ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: bjkivel on December 18, 2014, 09:47:14 am
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Good morning all!
New to this site and my reason for joining was to educate myself and to read the issues and success stories from others with AN’s. The ANA site has done wonders for my recovery and it is great to see all the support that is provided. I’m not alone………
I’m 41 years old, married, father of two wonderful daughters and one son, if you count my big goofy yellow lab Tanner. Living in the wonderful state on Minnesota where there has been snow on the ground since pre-Thanksgiving.
I started getting headaches a couple of years ago but didn’t think too much about them – stood up to fast, one too many beers on the golf course, I’m 40 years old..Etc. I had an excuse for just about everything until, my headaches got much worse and I was losing my vision at times. To the Dr. I went where I had a CT scan. About an hour after my CT scan my Dr. was calling me back. I knew that this wasn’t good, who gets CT results in hour? Long story short, I was sent to the hospital for a brief stay and a MRI where it was confirmed that I had a large AN on my right side (4.3cm). It was suggested that I get a second opinion. I’m fortunate that I only live two hours from the Mayo clinic as that is where I went for my second opinion. I met with Dr. Link and the rest of his surgical team, they confirmed the AN. Dr. Link spoke with such conviction and confidence. I still hear the three things he told me:
1) This is not cancer
2) I can’t save your hearing on the right side
3) If this doesn’t come out it will evidentially end your life
Thing moved pretty fast from my visit at the Mayo. Two weeks from my CT scan I was at the Mayo having my first of three surgeries;
1) Oct. 14 – Right Frontal External Ventricular Drain – to relieve the pressure
2) Oct. 15 – Suboccipital Craniotomy - removal of tumor
3) Oct. 19 – Mastoidectomy – stop the CSF leak I had – fat taken from stomach to clog my ear.
I, like many on this site, was extremely scared of the unknown. I scrambled around the house for two weeks making sure things were in order. Even went as far as dropping of my life insurance policies to a close friend just in case… I’m here to tell you on December 18 that things are going great. My headaches are dissipating and I haven’t taken any pain meds for a few days now. I still get light headed / dizzy from time to time and I do struggle at night with lights. I’m adapting to the total loss of hearing on my right side. Really struggle in large settings where there is a lot of ambient (back round) noise. These struggle and adjustments are just part of the “new normal” One can’t expect to have major brain surgery and think things will be the same.
I’m thankful for my surgical team and all the support that my friends and family have given me. There is no way I could have done it by myself. I’m extremely positive about my recovery and make no doubt about it. I WILL be on the golf course mid-May – if the snow has melted.
One last thing – to my fellow ANers – We control our future, put the AN and the surgeries behind you and grab life by the horns. Merry Christmas!!!!
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Wow! Great news all around and you do a great job of articulating your experience. I have NEVER been able to understand conversation in crowded environments, even as a kid and my hearing back then was "perfect".
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Congratulations!!!!!
I go to the Minneapolis, MN support group meetings. They are awesome and very well attended.
They always have a guest speaker. I can let you know when the meetings are.
Otherwise, they are also posted on this web site.
The next one should be in April or May of 2015.
Sandy
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Thanks for sharing your story. It makes me put my tumor in perspective. Mine was a lot smaller at 1.5 cm and I had the tumor removed through retrosigmoid approach on 12/8. Its good to hear you are feeling much better having had your surgeries 2 months ago - this gives me hope. I'm struggling with having no hearing on my right side - how have you coped with it? I don't think I'm in the "acceptance" stage yet and keep thinking it will come back. They didn't severe the nerve but b/c of the apparent lack of blood flow to the inner ear, I may not get it back. I had 100% hearing going into the surgery.
Thanks for your positive post - I hope I will feel the same way in a couple of months.
Merry Christmas from Arizona where it's a high of 63 today.
Julietta
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I have a lot of similarities to you. I was 42 when I was diagnosed with a 5+ cm tumor. Ended up having the final procedure at Mayo with Dr. Link.
The follow through in your swing is what you have to watch. My body tends to follow it but I haven't fallen yet. Also, it is great to have a second set of eyes to watch your ball.
As Sandy said we have a great support group in MN. We typically meet twice per year, spring and fall.
Great attitude.
Tim
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jdamiano - we just started making sure that I was positioned with my left side out when ever possible. I did purchase a set of noise blocking headphones. This really helps me in large settings such as restuarants ect.... I have noticed that my my body is adapting naturally as well.
Tim - Sandy - I'm intersted in attending the MN meetings and will watch for the dates. Can you drop me a note when you learn of them as well....
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I'll keep you posted : )
Sandy
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Sandy I too am in Wisconsin. Wondering where you had your treatments? What type of radiation did you have? Brrr it sure is cold for us isn't it!?
Trish
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Hi Trish,
I sent you a personal message.
Sandy