If you’re new to my blog you might not know that I’ve been struggling with my health for quite some time. As I’ve shared in the past, I previously suffered from mold illness which kicked off a bunch of issues. I got to a better place after a couple years, not cured but better, and then I got Covid in 2022. This really knocked me sideways. I suffered from Long Covid, then I was diagnosed with Dysautonomia and then more specifically, POTS Syndrome (a form of Dysautonomia) but that’s all a post for a different day!
MY DIAGNOSIS
In September 2023 I was finally getting a handle on my health plan. I met with my PCP and we came up with a gameplan of specialist visits and diagnostic tests. I was feeling pretty good about it and finally felt like maybe I was on the path to get some answers. In the midst of all this, my Mom’s Neurologist wanted me to get an MRA because of a health scare my Mom had had at the beginning of the year. During my appointment with my NP, I halfheartedly handed her the letter from my Moms Neurosurgeon recommending the screening, not even remotely thinking that I would be getting ready to get the biggest diagnosis of my life to date.
Scan day came and I walked out the door feeling good about my appointment and positive that nothing would be found. An MRA is a simple test, much like an MRI, but instead of looking at brain matter, it can see the complete vasculature inside your brain. My scan went well, lasted around just 8 minutes, and I was home before I knew it. Not even ten minutes after being home, I got a notification from my PCP. I opened up the message and saw words I never thought I would see in my lifetime. “You have 3 unruptured cerebral aneurysms. You need to make an appointment with a Neurosurgeon as soon as you can.”
One thing I didn’t share is that my Moms health scare (all fine and not a stroke like they thought) ended up showing two small unruptured cerebral aneurysms in the ophthalmic segment of her internal carotid artery. Being that there was a family history, I was recommended to get screened. I knew what I was being scanned for, but I never ever thought I would have one, let alone three! I actually had no idea how common they are. Did you know 1 in 50 people have an unruptured brain aneurysm and don’t even know? I certainly didn’t! But that’s how common they are.
I was reeling. To be honest, I didn't know much about Brain Aneurysms at all. All I knew was the ruptures can be deadly. I immediately called my Husband and asked him to come home from work. I called that day to make my appointment with Neurosurgery and met with the Neurosurgeon that next week. In the time leading up to my appointment I learned more about brain aneurysms than I ever thought possible. Some of it very interesting, and a lot of it very scary.
The following week I met with the first Doctor, and he explained my case and recommended a Cerebral Angiogram. Some aneurysms can be watched if they are small enough, or in a certain area, but if you have aneurysms above a certain size this is what’s recommended to get a better look. Angio’s show so much more than the standard MRA - accurate size, accurate location, surface, etc. The test is considered a procedure, as they insert a catheter into your wrist or groin and go through that artery up to your brain. It's basically the way they can really map out a potential surgery and see exactly which procedure is needed to treat the aneurysm(s).
By now I was freaking out! The first Neurosurgeon was very nice, but I didn’t feel like much was explained. It was kind of like this is what we’re doing, and we want to do it immediately. In all fairness, I think I was still in shock, so maybe my expectations were a little high. I also think that they are so knowledgeable and are obviously Neurosurgeons, so maybe some don't feel as though they have to answer a million questions. They do this every single day, so I get it. But at this point, I wasn't sure if they were the right fit for me, so I decided to meet with a very well-respected Neurosurgeon from Penn in Philadelphia. I got in quickly and my appointment went well. I felt like we had more of a connection, and I decided to move forward with my Angio with him.
NEXT STEPS
Fast forward a few weeks and I finally had my Angio. The way I obsessed over this procedure leading up to it, was crazy. I read everything about it and even watched a YouTube video of someone getting one! I was super nervous, but the test went ok. I’m not going to lie, it wasn’t the most pleasant procedure, but it was tolerable and much needed. The Angio revealed that I had three unruptured wide-neck aneurysms. Two on the left side of my brain (lateral clinoidal and superior hypophyseal), and one on the right (superior hypophyseal) in my Internal Carotid arteries. Two of them were bilateral, meaning they were in the same spot on each side of my brain and the remaining was right near the left aneurysm on the other side of my artery. The bad news was that they are inside of my brain, which means that if they were to ever rupture, they would result in a subarachnoid hemorrhage. Surgery was recommended due to the risk of having multiple and my potential life expectancy, and I would need two separate procedures.
By now my head was spinning. I was reading everything I could to be educated in order to make my upcoming decision. This made me feel better in some ways and worse in a lot of ways. You come across a lot of scary stories researching brain aneurysms. I had no idea whether I should risk surgery or risk waiting. There seems to be risk no matter what we do. What if I rupture? What if I have complications post-surgery? What if I make the wrong choice? What if… what if… what if… This is the fork in the road for everyone and it's a very personal decision not to be taken lightly.
I had my Angio follow up a couple weeks later with my Penn surgeon and he explained my results in detail. He recommended Neuroendovascular Flow Diversion surgery. This was my only option for treatment due to the location in my brain (not that I wasn't thankful I didn't need a craniotomy), but each type of treatment carries their own risks. I did not doubt his expertise, his recommendations, or his approach, but after speaking with other brain aneurysm survivors, I decided to get a second opinion. I knew that my treatment plan would most likely be the same, but I think I was in a state of denial that I absolutely needed surgery right now or if they could be watched. I just couldn't get past this weird feeling of just moving forward, and felt like I needed to see one more Doctor.
This time I decided to search Jefferson Philadelphia and found an amazing female Neurosurgeon that I was drawn to immediately. At this point, my Husband thinks I’m crazy for wanting to see someone else. We both really liked the Penn Doc and he was very well regarded, but something in my gut was pulling me in a different direction.
We met with Dr. Tjoumakaris out of Jefferson Center City a couple weeks later and before she even spoke, I knew she was my Surgeon as soon as she opened the exam room door and smiled. She’s absolutely brilliant for so many reasons that I couldn't even list them all here, she’s a badass but has an excellent bedside manner, and I felt so cared for both by her and her staff. She answered every single question I had in detail, went over my treatment plan and educated me as to why I needed to do this procedure. There was no question that when she said I needed to move forward with my surgeries, that I not only trusted her, but that she was the one I wanted to perform them.
Like many scary health journeys, the Doctor you choose is extremely personal and so important because this will potentially be a long relationship! When you're dealing with a brain diagnosis, you really want to make sure you feel as comfortable and confident in your care as you possibly can. That's what I was still searching for and what I found with Dr. T and Jefferson.
TREATMENT AND RECOVERY
So obviously, since I mentioned today being the 1 year Aneu-versary of my 2nd surgery, I went through both procedures as recommended. I spent a wonderful Holiday with my family that December, soaked up as much Christmas magic as I could, and spent a lot of time ruminating over my life. On January 11th I celebrated my "New Year, New You" on an exam table at the Jefferson Hospital for Neuroscience treating 2 out of my 3 cerebral brain aneurysms. I had an eventful overnight stay in the ICU - the hospital was crazy that day with so many emergencies, but they were great and we got through it. The next day I was home and on my way to healing to prep for my next surgery exactly 3 months to the day on April 11th.
I had Endovascular surgery with a device called a Pipeline Flow Diverter. It's basically a little mesh stent, but it has a coating on it that helps prevent clots as the artery heals. One thing that a lot of people might not know is that while a craniotomy is a very invasive, difficult surgery and there is obviously a lot of risk involved, and the recovery is much much more involved (I can't even imagine!!), Neuroendovascular treatment has its risks and drawbacks as well. There's still quite a recovery time, sometimes the aneurysms don't shrink or don't heal, and you may need another surgery at some point. You also have to be on dual antiplatelet therapy for quite a while. I'm actually still on the meds! And I'm not saying this to scare you, freak you out, or make you question whether you should get treatment, if you happen to be here reading because you were just diagnosed. I just want to be up front and honest. These are the realities of the risk vs the reward and are things a very good Neurosurgeon will go over with you.
Do I still have my tough days? Of course! I've been through a lot with my health the last few years, so I still struggle mentally and emotionally some days. But I have no regrets. Even though this is not a diagnosis for the faint of heart, even though it's been quite a wild ride for the last year+ of my life, and even though I still have my difficult days, I'm grateful that my aneurysms were found. I had an option for treatment and some people don't have that. Some don't even know that they have aneurysms until they suffer from an event or start having symptoms. I know how lucky I am, which is why I felt that sharing my story and as much information as I could is important.
Today all 3 of my aneurysms are gone. One of them is taking a little longer to heal than we thought, and I had to continue my meds for a bit longer than projected, but that's ok. I'm thankful that I'm here, that I never have to worry about a rupture, and that I moved forward. I truly could never thank Dr. T and the rest of the Jefferson Team enough. You are all so amazing and not only most likely saved my life, but also made a huge difference in my life. Your dedication to your patients and their care is something I will never forget. Thank you.
If you or someone you know is dealing with a similar diagnosis, please feel free to reach out to me. I had an amazing support system with a few women that I found through Instagram and a Facebook group (if you want that info, I can send you an invite). While my family support was fantastic, I don't know how I would have gotten through it all without those women. I'm happy to answer any questions regarding my experience and am happy to help how I can. I'm an open book! I'm also going to list and link some resources that helped me through my journey.
RESOURCES AFTER DIAGNOSIS
This webinar through BAF that features my Neurosurgeon and answers so many questions
My Instagram account where I documented my experience in real time and posted info in my story highlights
Feel free to contact me with any questions. And if you made it this far, thank you for letting me share my story with you!
Christy
xo
