ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Raven on November 14, 2009, 09:18:41 am
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Hi everyone,
The reason I'm asking this is I got an MRI last week and saw my Dr. yesterday. Very good report as there was no new growth and still have 90% word recognition, in his words, everything is stable. Next MRI is in one year rather then the usual six months. If I didn't loose my hearing on the left side I may not have ever known I had a AN on the right side. I guess you could go a long time not knowing you have a AN, but in our cases we know we have one. So, my question is......how long have you been waiting and watching?
For me it has been since July '07..........Hopfully I can wait & watch forever
John
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Hi John! Ive officially be W+W going into my third year, Yearly MRIs now the last one "stable" as the first one with diognosis. I really couldn`t estimate how long I may have had this but my symptoms started with tinnitus 30 years ago. My symptoms are relitively minor till today (.12x.06). I intend to stay as healthy as possible with no intervention unless necessary. Keeping the faith, Mickey
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Hi John,
I have been in the Watch and Wait mode since Feb. 2007. Had MRI's every six months (unfortunately finding other intruders) until last July, all three are stable so, will wait this time a full year for the next MRI/MRA. Still continue to research but the Anuerysm is the priority for now. My symptoms remain the same from the beginning, hearing loss, Tinnitis and fullness. Life is good and am praying it remains this way!
Jackie
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Hello there John...
I am now approaching my 8th year in the 'watch and wait' mode and I believe that I am one of the 'longest serving' W & W on this Forum. If you have not already done so, can I refer you to the thread 'Top Tips For The Watch & Wait Brigade' which I initiated and which is currently languishing towards the bottom of page 2 of this sub forum with amost 10,000 views to date You will find lots of interesting tips and info there which hopefuly you will find of interest and use to you. I did ask moderator Phyl many months ago if she could possibly make that thread a 'sticky' for ease of reference but nothing has transpired.
Regards
Derek
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Hi Derek! If I remember correctly your AN has reduced in size over the past 8 W+W years? Thanks, Mickey
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Hi Mickey...
Yes, you are correct...started off upon diagnosis in 2002 at 2.5cm and my last MRI scan in May of this year indicted a dimension of 1.5cm. Even allowing for differentials in MRI equipment and neuroradiology interpretations etc over the intervening years, any reduction rather than an increase is good news and I remain of positive mindset that 'IT' has indeed reduced by 1cm and will continue to do so without the need for treatment intervention.
My daily lifestyle, diet and exercise regime as chronicled in the thread 'Top Tips For The Watch and Wait Brigade' remain constant and thankfully, there has been no change in my symptoms. I am now at the stage where many days can pass without my even thinking about 'IT' and long may that situaton continue!
Regards
Derek
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Just wanted to make sure. Very inspirational. You know my story + following your footsteps. Best Wishes, Mickey
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Consciously since September. I was booked for surgery twice, and canceled twice for various reasons.
The only worsening of symptoms I've had is with my whooshing/pounding/twinkling head. I am working very hard at making a few lifestyle changes to see if that helps.
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Hey Derek and others - I'm still here too waiting and watching since November of 2001 so just hit my 8th year!! I have graduated to MRI's every two years and have one coming up in a few weeks. Don't feel any symptoms so am hoping for stability or maybe even decrease. I think there is someone doing W&W even longer than myself. Although mine's not on the 8th cranial nerve, it is on the 9th so I feel "related" to you all - benign, same type of tumor, etc.
I'll make a note to update after MRI,
Sheryl
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Hi there Sheryl...
Good to know that you are still going strong in the W & W league!...As a matter of interest, does anyone know who in this 'familly' has been diagnosed for the longest period and is still in W & W without having had any treatment intervention?
Regards
Derek
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Hi Raven,
I have been on W & W since March 2009, longest 8 months of my life. I continue until next May 09 on W & W, but after that I think I will get this thing fried.
Vivian
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Hi,
My name is Paulette , I have been diagonosed in 2008 , I go to Mass Ete and Ear , just had my second 6 month MRI yesterday and it showed no growth , sono I go once a year
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Hi John! Congratulations on the MRI results, sounds great!
I have been here 'officially' for just over one year.
But i can tell you that i have had hearing loss and fullness feeling in my ear since mid-1990s.
Since my local ENTs were clueless, i was crazy enough to believe this was a sign of 'getting older' - at 40?!!!!!
Anyway - i am grateful for my sister, who had a very rapid diagnosis last year and prompted me to seek evaluation by an expert.
Even then, my audiogram was rather inconclusive, so i had to ASK for the MRI. [be careful what you ask for.]
I believe knowledge is power, so am grateful for my sister, the original MRI, and the ability to hopefully make my own treatment decisions, if necessary.
Nothing is perfect in this human world - just trying to be informed.
Best wishes on your continued W & W status!
For now, i am there with you.
Sincerely,
Sue
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Hi Derek,
I have been W&W since March 31, 2008. My last MRI was on October 21, 2009 which showed no growth. Hope get through another year!!
Best wishes,
LisaP ;D
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Hi there Lisa...
Congrats on your recent MRI scan results...great news and keep up your positive outlook!
Regards
Derek
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Hi all you W&W's - today I had my two-year MRI for 9th cranial nerve schwannoma being followed since 11/01. Had VIP treatment as the neuroradiologist that I know and who has helped me and hubby with all our brain films was assigned to the office that I was scheduled (they rotate around). So I got an instant read and called into the reading room for more detail.
Basically he felt that over the two years, I have had growth of 1 mm - that would be since 2007. Actually when he went back to 2004 when I had my last growth, it measured 13 mm and now it is 14 mm. The good news is that there is no swelling around it and it is not pressing into the brainstem but is touching it. Even better news is since I have had breast cancer in 2004, the rest of the brain is clear. This 1 mm is also within the margin of technical error and he did tell me that they have upgraded their MRI's (thought I heard a different clip clop/jackhammer noise)!! Worst part of the whole experience was getting the I.V. in for the contrast dye - took two technicians (one supposed to be "the one") and three tries. I hydrated myself with so much water before the procedure (as I heard it helps plump up veins) that luckily the restrooms were nearby!!
Go to see the neurologist for yearly visit next week and will find out her take on this and when she feels another MRI is a good idea. Since there has been minor growth, I may convince her that I'd like to go a year rather than two this time.
Sheryl
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I wish all of you watch 'n' waiters the very best. I can't help but notice that W & W is the quiet section around here. ;)
Steve
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Hi Sheryl...
I share your optimism that the apparent tiny 1mm increase in 2 years will be down to nothing more than the differing tolerences applicable to the upgraded MRI equipment etc.. Great to see your positive outlook prevailing and I am certain that I will continue to remain 'in your shadow'!
I have insisted on annual MRI scans since diagnosis and I think you are wise to go along that route.
Best wishes for Christmas and hope that all goes well for you in 2010.
Derek
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Hi Sheryl! I`m in your corner too. As long as your symptoms are favorable why not hold out with the hope your AN has reached its maximum size. As far as the MRI it looks good 1mm is really of no significance. Stay the course with a healthy lifestyle! Best Wishes, Mickey
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I wish all of you watch 'n' waiters the very best. I can't help but notice that W & W is the quiet section around here. ;)
Steve
Hi there Steve..
We tend to be on the 'quiet' side here because we are 'watching and waiting' (lol)
Best wishes to you and your moderator colleagues...Have a great Christmas and best of everything in 2010
Regards
Derek
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Four and a half years and counting. I had an 18 month MRI and hearing test today and as Dr. Backous put it "I am boring!" No changes so I get to go 2 more years unless of course I get symptoms.
Caroline
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Caroline,
Congrats to you and all the others who continue in W & W!
After an uneventful MRI on Dec. 4th, i hope to add another year to my status.
Take care, everyone, and enjoy the holiday season!
Sue
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I have been watching and waiting with annual MRIs since 1993. Had this year's MRI yesterday at about 5:30 pm. Don't have the results, yet. Will post with those when I hear. Thankfully, there is no horror story to report . I told them they were not to even look at the back of my hands for the contrast injection.
Marie
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Hi Marie!
I received the e-mail notice that you had responded to this thread. Then i went back and read your story - WOW!
Sounds like you are doing well, despite having been at this AN stuff for a long time! CONGRATULATIONS!
Many best wishes that you receive yet ANOTHER great MRI report and continue W & W.
You give us fellow W & Waiters hope and inspiration!
Sincerely,
Sue
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Hi,
Have been W&W since March of 08!!
Best wishes
LisaP ;D
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Hi Lisa! Keep the faith! My AN aprox. the same deminsions as yours awaiting yearly MRI in Aug. 2010, 3yrs. So far stable and keeping up the "tips" with the W+W brigade for a healthy lifestyle. You never know there have been cases of reduction in size. Best wishes, Mickey
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I have been on watch and wait since the summer of 2005. I just had an 18 mo MRI in November and now get to wait 2 years for the next one. Sibce I have other medical problems to contend with I am glad this one is not causing more concerns.
Caroline
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I have been W and W since March of 2006. My right side AN started as 3mm x3mm x4mm and now is 6mm x 4mm x 3mm. It hasn't grown for the last 2 years. My only symptoms are loss of hearing in the right ear and sometimes a little unsteadiness. I have some hearing in the right ear, but poor speech discrimination. Every year when I have the MRI I consider treating it, but then when it hasn't grown, I change my mind. I am 64 years old.