Just was diagnosed with Acoustic Neuroma yesterday...need friends!

[cherrypiper]

well Mary , i was diagnosed in June last year with a small , nickel sized, AN on the rt side. I had completely lost my hearing on the rt side because of tinnitis. so they did the MRI and found the tumor. My surgery was on Dec. 3rd 07.

heres the way it worked for me. im in Houston Tx so we have great Dr.s available here.

The surgery took 5 hours or so. ICU for 2 days, in hospital for only 2 more. The tumors of this type are usually benign and "fibrous" . Kinda like a wart on the inside.

B4 surgery they warned me that there was a 60 to 80% chance of some face "sagging" or "drooping" . and it did. this is because the 8th and 7th nerves sit on each other. One is the acoustic nerve the other is to your face nerve. they had to really scrape  my tumor off the nerves. They didn't sever or cut either but they got roughed up so to speak.

i am coming up on 4 months April 3rd and my rt side still droops about 1/2 inch or so. my rt eyelid cant shut. which is really no big deal as i can put a patch over it to sleep. and i use eye drops too.

i have no muscle tone in rt side of face. we have proven nerves and muscles still work with electro therapy. so its just a matter of time, 4 to 6 more months, so my face nerve can reestablish itself and i can get some facial tone back.

but for all purposes i look like a stroke victim with the right side of my face. cant speak or eat much on the rt side either.

dont mean to scare you Mary, but these are MINOR inconveniences compared to the tumor in the head and having it removed, confirmed benign.

hang in there

Steve W Houston Tx

[Kaybo]

Steve~
Hi!  I am also from Texas and am in the Houston area a LOT as my husband's family lives there.  I actually had my surgery there too.  I would LOVE to talk to you...I'm a bit out of wack right now as I am in Baltimore.  I just had the T3 surgery to try to get my smile back -- I've been paralyzed for 12 years.  Anyway, contact me if you would like...
K

[LarryS]

Hey Mary -
Another Texan here in Taylor, close to Round Rock. My husband, Larry, has a 4.5-cm x 3-cm. He had Gamma Knife therapy and they could only treat half the tumor as it was so large. He then had surgery by Dr. Chang and Dr. Alp at Hermann Memorial in Houston (Two really great doctors.) Dr. Alp is now at John Hopkins in Baltimore. My best advice, too, is to ask questions. No such thing as a dumb question. Get plenty of opinions. I probably asked more questions than my husband did. We found this site as a great way to find out some of our answers. First thing you learn, treatment depends on the size and location of the tumor. We check in here ever so often. Will be happy to help answer questions. My husband was up and walking the hallways with the physical therapists the day after surgery. I was just so amazed. He had surgery on Monday and was home on Saturday. Once his hair grew out, you can't even see the scar. We are blessed and now only have to have open MRI scan once a year with trips back to Houston.  Let us know how you are doing. LindaS

[MaryBKAriz]

Hi Linda,

Howdy there in Taylor, go Ducks!!!! I have 2 kids that graduated from Round Rock High School...one in 90, one in 95. My son is divorced but his ex and his 2 kids live in Granger.

I hope your husband is doing well. I see Dr. Changs name a lot on this site...or are there 2? Seems like he was in great hands.

I am still in digesting-this-all state. I am thankful I have 4 options but right now it can be overwhelming so I take breaks from it. I had my first appointment with Dr. Daspit at Barrows Neurological Institute in Phoenix on March 26 next one I have is with Dr. Fucci in Mesa....does anyone know about him??? I don't think he is affiliated with BNI. That is a downside for him because BNI is a huge draw, plus I liked Dr. Daspit. He has tons of esperience with ANs. I get a balance test next week and I am now researching and reading a lot of things on the site as well as reading all the material I sent for from ANA.

Thank you so much for sending me the sweet message, it does my heart good. How that helps. Your husband is an inspiration! What an ordeal for your folks! Keep in touch when you can and let me know how you are doing.

Take care,

Mary

[cheza]

Hi Mary,

My name is Cheryl saying hi from England, Your in good hands on this site, i felt so lost and confussed when I was diagnosed with my 3cm tumor, it scared the hell out of me, but this site was my saviour, so many friends all lending a listening ear or is that, a reading eye???  tones of advise and moral support, as long as you have this site you will never be alone at this difficult time.

you will go through so many emotions its like a huge roller coaster, but the downs, dips and turns do get smoother.

Everyone is right when they say keep a sense of humor, that may seem hard right now but it helps and after all, laughter is the best medicine.

don't forget, everyone on here is going through or has been through the same thing, and its good to share your experinace's and anxsity's.

Keep us informed of your progress and if you ever feel the need to let it all out this is the place to do it.

Take care and best wishes, Cheryl XxX 


 

[MaryBKAriz]

Hello Cheryl in England!!!!!!!!

May I come and visit over tea??? In an hour? 

I was in England for 2 weeks in 1996 and fell in LOVE with your country....wow. One of the main reasons were the superb people. You just verbalized all my emotiions!!! What a ride. We are blessed, and this sounds weird, with having numerous difficult times in our lives. By blessed, we have learned that we not only survived, but learned and grew. We learned to find humor (sometimes pretty sick) in the strangest places and one of my favorite things is I learned, really learned, to appreciate little things. First on the list, don't laugh, is to really appreciate the times that no significant problems are happening. WE can also gauge problems because problems aren't what happened to the lid of the toothpaste, or there is dust on the dining room table. Then when good things happen it is terrific and when great things happen it is off the chart good. Too many people don't get that gift in life. I am sad about this, of course, but this is survivable so I will learn and grow and appreciate humor and the small things even more.

Thank you for being there. I feel like I received a big hug from England!

Mary

[MaryBKAriz]

Hi Robyn!

I just have to laugh about the comment you made about my typo....hilarious!!!! I hope NO one gets asses anywhere in there body. They would be stubborn! I was unable to answer when I read it then couldn't find it until now. Just have to say thank you for my laugh of the day.

Mary

[sgerrard]

Hi, My name is Linda. I was diagnosed with an acoustic neuroma nearly 3 yr. ago when I suddenly felt a fullness and discovered a total lack of hearing in my right ear. To make a long story short, the tumor was watched for 8 mth., at which point I was told it was growing and needed to be removed. I did my research and discovered I was a candidate for Gamma Knife. I had it done last August and went for my follow up MRI two weeks ago. The tumor has a hole through the center, which means in all likelyhood it bwill eventually collapse and shrink. I have yet to talk to or meet anyone who has this type of tumor and want to share my story.

I'm always glad to hear about a GK that went well, it sounds like your tumor is a goner. I wish mine had a hole through the center; it is just sitting there quietly doing nothing.

And welcome to the site, I hope you will share more of your story.

Steve

[BK]

You have me.  I am almost 6 months out, May 8th to be exact, after a translab. with a 3.5+ sized tumor. You can ask me anything.  I have went through a lot of and have residual issues I am dealing with. I am sorry you have this, try to stay positive - easier said than done, I know.  There are a lot of people here with real life stories.  I wish you luck!

[MaryBKAriz]

Hi BK, new friend,

Thank you so much for your kind reply! I will try to stay positive. Most of the time I do okay, just every so often it hits...is that what you experienced? Do they expect your residual issues to get better? I hope so. I hope to have CK or GK in the next couple of months at most. Did you do the procedure locally or travel?

Take care,

Mary