Newbie AN - Need Suggestion and Referral

[KP5478]

Hello,

I am new to this forum. About two weeks ago I was diagnosed with an AN in my right ear. MRI report states 5mm x 5mm x 4mm tumor entirely intracanalicular in the distal right canaliculus of the internal auditory canal.

I live in Dallas, TX Metroplex and am looking for anyone who would like to share their experience with any Dr in this area.

Also, looking for suggestion on what should i do, Radiation, W & W or surgery. I am 52 yrs old male in good health and so far my symptom includes, about 15% hearing loss and mild TN in my ear.

I have read quite a bit of information on this forum but what I am looking for is "what would you do, if you were in my situation?"

[CHD63]

Hi KP5478 and welcome to this forum .....

As I am sure you have read here, we are not doctors, nor do we pretend to tell other people with acoustic neuromas what they should do.  We willingly share our experiences or ask questions about what others have done in a similar situation.

That being said, your AN is very small still and as you know typically ANs are very slow growing so you have time to do your research and seek additional opinions (both professionally and from trusted friends and family members).

If your symptoms are currently a small (but significant) amount of hearing loss and mild tinnitus, I would probably monitor my symptoms and if they increased or new ones were added, I'd seek treatment ..... but that is just me.  If you are in a profession where good hearing is essential, I would probably explore radiation treatment soon to avoid further hearing loss.

The final decision has to be yours and yours alone.  You are doing the right thing to do your research and seek advice.  If you have not already done so, send for the free information from the ANA.  This will help you sort out your options.  See:  http://www.anausa.org/index.php/contact-us/free-ana-information-packet

Best wishes and gather your questions and ask away.

Clarice

[Brewers7]

Kaybo is our very experienced Texan. 

[TJ]

Hi and welcome, Clarice is correct in saying that since your AN is small you certainly have time to do all your homework.  The decision process was the hardest for me.  Once you have decided what is right for you then move on to the next step.  For sure you need to take enough time for that to happen.

Good luck
TJ

[Jim Scott]

Hi ~

Welcome to the ANA discussion forums.  Your AN is small but as they often do, it is encroaching on your hearing nerve and will likely continue to grow.  Observation  ('watch-and-wait') may be the most prudent course for the moment but you should have a plan in place should your next MRI (or emerging symptoms) indicate that the tumor must be addressed, soon.  Your small AN would very likely make you a candidate for radiation but surgery has to be considered, too.  We're not medical professionals and cannot make concrete recommendations to anyone but we can offer you our collective support as you struggle with this decision because we've been where you are, today, and understand the anxiety the situation generates.  However, in the final analysis, the choice of how to address the AN and what physician to employ to do so is always the patients decision.  If we can help with answers to any relevant question, feel free to ask.  We have some members in Texas that, I'm sure, will soon reply to your post with pertinent information.

Jim      

[KP5478]

Thank you all for your responses. I am scheduled to meet with Dr. Roland and Dr. Mickey at UT Southester in couple weeks.

I have started my journey with the research before i take any action.

As I do my research and weigh my options, I am sure I will have more questions and hope to post them here and get some feedback.

For now, I am conflicted between radio surgery and microsurgery and hope to resolve it over the course of my research.

KP

[frenchjoey]

Like everybody I do not have the answer of course. I just would like to say that I had neglected extremely mild balance issues for years and when they got slightly worse I had an MRI that's when they found a had a tiny AN (7mmx8mm). No hearing loss, no TN so I was told to W&W.

Still I started  making inquiries about the various treatments. Glad I did because in France it takes for ever to have an appointment with the only two existing teams who perform GK. And then over the summer, in a period of about 4 months everything got out of control. My hearing got worse and worse, so did my balance. I begged them for another MRI (literally). The AN had only slightly grown but since it was located at the very base of the nerve near the cochlea it was causing issues that small ANs don't normally do. Anyway as I said glad I had arranged for an appointment beforehand, I was thus able to have GK rather rapidly.

This message is NOT meant to scare you at all  . I know a lot of people are in the W&W situation and are perfectly fine for years and are able to have treatment when the time is right. For me the timing was wrong. It's entirely my fault as I should have looked into my balance issues sooner. The Professor here in Marseilles who is said to be one of the best over the whole of Europe says he doesn't agree anymore with the W&W thing. He says people should get rid of their ANs however small to avoid any further complications. I'm really, honestly not saying he's right! GK although less invasive than an operation is still something one might want to avoid.
At the end of the day, it's a very personal decision that you have to be comfortable with, depending on the doctors you see and the trust you put in them.
Make as many inquiries as you can and you'll be able to make the decision that you know is right for you. We all do at one point.
Keep us posted.
Cheers
Joey

[Mickey]

Take your time to make a decision... We know the three viable options which have worked for everyone with the best usually coming with carefull planning and research individually. I`m a firm believer especially as we get older that AN`s in some cirmstances reach a point where they "stabilize" (usually after 5 years no growth). Good healthy lifestyle, etc. is important. ( W+W brigade ). Best wishes, Mickey

[alabamajane]

welcome to the "club"..
one thing I did and would recommend is to send your MRI and any auditory testing you have had to the House Clinic in Los Angeles (HEI.org) for a free consultation.

 They will look at your info and have a phone conversation with you with "no obligation" to have treatment done there. I did it and it was most helpful to have their opinion. They are some of the top Drs. in the country for ANs, some will tell you they will lean toward surgery, but they also do radiation from what I understand. The Dr I spoke with did agree with me that I could w&w the first year I sent MRI, then the next year I sent the next MRI and he suggested I proceed with surgery as mine had grown and was pressing on the brain stem and radiation was not an option at that point.  There are other facilities also who will provide this type of consult. I believe that the more opinions you can get the more educated you will be to options and exactly what is going on.. that is one thing about it,, everyone has an opinion,, but at least you can determine what the consensus is about treatments/or not and also about size, location and what it may be impacting from the different drs..

One thing with w&w,, is IF it grows , it may rule out radiation at some point and you will have to have surgery, if w&w is no longer an option. So it is beneficial to have that "gut" feeling about the different scenarios ,, whether you are willing to have radiation or not and whether you can "stand" to have tumor in your head and w&w.. some can and some can't ...

I don't know anything about Dr in TX so no help there,, just some thoughts on the whole decision process which in itself is quite overwhelming as it is such a huge decision. You seem to have time on your side though as it appears to be on the small side and you don't have many symptoms other than the hearing loss..of course I am not a Dr. so this is just my opinion for what it is worth! Good luck, keep us posted.. Jane

[PaulW]

Hi Frenchjoey,
The opinion of your Dr is becoming increasingly popular.
A number of recent studies are beginning to indicate that proactive radiosurgery for those with hearing in intracanalicular tumours,  (typically 10mm or smaller) provides the best long term outcome.
I know I can find studies that show W&W is best and microsurgery is best too, so it is ultimately a personal choice.

Worth a read.

http://www.ncbi.nlm.nih.gov/pubmed/21121792

[leapyrtwins]

Dr. Vrabec.

I think Patrick (texsooner) went to him.

Jan

[james e]

I live in Georgetown (Austin metroplex) and used Dr Vrabec at Methodist Hospital in Houston. The guy is a pro. Dallas probably has its share of doctors as large as that area is. I just don't know who they are. I started at Scott and White in Temple, but they wanted me to do radio therapy and I was opposed to that type of treatment. The radiologist was like talking to a brick wall...talked around my questions...could not get a direct answer to my questions. Hospital stay in Houston was 3 days. Very pleasant experience. Vrabec also did my BAHA. Just go to the web and look up Vrabec. Send him your MRI.

James