Author Topic: Add me to your roll call  (Read 10061 times)

Barb909

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Re: Add me to your roll call
« Reply #15 on: May 01, 2011, 09:36:37 pm »
Hi Brandon,

Any chance you could make it to Cincinnati for the AN symposium? Since yours is small, like mine, you have the time to wait and get all the information you can. That seems to be the perfect place and time to do that. The hosting docs are the ones I am choosing to take care of mine when the time comes, but I am "all ears"   ;D for any information that might change my mind.

Whatever you decide, best wishes to you. All of this thinking and learning and worrying is not easy.

Barb
Feb. 2010    4 x 8 x 5mm
June 2011   4.7 x 8.9 x 4.0mm
May 2012    4.5 x 9.1 x 3.9mm
Sept. 2013   5 x 10.1 x 5mm
Feb. 2015     6 x 13 x 5 mm
In IAC near cochlea
Mild hearing loss, tinnitus
W & W, thinking about treatment

BRS89

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Re: Add me to your roll call
« Reply #16 on: May 03, 2011, 08:00:24 pm »
Thanks all.

I am on work travel and doubt I could make the symposium, but I met with Dr. Tom Ellis here this morning in Fort Worth. I was really impressed. He spent an unusually long time talking to me and I felt from a fundamental level how professional he was and I was relieved at the real data he had to questions I posed.

The moment he said that "if it were me, I would wait and watch to see what it is doing" impressed me. He gets paid to do surgeries and taking money out of his pocket to give me true, professional medical advice was a breath of fresh air.

So, we have a baseline MRI from April. We are going to take another one in late July. This, at least, will tell us if it is growing fast or not. This is a good thing. I can enjoy my son's 5th birthday party and my 10th wedding anniversary without being on my back recovering.

If it wasn't for my high pitched tinnitus, I would be ok day to day. I am having difficulty with it, and wonder if it is a lifetime sentence.

So, I went from - Surgery NOW - to watch and wait. But, if that little bugger has grown a mm in 3 months, sharpen the knife doc, cause your going in!

Barb909

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Re: Add me to your roll call
« Reply #17 on: May 03, 2011, 09:23:02 pm »
Hi Brandon,

Those were the words that changed my direction also. Like you I was a get it outta here type, but then I saw 2 teams of docs; 1 wanted to get it out NOW, (wanted the surgery for his stats?) the other 3 said, "If in my head....I'd wait and see what it does..." Yes, a breath of fresh air for sure! I gave it 6 months, had zero growth, and the next one will be 9 months after that, on June 1.

The tinnitus is the hard part for me also. Mine is not high pitched, but a constant roar, motor like, and I believe it to be for the duration. But, do you notice it all the time, really? When you read or are really into thinking about something, do you fight it? 100% of the time? I finally have realized that I don't. I love quiet. I love to read and garden in my quiet times and wondered if I would ever hear "quiet" again, and I do! I get so involved that I do not hear the noise. Maybe it has happened over time, but there is hope, I think, for you also. Not that it will go away, but that you will not hear it all the time. I am not a doctor...just my thoughts!

Good luck to you! Put it out of your thoughts until July, enjoy life, then in July, think positive things. I read once "Worry is the mind's misuse of creativity." Good thought, eh?

Barb

Feb. 2010    4 x 8 x 5mm
June 2011   4.7 x 8.9 x 4.0mm
May 2012    4.5 x 9.1 x 3.9mm
Sept. 2013   5 x 10.1 x 5mm
Feb. 2015     6 x 13 x 5 mm
In IAC near cochlea
Mild hearing loss, tinnitus
W & W, thinking about treatment

Jim Scott

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Re: Add me to your roll call
« Reply #18 on: May 04, 2011, 02:39:29 pm »
Brandon ~

Observation ('watch-and-wait') appears to be a reasonable course to take at this juncture.  Of course, I hope the tumor remains 'stable' and your tinnitus subsides.  Please keeps us updated.  Thanks.

Here's my contribution to thoughts about worrying, from William Ralph Inge (1860-1954).  Inge was British.  An interesting fellow.  A divinity professor at Cambridge and Dean of St. Paul's Cathedral in London, among other accomplishments.     

"Worry is interest paid on trouble before it comes due".    I like it.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

luvzmutt

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Re: Add me to your roll call
« Reply #19 on: May 04, 2011, 06:55:51 pm »
I agree with Barb. I was diagnosed in July of last year, had ZERO symptoms.  The AN (nicknamed Justin Bieber, because we just want it to go away) was discovered in an routine MRI for the optic glioma on my left side (see signature below)

I started with really mild, occasional tinnitus in November, but it has become almost constant since then.  It is a buzzing. sometimes low pitched, sometimes a higher pitch.  I have found that sometimes it is "tuned out" if I am super busy, so I'd agree that, though it may be there 100% of the time, I am not aware of it 100% of the time.  I also find that if I eat or drink something with lots of sugar or caffeine, the noise is louder.

I have been told by two doctors that listening to music or white noise for 1/2 hour a day can help.  My surgeon suggested buying noise canceling headphones and listening to classical music, and my doctor at the NF clinic prefers listening to white noise in the AN ear only.  I've tried the classical music route, though I admit I have not been consistent every day.  I'm going to give the white noise method a try now.

~Leslie
Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

Funnydream

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Re: Add me to your roll call
« Reply #20 on: May 05, 2011, 05:49:07 am »
Tinnitus is a life sentence. But you get used to it. Caffeine and stress upset mine really bad.

I'm a whole year of having tinnitus and six months out of surgery.

It did make me want to cry at first. But there is NO pain involved. Its just annoying is all. When I had partial hearing. I found using ear buds mp3 player would help. The background noise would get my mind off the ringing. I'm hearing the ringing right now as I type. Its all in the mind. Just focus on something else and you won't notice it.

Here is some nice information about tinnitus.
http://discovermagazine.com/2010/oct/26-ringing-in-the-ears-goes-much-deeper

Captian Kirk has it too.
http://www.youtube.com/watch?v=E7bL9BhESYA
« Last Edit: May 05, 2011, 05:55:05 am by Funnydream »
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

jaylogs

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Re: Add me to your roll call
« Reply #21 on: May 06, 2011, 04:56:22 pm »
Hello Brandon!! Sorry I haven't welcomed you earlier but I am just finally getting to all the posts from this last month.  It looks like you've been giving a lot of good advice so I'll just simply welcome you and wish you good luck!!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

kimbo

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Re: Add me to your roll call
« Reply #22 on: May 09, 2011, 03:25:56 pm »
Hi Brandon

I have replied to your thread because I wanted to share that when I was diagnosed in 2008 I thought I wanted it out but the doctors did encourage me to W&W and now I am glad i did.  It took me awhile to get used to it but now nearly 3 years later I am scheduled for surgery next week because I have developed major balance issues.  What I really wanted to say is that until now after developing the balance issues I didn't really appreciate just how well I was.  I have enjoyed life since diagnosis eventhough I have hearing loss and tinnitus.  I have had no recorded growth since diagnosis and if I had not developed the balance issues I would be quite happy to go for the next few years W&W.  I visited my surgeon the other day and he shared some statistics about his AN patients.  He mentioned to me that it is now uncommon for him to operate on patients with small AN's, he has 400 patients in W&W and of those 35 were operated on for tumour growth and 3 because they had developed balance issues; I thought that was pretty amazing with surgery accounting for only 10%.  The decision is a personal one and what you decide will be right for you.  Good luck in your journey.

Kimbo
Diagn 8/8/08 AN right 13mm x 9mm
mod/severe hearing loss & tinnitus
Translab surgery 05/17/2011
SSD & CSF leak x 4
Aussie

msmaggie

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Re: Add me to your roll call
« Reply #23 on: May 10, 2011, 07:01:57 pm »
I am in Houston and Vrabec works with Trask. Great team!

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

 


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