Hi everyone! It has been quite a while since I've stopped by and updated everyone. I wanted to though because I know how important it is to read success stories. I went through this nightmare really bad for about a year. Suffering from extreme vertigo, constant head swimming, brain fog, vomiting, migraines, visual disturbances, tinnitus. I was practically deaf in my left ear. I felt like I was totally possessed and I felt like I was robbed of my life. I went to doctor after doctor to try to get a diagnosis. MAV was the only thing that fit for a long time. I'm still convinced that I was experiencing vestibular migraine. I think the causes of VM is different for everyone. I'm hoping that if this post helps one person then it will be totally worth it. I can't even count the number of hours that I spent combing over internet forums to try and diagnose the monster inside of me.
My doctor told me that I had "anxiety" and it was all in my head. My ENT did vestibular testing and everything was "normal". My neurologist told me that my brain was healthy. My MRI was clear.
I want to say, don't ever stop advocating for yourself. You know yourself better than anyone. Don't stop fighting until you get an answer. I only got an answer when my neurologist suggested that I go back to my ENT to have my ear cleaned out because he couldn't see my eardrum. Only then, 8 months after, did I finally get a lead. My ENT said "You have something going on with your ear but you need to see someone even more specialized than me" that is when he referred me to a neuro-otologist.
I went to this neuro-otologist. Its a doctor that specializes in ears and head/neck based tumors and surgery. Immediately, after scoping my ear he told me what was wrong with me. He said that I have a cholesteatoma in my left ear. My eardrums were retracted and I had a fistula in my right ear. I had to have a high-resolution CT scan to confirm it. It was confirmed and surgery was scheduled.
Surgery was really tough. The surgeon had to drill out my mastoid to remove the cholesteatoma. He rebuilt my hearing bones with a titanium prosthesis because they had been eaten away by the growth. He also rebuilt my ear drum and put a tube in it.
I'm now two months out of surgery. I'm 100% back to myself. No migraines, no vertigo, no neck pain, no rocking on a ship. I'm driving, going to grocery stores, not having to wear sunglasses. Enjoying my life. So very grateful to my surgeon for giving me my life back. I now have normal hearing too.
I just want to give you all some hope. Don't stop fighting for answers and don't ever give up hope. I'm not saying any of you have a cholesteatoma but it was the root of my issues. Tell yourself every day that you will get better. Don't stop advocating for yourself.
Thank you all for your help when I was battling this monster. You really helped me through some very tough times. I'm planning to stop by from time to time to check in.
Wishing you all the best.