Newly Diagnosed in West Virginia

[kraynok2]

Hi to everyone from Buckhannon, West Virginia.  I was just diagnosed in September with an acoustic neuroma, 10mm by 19 mm.  I have been going to an ENT once a year for several years for my allergy serum.  He did one hearing test and then another one 5 years ago.  My hearing in my left ear kept getting worse, plus I had tinnitus.  I would ask him every year if there was a test we could do and he would just say no, it was probably nerve damage.  I finally decided that I needed to get another opinion, so I went to West Virginia University hospitals and met with Dr. Wetmore.  I had an audiogram which showed increased hearing loss.  For the words, I could tell the audiologist was saying something, but I could not tell what it was.  Dr. Wetmore immediately thought it was a benign tumor and set up an MRI.  He asked me if the other doctor ever suggested testing me.  When I told him no, he looked shocked.  The MRI confirmed an acoustic neuroma starting to press on the brain.  I have been researching for hours since then.  I am happy I have found this group.  Through it, I have contacted a Support Group leader in WV.  I do not want to do radiation.  I just want to get this out of my head.  I met with a Dr. Voelker for a consultation last week.  I can't say he was unfriendly, but I would not call him very friendly.  He did answer all of my questions I took from this site.  He has only done about 5 of these operations this year.  With WV being a small state and this condition rare, I don't think many doctors have much experience with this type of surgery.  I just did not feel like he was the one, even though it would be nice to stay closer to  home (Morgantown is a little over an hour from me.).  So I spent the weekend searching again.  I found Dr. Chen in Pittsburgh in my searches and on this forum.  He seems to have a good reputation and experience.  I called today and made an appointment for October 27.  I was glad I could get in that quickly.  I know it will be a tough recovery, but I just want to get this over with.  Sorry this is so long.  Thanks for listening.

[Kaybo]

Hi kraynok2 & welcome!!  Sorry you had to join our group but it is a great group of caring people.  If you would like to chat, I'd be more than happy to give you a call...let me know.

K   

[leapyrtwins]

Welcome to the Forum, kraynok2.

If it's any consolation, lots of people are misdiagnosed - you're not alone.

I know from experience the feeling of just wanting the tumor out of your head - that was one of the factors that made me choose surgery over radiation.

Recovery from surgery can be tough going in the early days, but you'll find that it's not insurmountable.

I had a very good outcome and would opt for surgery again in a heartbeat.

Good luck,

Jan

[anissa]

Hello! I'm sorry to hear of your AN but you've found a great group of folks to walk you through this.  I hope your appointment on the 27th gives you the answers you need.  Best wishes on your journey.
Anissa

[Jim Scott]

Hi, kraynok2 and welcome. 

The initial AN diagnosis is always a bit intimidating but you seem to be very focused and determined, which will aid your journey.  Surgery is the choice for many AN patients.  You're astute in your observation that there are not a lot of surgeons with the necessary experience in this area.  As you know, when choosing a doctor to operate on your tumor, experience in AN surgery is imperative.   Dr. Chen does have experience and a good reputation so I hope your upcoming consult goes well.  Your comment that recovery from AN surgery can be tough is accurate but remember that it is different for each AN surgery patient.  I had a relatively smooth recovery, considering the size of my AN (4.5 cm) and my age (63 at the time).  Fortunately, I was (and remain) in good overall health, which was in my favor.  I trust that your surgery will be successful, your recovery uncomplicated and that you'll be a frequent visitor to these forums so as to keep us informed of your progress.

Jim

[CHD63]

Yeah, you posted!!  Good for you ..... and, as expected, you already have replies.  Hope to see you soon.

Clarice

[moe]

Hi, and welcome  to the site~
Sounds like you already have a handle on your course, but we will be here for you each step of the way. Lots of different emotions going on.
So don't be afraid to vent and ask questions!
Maureen

[Lizard]

Just wanted to welcome you to the forum and to also tell you that I felt exactly the same way..."get this booger out of my head".  Also, I consulted with UPMC (Pittsburg) and they are a great group of Dr's.  Please let us know how the appointment on the 27th goes!
Take care,
Liz

[jaylogs]

Hello there and welcome to our little club. I am sorry that you are in this particular club, but you'll find no better group of people!  This is good that you are getting different opinions. The more you get the more options you can consider.  One way you can do this is by sending your MRI images (on CD) to different people around the country.  I have heard of a couple of them that do free consultations. House Ear Clinic (or Institute) in Southern California does this, that's how I eventually wound up there and had them do the surgery.  I'm not saying you need to go all the way to the west coast for this, but it's just another avenue of research for you, if you so desire!  Anyways, this is probably the worse time for you right now because this thing in your head is gonna pretty much consume all your thoughts until you make that decision on where you will get it taken out.  You are already one step ahead in that you've started your reseach using this discussion forum.  There's no such thing as a stupid question in this place so if you need to vent or know anything, we can try to help you out. We are not doctors (well, most of us aren't), and keep in mind each person's experience is going to be different. But it sure helps to have people who've been through all this to help you out! Take care and good luck!
Jay

[Tumbleweed]

Hello and welcome to our forum! I agree with Jay that you should get a second opinion from House Ear Clinic in L.A. Dr. Derald Brackmann of House Ear Clinic developed many (if not most) of the modern techniques used for surgical removal of brain tumors, including ANs. He will review your MRI and other tests for free. Simply call House Ear and ask for him. Dr. Brackmann gave me invaluable advice when I was researching my options, and it didn't cost me a dime (except for the cost to mail him my test results). 

It's very important to get more than one opinion. If both doctors concur, you'll feel that much more secure in your treatment choice. If they differ in their opinion, your gut will eventually tell you which way to go. But without that second opinion, you may miss something you'll wish you had known before jumping the gun.

Best wishes,
TW

[DR]

It's very important to get more than one opinion. If both doctors concur, you'll feel that much more secure in your treatment choice. If they differ in their opinion, your gut will eventually tell you which way to go. But without that second opinion, you may miss something you'll wish you had known before jumping the gun.

Excellent advice IMO, unless your tumor is so large that doctors are pushing you to take immediate action.  Do some research, talk to another doctor, or two or three!  Sorry about your delayed diagnosis but now you know what you are dealing with.  Best of luck, keep us informed.

- Dennis

[leapyrtwins]

As one who didn't get a second opinion (I was that confident in and comfortable with the neurotologist I was referred to) I personally think the decision to seek second opinions, third opinions, etc., is up to the patient.

I'm lucky enough to have a neurotologist who does both surgery and radiation (GK) and after explaining both of them in detail - including all the possible side-effects - he let me make my treatment decision.  In fact, he refused to tell me what to do.

As long as you have met with a doctor who is qualified and experienced in treating ANs, and you are fully educated about your possible options, the number of opinions you get is totally up to you.

Jan

[ksiwek]

Due to the size of my tumor, surgery was my only option.  I don't envy your decision.  Choosing a surgeon, in my opinion, was one of the most difficult things to do.  I met with a few docs before I found one with the experience and bedside manner that made me confident.  You will know when you find the surgeon who is right for you.  It sounds like you are on the right path in terms of making sure that the doc you choose has enough experience.  Ask a lot of questions and if possible bring someone with you to your next consult.  It is helpful  to have someone who is more clearheaded to take notes and remind you of things that may not register during the appt.  Good luck...you will always have our support here on the forum!

Best,
Kris

[designergal]

Hi there!

I was just diagnosed last year with a 2.6ish right AN.  I live in Pittsburgh(originally from WV).  I have seen Dr Chen twice now and worked with his office staff many times...they all are great!  Dr Chen is very personable and easy to talk to.  I have decided to have surgery with Dr Fukushima in NC early next year.....I am not a big fan of the hospital that he practices at.  I asked at my last visit...about a month ago...how many AN surgeries he does typically and his nurse said he has about 6 scheduled in this fall...which seems crazy to me!  Let me know if you'd like to talk...I travel down in WV for my job and I am planning a trip to Clarksburg in the next month!
Cynthia

[designergal]

I meant to say I am not a fan of the hospital that Dr Chen practices at...Allegheny General in Pittsburgh....in my previous post it sounds like I am referring to the hospital that Dr Fukushima practices at!  Sorry!