Sara’s Story

Site created on April 16, 2021




So for about the last six years I've had weird pressure in my head with vision issues as some may remember. At night I can hear my heartbeat in my head, literally the blood running through my veins, it gets annoying. It also hurts after a while and makes me woozy. This happens when I shop or go anywhere where the pressure changes quickly. That prompted me in 2015 to get an mri where they found a meningioma on my brain. I was to follow up with yearly exams, they didn't see any other issue and weren't worried. My last exam was 2017 mostly due to finances. It cost us roughly 3k a year in south dakota for me to do this. 


Fast forward to this year, new insurance, new clinic in Minnesota. I found a mass in my armpit which prompted my doctor here to order a mri on my head and a diagnostic mammogram. Mammogram spotted a small mass in each breast, which they don't think are cancerous, but I will go back in six months to review. Lump in my armpit isn't a lymphnode or breast tissue so I have been referred back to my doc on that. Chances are that it is just a lingering symptom from my covid in December. It doesn't hurt or bother me at the moment. Just looks like I have one fat armpit. 


My MRI came back last week and my doc was honest. She said she had no idea what was being said in the report but she was "urgently referring me to neuro". Neuro lost the referral and the 2nd time misssd it on the fac machine. They finally scheduled me on the 28th. Cully called back and communicated the stress of our waiting and got me in sooner.. I had that appointment this morning. 


My neurologist said my tumor has grown significantly and will need to come out as it is causing pressure in my brain that he can see when he looks in my eyes. He referred me to a neurosurgeon who I met with this afternoon. 


Currently the tumor, about the size of a silver dollar, sits on the small crevice between the two hemispheres of my brain near the back of my head. There is an artery that runs along this valley down around my brain and into my heart. They do not want this artery blocked of course. First step is to have an angiogram to see if the tumor is being fed by the artery or if it's just pushing on it. This will determine how much of the tumor will be removed. If they have to leave a bit in (to avoid damage to the artery) or if the mass is cancerous (they won't know this until after removal), I will have to have radiation treatments. If it's just pushing, they will remove the entire thing if possible. 


We are waiting to hear when the angio will be and surgery will be shortly after that. For now I am on antibiotics and seizure medication because the pressure on my brain can cause them. He was surprised I hadn't had one yet. I will have to watch my sugar because the meds can cause an increase in glucose... so not so much candy for a while. 


I'm not allowed to drive, which is a bunch of bull, especially after getting the new car...and my love of driving. Doc was pretty positive im not going to die so thats pretty sweet and I will retain my memory and charming personality. They will shave about 4 inches of my hair for surgery. Ill have to stay in the hospital for at least a few days and be at home for up to eight weeks. 


So a pretty interesting couple of months ahead for our family. I'm excited to be rid of my symptoms and happy for answers. I'm nervous but not as scared as I have been. I'm worried about the financial impact but we will take that as it comes, at least we have a roof and reliable transportation throughout this. I've never been put under before so that will be a new experience AND I should get a pretty kick ass scar out of the deal.

Newest Update

Mayo!

Journal entry by Sara Simon —

Thought I should update this once again since my journey continues! First the good news - neuro and oncology teams have reported that my tumor has shrunk and they don't need to see me until next July. 
Next week the family and I will be staying at the Hyatt Homes hotel in Rochester where I will be having the hole in my heart patched up. I have a busy week... 
Monday- covid test 
Tuesday- EKG, blood work, and Esophageal Echocardiogram.
Wednesday- recovery day and a bit of homework and school 
Thursday- heart fixin day! 

It's a major surgery but it's considered outpatient. I should only need to stay in the hospital overnight if my procedure is late in the day. Regardless we will be staying at the hotel after so I'm close if anything was to happen. Docs say I should be able to go back to work Monday if I take it easy. 

Hope you are all well! I'm feeling pretty good about it all. I have another great team taking care of me. I'm glad that this should be the last of my medical endeavors for a while.  
Read More of the journal titled "Mayo!"
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