ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Zeitgeist on July 01, 2010, 08:43:34 am
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Might as well start off a first message with a bang. I was diagnosed at the younger end of the spectrum--in fact shortly before my 30th birthday which caused many jokes amongst my friends that my "warranty" had expired. I had been in a car accident with a friend driving and shortly thereafter had trouble hearing out of one ear (I am sure this sequence of events is rather familiar to everyone here). At the time, I did not have health insurance, so this resulted in a lot of "Doc in Box" visits and the result of "Yes, you can't hear very well on one side, and no we don't know why, so you need to see a specialist." The long and the short of it (and I was lucky to be living in a large city--NYC--at the time) I was diagnosed with a large-ish right side acoustic neuroma of 2.2cm. A course of steroid returned my hearing to normal. Which was a relief.
This was in the fall of 1996, given the time period the person I fist saw didn't even offer any options beyond saying, "I will of course be doing the surgery..." (this was at NYU). In this pre-widespread Internet days there wasn't a great deal of information, but I did know enough that I wanted to hear from more than one doctor and ended up with a doctor who said surgery was an option, but given my age and relative lack of symptoms that I should just watch and wait. I have moved around a lot and actually been to several doctors since the last being at Johns Hopkins. There has been about 2mm of grown the entire time period since 1996 and only one other bout of hearing loss (and that was about 10 years ago, also alleviated by steroids). But to date I have been absolutely fine beyond some balance issues particularly in very dark situations and when I am tired. The upshot is that I am glad that I did not opt to immediately have surgery and apparently am something of a Methuselah of the watching and waiting crowd. I am about due for another MRI (it's been 3 years), but don't anticipate any changes.
I hope!
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Very interesting! Thats a pretty long wait for starting out with a AN of that size. No growth is No growth and your feeling good very inspirational staying the course. Being diagnosed 3+ years ago at 58 it actually makes me wonder how long I`ve actually had my AN. I`m staying the W+W course and keeping a healthy lifestyle with the hopes of not intervining. Keep up the good work! Mickey
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Very interesting! Thats a pretty long wait for starting out with a AN of that size. No growth is No growth and your feeling good very inspirational staying the course. Being diagnosed 3+ years ago at 58 it actually makes me wonder how long I`ve actually had my AN. I`m staying the W+W course and keeping a healthy lifestyle with the hopes of not intervining. Keep up the good work! Mickey
I hope your both able to keep up the healthy lifestyle and not need an intervention as well! I feel very fortunate and know that my experience, so far, isn't typical. Given the size of mine, I had always wondered how long I had it (especially in light of the subsequent relative lack of growth). It is amazing the range of different experiences you read on here with everyone beginning with the same ailment!
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Hi there 'Z'....
Congrats on being into your 14th year in W & W without any treatment intervention...that is some achievement and is a great incentive and inspiration to those who have been newly diagnosed and in a dilemma re the available treatment options.
Myself, Sheryl and Chris on this site are all into our 9th / 10th year in W & W since diagnosis and it would be most appreciated if you could add any helpful hints you may have in the 'Top Tips for the Watch & Wait Brigade' topic within this Watch & Wait sub forum.
Regards
Derek
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Hi,
Methuselah er, Zeitgeist ~
Thanks for joining and posting...and congratulations on your incredible 'Watch-and-Wait' record, which is the longest period of AN observation I've come across. I hope it continues for many more years and when and if the AN finally has to be addressed, it can be done fairly easily and without complications. In this instance, with the advance of technology, time has definitely been on your side. Best of luck on the upcoming MRI scan.
Jim
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Hi - I've written to you on another thread but wanted to add that my schwannoma was found in November, 2001 after a bad headache which turned out to be a blood pressure problem - but instead I got the news, "you've got a brain tumor". At that point it was measured at 9 mm (although on second consult with a neuroradiologist friend, he thought it was a tad larger). Last December, 2009, I had my first growth in four years which increased it by 1 mm to 14 mm. So, 5 mm in 8 years isn't too bad. At 2 mm, most professionals don't even count it as growth but more to technical differences - different technician, different machine, etc. I was once told that your head is never in the same place twice and even just being 1 mm off can change the final measurement.
Sheryl
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Hi Sheryl,
Very impressive. You never know, it may even stop growing altogether at some point! Whatever you are doing, don't stop.
Vivian
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14 years is unreal! Congratulations and hope you will never have to deal with the treatment of any kind. They are generally easier than in 90's but still not fun.
Eve
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Hi Z!
Congrats on 14 years and counting!
My sister and I both have ANs and are both currently W & W.
It takes patience, but it can be done.
Continued wellness to you and keep us updated as time goes on.
Sincerely,
Sue
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Hi,
No way and congrats on 14 plus years of W&W, I am 2.5 years now with my next MRI this Oct. I am also hoping for no growth, but I do have lot of symptoms. All I can say is "WOW".
Best wishes,
LisaP ;D
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Hi,
No way and congrats on 14 plus years of W&W, I am 2.5 years now with my next MRI this Oct. I am also hoping for no growth, but I do have lot of symptoms. All I can say is "WOW".
Best wishes,
LisaP ;D
I hope your MRI this October is a good one--I think the waiting to hear is the worst part of that entire process! I'm sorry to hear about the lots of symptoms :( It is amazing the range of experiences folks have--there really is a lot of variety when it comes to symptomology and not all of it related to tumor size it seems!
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I am at 6 years glad I have waited.
john
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To all in W&W for many years, hang in there. In my local support group there is a gentlemen that has been over 20 years! So it is possible.
TJ
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I just am passing my 4 year mark and symtoms have not changed! Hooray!!! May we all continue this viable treatment course.
Blessings to everyone on this Forum,
Jackie
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Hi,
I was dx March 2008, going on 3 years this March and I continue to W&W with no growth. Best wishes
LisaP ;D