Post Treatment Experiences

[UkulelesAreAwesome]

I was diagnosed with left sided AN in April 2022.  I had gamma knife radiosurgery at University of MN in August 2022.  I focused a lot of my energy on just getting through the head frame placement and did not think much about life after radiation.  In hindsight the head frame placement was not that bad.  It was quick and I was so grateful for the excellent medical care I received.

I experienced the normal increase of balance problems around six months after radiation.  I used a cane once in a while just because I get exhausted trying to walk a straight line.  There was one very close call when I walked quickly onto the top step outside my front door and bent over to pick something up, stood up quickly, turned my head to the left quickly and started to fall backwards.  I was very lucky I caught  myself and my head did not hit the cement steps behind me or the sidewalk.  Unfortunately that close call happened in front of someone.  Now I've decided there are days one has to choose whether to be embarrassed by a cane or be embarrassed by tipping over.  If I'm feeling dizzy or feeling pressure in my head, I use the cane.

I had my one year MRI in August 2023.  That was a frightening experience.  I am pleased to say the tumor has shown no growth since the day of radiation.  I live in a rural area and my care team at University of MN allows video visits.  They have allowed me to get my MRI locally.  Over a year ago I began experiencing a feeling of incredible pressure near the left ear.  Sometimes that pressure/pain runs up to the top of my head or to the back of my head.  I was relieved to find out that is a normal thing for now and maybe for longer.  We are probably all in the same boat and when we feel pain or pressure in that tumor area, we worry about regrowth. 

I still am tired most of the time.  Housework wears me out.  Walking up and down the steps in my house or walking in grocery store aisles makes me feel car sick.  I need to stop relying on getting pickup orders and try harder going to the store in person.  I've tried going for walks and the feeling of motion sickness hits fast.  I found that if I use a cane to go for a short walk, that helps tremendously.  It keeps me walking straight and there's less fatigue. I'm thinking I might get some kind of walking stick so I look less weird.  I am wondering if a walking stick might also be less heavy compared to a cane.

I use a pedometer when I walk.  I have read a fitness tracker or fitness watch emits a constant level of emf directly into the body which may possibly contribute to growth of an existing tumor.  I don't know if that is true or not.  But after reading it I am scared to get a fitness watch even though I'd really like one.  I can't afford one right now anyway.  I have learned having an AN is expensive in regards to medical bills.  I have health insurance through my employer and they have allowed me to work from home.  I am hoping that situation will continue.

I still have sharp pain in the left ear area sometimes.  It seems to happen often at night.  I find an ice pack can be helpful, some tylenol, and maybe raising my head up higher on more pillows.  I had tinnitus which resembled a chirping bird or cricket prior to radiation. Now my tinnitus is a lower pitched constant whooshing or buzzing sound.  I try not to think about it and try to tune it out.  I had vestibular rehab last year.  I continue to do my exercises, but I still notice that I don't walk straight and can lose balance if I'm not focused on walking.

The emotional aspect of a brain tumor might be the hardest part.  We see people feeling so awkward when they don't know what to say to us.  We encounter people who assume we are now mentally handicapped because we have a tumor, or because we had radiation or surgery.  We miss out on opportunities in the workplace because we are the deaf brain tumor employee.  I already had almost total hearing loss in the left ear prior to radiation.  The hearing loss is complete deafness now.  My right ear also requires a hearing aid.  Hearing loss is isolating  One has to decide to spend their time engaging in activities where hearing is not important.  I don't understand much about other types of brain tumors, so I really don't expect those without a tumor to understand mine either.

I had a short period of time where the left side of my face was numb and I had a 3 or 4 week time period where my tongue was numb as if I'd had a lot of novacaine.  That situation improved.  I still have a little bit of twitching going on near my left eye and left side of my mouth.  It is noticeable sometimes and is worse when I am stressed.  Even though I would not want to go through all of this again I did learn things from it.  I'm better able to keep things in perspective.  I'm a bit more patient.  I'm focused on faith more than I had been.  I do my best to combat the depression and anxiety that easily accompanies any serious medical diagnosis and the "new normal". I'm grateful that at this point things have not changed with the tumor.  I know it could change at any time.  Local medical professional are not experienced in AN so I have been fortunate to have the care team at University of MN. 

My goals for this year are to try my best to get more exercise and be more positive about my new normal.  I know how important walking is but I also know it isn't easy.  It's a challenge to find the motivation.  I have some projects I hope to do around my house this year too and those things will require physical effort.  I hope to be able to accomplish more than I did last year.  Last year was just about survival and adjustment.  I'm hoping for better things in 2024.  Best wishes to everyone on their AN journey.

[donjehle]

Thank you, UkukelesAreAwesome, for sharing your experience on the Forums!  We never know how sharing what has happened to us can help someone reading the posts.

I just wanted to post briefly about what you said about fitness trackers.  First, let me commend you on your use of the pedometer.  Pedometers can be a great tool to encourage us to maintain our daily steps or to gain more steps than we usually do.  And exercise is so critical for us to be able to maintain our balance. 

I use a fitness watch instead of a pedometer.  Like you, I am very cautious about EMFs and how they can affect our health and wellbeing.  However, I use a fitness watch which enables me to turn off or on the Bluetooth which generates the EMFs.  So, for most of the week, I have the Bluetooth turned off.  The fitness watch still stores my steps and other health information, even with the Bluetooth turned off.  Then, once a week, for just a moment, I turn it on so my watch can transfer the information to my fitness app.  Once it has transferred the information, I turn off the Bluetooth on my watch.  So, I may be exposed to the EMF from my fitness watch for, maybe, a minute a week.  But I consider that minimal for the benefits I receive from my fitness watch.  I normally have my Bluetooth turned off on my cell phone as well.

Speaking of the cell phone, occasionally someone might feel pressure near the ear if they wear earpods or if they put the cellphone up to their ear.  I try to put my cell phone on Speaker mode so that I do not need to hold my phone to my ear but can hold it a distance away.  I am not saying that is what is causing the pressure you are experiencing near your ear, but it is something to keep in mind as we try to limit our exposure to EMFs as much as is possible.

I wish you the best in your journey!
Don