ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Keeping Up on May 25, 2009, 06:53:23 pm
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I had my first follow-up MRI last Thursday morning - got the CD that day and decided there was no change (and yes, even the untrained can see my small AN without enhancement). I got an email from the ENT today giving the professional opinion - no growth on this second scan. After all the fretting these past six months, it does certainly feel like a complete waste of time.
I do have minor symptoms - the frequently plugged ear (airplane ear), the tinnitus and the hearing loss - but otherwise am symptom free. The dizziness/light-headedness from a few months ago has thankfully completely gone away.
My next appointment is with the neurosurgeon - just to get his perspective - waiting, surgery for hearing preservation and then as always, his view on GK. However, until someone suggests I choose a treatment, I am unlikely to change paths from simply watching and waiting. I petitioned for a 9 month follow-up MRI (normal course is 12 months) - for a truly silly reason. I want my next 12 month MRIs to always be in late January/early FEbruary - then, if treatment plan does change, I have 3 months to get a surgery date scheduled. I am a bit of an uber-organizer. If someone is going to crack open my head and I have to take time off work, it might as well be summer. So, a May surgery date - whether 2010 or 2015 or well beyond, sounds like a good time of year for me!
Otherwise, I have just been hanging out READING books. My eldest turn 7 on Friday (party with 11 girls - I was exhausted by the end of it) and so the intensity of parenting is decreasing bit by bit. I discovered the library and have been borrowing books at decent clip. Finished Pillars of the Earth yesterday and now on to my third Narnia tale (never read them as a kid). So, in general, instead of interneting and spending time here (or blogging), I am reading and I am in love with books again.
I do check in - and am most useful (not saying really useful) to the watching types so don't have a ton to say.
Cheers to Memorial Day and the Queen's birthday in the UK (Canada is all confused - we celebrated the b-day last week!)
Ann
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Congratulations on your no-growth MRI!!!
I totally get and agree with your choice for an MRI date, I too want a summer date for surgery/GK if need be. So know there is another someone with the same thought pattern.... 4 kids- summer just makes it easier. That is one of the most difficult things for me with watch and wait... if it suddenly decides to grow during the school year it will be very difficult for our family schedule, I know everyone else will be fine with the disruption but I want to be at all their games, events etc.
Well I am off for another opinion.... But just had to say Congratulation!!
Take care,
Darlene
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Hi Ann,
I am glad to hear of the good news that your AN hasn't grown. It is hard to watch and wait, but at least there are options. My next MRI is Sep 17/09 and I see the Neuro on May 29/09. I have symptoms such as yours, some days worse than others. The first MRI I had I went to Buffalo for it because they have the open machines. I am now being followed up at Sunnybrook by Dr. Schwartz and it's best that I do the MRI there but the machine is closed. I have to psych. myself up for it. The Neuro. told me to take a sedative one hour prior to the appt. Where are you being followed? Ann you mentioned something about hearing preservation with surgery. Just a thought, from what I have been reading I think hearing loss is most likely to occur with surgery as they can't avoid touching the auditory nerve. Anyway, I have been trying to keep busy and not think about it so much, but who am I kidding? The thought is always there but I guess in a different light now that I have had a chance to absorb what this condition really is.
Vivian
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Way to go Ann, no growth is excellent news. I wouldn't call the "fretting" waste of time though, since doing your research is absolutely necessary with this condition. So now you can feel content that you have completed your Ph.D. on acoustic neuromas and passed successfully the first test 8).
By the way, happy birthday to your daughter. And, how do you EVER get the time to read with four kids and a full time job! Good for you. I haven't found the time to read a book since my first one was born ::)
Marianna
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Ann ~
I know playing the 'Watch-And-Wait' game can be stressful so I'm pleased to learn that your MRI showed no growth. May that continue - indefinitely. :)
Jim
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Ann ~
I know playing the 'Watch-And-Wait' game can be stressful so I'm pleased to learn that your MRI showed no growth. May that continue - indefinitely. :)
Jim
Ditto what Jim said, Ann. Continued wellness wishes to you and let's hope it continues to do nothing! :)
Phyl
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Thanks everyone
typing is very difficult since my3 year old popped the space bar off the keyboard
Waiting isn't so hard after you get use to the idea (it took me many many months).
Vivian - the ENT isn't too optimistic on hearing preservation surgery, but it is an option. Just going over options at this point as we all have to live with the decisions we make. I am convinced, but willing to sway with the right evidence, that watching as long as no significant symptoms (balance/headaches/other nerve issues etc) but understanding that I may lose useful hearing during that time.
MK - the subway is my solution - free reading time. I even missed a stop a few weeks ago because I was deeply immersed in my book. (I can also sleep on the subway so the noise and commotion doesn't really affect me.)
Ann
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So now you can feel content that you have completed your Ph.D. on acoustic neuromas and passed successfully the first test 8). Marianna
[i love this line, Marianna!]
Hi Ann! Great news on the MRI, congrats! (I was SO nervous leading up to my first 6 moth MRI...)
Some days, i do W & W quite well - other days not so good, even though my symptoms are almost identical to yours.
So reading your good news and knowing i am not alone, this is added encouragement for me.
Vivian - i am so sorry your symptoms are more pronounced. I have had 2 MRIs in 2 different locations, but both closed.... I will continue at the 2nd location because at least at that major medical center they know what an AN is. :o - I had to psych myself too, but not bad. I say do what it takes to get the MRI pics - i don't like sedatives, but if you need them, do it, it's OK.
(Sorry for the hijack Ann!)
Take care.
Sue