need infomation and reassurance

[red]

I am knew to all this forum stuff but am hoping I can get some answers.  My husband was dianosed with a left ear AN and the ent said surgery at the University of Utah Health Sciences Center.  We still don't know that much about it.  With don't know if he can do the surgery b/c of work and the recovery.  I guess we do what we can.  Does anyone know about the Unoversity of Utah and if it has any specialists.  Where should we be looking for the best doctors to help us figure this mess out.  We live in Idaho but are willing to travel if it means that my husband might have a cure for his dizzyness headaches and other symtoms.  What about the gamma knife?  Do they just try to shrink the tumor?  Are they sure these are never malignant.  Any info would really help us alot.

[Sue]

Hi Red

Welcome to you and your husband to the AN Club.  Sorry you have to join our exclusive group.  You will find lots of answers to your questions. Quite a few of the people who post here are surgical patients and some, like me, have had Gamma Knife or CyberKnife, and some are in watch and wait mode.  I don't know anything about doctors in Utah, sorry to say. I think there was somebody else recently from the Idaho area.  I think that they went to House Ear Clinic in Los Angeles, but I may be wrong on that.  Anyway, you are close to many places that can give you excellent treatment - Seattle or Portland comes to mind. I have no idea what is available in Denver or Salt Lake City. Treatment is determined somewhat by the size and location of your husband's AN. Some people have no choice, it has to come out of there. Other people have lots of time to decide what is best for their circumstance, surgery or radiation.  AN tumors are almost always benign. The chances of it becoming cancerous are very, very, very, very slim.  The chances of having radiation treatment and the tumor becoming cancerous because of that is also a very small percentage. Very small.  You have a greater chance of being run over by a truck on the way to the doctor's office.  Gamma Knife may or may  not "shrink" the tumor...but it will usually kill it and therefore keep it from growing. Others on here are far more knowledgeable than me, and will no doubt chime in with their two cents worth...Many have experience with House Ear Clinic in Los Angeles. This is one of the best places in the world for AN treatment, especially surgical options, although they now have radiation treatment, too.  They do free consultations.  I don't have the information in regards to how to contact them, but maybe somebody can put that up here for you.  I'm glad you found this place. These folks are very helpful and supportive. 

Sue in Vancouver, WA

[Captain Deb]

House Ear Clinic information is at
http://www.hei.org
213-483-9930 or they may have a toll-free number on the website.
Capt Deb

[Obita]

Hi Red:

The University of Utah does have a Neurotologist and I would imagine they also have Gamma Knife as most big teaching hospitals do AN treatments. 

How big is his AN?

Good luck to you both.  Kathy

[Patti UT]

Hi Red,

   I had my surgery at the University of Utah hospital. My 2 year aniversary is tomarrow. I live pretty close to the hospital. After I was diagnosed I did 2 months of research. I was leaning toward the House institute in Southern Calif but I found that the head ENT at the U was one of the head guys at House for many many years. His name is Dr. Clough Shelton and the Neuro surgeon who worked with him is Dr. Joel MacDonald, also at the U. During my research these two names kept coming up. They both have alot of experience with AN's People come to them from all over. They do several a week. ALthough I didn't care for Sheltons bedside manner, I felt comfortable in his expertise in this area and was pleased to be able to have it done close to home. I will warn you  though. The University Hospital is a LEARNING Hospital so you will be pestered by the interns constantly while in the hospital. I really didn't like that part. I would be happy to speak with you further about my personal experiences there if you want to email me direct just clidk on the envelope or go to my profile. Do all the research you can do. You might also want to look into the Skull Based Institute in So Calif also.  they do a less invasive procedure that have been posted here as very positive. what can you tell us about the size, etc. If it's small a wait and watch may be in order while you investigate your options. You will also need to look at the radiation option.  Good Luck on your AN journey. it's not an easy one, this forum you will find to be a huge help.

Patti UT

[Desilu]

Hi Red,

Numbers matter when it comes to AN surgeries. You want to have a doctor that is very experienced with AN's, hopefully he has done hundreds of these surgeries. Make sure who ever you choose answers all of your questions and makes you feel comfortable, if not, start looking for another doctor. We are here to help, so ask any questions you might have and I'm sure someone on this website will be able to answer it for you. This place is a wealth of information! I wish you the best, Ann