Author Topic: W&W Newbie  (Read 4125 times)

Lesley BC

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W&W Newbie
« on: October 15, 2010, 11:07:16 pm »

Hi Everyone! 
I am a Newbie!  I have been reading info on this site for some time, very interesting to see that I am experiencing many of the same symptoms regarding balance and concentration issues.  I'm not alone!

I was diagnosed with an AN on the right side in June of 2007.   I was referred to an ENT specialist because I felt I was gradually losing my hearing on the rt. side.  I was sent for an MRI and was shocked to discover that I was diagnosed with a 2.3 cm AN.  I've been on W&W for the past 3 yrs. having an MRI every six months.  My hearing is gone in my right ear completely. I am presently waiting to hear the results of my latest MRI 10 days ago.   Last Feb. the report was that it may have grown or perhaps had been viewed from a little different angle.  I also have tinnitis in my rt. ear and once in a while in both.  Weird!  So far I have retained the feeling in my face right side.

Three years ago I felt that I wouldn't have the surgery and if it grew I would go in for the Stereo-tactic radiation therapy after seeing two specialists at the Cancer Centre in Vancouver.  But after living with the knowledge of this neuroma for 3 years I feel my life is going forward in 6 month segments.  I don't know what the future will hold.  If I can see the "right" neurosurgeon, I believe I will go for the surgery if the doctor feels it is the best solution for me.      L.
 

Sheryl

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W&W Newbie
« Reply #1 on: October 16, 2010, 10:22:08 am »
Hi Lesley - Sorry you had to join our group but there are wonderful people here who care.

I am a wait and watcher for 9 years and I take turns thinking I may want conventional surgery versus radiosurgery, if and when the time comes.  Part of the reason is probably because I consulted in Boston this past summer with a neurosurgeon who specializes in brain stem and was very confident and knowledgeable.   Just remember a neurosurgeon is a "surgeon" and will more than likely tell you that you should have surgery.  If possible, I was told the best M.D. option would be a neurosurgeon who does radiosurgery and conventional surgery - he/she wouldn't be as biased towards one procedure.

Good luck and keep us posted.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Jim Scott

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Re: W&W Newbie
« Reply #2 on: October 16, 2010, 01:55:41 pm »
Hi - and welcome! 

I'm sorry you have an acoustic neuroma to deal with but thanks for joining our discussion group.  I hope your MRI doesn't indicate new growth.

I moved your post to it's own thread for better responses. 

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.

opp2

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Re: W&W Newbie
« Reply #3 on: October 18, 2010, 06:55:27 am »
Welcome Lesley. I'm sorry you have an AN. It stinks and we all know it. You have been waiting a long time. My AN was a little larger than yours when I was diagnosed, but I did take a long time (I think it was) to find a surgeon and then have surgery (diagnosed Apr 09, surgery July 10). I had my surgery in your town, though I live in Ontario. There are many great neurosurgeons out there but you have one of the finest right there in Vancouver.

When you are researching surgeons (if you finally decide to do it) I would recommend you consult with Dr Akagami.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Lizard

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Re: W&W Newbie
« Reply #4 on: October 18, 2010, 11:28:46 am »
Lesley,
Wanted to also welcome you to the forum and sorry we had to meet here, but you are now part of the biggest and most caring AN community.  I understand the feeling of just wanting the bugger out, I don't think I could have had GK/CK/FSR, just because I would always want to know what was going on in there.
This is a very personal decision and one of the toughest ones you will have to make.
Hang in there,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt