Brain Tumor- Take 2

November 1st, 2022 I had my yearly MRI. I got my results on my portal showing that in 12 months, it increased from 1.6 x 0.6 cm to 2.7 x 0.9 x 2.1 cm. Darn! I immediately had everything sent to the Epidermoid Specialist in NC. I then reached out to him 3 times, before (finally) receiving an email from his nurse on December 19… “He read your MRI and recommends surgery.” 

That was the entire email. Like… tomorrow? This year? How do I sign up for that? Can I ask him questions first? I hit “reply” and fired off 22 questions. Her response was something along the lines of… “He’s going back to Japan in the morning and will return mid February. He will be here for 1 month. He does not do Zoom appointments. Do you want to schedule surgery? “

Hello, anxiety! 

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Today- January 12- was my first Dr appointment. Dr Boimel is a Radiation Oncologist at LGH. She told me that my tumor is way too big for radiation only. She recommends surgery and then to follow it up with 6 weeks of low-dose radiation Monday through Friday. It would start right after surgery if the surgeon doesn’t think that he removed it all, or we will follow the tumor closely with MRIs every 3 months and as soon as we see any regrowth, radiation will begin. Because of the tumor’s location, I will most likely lose my hearing from radiation- IF it survives surgery again. She strongly recommends Dr Lee, after looking at my original MRI and how successful my first surgery was. 

Though the appointment was full of information, I left her office feeling much less stressed than when I arrived:) 

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I spoke with Dr Stephanie Weiss at Fox Chase Medical Center. We discussed options, but in the end, she recommends surgery and then contacting her if it starts to grow back a third time.  Though some people are treating epidermis with radiation, She does not feel that the data available is strong enough to take that route. She said that the radiation risks are too high for me, since I'm young and the side effects would be too great.She was nice, but I think that I will follow up with the local radiologist after surgery. I see my previous surgeon in 6 days, then we should have a plan!

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On 1/27 we drove to Philly to meet my prior surgeon, Dr Lee. What a weird appointment. I went there with so much faith in him, and left dumb founded. Three days later, we realized that he never looked at my MRIs from the last two years, so that is why it seemed that he was having one conversation, while we were having another. So, he looked at my newest MRIs and still has the same recommendation- 

He tells me that I can never be cured, since some of the tumor is stuck to my cranial nerve. He said that the tumor can only be “managed”. He’d like to manage it but doing surgery approximately every 10 years. I’m only at 6 years, so essentially he’d like to wait at least a year or two. If I get life altering symptoms, the plan will change. 

He was literally shocked that I had talked to Radiation Drs. I don’t know how he has never heard of radiation being used, when it was just done at his hospital and he is Head Of the Gamma Knife Radiation Unit.  Then he got stuck talking about how you can’t get “good” info from Facebook groups. I tried to tell him- multiple times- that i got zero information from the Facebook group, but I went to see TWO Radiation Drs. Which is where I got my information from. 

He proceeded to talk negatively about Dr Fukushima is NC, though they’ve never met. He told me that Dr F is only recommending surgery because he’s getting ready to retire and wants my money. I know that this is not a fact, but not it’s planted in my head, so I already don’t fully trust him. We are still driving to NC on 2/14 though to talk to Dr F.

Im even more confused about what to do, now. 

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I was to meet Dr Fukushima in North Carolina on 2/15. On 2/12, I received an email basically saying that he decided to stay in Japan for a few more months, and sorry for the inconvenience. He’s about 80 years old, so I’m assuming it’s health related. However, I’m no longer considering him my surgeon. The communication from his office has been horrible and this email was the icing on the cake. 

So, I was able to get in with another surgeon out in Pittsburg on March 7th. Dr Gardner is another surgeon recommended by people on my Facebook Group. 

I also started with a therapist this past week to talk about the anxiety all of this is giving me. When I get anxious, I veg out in front of reality TV shows. I then get disappointed in myself. But, he pointed out that I could be costing much worse ways to deal with my anxiety and take, should give myself a break! 

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Jason and I headed to Pittsburg for an appointment on March 7th.  My appt was at 10. around 10:20, I got online to start reading reviews of the Dr.   The basic review was "Great Dr, if you don't mind waiting to see him FOR HOURS."  "Weird!", I thought.  At 10:35, I was taken back into the room.  At 11:30, HIs resident casein to ask 100 questions.  At 1:05 I finally tracked down a random woman to make sure that we were not missed somehow- she honestly seemed shocked that we were still waiting to be seen.  She returned with some BS excuse about how the MRI machine was down, so results were taking longer than usual. I did not have an MRI, so you'd think that I would have moved up in the list, not back.  Finally, at 1:25, the Dr walked in our room - never mentioning the 3 hour wait, lol.  

I really liked him though.  He asked a lot of questions and never made me feel rushed. He said that he will take me to the OR as soon I feel ready to go. It could be next week, next year, next decade.  He basically said that I am not harming myself by waiting, but that it is big enough and causing enough issues that it could be removed at any time,  He said "Only you will know when the symptoms are bothersome enough to risk a third brain surgery- you just let me know when you are ready."  

So, the plan (right now) is to repeat my MRI around October to watch its growth. I think I'll probably have surgery after that MRI or after Christmas.  He agrees, that if he can not remove all of the tumor, that it is reasonable to try radiation for 6 weeks afterwards. I just liked that he was willing to listen to my thoughts without making me feel idiotic- or talk about social media the entire appt.

Who knows what will happen in the fall... I may be ready for surgery, and decide to go back to my original surgeon inPhilly since I already know that he is a skilled surgeon,  but... as Jim Gaffigan says "You know what they do with the bad brain surgeons? They don't let them become brain surgeons!"

For right now, I am going to be charting my daily symptoms and relaxing and living life and preparing myself for the fall! (While continuing therapy)

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I had a repeat MRI early October 2023. The tumor grew 10%. It’s now 2.7 x 1 x 2.1cm. Dr Gardner counts to say that I determine when I go to surgery. I’m have not had any headaches or dizziness lately. My swallowing issues have gotten a tiny bit more frequent. I’m not ready for surgery. Repeat MRI in one year unless my symptoms change. 

Thank God!!!

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October 2024 brought bad news... Ironically I wore a shirt to my MRI that read "I'm Fine" in complete sarcasm. I knew it was coming...

The new measurements are 2.7 x 1.4 x 2.7cm.  The volume increased from 5.67cc to 10.21cc.

Dr Paul Gardner in Pittsburg called via a video appt and says that I need surgery but that it is not emergent, so that I can figure out Jackson's medical journey forward before I schedule my surgery. Ideally, I'd prefer to have it on 12/26 when the girls are around to help with the boys and the house for a few weeks.  Jason's sisters also said that they would fly out to help! 

I have been complaining to Jason over the past 2 months about these random intense episodes of dizziness- I can t replicate them nor make them go away when they randomly occur. I have also noticed a frequent annoying dull aching radiating pain from my "clogged" right ear to my bottom and top jaw. I went to my Family Dr yesterday to make sure that I didn't have an acute ear infection, and walked away with the dreaded diagnosis that I was really hoping to avoid... Trigeminal Neuralgia. I was started on Neurontin.