Newly diagnosed.... Need info in Seattle

[Sheryl]

HHMM - from one end of the body to the other 

[mh]

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

[Gennysmom]

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! 

[nannettesea]

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

[mom of AN pt.]

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)

[Sheryl]

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

[Sheryl]

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

[leapyrtwins]

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

[Sheryl]

WOW Jan thanks for the "heads up".  I guess I don't pay attention to dates - only contents.
Sheryl