Newbie/Watch and Wait

[Lamsue23]

Hi to everyone, my name is Sue and I am a newbie.  I have been reading all of these posting for quite a few weeks and have just figured out how to communicate with all of you.  I wish I would have known sooner about the Symposium, it sounds that it was very informative.  I'm 63, widowed with two wonderful girls.  They both live out of town and it's very diffucult for them as for me to go through these decision toghether.  I made my fourth MRI appt for Nov. on a Wed. so my Daughter in NY will be able to drive 3 1/2 hrs. to meet me and discuss all of this with my doctors.  First, I was diagnosed with an 1.2cm - 5.2mm tumor.  I have had three MRI"S so far.  I have a balance issue, fell last week on my new knee of a year. (First time falling)  I have dizziness and total Left SSD.  I'm seeing the ENT and Neuro Surgeon at Darthmouth-Hitchcock Medical Center in Lebanon, NH.  It's an hour from here.  I'm please to have all the questions available for me to bring next time. I decided that for now I would wait and see since it's still small.  Can anyone inform me if they know anyone from NH with an AN and where they are getting their treatment?  I know I'm close to Boston, but hate to drive there.  Right now I have wonderful friends that drive me to Lebanon.  I received my information from ANA and I didin't see anyone from NH.  Again, sorry I just rambled on.  I want to thank everyone for your imput on all the issues involved with having an AN!   

[Sheryl]

Hi Sue - as they say, "welcome to the group nobody wants to be a part of"!!  You will get wonderful information, insight, and many shoulders to lean on - maybe even someone from N.H. - there are plenty from New England.  I grew up in the Boston area, lived on Cape Cod after marriage for 26 years and then full time in Florida.  Right now we have the best of both worlds being "snowbirds".

I am a "wait and watcher" for the past 5-1/2 years finding, incidentally at age 55, a 9th cranial nerve tumor - sort of like an acoustic (8th cranial nerve).  It was originally measured at 9 mm (afterward thought to be larger but no other measurement was given) and after 5-1/2 years is now about 12 mm, so 3 mm in that amount of time is okay with me.  More importantly, I really do not feel any symptoms and there is no pressure on my brainstem.  Ironically my husband also has a benign brain tumor called a meningioma.  He had to have surgery and now with a regrowth is investigating radiation options in Boston (no, I don't like the thought of traveling there either).  You are lucky in having Dartmouth-Hitchcock so close. 

Good luck - keep us posted and be careful with your balance issues
Sheryl

[Lamsue23]

Thank you Sheryl for the welcome, I do hope I find someone from NH.  I know about the snowbirds, my daughter lives in Arizona.  Glad to hear that your AN is slow growing.

I hope that Darthmouth-Hitchcock is a good hospital, I did see it on the top 2007 hospitals, that's good news.  You never know, do you.

Sue

[Obita]

Hi Sue and welcome!!

Sorry, I can't help with Drs in your area.

You mentioned that you have had 3 MRIs so far.  Has your AN grown at all? 

Good luck to you and may your AN behave.  Kathy

ps:  I put my total hips on hold until 3 months after my AN surgery.  I wanted to do the hips first because they hurt so bad.  My AN surgeons and my Ortho said that would not be a very good idea because I was walking into door frames all the time.         Ouch about your knee - is it ok?  I am more careful with my new hips than I am with my head.

[krbonner]

Hi, Sue!

I'm not from NH (I'm from MA, right near the NH border) but wanted to wave across the border.  I was originally diagnosed by a Dartmouth-Hitchcock ENT in Nashua, and DH at first wanted to send me to a specialist in Lebanon.  But after some quick research, they decided I'd be better off going outside DH to Mass Eye and Ear in Boston.  Of course, I'm only 45 mins from Boston so that makes the decision much easier. 

The key is finding a doctor who is very experienced with ANs.  Yours is relatively small, so please don't feel pressured by anyone to agree to a treatment until you've done your research and feel comfortable with the decisions you're making.  You have time.  I don't know of any doctors in Lebanon, but that doesn't mean they don't exist.  You just want to ask how often they treat AN patients, how many they've done over their career, how often they recommend surgery vs. radiation vs. waiting, etc.  And if you decide you want the names of doctors in the Boston area, just ask.  There are a lot of good options.  They neuro-ENT I see has a watch-and-wait patient load in the hundreds, not even counting all the post-surgery and radiation patients he follows.

If you have any way of making it to Worcester, there's a group from the forum meeting there for brunch on Sunday Aug 5.  It's a great experience to meet people in person.  I went to my first brunch about 2 months before my surgery and it was wonderful.

Good luck, and keep asking questions!
Katie

[Lamsue23]

Hi everyone!

Thank you again for getting back to me, great to meet someone you can really talk about the same feelings you have in dealing with this An. 

To answer your question about if the AN showed any growth, the last MRI showed nothing to the eye but Dr. Morrison, ENT mentioned that my audio showed a change.  This is why they are not waiting too long to get another MRI .  My 3 MRI's was in a very short periiod of time, every two months.  I will ask at my next MRI for a CD copy to send to House for a third opnion. My tumor is on the 8th cranial nerve and the 7th is inflamed. I am also more prepared to ask the correct questions on my next visit. Thanks to all of you!!

Katie, I'm very interested in your Aug. 5th Sunday brunch.  I'm not that far away, please send me the details and directions.

Oh, by the way Obita, my knee is OK!  I was a mess for four days, had to keep it elevated and iced it.  I guess the Ortho used SUPER GLUE!

Thanks All!
Sue

[Sheryl]

Hi Sue - I'm sure you'll get other answers and info but if you want to go to "AN Community" and then scroll down about 13 posts, it will bring you to "NE ANA Forum Gang".  There is probably a way to cut and paste the link from there to here, but dang if I know how!! I almost was able to make it, but a family commitment that I can't get out of came up.
Sheryl

[krbonner]

Here's the link to the brunch info:
http://anausa.org/forum/index.php?topic=3561.0

I can't make this one (the first I'm missing!) because of a family vacation.  Sue - where are you if you're not that far from Worcester?  I'm in Littleton, MA.

Katie

[Battyp]

Brunch sounds like fun..just remember..start with the chocolate cake first 

[Lamsue23]

Katie,

Thanks for the info on the Brunch, I will be there.  I live in Manchester, NH.  1 1/2 hr. from Worcester, I believe. I used to travel to Littleton often for business, I know where that is.

Sorry I won't meet you, but have a great vacation.

Sue

[krbonner]

Brunch sounds like fun..just remember..start with the chocolate cake first 

At Brunch, it's the apple dumplings.  And Chef Gil sets some aside for us!  YUM!!!   

But I certainly did learn my lesson about the chocolate cake.  Won't make that mistake again!!!!

Katie

[Lamsue23]

Thanks for the warning on the chocolate cake!!


Sue

[Sheryl]

Always a good idea to have dessert first!!!  Sue - I have family in Bedford, NH.
Sheryl

[kevans]

Hi, my name is Kandy and I too am a 56 year old   newbie. I actually diagnosed my self before I even had my first hearing test, you got to love the internet. This diagnosis comes at a very inopportune time for me, I'm entering my senior year of nursing school  in september and this just doesn't fit into my agenda, but I doubt it ever fits into anyones agenda for that matter. It has been an emotional roller coaster for me this the past week, and a ride that I'm sure won't end anytime in the near future. The ENT specialist that I've seen has very little good to say about the gamma knife and seems to be pushing trans-labyrith approach. My AN is less than one centimeter and I have no symptoms other than some hearing loss. My anxiety level was unbelievable until I stumbled across this forum. The posts have been extremely helpful, or should I say hopeful. I'm sure I will return often in the coming weeks. In the mean time I'm on the search for another specialist in the Detroit area. Has anyone heard of Dr. Edwin Monsell in this area? My daughter-in-law is a nurse and has heard good things about him is anyone else familiar with him or someone in this area? All reccommendations appreciated.

[sgerrard]

Hi Kandy,

I'm a little surprised that your ENT had nothing good to say about GK, especially as you still have some hearing on the AN side, and the AN is less than 1cm. Trans Lab surgery would automatically make you deaf on that side.

I found a standard bio page for Dr. Monsell at http://www.med.wayne.edu/otohns/FacultyProfile/fpem.htm. It notes that he did a fellowship at House Ear Clinic, so he may be surgically inclined as well, but he does appear well qualified.

You have time to do some research on treatment options. Depending on how the hearing loss strikes you, you might also consider watch and wait. In my case, there were enough symptoms developing and increasing that I felt that some active treatment was appropriate, as did my doctor.

I agree with Bruce, don't let a little AN rule your life. There are stories in this forum of people who do all sorts of things in their lives, just working around the AN like any other obstacle. One day, as a nurse, you will help some patient who has a neuroma, and they will be very glad that you understand their mysterious symptoms so well.

Steve