New to An & this site

[josnik]

I was just diagonised w/AN on firday. The tumor measures 2.8x2.3cm. I am 39 yrs old. After battling Hodgkins 13 yrs ago this news has been hard on me. I am trying to see what my next step is. Right now I'm trying to find a Dr/hospital in my area (Pittsburgh, PA) that can be referred to me. I know the 2 options are radiotherapy or surgery to remove. I don't want to lose my hearing but I guess that might be one of the effects. Right now I have "ringing" in my ear--but I can still hear. If anyone can recommend a Dr in my area--please advise. Any other advice is welcome as well. Thank you.

[shoegirl]

Hi, I just recently found my AN too - about 2 weeks ago.  I live in Phoenix, but I am from Pittsburgh.  I grew up there.  I would recomment UPMC.  I hear they have a great facility.  I was considering going there for a consultation, I still have family in the area.  I may still do it.  I have read a lot great statistics about their success rates with radiation.  I can't comment on their success with surgery as I haven't been researching the surgery treatments too much.  I would start their and maybe consider John Hopkins in Baltimore if you don't want to travel too far.  If you don't mind traveling I would consider The House Clinic in L.A. and The Barrow's Institute here in Phoenix.

Have you had a hearing test yet?  My hearing is still fine.  My major complaints are eye twitching, dizziness, and occasional headaches.  I wish you the best of luck.  I am sorry to hear that you are faced with battling another medical crisis.  Sounds like you are strong person - you'd have to be to survive Hodgkins!  This site is great! The people are very willing to share their stories and are all very honest and upfront about what they are going through - it has been very comforting to me.

Best Wishes, Suzanne

[josnik]

Thank You Suzanne for your reply. I will try Pgh, PA first. The hospitals here is seem to be well reputable. I guess I have time to research to find out what my options are. My hearing is ok in the ear w/AN (left ear)-right now I have "ringing" which is why my hearing is limited. I did have a hearing test. My balance seems to be ok. I wish you luck in your search as well. It's nice to know that I'm not going through this alone.

[shoegirl]

Hi, I was reading another post from a gentleman by the name of Mark.  He recommend this link to UPMC regarding resection or radiosurgery.

http://www.acousticneuroma.neurosurgery.pitt.edu/or.html

Hopefully the link will work for you.  I went on their website they have great info on acoustic neuroma and so does the Barrow's institute.

http://thebarrow.com

Good Luck!  What part of Pgh are you from?  I used to live in the North Hills/Wexford area but also lived in the Tarentum area too.  I'll be there for Thanksgiving - looking forward to having some Primani Brother's!  Love their sandwiches!

[Rex]

I am sorry to hear about your diagnosis.  I had a 3.2cm tumor removed on 8/04/04 using the translab approach at Stanford.  Prior to surgery I had perfect hearing (not even ringing in the ears) and no balance issues.  Unfortunately my tumor was too large for there to be any but the slightest hope of preserving hearing using the restrosigmoid approach.  Because of my age (37 at the time) and large size of the tumor (plus brainstem compression) I "personally" was not comfortable with radiosurgery. 

The House Ear Clinic also gives free consulations:  http://www.houseearclinic.com./acousticneuromaconsultation.htm if traveling is inconvenient in the short term.   You may already have found this website, but http://andb.info/ is maintaiined by AN patients and has alot of useful informtaiton which helped me figure things out after I was diagnosed.

Good luck with everything.

[josnik]

Thank you, rex for the info.

Suzanne, I'm from a llittle town called Canonsburg, PA--it's about 40 min south of Pgh.
Believe it or not I just tried a primani sandwich about 2 yrs ago. It was OK--was expecting so much more with all the hype. I'm a pizza girl. I looove Pizza. Thank you for the info about UPMC. I'm making my 1st appt w/the doctor this week. I want to know all my options. Thanks again. Take care.

[shoegirl]

I know where Canonsburg is, had a couple friends who used to live there.  If you ever get to the North Hills my brother has a pizza shop called Madison's Pizzeria.  His pizza is pretty good! 

Also, you might want to check John Hopkin's Acoustic Neuroma site.  Just search for it on Yahoo and it will come up. 

Good luck with your appt.  I am going to meet with a Radiation Oncologist Friday.  And then have some second opinion appts. in November. Hate waiting!

Best Wishes!