ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Janey on May 04, 2015, 07:01:28 pm
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I had my six month MRI today with physician follow-up immediately after. My AN has grown
about 3mm. My doctor suggests a four month follow-up MRI. He advises that if any growth occurs
by that time, I should consider treatment. I was hoping to remain watch and wait indefinitely!
Although I really like my doctor, I'm having questions about treatment in WV due to low volume
of AN's. Last October my AN was 4mm x 7mm. Now it is about 10 or 11 mm. Also, hearing went from 100% voice recognition to 20%, which I pretty well already knew. Feeling sort of down about it, and wanted to post, as I'm always encouraged by the support of our group. Any personal experience
advice welcome!
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I can't give much in terms of advice since I'm a novice at all of this too. I had my 6m MRI and it showed no growth and my Dr told me to get one in a year. Then I went back for some other tests like an ABR and he had me move my 1 year MRI to 6m. I got that same feeling you have, but not as serious. It was disappointing that he decided 1 year was too long to wait, but not as disappointed as I will be when I get the same news as you. At some point, I figure I will get advised to get treatment, and when I do, all of this will become more real to me.
I will say that your decision to seek more experienced Drs for treatment is a good one. I would start shopping around. Pittsburgh is pretty close to you and has some experienced providers there. Even NYC is only about 6 hours away by car if my memory serves me well.
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Janey, I had a similar experience. In December 2011 I had a sudden 90% loss of hearing. By the time of my first MRI in April 2012 I was deaf on that side. The tumor was 3mm x 4mm x 9mm. I agreed to watch and wait. My next MRI was October 2012 and the tumor had grown 20%. I decided it was time to kill it and I opted for Gamma Knife which I had in January 2013.
You have to make your own decisions, of course, but your tumor has already exhibited rapid growth and these thing don't get better.
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Hi Janey .....
Because of the relatively rare nature of acoustic neuromas, we recommend treatment by a highly experienced physician, who has treated many, many acoustic neuromas. This is one time where a high volume of cases in the physician's practice is to your advantage for a successful outcome.
I live in WV and drove to Duke for my first removal and flew to California for the second removal ..... both times with excellent results.
UPMC in Pittsburgh has a highly experienced radiation doctor, if you choose that route for treatment.
Clarice
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ANGuy,arizonajack and Clarice, Thank you all for your comments. It is just so comforting to share one's thoughts and concerns with others that truly understand the situation. My tumor has shown significant growth, and I realize I'll have to make some decisions within the next few months. I am leaning towards gamma knife, not sure where. This forum keeps us with "rare" medical conditions from feeling so alone! Thank you, everyone.
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Janey,
Your recent MRI may or may not show "rapid growth." These are inexact measurements. Just my 2 cents, but you probably have some W&W time yet before you'd have to take action. MY AN was 1.4 CM when diagnosed (late-40's) and I waited another 3 years until my 4th MRI showed a 1.8 CM before deciding on GK in 2013. Everyone's different, and we all must decide what's best for us, factoring in our age, health, family, career, insurance, life-expectancy, etc. But don't be swayed by doctors, or by others on this board, to take action before you believe it's what's best for you. Choose your own course.
By the way, GK is no picnic, but after a rough first year post-GK, I've felt great the 2nd year post-GK. I'm having my next annual MRI on Friday and I'm hoping to go to MRIs every other year going forward. Time to get on with life!!
Best wishes,
Petrone