ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: maggiemae on April 08, 2008, 07:58:28 am
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Hi everyone,
I'm just diagnosed yesterday, still taking it all in. I'm wondering how people go about finding the very best surgeons with the very best success rates. I have to say I am very comfortable with the doc I've seen in Boston thus far, but he is the person I've seen for SSHL, which is what they thought I had prior to MRI yesterday. I am now to be seeing a second person there, a Dr. McKenna. I've been told that the place I've been fortunate enough to find is one of the best in the country (Mass Eye and Ear Infirmary), but also have been told that it's always good to get a second opinion regardless. My tumor is small (under 1 cm) and it's likely to be the watch and wait thing, but I want to be proactive, have the opportunity to consider surgery prior to this this getting too large, etc. etc. I just really want to find the right doctor, even if it means traveling further. Thanks in advance for any replies- I'm glad to have found this forum.
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Hi Maggiemae-
Welcome to the AN club - not probalby the club any of us wanted to be in, but it is a great group of people. I can relate to what you are probably feeling right now. I was only diagnosed about a month ago and remember all to vividly how I felt. Like a deer in the headlights of an oncoming tractor trailor!
I have heard from others on this forum that the Mass Eye and Ear place is great. i am sure others will chime in to share their own experiences with you on this. You may also want to send a copy of your MRI to House Ear Institute in LA. I got a call back the very next day from them.
Since you are also not that far from NYC, you may want to come down here for some consults. I am having surgery with Golfinos and Roland at NYU Med. I have also heard wonderful things about Selesnick who is out of Columbian Presbyterian Weill Cornell in the City.
You are taking the right approach. Learn all you can. Don't forget to order the excellent booklets from the ANA, too. Very helpful and also great to share with family members.
Feel free to PM me if you want.
Debbi (counting down in NJ!)
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Maggeimae- Sorry to hear you are among us.But glad you found this website.
I was diagnoased at Jan end and just had a translab done on March 21st. When I first found out I did so much reading on this website and glad I did. I would use the Search option on this website on Doctors/Hospital names that I heard about or viewed when I googled 'acoustic neuroma or vestibular schwanoma'. I do recall the Eastern United States had a lot to offer. Massachusetts Eye and Ear Infirmary, Boston, John-Hopkins,Baltimore, Sloan Kettering, NY, to name a few. I am from Ohio and ended up at the Universtiy of Cinncinati with Drs Pensak (ENT) & Theodosopolous (Brain Surgeon). Ohio State seemed to have a good doctor (Welling) but I opted for Cincinnati as they had done more of these surgeries.
My tumor was small & I attribute that to such a successful operation & recovery (you can read particulars on Welcome Baaack commentary). It was 1cm and the doctors removed it all and said it easily peeled away for the nerve. Radiation was not my choice as I am a 50 yr old healthy woman who just wanted to get it out, be sure it was gone, put it behind me and move on. For the same reasons I did not want to wait and watch.
Best of Luck to You!
Becky
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IMO you should go through the normal channels - referrals, the list put together by the ANA (under medical resources on the opening page of this website), etc., - but in the end you need to decide in your own mind who is best for you.
Obviously make sure the doctor(s) are qualified and experienced in the treatment you pick, but I found that comfort level made all the difference to me. I absolutely could not have had the peace of mind I had going into surgery and during my post op recovery without the two doctors I chose. They have both made a huge difference in my life and I will forever be grateful to both of them.
Jan
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thanks to you folks for your replies. I guess I did not see the medical resources tab and will surely go check that. I've been trying to read a lot here, but it's only been a day, and I had to work. Thanks for the feedback. It's really so helpful to hear of others' experiences.
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maggiemae
House Clinic in LA is well known for AN surgeries. They do over 200 a year. I had my surgery in May 2007. Do a google search and look for their website. If you send them your MRI file (or CD-rom), they will call you back for free (the website say they will respond in a day, but it will take a few days). good luck and best wishes.
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Welcome to the forum. Yes, a diagnosis is a shock especially when a word like "tumor" is used.You are doing the right thing by going out and trying
to find information before making a commitment to a treatment. As you may
know, there is no *best* way to treat it. They all can have unanticipated
consequences--even waiting and watching. It ends up being an individual
decision.
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.
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.
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: even if it was outside of my local
area. I looked for patterns in the posts on the listserv related to
treatments and doctors. The listservs and guest books provide great info,
but it can also raise anxiety because each tumor is individual.
Then it dawned on me that I didn't know how listserv 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 to
hearing 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.
The chart also includes some of the most common websites.. I also put myself
through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" at the http://anworld.com/
Here is another link that you may find useful when you go to the doctor. 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.
http://anworld.com/questions/
Kindest Regards,
Kate
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Hi, Maggiemae
I'm Elliemae, and we're kin in more ways than one! I am a watcher-and-waiter in the care of Dr. McKenna at MEEI. He's got a great number of us in either W&W or in post-surgery, and several of them participate on this forum. I'm sure you'll hear from them!
My AN is 1.45 at last MRI (close to your size), with very small growth since I was diagnosed in 4/06 (my 2-year W&W anniversary!). I'm still trying to decide which treatment is better for me ... a hard decision for me. I have lost my hearing in that ear (maybe I waited too long?? Altho, that happened rather soon after my diagnosis). My AN is also involved with the facial nerve, and Dr M recommends translab surgery over radiosurgery (to which I was leaning). However, altho I greatly respect the Dr's surgical experience and opinion, I continue to think seriously about the radiosurgery alternative and am trying to get a referral to consult on Cyberknife at Beth Israel. There's a lot to learn about each treatment method, as Kate mentioned. She's given you some great resources. I also checked out the cyberknife support website forum at http://www.cyberknifesupport.org/forum/ (http://www.cyberknifesupport.org/forum/).
Also, you should check out the NE Forum Group posting under the AN Community section here. We're meeting for brunch on May 5. You should join us!
Good luck!
e
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hi maggiemae and welcome. Have to admit that your user name is one of my fave songs ("Maggie" by Rod Stewart! :) ) Great choice!
I also note what elliemae noted *blows elliemae kisses* :-*..... many of us here located in the Metro Boston and New England area. The thread for the brunch can be found here:
http://anausa.org/forum/index.php?topic=3561.180
Truly nothing better than meeting others who also walk in our shoes -- face to face -- to truly see how we do our best in this unique journey. May be worth a thought... there is also an upcoming ANA Metro Boston Support group meeting going on in Waltham on May 10..... another great way to meet the gang.
Best wishes... and again, welcome.
Phyl
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Hi everyone,
I'm just diagnosed yesterday, still taking it all in. I'm wondering how people go about finding the very best surgeons with the very best success rates. I have to say I am very comfortable with the doc I've seen in Boston thus far, but he is the person I've seen for SSHL, which is what they thought I had prior to MRI yesterday. I am now to be seeing a second person there, a Dr. McKenna. I've been told that the place I've been fortunate enough to find is one of the best in the country (Mass Eye and Ear Infirmary), but also have been told that it's always good to get a second opinion regardless. My tumor is small (under 1 cm) and it's likely to be the watch and wait thing, but I want to be proactive, have the opportunity to consider surgery prior to this this getting too large, etc. etc. I just really want to find the right doctor, even if it means traveling further. Thanks in advance for any replies- I'm glad to have found this forum.
Ok - this is my first day and first post - I was so happy to see your e-mail I am also a patient of Dr McKenna. My surgery is scheduled for July 14th. I feel very fortunate that I live so close to Boston and some of the best world-renowned Drs and Surgeons.
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Coffeylady -
I just wanted to say hi and welcome to the forum. I'm glad you found us.
I see you are scheduled for surgery next month. How large is your AN? and what surgical approach are you having?
Jan
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welcome coffeelady! your in good hands up there in Boston ! a few of us get together for lunch twice a year... look for us in the fall ...
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I am glad that I decided to register today.
My AN is small, I am not comfortable with, what and see... I have decided on the Translab- I am very comfortable with this approach and my surgeons. My concerns are with post-op and how things may go. I would rather be forewarned.
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Maggiemae and coffeylady--
Just noticed this thread and learned we have a doctor in common! I'm scheduled for surgery next Monday (6/2) with Dr McKenna and Dr Martuza at MGH, both of whom have stellar reputations (to learn more about the experiences of ANers on this forum with them, you can enter their names as a search term to locate relevant posts/threads).
Dr McKenna usually works with a Dr Barker at this point, but has partnered frequently with Dr Martuza in the past (there is typically a neurotologist/neurosurgeon team from what I gather, each responsible for different parts of the surgery). I chose Dr Martuza because my surgeon from my '88 original surgery (who's now retired, unsurprisingly!) recommended him.
I had been to Dr McKenna once in the late 90s when my local ENT wanted an MRI done, and liked him very much. I'm pretty hard of hearing (already had significant hearing loss in my unaffected ear prior to the AN), so the fact that he made a conscious effort to speak so that I could lip read easily (I was trained to lip read as a child, before I got my hearing aid) impressed the heck out of me. He's virtually the ONLY doctor I've ever met, whether ENT, neurosurgeon, internist--you name it--who's done so, and it really spoke volumes (pun unintentional, sorry) to me about the kind of concern he has for his patients.
Anyway, I will report back on my experience with these docs as a team!
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CMP
Please know that my thoughts and prayers are with you. I am scheduled to see Dr. McKenna on Wednesday June 4th to go over the paperwork, etc. Let us know how you make out...
Sharon
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Hi, maggiemae:
I'm sorry that you have a reason to join us (an AN diagnosis) but welcome to the forum. :)
Of course the initial AN diagnosis is upsetting and there is so much to learn and absorb. The main thing to hang onto is that the tumor is benign - and treatable. You have as much chance of dying from this as you do winning Powerballâ„¢. With your tiny AN, you'll likely play 'Watch-and-Wait' for awhile but still, being informed is critical to making future decisions regarding treatment. Your facility and physician have excellent reputations but a second opinion is always prudent. Just ask the surgeon (politely, of course) about his AN surgical experience and, most importantly, his outcomes. You seem pretty focussed and pragmatic so I think you'll get through this O.K.
Thanks for posting. Best wishes regarding your future decisions.
Jim
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Hi, Coffeylady:
Please accept my welcome to the site and the forum. Your surgery date is already on our community calendar. Please visit us often and keep us up-to-date on your progress, pre and post surgery.
Thanks. :)
Jim
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Sharon -
glad to hear your AN is small. I can understand not wanting to watch and wait - there are those who do and are very comfortable with that option. But it's a personal choice and I don't think I'd have the patience for it. I'd worry too much.
I took the liberty of putting your surgery on the AN Calendar since you are a newbie and I didn't know if you were aware of our calendar. I hope you don't mind :)
As I'm sure you realize, Translab will leave you single-side deaf (SSD). Lots of AN patients learn to live with SSD, but there are two excellent options - the BAHA and the Transear.
I had the BAHA surgery on 3/4/08 and will get my processor on 6/4 ;D If at some point you have questions about the BAHA, just let me know.
Jan
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Coffeylady,
Welcome!
You have landed a great website and a forum full of some wonderfully supportive and positive people.
There is much to learn about AN tumors. These are slow growing so take the time you need to become informed. Ask lots of questions. There is a wealth of people here to give you answers based on their own first hand experience… and what they too have learned from others.
Daisy Head Mazy
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Hi sharon and welcome.... good to see you here seeking out info... as you can see, many here to share thoughts/experiences re: our AN journeys. There is a VERY large contingency of New England based AN'ers... (myself included) and here to help.
Again, welcome.
Phyl
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Hello & WELCOME Newbies!!
Just as everyone has said, we are here for you. Feel free to ask any questions that you might have and we will do our best to answer them from our AN experiences! Wish we didn't "meet" this way, but be glad this group is here! When I had my surgery, there was NOTHING like this out there - I was pretty much all by myself (as far as talking w/ someone that had BEEN there)!
K
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Thanks for the support, Sharon! I'll be posting a full report as soon as I'm able!
Carrie
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Jan and Everyone
Thank you so much for making me feel so welcome. And, no I don't mind that you have added me to the calendar :D. It is just nice to know I am not alone and have the advice and can gain from the experience of so many people who have gone, and are going through the same journey.
The tinnitus is getting to a higher frequency (I am afraid dogs will be following me soon) and the passed week or so I get clicking, kind of like morse code. My husband looked at me perplexed a few days ago and I told him I was receiving some type of message that I was trying to decode - then tried to explain the ringing and clicking - it's just too hard to explain to someone not going through the same thing.
Sharon :D
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Hi Sharon-
Well, keep that great sense of humor! I'll tell you that a sense of humor is key in getting through the rough patches, wierd noises and all. Hang in there, and come back often!
Debbi
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Sharon -
it's obvious that your sense of humor fits right in with most of us here :D
Dogs following you - very funny!
Jan
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Yup, Sharon belongs here. The dog bit is funny; I also like decoding the clicks and pops - allien morse code, no doubt. I just can't figure out why they have crickets in the sound proof booth where I get my hearing tested. ???
Steve
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Steve -
the crickets are to keep you from feeling lonely and claustrophobic (those booths can be so small). It's probably why crickets are also sometimes present in MRI tubes :D
Jan
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Sense of humor is key. Life is way too short to take yourself too seriously
My MRI is Scheduled for July 2nd and you can bet that I will be looking around for those crickets. Actually not a big fan of the MRI, so I will probably have a face cloth over my face, it got me through the first time ;)
Sharon
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Sense of humor is key. Life is way too short to take yourself too seriously
Absolutely ;D
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And, if the face cloth doesn't work - go straight for the Valium! Then you just won't care... ;D
Debbi