in my aorta was blocking. This bypass gives my left arm additional blood, because otherwise it steals blood from the brain. Also of note, I am a proud lefty, so having issues with my left arm is not acceptable! It is actually a condition called Subclavian Steal Syndrome. After this surgery, it was much better. There was a lot less pain in my arm, less dizziness, and the doctors could finally find a pulse in my left arm!
2014 came along and with it brought back surgery. None of my doctors have ever been able to explain where my back pain came from, or if it was even caused by the accident. I had pain ever since the accident, and my theory is that my back just became really weak from being immobile for so long. I had a herniated disc and had a discectomy at L5-S1. I also have degenerative disc disease, SI joint dysfunction, arthritis, and probably 10 other things that I have been diagnosed with because doctors just don’t know. My back is still an issue today, but after doing a ton of physical therapy, and yoga it is finally under control.
Then in 2016 I got married! This was obviously a big milestone in my life and deserves to be noted in this timeline. John and I eloped in Vegas on February 12, 2016 and just celebrated our 2 year wedding anniversary. I couldn’t have asked for a more patient or understanding husband. He is so supportive when I come out of a doctors appointment with utter disappointment. He deserves a medal for dealing with my crazy ass through the last few years of chaos.
Wedding Reception, August 2016 (me and my husband John)
Things were going good, my body was holding up, I hadn’t had any circulation issues for a few years. 5 months after I got married, on July 10, 2016 my dad passed away when his body finally gave up after a long battle with alcoholism. My dad was my hero and my favorite person on the planet, and after I watched him die, I honestly don’t think I have ever been the same. I thought the accident changed my life, well my dad dying was ten times worse. I have lost friends and family members before, but nothing can compare to losing a parent, especially when that parent is 62 years old and had he been able to get sober, probably would have lived 25 more years. I wish we had more time with him. I miss him every single day.
A cubs game for Father’s Day (my sister Lauren, me, Dad, and Aunt Missy)
2017 brought me the gift of more surgery also. It had been almost 7 years since my bypass surgery, and it had become blocked. I was getting a lot of numbness in my left arm again, and started getting dizzy again. I later learned this is pretty common and could even happen again, but let’s hope not! My vascular surgeon, Dr. White was able to go back in (through the same incision in my neck), and open the bypass, and unblock it. He then sewed it back up and closed me up. That day my blood flow in my left arm was great, Dr. White thought I was fixed, and was very pleased with his work. Of course nothing is ever that easy though, so after the surgery I got a blood clot in my bypass. It was blocked again, but this time they could fix it without having to open me up. They did an angiogram, and were able to remove the clot, and then placed 2 stent grafts in the bypass to make sure it stays open.
May 24th, 2017 Patrick, whom I mentioned above, my boyfriend at the time of the accident, and the person I was with that day, passed away unexpectedly. We had broken up a few years prior, but when you go through something like that with someone, you have a place for them in your heart forever. I hope he is at peace now.
After this surgery is when my body REALLY started to rebel against me. I was so frustrated at this point. It was over 7 years since the accident and I was just feeling worse than ever. My left arm hurt all the time, I could barely use it, it was weak, and did I mention I am a proud lefty?? I work in downtown Chicago, so I found a physical therapy place nearby so that I could do PT on my lunch break. My days are already almost 12 hours on a good day, so I really didn’t want to add any additional time to my day. I stuck with it, and did physical therapy until insurance wouldn’t pay for any more. My arm got much stronger, my back was stronger than it ever had been, but I still didn’t ever feel great. I kept seeing doctors, and they all said my arm and shoulder pain was just tight muscles, and would go away. I couldn’t do anymore physical therapy since they wanted $200 a visit when not covered by insurance, so I did my own physical therapy at home. I did yoga, started dancing a little, learned some Tai Chi, walked every day on my lunch break, read about muscles, and how to keep them healthy. I even rubbed some sort of smelly plant goo on my shoulder six times a day for a while. (it’s called comfrey and is actually pretty amazing.) By the end of 2017, I had had it with most of my doctors, as none of them could give me any actual help other then tell me to do physical therapy, which I couldn’t, or take pain killers, which I didn’t want to do. I tried to do the physical therapy that I had learned on my own at home. My doctors kept telling me I needed exercise and physical therapy, so I went all in and lost 25 pounds in the process, so really I cannot complain too much about my bad medical advice, because I’m looking good!
I had been to the ER in December 2017 where a PA actually told me to my face that I was not a priority because I didn’t look sick. I’m not sure what they are teaching in schools these days, but really? I had just finished telling him about my chest pain and left arm pain, and that I had 4 stents and just had surgery and a blood clot in the past 6 months They didn’t help me at the hospital that day, and I even wrote them a complaint which I never do. I am even madder about that day now in December 2017 because I was already having the symptoms I have now, and if the doctors there had taken me seriously, and not just written me off because I “looked healthy” they might have figured it out, or at least pointed me in the right direction.
Fast forward to February 2018, back to the ER – Lutheran General this time. Again, everyone is surprised as usual when I explain my issues. 9 hours of tests, and they let me go home, and tell me to follow-up. My husband John was with me, and when they told me they didn’t find anything, I started bawling. Not the reaction you would expect in the ER. It wasn’t that I wanted something to be wrong, I needed an explanation and no one could give me one. At this point I was so frustrated, nobody believed my pain, everyone thought I was over reacting. Most people don’t know what it is like to be in a body you are constantly scared of and don’t understand. This day I was so scared nobody was ever going to figure out what was wrong with me and I was going to be in this pain forever. Saturday was the ER, and Tuesday I called my vascular doctor, just to explain I had been to the ER, they said everything was fine, and requested that he send over a new prescription for more physical therapy since that is the only thing that helps. The nurse called me back and said there was something concerning on the CT Scan, and that the doctor wanted to see me before I do any more PT. They were able to get me in to see him the next day, and he took ONE LOOK at me, and knew exactly what was going on. I was so happy that he could explain all of my bizarre symptoms, and pain, but so disappointed that it took literally years to get here. Thoracic Outlet Syndrome or TOS – my new diagnosis, is a nerve and a blood vessel being compressed by either a rib or bone, or muscle. This can cause pain in the neck, shoulder, arm, and ribcage, which is where 90% of my pain is these days. My symptoms of TOS are so similar to the ones I was having with my bypass blockage, nobody ever thought to look for another condition completely.
Dr. white can tell at this point that it is TOS, just can’t tell what is causing it. I am feeling very optimistic at this point. If he can fix this, and get rid of almost all of my pain, I don’t even know what I would do with myself! I have learned to live with this for so long, seen so many terrible unhelpful doctors, and tried so many different medications, I really don’t know what to expect if this fixes it. Monday morning (3/5/18) I am having an angiogram, the doctor will go inside and look at my arteries. They might be able to put in stents, depending on where the compression is, or if not they should at least be able to tell what the next surgery will look like. I am nervous and excited and scared, but mostly just trying to remain positive and remember that any improvement is worth celebrating!