ANA Discussion Forum
Useful Information => Physicians => Topic started by: Zoe on July 28, 2008, 11:05:43 am
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I just returned from the dr's office with the diagnosis of AN and the recommendation to have surgery soon. I am shocked and not sure what to do first!!! Are there any members out there in the Youngstown area? Do you know of any doctors? One that was recommended was a Dr. Cliff Megerian at Univ Hosp in Clev and a Dr. Brad Welling in Columbus. Does anyone know either one of them? Any help would be greatly appreciated! Thanks, Zoe
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Hi, Zoe and welcome.
Being diagnosed with an acoustic neuroma (AN) is definitely shocking, but the good news is that ANs are non-cancerous. More good news, we are here to help you.
The following link will give you some idea of members of this forum who are from Ohio http://anausa.org/forum/index.php?topic=6973.0
I would also like to suggest that you contact the ANA and ask them to send you some information. They will mail you literature that tells all about ANs and their possible treatments. They will also send you a WTT (willing to talk) list of AN patients who are willing to be contacted directly via phone or email.
I'm sure others will be chiming in here very soon.
Hang in there and don't be afraid to ask us anything. We are here to support you.
Jan
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I can't tell you how grateful I am to hear from someone. Thank you for replying and for your advice! I am still in such shock. Any little gesture is a biggie to me.
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Zoe,
You will hear from many... a welcome and hello from me... and good to see you here. There is a world of info available here and our "in-house Welcome Wagon Jan" *blows kiss to Jan! :-* * has begun to give you wonderful suggestions. Jan is on the money (don't tell her I said that) but yes... it is benign.... the buggers are treatable... and please use the "Search" function here to possibly find info you are seeking out.
we're here to help... I'm sorry you are joining us... but, on the flipside... glad you are here.
Hang tough... we truly will help you get through this... as many (such as myself can attest)...many were there for us as well.
Take a deep breath..... we're here to help.
Phyl
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Hi Phy,
I appreciate so much your responding. Can't tell you how good it made me feel to read your words of welcome. I need the support so much at this time! Thank you.
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Zoe -
Marci just had surgery with Dr. Megerian last week and is already home and doing very well.
Her member name is MAlegant. Read some of her posts if you get a chance.
Jan
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Hang in there Zoe, we seem to have quite a few good teams of surgeons in Ohio, and in our area. There are several on here who have seen Dr. Megerian, some who have seen Welling and I know of a few who have been treated at the Univ Med Ctr in Cinci (oHIo and OhioAlso). I myself am from the Toledo area and opted for a doc in Michigan, a bit closer for me :) Dr. THeo and Pensak at Univ Med Ctr Cinci are geat, I did have a consult with them but chose differently because of insurance matters and the 3-4 hour drive time :) Best of luck in your search. Take a long deep breath, there are lots of wonderful people here to support you.
Melissa
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Hi Zoe-
Hang in there! You've found a great spot for support and advice here on this forum.
I just sent you a PM and look forward to talking with you.
Debbi
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Hi Zoe,
I am so sorry you received your very unwelcome news today. I am so glad you found this site right away, like I did. It has been such a blessing for me.
Did you find out what size your tumor is and where it is located on the vestibular nerve? Are you having symptoms?
Besides the fact it is not cancerous, it is slow growing. So there are some pluses. Not that this is a fun diagnosis, it is shocking to hear. I was just diagnosed st the end of March and remember getting the news.
I agree with Jan, please get the pamphlets from ANA. They all are good and every one of them has helped me. Also, I think it is important to get second, third and maybe fourth opinions. There are AN specialist doctors across the country will look at your CD of your MRI. I am sorry I don't live near you so can't help you tere, but please know you have a cheerleader in Arizona.
Sending a BIG hug to you. Hang in there. We all get through this together.
Mary 8)
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Hi Zoe and welcome to the forum - this is a really very very good place to start with!
the others already said a lot you have to know in your first steps as an ANer!
I am also in the process of searching for really experienced doctors and I have already got in contact with House Ear Institute in LA, California. they are top-notch - http://www.houseearclinic.com
However, i have a friend in Cleveland and since me and my brother (who is most probably accompanying me on my journey) can stay up in his apartment, i am also strongly considering the idea of having my surgery there. I asked my friend to bring my medical records to Cleveland Clinic and i am waiting for them to call me soon.
I don't know a single name of a doctor there, but, as you, hope to hear some recommendations here.
if i get some information, i'll let you know!
stayed tune and get relaxed!
best wishes in finding the best way!
do not hesitate to PM me if i could be of any help!
Hrissy
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Zoe,
Let me be the next to welcome to the forum. Yes, a diagnosis is a shock.You are doing the right thing by going out and trying to find information before making a commitment to a treatment. That period of waiting to see the doctor for a consult can be unnerving. Know that because it is a benign condition, that you have the time to do your fact finding.
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information. I learned that there is no one *best* way to treat it. It ends up being an individual decision. (see my thread that guides you through the decision making process).
http://anausa.org/forum/index.php?topic=5786.msg53229#msg53229
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases.
Internet sites and reading about outcomes provides great info,
but it can also raise anxiety. Each tumor is individual and that makes the treatment outcomes "partly cloudy". They all can have unanticipated consequences--even waiting and watching.
Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise was. I looked for patterns in member posts related to
treatments and doctors.
Then it dawned on me that I didn't know how member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments? Could I generalize
from the qualitative data?That caused me to put together a chart. I wanted to know
the data related tohearing preservation, facial nerve preservation, in relationship to the
size of the tumor etc... It is another way to look at treatments.
This chart compared some of the various treatments using citations from
medical professionals, websites, or physician's e-mails. It is a laypersons
attempt to condense medical citations and information and that makes this
chart different from most. However, I am *not* a medical professional and no
decision should be made based on the chart. It was meant
to be a starting point for a conversation with your doctor. Please e-mail me if you'd like a copy.
Here is another link that you may find useful when you go to the doctor. (http://anausa.org/forum/index.php?topic=53.msg72087#msg72087) I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
I will search for the thread. (found it and copied it above)
Kindest Regards,
Kate
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Zoe -
I'm not sure which link Kate is referring to, but if you go to the main page of the ANA Website, you will find a list of questions for treating physicians under the "Overview" section.
Jan
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Zoe -
I'm not sure which link Kate is referring to, but if you go to the main page of the ANA Website, you will find a list of questions for treating physicians under the "Overview" section.
Jan
It was a link from a previous thread that included a list of questions used to ask the doctor. There are a few additional ones that complement the ANA Website list.
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Kate, a very nice hair-do! You really look terrific!
How have you been lately?
Hrissy
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well, Zoe... sounds like you've got a terrific head start to seek out info. Please remember that sometimes, the search for info can be overwhelming... and esp. since you just rec'd your diagnosis. Hang in there.... step back if you need to .... and know (as you can see here), everyone is ready to help with info, experiences and most of all... support you during this time as you start your "AN Journey"....
Hang in there..... remember to take a deep breath....
Phyl
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Hi, sorry to hear that you have a AN. I'm not from the Youngstown area, but had my AN treated at Riverside Hospital in Columbus. I have my year follow up today and hope all is well. If you look for a DR in the Columbus area, let me know.
Patch
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Hi Zoe. I sent you a pm. I am a huge fan of Dr. Megerian's and will be happy to answer any questions you have. Stay strong and listen to Phyl....step back and breathe........
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Zoe, I am so sorry I have not been online here in awhile, but I am from Warren, Ohio! I can talk to you!! I had my AN surgery 10 months ago in Columbus with Dr. Welling! Outstanding man! Please contact me. I can answer your questions. I had a consult in Cleveland but opted for Columbus. Who diagnosed you here in this area? We can possibly be neighbors!!
I know being diagnosed is a major blow!! It's OK, you'll get thru it! The anticipation is worse than the surgery itself! Please contact me!!
Nancy
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Zoe - did you have your surgery yet? If so, hope you are doing well.
Had my surgery at UH, Cleveland, by Drs. Megerian and Selman - they are great!
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