My son just got diagnosed

[karenelizabeth]

He is 19 years old and healthy in every other aspect. He's had one MRI and we will meet with a surgeon in a few weeks. Any advice or words of wisdom would be greatly appreciated. How long does it take people to recover? Will his hearing be restored (he does have some but at 90 decibles)? We live in the Minneapolis St. Paul area, anyone know of a "center" for this kind of diagnoses near us? What are some of the side effects of surgery? It's overwhelming of course and we want the best outcome for him possible. Thanks in advance!
Karen

[Jsoule]

Hi Karenelizableth, I live in Minneapolis and had AN surgery 9 months ago. I did not have surgery in town but if you would like some of my research I did before surgery I would be happy to talk to you. My e-mail address is Makooda@comcast.net...I would also be happy to talk to you over the phone if that is easier,since we live close.. Sincerely, Julie

[TomC]

Karen,
Hello, It's hard to say how long recovery will take. The size of the tumor will probably be a determinate on type of surgery and recovery time. In my case, I had a large tumor (3cm) and had it removed in two stages (two operations). I was back to work (I'm a business executive) within two weeks part time and full time in about four weeks after each procedure. It has been two years since my operations and I have resumed a normal, active life about 4 months after my procedures.

It can be overwhelming, there are alot of options and things to consider. One of the big concerns is preservation of the facial nerve. Be sure to ask any surgeon you are considering to go with his/her results with complete preservation of facial nerve function. I talked to surgeons at two great ear clinics, the House Clinic and The Michigan Ear Institute. The philosophy of both specialist was preservation of facial function over preserving hearing. With your son being young, I would image that would be a major consideration as well.

I hope this helps, Please feel free to follow-up with any other questions. I'm not a doctor or expert by any means. However, when I was diagnosed my wife and I did alot of research, as you are doing now.

Tom C.

[Kim]

Hi, Karen.  As a mom of 4, I sympathize with your position in this situation.  I was back to work parttime in 2 weeks and back to pretty much normal activity in 4-6 weeks.  Of course, the size and location of the tumor will dictate some of the timeframe.  Mine was nearly 4 cm.  One of the best tools your son has to use to his advantage is to get in or stay in good physical condition, and be physically active, before surgery.  At his young age, it will be easy for him to be up and about, challenging his vestibular system afterward which will clear out the cobwebs faster.  Take your time and find a surgeon with lots of AN experience. 

Good luck!

[sirialison]

Hi Karen - I'm from Crookston (NW Minnesota) and I had my surgery at Mayo with Dr. Michael Link and Dr. Colin Driscoll in November '04. It was great to have a "local" place to go!

I totally agree with the info given in the other replys to your post. I know you have million thoughts in your head right now and  I would be more than willing to talk to you via email or phone about my experience at Mayo if you'd like.

You can reach me by email at samjam@rrv.net or office.tlc@midconetwork.com

Take care.

Siri Meyer

[russ]

Just remain aware at that young age of NF-2. This doesn't mean he will get NF-2 or has it,  but to be aware of the increased potential. See diagnostic criteria http://www.nf.org/
Russ

PS  Colin and Link are my team also at Mayo and very professional!

Russ

[RosemaryG]

Karen - first of all, I hope for all the best for your son.  Im sorry to jump onto your post, but I see some of the people that replied had the same team that will be doing my daughters surgery.  My 15 year old daughter was diagnosed yesterday with AN.  It is a very large tumor; looking at the MRI.  I didnt know what questions to ask - so I didnt ask the size.  We are from Northern MN (North of Bemidji) and were referred to Colin & Link at the Mayo. Dr.  Marion indicated the risk of loss of facial function is very high.  She has already lost all of the hearing in her right ear.  What kind of questions should I be asking?  Any direction would really be appreciated - they want to get the surgery done in the next two weeks.
Rosemary

[tryston]

Hi Rosemary,

www.anworld.com has a great list of questions to ask your doctors. Best wishes to you and your daughter!

[Obita]

Hello karenelizabeth & RosemaryG:

I had my surgery done at the U of M, Drs. Levine and Haines.  They have extensive experience in AN surgery.  At the time of mine (May of '04) they had done over 500. 

I would also be glad to answer any questions you may have about the surgery, recovery or the doctors.

Best of luck,  Kathy O'Brien