I can’t believe that this day two months ago I was being taken back to have brain surgery. What’s crazy to me was how fast this whole process of learning I had a brain cyst to then going into surgery happened. Literally two months. But I had been dealing with the symptoms of this brain cyst for 4 years. And if we are being technical, I had been dealing with this my whole life.
If you haven’t read my past blog posts on this topic I will give you some background on what was going on in my life the past 4 years.
When I was a senior in high school I vividly remember sitting in my AP Psych class and boom, started having a headache. But this wasn’t a normal headache. It was right between my eyebrows and just was dull and so irritating. So what did I do, well nothing. A week later after still battling this headache I finally went to the doctor and was diagnose with having a sinus infection. I was put on steroids and this helped slightly. But I went through this process for a year until I was sent to see a ENT (ear, nose and throat doctor). Who then told me I needed sinus surgery. Then a year later I was told by a different ENT that I needed another sinus surgery. Both of these had temporary effects on my headaches. As well as by this point of being a freshman/sophomore in college I had noticed my vision changing.
I have had a stigmatism since I was 7 and had glasses since then too. But my vision was still almost perfect so I never wore my glasses. But when I was in college I started noticing that I couldn’t really see the board and I thought since I had two sinus surgeries that sinuses weren’t my problem anymore and I should see if my eyes were. I then went to the eye doctor and they told me my vision had gotten worse, by a good amount. So I then got glasses which I have had to wear ever since that appointment. But even with that no change in the headaches.
Another change that I had realized started was that I had gained a substantial amount of weight. Literally 20 pounds in a year. My diet didn’t change, nor my exercise amount, etc. just boom hi, here is 20 pounds.
Well I then saw a third ENT who was trying to see if I needed a third surgery. I had a CT Scan as well as an MRI from a previous neurology appt and boom, a cyst.
It was confirmed after my surgery from pathology that I had a Rathke Cleft Cyst. These cysts are formed in utero and grow as you grow. Most times these cysts are just there and cause no harm. They find them on autopsy’s and people can live their whole lives not knowing they have them. But in my case, mine was in the worst spot. My cyst was only about 1 centimeter big. I’ve heard stories about how people have them the size of golf balls. But again, mine was in a bad spot. Mine was on my optic chasm as well as right near the stalk of my pituitary gland. So to help break that down, this is what was causing my vision to get worse as well as causing my body to not be able to burn calories like it should. But this made things more complex for surgery like they knew I was going to leak spinal fluid into my brain, they knew I was a high risk for diabetes insipidus (which I got twice), but the people at OHSU were just the best.
Enough about my cyst and what happened. Let’s talk about now, 2 months later. I feel AMAZING. It’s crazy the difference I felt just days after surgery. Even though I had stents in my nose, packing, had IV’s, tons of meds to take, I felt better than ever. I stopped taking my pain meds about 5 days out of surgery I felt that great. And they literally broke my nose for the surgery. About a month later they took out my nasal stents and packing. Basically vacuumed out my sinuses. My ENT then noticed a little lift in the stitching of the patch that covers the hole to my brain and decided to put more packing to help make sure that it fully healed. (I currently still have that packing in and will have it taken out the 28th).
After surgery I had been pretty excited to see how I recovered and what would change. One thing that has been hard to cope with is my vision. I am no doctor but I had told myself that my two lesions on my optic nerve would heal, since lesions are kind of like bruises but on your brain. I thought my ganglion cells in my eye that had died would grow back and I would have my old vision back. Come to realize that ganglion cells don’t just regenerate like normal cells and basically my vision won’t get worse (it obviously will with just general age growth) but it will never get better. And for me that is so hard to deal with right now. It will take time to settle into that, but right now I am just happy to be alive and well.
Each day is different with how I am feeling as a whole. Some I am pretty congested while others I feel like I can conquer the world. But again, I’m only two months post BRAIN SURGERY. Like seriously I have to remind myself that I literally had brain surgery. I’m not going to feel 100% for a while. Nose surgeries take at least 3 months to fully heal from. But I just really wanted to thank everyone who has been apart of this journey with me. Through all the years of complaining of headaches, to vision loss, weight gain, I now feel like myself again and that is such an answer to prayers. I still have a lot of healing left, doctors appointments, MRI’s, blood work. But I am glad I am dealing with this now and have such an amazing support system.
Major shoutout to my husband Christopher who literally sacrificed his honeymoon, multiple hours of sleep, back pain from the couch bed at the hospital, and many many other things to help take care of me just 4 days after being married and he still takes care of me. He is so amazing and I am so grateful he is my partner in crime. Love you Hokoe ❤️
And if you guys are struggling with chronic pain or illness, keep fighting and searching for answers. It took me 20 years to figure out I had this cyst and during that 4 years of chronic pain. I know sometimes it’s hard being told everything is fine. There is nothing wrong even though you know something isn’t right. You know your body best, and listen to it and keep pursuing wanting to find answers. It’s worth it. ❤️Love you all, have an amazing week.