ANA Discussion Forum
General Category => AN Issues => Topic started by: Dismas72 on May 06, 2009, 06:46:40 pm
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Over the past three years I have experienced pain in my ear and a fullness feeling in my ear . My family doctor treated me for an ear infection. I experienced some crazy month long dizzy spells, my doctor blew it off. I noticed how people are not speaking UP! Got a hearing test and they told me to wear ear plugs when playing my guitar and mowing the grass. I felt like maybe I am going crazy and this is just how you're supposed to feel. Also during these strange feelings I'm starting to notice that the right side of my lip is feeling strange, right in front of my ear is feeling numb and half of my tongue is also getting numb. Once again my Doctor finds that my Thyroid is low and I should also start taking vitamin B complex. Finally last summer I tell my DENTIST about my strange numbness in such a random place's of my face and he sends me to see the only guy he knows, a jaw surgeon. He is also baffled by my symptoms and says let's do a MRI just to double check. Guess what they found? He told me I had a Tumor and needed to go see a Neurologist to have it taken care of. Now starts the PANIC. after a few weeks of being put on waiting list, I got in the see a very well know Neurosurgeon in the area through a friend of the family. He told me that my tumor was 2.7cm(27mm or 1-1/8" ) it was growing on my 7th and 8th cranial nerves and that it was also pushing on my brain stem. He very frankly told me that given my age(33) and the size of the tumor I was only faced with having it removed to prevent ultimate complications from the tumor that has been growing approximately 2mm per year. I was referred to his old school buddy who just happened to be one of the leading Neurosurgeons in the country and located at the Mayo Clinic in Rochester MN.
After meeting with Dr Link and Dr Neff they pretty much told me the same thing. After telling me about the possibility of facial paralysis and almost certain hearing loss along with other possibilities from major surgery, I went back 3 weeks later for my 9 hour surgery. They were pretty happy being able to actually save some of my hearing and my facial nerve. They in fact got ALL of it! and My next MRI isn't for 2 years. From the years of being misdiagnosed my body had already compensated my balance and I did not experience any of the vertigo and nausea! My face feels a bit tired to move,but you would never tell by looking at me. All in all I feel blessed to be alive.
Only All of the blessed people who have gone through the recovery process will know what is in store for someone that is facing this journey. Your mental strength will be tested. You will experience pain. You will be worn down. MOST importantly you will get through it!
Over the past 11 months I have visited this site. From the beginning when first diagnosed (after 3 years of being misdiagnosed) and being scared out of my mind and absolutely no idea even how to proceed in finding treatment or even what a Acoustic Neuroma is? To now where I have been through the toughest times of recovery and on the downhill slope where at the end of the day I look back and recognize just how great it is to not have any headaches,or say 'huh I didn't notice that jet engine that has been running in my ear that shouldn't hear anything', and just how good that feels. To feel just how a pain free day is a milestone after months of nonstop head pounding and fighting to keep a sense of a normal day. I just want to finally tell my story and most importantly THANKS to all who have been brave enough to want to help others on this site and just be there to listen or give any advice that may help someone find answers.
God Bless you
Dismas72
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Congratualtions on getting to the other side. It sounds like you are doing well. Your recovery seems to have progressed and you seem to have a great attitude about the whole experience.
If it suits you, think about sticking around and lending your voice to the cause...
..take care... tim b
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WOW ..... what a story. This just goes to show that a patient is his/her own best advocate ..... and to keep pushing for answers when you know something is going on in your body. Too many doctors think 1 in 100,000 (or whatever the current stat is!) means they are unlikely to see very many ANs in the course of their practices!!
I agree with Tim, stick around and join in with the rest of us in reassuring others.
Clarice
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Wow! You sound great! It feels good to be on this side of it all, doesn't it? Congrats on a good outcome and a positive attitude. Welcome aboard!
Priscilla
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Hi Dismas,
I'm glad you found us helpful for basically the last year. You could have spoken up at any time, we hardly ever bite. I see your surgery was toward the end of last year, and it sounds like you are doing quite well now with some hearing saved and no major facial issues. That's awesome considering the size of your tumor!
Anyway, welcome to the group, and I agree with the others...pull up a chair and stay awhile :)
Ernie
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Dis -
incredible story. It's always interesting to read how many people are misdiagnosed when it comes to acoustic neuromas.
You are certainly lucky to have been referred to Drs. Link and Neff - even if it was in a round about way.
I'm so happy things ultimately worked out for you.
Thanks for sharing - and as the others said - please stick around :)
Jan
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Its always surprises me to hear stories like this but I have heard enough to know I was lucky that my ENT found my AN immediately. Glad to hear you found your way through it finally.
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Hi, Dismas:
Thanks for 'coming out' and sharing your AN story with us. I was pleased to learn that you found this website and the forums helpful as you dealt with your AN. I'm very glad that you were finally given a correct diagnosis and were able to have AN removal surgery. We always advocate being proactive, especially when you realize that 'something is wrong', as you did. Your experience is yet another validation of that philosophy. Congratulations on your successful surgery and thanks again for posting it here. Please don't let it be your last post.
Jim
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Thanks again for the kind words!! and I'll be around to pitch in when I can! It is amazing how things work out, and I have to credit the fine doctors who helped to put me in the postion to recover well. I'm still not out of the woods yet, but doing good.
Dismas72
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Welcome Dismas72,
Your story sounds oh too familiar, up to the surgery part. I sadly lost my hearing and experienced temporary facial paralysis ( which is getting better everyday).
I am so glad you decided to share your story, it is important for others going through the same thing. It is extremely frustrating when you know there is something wrong and it keeps being misdiagnosed. I went 10 years, then finally found out.
Life is good...celebrate.
Michelle ;D
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Yes thats for sure about listening to your body!! I really dose talk to you. I actually have about 20% or less hearing in the right ear. Funny how the buzzing and hissing is WAY louder than any usefull noise. The doc's did tell me I was going to not have any hearing at all. So I guess it's better than zero. I did struggle with the thought of paralysis though.. I really sympathize with those who live it. I think about how still parts of my scalp are NUMB and how that is how my face would feel? it's like it not even there. The fact that things are getting better is the motivation to keep going!!!!