I needed Brain surgery in 2014 after going to my primary care doctor for an earache. Id been seen in February 2014, given 2 weeks of antibiotics. After 2 weeks I was to go back for a checkup because I was still having inner ear problems.
When I went back to my primary care, she informed me she could not prescribe more antibiotics and she referred me to a ENT. The ENT’s office called me that week for an appointment the following week. The Ent did an exam, did a biopsy of my inner ear (left side), ordered a MRI after doing nasal scan and finding nothing. That Friday after my appointment with her, she called me. Told me I had a 3.5 centimeter tumor on my brain stem . She referred me to Dr. Tina Huong (an ENT and Neurosurgeon) who immediately called me after receiving my MRI results. The following Tuesday I was in her office in Minneapolis U of M.
In all this process I had too tell my children what was happening. My youngest is a RN, so she kinda knew what was happening to my brain. She drove me to the ENT in Minneapolis and basically asked the questions I had NO idea to ask. 2 weeks later I was back there getting blood tests, allergy tests because of my body’s allergic reaction to general anesthesia and other things they would normally give patients to keep them asleep while being operated on.
I had 2 other surgeons to meet who were also going to be there doing my surgery. I had eye tests, hearing tests, and many many nervous feelings.
I had my surgery scheduled for March 10, 2014, and my neurosurgeon #2 informed me that the MRI showed him I had Hydrocephalus (water) on my brain from this tumor being so big. It was closing the opening for my spinal fluid. They informed me that if I should start getting headaches before my surgery date, I needed immediately was to get to the ER…That wasn’t comforting. Since through this process to this point I’d NEVER had headaches, balance problems, or difficulties. Just an earache.
Now 2 years after having my surgery, I have disabilities that prevent me from doing some stuff I loved doing. I have problems deciphering where sound is coming from. (this is horrible for me, as I am a hunter).
I had my yearly MRI in August and my ENT said part of the tumor has grown that they left on my brain stem. They left 2 percent on my brain stem because the tumor rests on my facial nerves. I was working 50 hours a week and have 2 college degrees. But after my surgery I’m lucky to be able to work 20 hours a week. Noise causes me huge issues, so doing what I did before concerning being employed has gone out of the picture.
I am now on SSI and am only allowed to make a certain amount of income a month. And I’ve been put on Medicare health care coverage after receiving SSI for 2 years after my recovery.
This is so frustrating for me. I no longer can do things I loved doing without finding more frustration…
I am looking for help, answers how i can improve my life after brain surgery and living with disabilities. I don’t qualify for a hearing aid because of the chunk of skull they cut out around my left ear. The Coclear I was told may be a option in the future. I’m 60 years old, I’d like to retire in a couple years and enjoy my life for a change. But Healthcare thru Medicare is expensive, and I still have medical bills.
I am a Hunter at heart, passionate about my drawing and just finishing a Photography degree…I have a lot of life left…I want the best for that life…