Author Topic: MN AN newbie  (Read 7119 times)

Fuzzy

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MN AN newbie
« on: March 12, 2019, 06:57:10 pm »
Good evening all.  What a great web page.  So much information.

I was diagnosed with AN in September 2017 and in a W&W status since.  MRI's done in 2017, 2018 and 2019 at Mayo in Rochester MN.  Good news and bad news.  Good news is the AN is still small, 12 x 9 x 8 mm, with "no contact of the left middle
cerebellar peduncle, no extension to the left IAC fundus, no labyrinthine extension is identified, no evident extension along the facial nerve" As many have noted in the forum there is a lot to understand and a lot of confusing terms.  When I met with the DR they did a great job of explaining, but I think I did a poor job of listening.  They noted that since the AN does seem to be growing so I should consider treatment.  I am sending my scans to the House Clinic as well for their free consultation.

I have some hearing loss but still very good speech recognition. 

Mayo suggested Gamma Knife or surgery since it is growing.  But since it is slow growing I could W&W another year.  Tough decision.  W&W won't hurt since its small and slow growing.  GK has great results it sounds like a good chance of losing my hearing.  Surgery seems promising but who likes their head cut open?  I wish there was a decision tree or flowchart

The folks at Mayo seem very capable of doing either treatment if I go that way but they don't publish any stats.  I like everything I've read about the House Clinic and look forward to discussing with them.  I'm also going back to meet with Mayo in a month to discuss further.  Hopefully I listen better.  I think I was was a bit shell shocked when I heard the treatment recommendation, even though there was more to it.

Thanks all for listening/reading.  I really needed a place to vent a little as much as looking for answers.  But, if anyone has any thoughts or similarities, I'd love to hear them.

Again, thanks for hosting this site.

Fuzzy

ANSydney

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Re: MN AN newbie
« Reply #1 on: March 13, 2019, 09:27:10 pm »
If you have the time and inclination, take a look at the MRI images yourself and do some measurements. The CD contain easy to use measurement tools.

Not only is growth rate important, but also the progression in the rate with time ( https://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf )


MissMolly

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Re: MN AN newbie
« Reply #2 on: March 14, 2019, 09:28:23 am »
Welcome!
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

notaclone13

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Re: MN AN newbie
« Reply #3 on: March 14, 2019, 11:30:04 am »
Greetings Fuzzy,

Many of us on this website with relatively small ANs are in the exact same position as you.  I call it "AN limbo" and it is a frustrating place to be. One is constantly waiting for "the other shoe to drop", so to speak. After being on watch and wait for one year, my AN has grown about 1 mm. I was told I have the "garden variety" AN as opposed to as fast grower, which is good. But I have also learned from talking to the doctors and by reading posts on this forum, that slow growers can have sudden growth spurts, increasing by several mm in a short amount of time. When this occurs once certainly has to act.  You might find this article by Caroll Krucoff in the Washington Post interesting:

https://www.washingtonpost.com/national/health-science/why-i-let-a-brain-tumor-go-untouched-for-10-years/2016/02/01/28b02d48-a5b6-11e5-ad3f-991ce3374e23_story.html?utm_term=.97909088155b

I met with a very charismatic radio-oncologist last week who had me convinced that early radiation treatment for my 8.4 X 4 mm AN was the best way to go.  Even told me he may be able to save some of my hearing and that he did not think I would experience the tumor swelling that Gammaknife and Cyberknife recipients commonly experience. But in reading the posts on this forum, it is clear that most people lose their hearing rather quickly after radiation and that the tumor swelling can and usually does cause an increase in imbalance and dizziness that can last for up to 2 years.  Had I not read the forum posts, I might have signed on for radiation treatment last week. My husband, who has not read the forum posts, thinks I should get treatment immediately. I pointed out to him that it is easy for him to say because he has not seen the posts I have seen by people who have worse symptoms after radiation than they had before. I realize that my hearing is declining, and the tinnitus drives me crazy at times, but I am living with it. I much more frightened at the prospect of having worse balance and dizziness. Having suffered severe and prolonged vertigo attacks in the past, I absolutely don't want to risk getting more of those as some people do after radiation. Vertigo is frightening and incapacitating. One thing  I do know is that at age 65+ I do want to go the surgical route. I know from past experience that I am not one to heal quickly. So here I sit in AN limbo, stuck and obsessed with a benign 8 mm tumor which at this point is running my life and altering my life style. I am getting really tired of waiting, so much so that I may soon opt to get radiosurgery. Because doing nothing but waiting for things to get worse does not seem like a good way to live.




 





Fuzzy

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Re: MN AN newbie
« Reply #4 on: March 17, 2019, 07:41:09 pm »
Thanks all for the thoughts and ideas.  This is a great site to learn.

kip

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Re: MN AN newbie
« Reply #5 on: March 24, 2019, 05:49:08 pm »
Hello Fuzzy,
First I would like to say I am sorry you are going through this, but happy you have found this forum. This is such an empowering tool for all us AN folks! I have followed along myself since 2009, but have never posted until today.

My doctors are at Mayo Clinic in Rochester, MN and I have had both GK & surgery. I will tell you that my AN was apparently of the fast growing type & resistant to radiation. I have had the most wonderful care at Mayo Clinic with Dr's Link & Driscoll & I am glad you are going back for further discussion. There is so much to absorb & learn quickly!  I would suggest you bring a friend or family member with you to take notes & help you listen. I would also come to your next appointment with some questions written down. I am certain they will sit there & answer each of your questions, regardless of how long as it takes.

If your AN is small, then time really is on your side to W&W another year. If only we had a crystal ball to see how these tumors will respond to any treatment, but the fact is we don't. They are just as unique as we are! ;) So, we must make peace with our decision after doing all our homework & then (possibly) waiting.

If I had just one pearl of wisdom to share with you, it would be this: Ask your Dr's (at Mayo & House) what would be the best treatment for long term tumor control? And then take their advice...

If you would like to PM me I would be happy to visit with you. Blessings in (MN) from me to you!


Fuzzy

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Re: MN AN newbie
« Reply #6 on: May 18, 2019, 10:20:43 pm »
Hi all.

I'm checking back in to let you know I made a decision to go with the retrosigmoid surgery at Mayo at the end of May.  While I don't look forward to the surgery, I do look forward to moving on from the "limbo" as referenced in a few posts on this site.  As also mentioned often on this site I am comfortable working toward my "new normal" and  have faith that the surgeons will do a great job.

I will try to post after my surgery and I know how things worked out and how I am progressing.

Thanks again to all for the thoughts, advice and well wishes.

Fuzzy

chrisabbott

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Re: MN AN newbie
« Reply #7 on: May 19, 2019, 10:07:33 am »
Sending medical mojo your way - I'm slightly envious that you could get your surgery scheduled so quickly.  I have surgery scheduled for June 13th and I think it's almost easier for me because my AN was already too big for radiation types of treatments by the time I was diagnosed. 

I suspect we'll both continue to use this website as a resource once we learn what, if any, lingering effects we have and how to address them.  I hope your new normal will be close to your current idea of what normal ought to be.
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Translab June 13th Dr Bien & Dr Dunn in OKC
No change in facial numbness, dry eye (not worse!)

 


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