These past few weeks have been incredibly crazy busy. I have been working a retail jobs this holiday season while juggling multiple doctors appointments and MRI/test, so I thought this would be a great time to talk about a (health update). Let’s first start with my (MRI from 11.22.17) I was going in for 1 MRI appointment but getting scans for two areas. The first area was my brain, the second was my low hips/back. Within the next week, I got a phone call from my Epilpsey doctor’s nurse asking if I saw the doctor note on (my chart) from my MRI. I said “no but I’m looking at it now, I didn’t know the report was in”. The note/report was loaded with good/bad news. I want to be honest with you all when I read the report all if it seemed like bad news.
MRI (11.22.17) Brain: Did show change but my neurosurgeon was not worried about the change. He said it’s something that would be expected, especially after having surgery. Hear that there were changes was scary and when we asked for him to explain even further, he couldn’t really. While my mom and I were leaving the doctors office, I did end up saying if Dr. L was truly worried about anything he would say something. That’s the type of doctor he is and I trust him 100%. Unforchently in the report, they said that they saw an AVM (Arteriovenous malformation) in the muscle area of my neck. This REALLY SCARED my mom and I. When we met with my neurosurgeon he was so sure if I truly had an AVM so he suggested doing a full spine MRI.
Hip: Report said that they found an issue with the cushion in-between my pelvic bone and leg. They also marked in the report that my uterus was thick, so they were concerned about that and wanted me to see a gynecologist and have an ultrasound. I was having my hip scanned because of pain and discomfort that I’ve been experiencing for three years now.
At first, the pain wasn’t bad but slowly over time it’s gotten worse. I talked to a variety of doctors but no one wanted to help me out with my epilepsy doctor. I talked to her about my discomfort and my issues with getting a doctor to listen to me. Without going into major detail, I had an EEG done back in September and I expressed to the doctor and nurses about my back pain and they could tell I was also in pain so I had an X-ray. From the result from that, they suggested that I should get an MRI done to look more into the medical issues.
MRI (12.05.17) I had my full spine MRI, to make sure/get more information about my spine and possible AVM finding for the last MRI on the (11.22.17). I just read the report last night while looking through my own copy/images of my spine but I still have not heard anything from my doctor. I’m just concerned about what all the information says and what can we do for my overall health moving forward.
I just met with the gynecologist yesterday on (11.13.17) and she was amazing. I loved every moment of meeting her for the very first time. She not only knew everything about health history (especially from these past 3 years at (Northwestern hospital) but she also knew so much information/facts about Cowden syndrome patients. This doctor came recommended from my genetic counselor so I wasn’t so shocked that she knew what Cowden syndrome was but it was still amazing to have any another doctor where I didn’t have to explain anything about what Cowden syndrome was. Another thing that I loved about this doctor is that she not only wanted to talk about my gynecological health but she wanted to talk about my entire health. She asked about my breast diagnosis from last year and how that all went and then she planned out her recommendation for my current health and future plans. I know this may sound strange but I’m very happy to add another amazing doctor to my team. I’ve had an amazing experience at Northwestern Hospital and I’m so happy that my mom and I made the choice to follow my neurosurgeon from the University of Chicago to Northwestern.
That’s it for tonight, I will definitely keep everyone updated about my health and journey with cowden syndrome.