ANA Discussion Forum
Useful Information => Physicians => Topic started by: mh on December 14, 2006, 02:53:26 am
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Hi
I've just been newly diagnosed with a 6mm x 5mm AN, and waiting to hear more from Dr on full analysis.
Would very much appreciate hearing from anyone in Seattle WA area who could kindly offer some Dr recommendations.for second opinion
There seems to be a few names that pop up often, and wondering if I can get some feedback on the doctors you've used, and if you could share what the experiences were like.
I was advised I should wait & have another MRI is six months, but concerned about risk of tumor enlarging.
Still confused about all the pros and cons with different treatment options.......It all seems so overwhelming!!
Thanks for your help!!
MH :)
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HI MH,
Sorry that you have to be here, but if you want to find support, this is one of the best places to come to.
First of all I'm not from Seattle, not even from that continent, so I can't help you specifically.
However I can say this: your tumour is small. This is a slow growing thing, so you have time to look into treatment options. The size also gives you options. Wait and Watch might be a good option for a while, until you decide what treatment you want to go for. It'll take you some time to read about it, ask questions and find a solution that you're comfortable with. Sounds odd, but when you have a choice of treatments, going for one that you are comfortable with is an important issue. You have to live with that choice for a while.
What kind of symptoms do you have? How is your hearing?
It's unlikely that your tumour is going to enlarge to a size that will require a fast treatment, not at that size. It'll probably take years to grow to a medium size.
First of all, get the info about docs you need. There is a AN group in Seattle by the way. Haven't looked at their site for a while. Find out about all your options, from specialists in each field, microsurgery and radiosurgery. It's not easy to say or do, but try to relax. It's imprtant that you take the time you need to assimilate the information. It's going to be pretty manic for a while, reading, searching, thinking, worrying... But, as odd and a cliché as it sounds, this AN is one of the better brain tumours to have, relatively speaking.
Good luck with it, and keep in touch with this board, these are wonderful people! :)
Lorenzo
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Thanks Lorenzo for the uplifting message......Really appreciate hearing from you,
By the way, Where do you live??
Worried in Seattle
MH :)
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HI MH,
I live in Ireland. The wonders of the net...
Glad you found my message uplifitng. :) There are a lot of very helpful people here, you've come to the right place.
One thing I forgot to tell you, don't be worried, things look much more daunting now, but once you get into it andyou make a decision, you'll feel the pressure come right off your shoulders. I did in any case.
Keep at it, calmly and slowly. Take your time.
Ciao, Lorenzo
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Hi mh and welcome to the forum:
I know gennysmom is in the Seattle area if you want to check out her posts or write to her.
Best of luck to you in your research. I do know that it is indeed overwhelming at first, but as time passes and you accept it, it truly does get better. In a few weeks, you won't be thinking about it constantly and when you find the right doctor, you will settle down alot.
Hi Lorenzo in Ireland. I have cousins in Co. Mayo. and a month back, there was a Cindy on here living in Co. Tipperary.
Have a good day everyone, Kathy O'Brien
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Welcome! I'm sorry you have to join the group but it is a great resource.
First of all, try not to panic too much. (Easy for me to say, I know! I remember panicking when I was first diagnosed!) Take your time to do your research and find a doctor who's dealt with hundreds of ANs. These tumors are rare enough that an experienced doc is key.
Also, your tumor is small. You are not in any rush to do anything right now. You can take time to look at the pros and cons of each type of treatment (watch-and-wait, radiation, or surgery) and figure out what makes the most sense for you in your particular situation. For a lot of people, watch-and-wait is a very viable option. My AN was 1.8cm at diagnosis, and my doctor and I decided to just watch it. These tumors are usually so slow-growing that they sometimes never turn into problems.
My point is that you have the time to do the research, find a doctor, and decide what type of treatment is best for you. Don't feel like you have to make immediate decisions.
Good luck!
Katie
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Hi KAthy,
Good Irish name there! Cousins in Co. Mayo, nice place, love it. Wonder where Cindy is now, not onthe board anymore? I'm at the other end of the country from your cousins, right beside Co Tipp.
Sorry for hyjacking the thread MH. You're getting great advice here from all. Hope it helps.
Ciao
Lorenzo
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MH, please feel free to get ahold of me anytime! I had my work done in Seattle and know quite a bit. Email me or IM me, and I'll give you my # to call if you like.
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Hi Genny,
Thanks for replying. I have heard about Dr. Backous but not so favorably. Would you reccommend him ? I heard he was extremely arrogant,.
Thanks
MH
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I had to go with Backous, I'm Group Health...to do anything different would mean it would have been out of pocket. That being said, he definitely can rub people the wrong way, but I think his abilities back it up....I wouldn't say arrogant, but extremely comfortable in what he's doing. I think he knows the microsurgical procedure backwards and forwards and talks a mile a minute about it. I would reccomend him in a heartbeat. I could care less how you are, if you're an excellent surgeon, that's what I want. I have a co-worker who was his patient for AN, a neighbor who was his patient for a Cochlear Implant, and he did the tubes in my best friends son. All will give his ability rave reviews. It's my understanding he's #2 behind Mangham in AN surgery count, and he's doing 1-2 a week as of my surgery.
If you are able, I'd also check the radiosurgery route...I know Seattle finally has CK. Mine was too large for radiosurgery, plus it was pressing pretty good into my cerebellum. At MRI mine was 3.1 cm, but Backous said in the 4 months to surgery (because I opted to wait that long) it had grown "considerably".
Hope you survived the storm!!! I finally just got power back. Keep me updated!
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I am from Seattle and had Dr. Backous for my surgery also. He was great! They are no words to describe his personality but he is the best at what he does and I am glad I chose him. Even after surgery he has been great with all the problems i was having. I think he is very busy and over booked with patients. Was told he has a partner coming in Feb. I hope this helps a little. By the way i had a 4cm tumor on left side and had translab surgery on sept 20th 2006. 8)
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I agree, he is very attentive to any needs you might have, and his staff is fabulous!!! He visited me several times in my hospital room, even though at that point I was back under the care of my Group Health doctors. He's extremely interested in his patients and how they're doing. The nurses on the neuro floor were hit and miss though. All very nice, but some more attentive to thier job than others.
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Another well known Doctor that specializes in AN's is Doctor Charles Mangham of the Seattle Ear Clinic.
He's is also very good, and very experienced . We're really lucky to have the choices in Doctors and treatments that are available in the greater Seattle area.
best to you
Raydean
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Hi MH
I live in Seattle- came here for Dr Mangham at the Seattle Ear Clinic almost three years ago. Love the area and am staying. Dr Mangham is incredible...I had Retrosigmoid on my 6x8mm AN which was causing me to fall over and have neuro issues. He saved my hearing, facial and balance nerves. I didn't lose my hearing before surgery and I lost none during. I've had follow-up MRI's and all looks good. I qualifies as one of my all-time favorite people and would recommend him a million times over! Dr Mangham works along with Dr Timothy Steege- neurosurgeon. Last year was in Seattles top docs. The doctors and their staff were extremely helpful. E-mail me if you'd like and we can exchange numbers if you need to chat. Best of luck with all this, it's a lot to process.
Cheers,
Rory
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I am also a patient of Dr. Backous who is on watch and wait. No growth on my 1st annual MRI last summer. I agree on his manner but his expertise is what I wanted. I have decided on radiation for if and when it starts to grow but it took a while to get educated about my options. This site has been the best I have found for info. I live in Pierce county and was referred to him by an ENT in Auburn. I have Cigna HMO and have to run all referrals through my primary doc.
Caroline
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HHMM - from one end of the body to the other ;D
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Hi Everyone,
Thanks so much for all your replies, and helpful info.. I've been witrhout power for several days, but I'm certainly grateful it's back!! I visited Dr Steege last week, and was impressed with him...very nice man.
Also saw Dr Mangham and it seems he's very knowledgeable and apparently has done over a 1000 of ANs, but his manner is also not great....he's extremely busy. I wasn't impressed, however, that he didn't read my reports prior to my visit, and I was appalled that he said everthing was fine, until I pointed out the part on the reports about the acoustic neuroma....he actually had overlooked it, then he looked at the MRI's and just said, Oh, yes, here it is.
However, he's very busy, I guess everyone makes mistakes, he's human ,but I was surprised he didn't read it properly.
But, Everyone seems to agree he is the leading surgeon for ANs.in my area. If I need another opinion, I will certainly check out Dr. Backous. Also just heard that Dr Ellenbogen is also reportedly wondeful, so it does seem I'm luck, as we do seem to have some excellent drs in this area.
Anyhow, I've now had 3 MRI's, one wirh contrast, and a CT scan, as apparently there's a lot of calcification and a possible infection.
As my AN is small ( 4.5 x 5.3 x 3.5 mm) Dr Mangham has suggested I wait for 6 more months and have another MRI. He believes the tumor is wrapped around my balance nerves, but hasn't grown yet to hinder either my hearing or facial nerves, thanks goodness, however, since there's a 2% to 5% of regrowth, he recommends I wait for 6 months, and then reaccess the growth rate.
However, I'm frustrated, to find out that my present symptoms such as severe vertigo, which can strike me at any time, will proabably not disappear even if I have surgery of any kind, including gamma knife. So, I really have no option right now, other than wait and watch.
By the way, for those of you who are considering CK, I discussed this with Dr Steege, an excellent neurosurgeon that does both microsurgery and gamma/cyberknife, he said the results were far more favorable with the gamma knife, compared with cyberknife. Ofcourse, it depends on how large the AN is, but I'm trying to find more research done on this subject....
Thanks again for all your comments....by the way, I'm new on this, and don't know how to contact anyone individually....pls help
I'm forwarding a fabulous link to a beautiful XMAS card......Enjoy!!
http://www.jacquielawson.com/viewcard.asp?code=0212320003
It's quite wonderful............Have a great day!
MH :)
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MH,
If you hit the IM button near each person's post, that will send you to a message area to that person. Please feel free to contact me, as I'm in the same area as you, although my experience is in the large tumor range. Have they been able to tell you for sure that the vertigo is caused by the AN? Not that they can for sure, but I would ask that question. People can have severe vertigo without having an AN. It may be another disorder. I might go see the other docs, Backous and Ellenbogen, because I think it would help you assess and feel better about what you're doing by listening to what other Docs have to say, especially if you don't feel that good about Mangham. Seattle is a great place to be, we have such wonderful medical services, definitely a good place to be.
Glad you finally got your power back! Mine was out for about 36 hours, which is short comparatively!
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MH,
I saw Dr. Backous for first opinion and should have listened to his advice of watch and wait. He is a fast talker, very confident, but I think he's very good at what he does. Mangham is probably the first choice, Backous next. My surgeon was excellent, Dr. Jay Rubinstein at U of WA, he has fabulous bedside manner, unfortunately he believed my dizziness was due to tumor instead of another condition. However, surgical outcome excellent as far as tumor removal and no complications. Terrible in terms of recovery due to multiple conditions.
Your tumor is small--if you ride out the vertigo, and believe me it's worth doing it--try Meclyzine or Valium, and tumor growth is minimal, suggest watch and wait or eventually radiation.
Surgery is a very big deal, and your tumor is small. My opinion.
Nan, Bellingham, WA
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My daughter was 16 when she had surgery at the University of Washington Medical Center. Now she is a student at the Udub! She lost her hearing in the AN ear (note: all the doctors we spoke to in this area predicted that, we talked to three before selecting the University of WA team.) Five years post surgery her face has recovered beautifully...no balance problems she is doing pretty great.
Fantastic team there. They do several of AN surgeries each week and have been for over a decade...the experience factor is huge in selecting a doctor.
The fact that the University of Washington is a "teaching" hospital is also something to consider...all the cutting edge technology being used and taught to our next generation of doctors.
Dr. Rostomily (neurosurgeon)
Dr Duckert (ENT)
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RE: Dr. Ellenboggen - not a common name. Does anyone know if he trained in Boston - specifically at Brigham and Women's/Children's Hospital Medical Center around the late 80's. Hubby was hospitalized in neurosurgery for three weeks due to a stroke and that name sounds familiar, I think as Chief Resident.
Thanks,
Sheryl
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Answered my own question regarding Dr. Ellenboggen. Googled his name and found out he is the same doctor that many years ago helped treat my husband in Boston - he was great then, probably better now.
Sheryl
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Guys -
has anyone realized you are responding to a thread that is 3 years old?
It was started by mh in December 2006.
Instead of resurrecting it, you may just want to start a new topic :)
Jan
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WOW Jan thanks for the "heads up". I guess I don't pay attention to dates - only contents.
Sheryl