Author Topic: Newcomer with questions, and a less than pleasant experience with a doctor  (Read 16766 times)

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #15 on: December 18, 2006, 05:27:31 pm »
Hi, Ellid:

I can't add a lot to the good advice already posted here except ot tell you that, regarding the age issue, I'm 63 and in excellent health. My neurosurgeon didn't hesitate to recommend microsurgery (ASAP) for my 4.5 cm AN tumor as radiation, alone, was not a viable option.  Incidentally, at our first meeting, he put my MRI films up on a viewer in his office and hand-measured the AN as I watched him.  No mystery there.  He spent about 25 minutes with my wife and me, explaining my options.  He recommended retrosigmoid and I saw no good reason not to agree, so that is what he did.

I never saw an ENT physician.  My Primary Care Physician was trying to find the source of my imbalance and loss of appetite complaints and ordered an MRI with contrast for me, expecting to find a sinus condition.  Instead, he found a large Acoustic Neuroma tumor and called me at once, recommending a neurosurgeon.  That surgeon was not a good match for me (inexperienced with AN's) and I was recommened by my wife's doctor to another, highly respected and very experienced (35 years) neurosurgeon in New Haven (Dr. Issac Goodrich - a great guy).   He had done thousands of AN-removal operations and, unlike the first neurosurgeon - who seemed to be intimdated by my large AN - Dr. Goodrich was almost eager to remove mine.  He used microsurgery and radiation, combined, which turned out well. 

In any case, do the research and if you have a tumor under 3 cm, know that radiation is a very effective approach to this situation.  Meanwhile, hold on to the fact that it's a benign[/u] tumor, it's operable[/u] and that many have gone through the removal/radiation process successfully.   It is serious but it can be handled.  Do not panic or despair.

I wish you all the best.   :)


Jim[/color]
« Last Edit: December 22, 2006, 03:20:45 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Michael R.

  • New Member
  • *
  • Posts: 12
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #16 on: December 26, 2006, 05:39:09 pm »
Hi Ellid,



I am new to this site as well, so I can't add anything to the previous postings. But I'm 49 and was diagnosed in June and had second MRI last week showing a fair amount of growth. I live on the seacoast in NH and was referred to a specialist @ Childrens Hospital, he also admits MGH, MA Eye & Ear. I have had only one appointment, but my research has found some excellent feedback on the Dr. Poe.  Hang in there and take this one step at a time.

Michael
10 X 12 neuroma removed July 6th, 7hrs 45min by Drs. Barker  & Poe
tumor was attached to auditory nerve resulting in total loss of hearing in left ear.
Doctors and MGH staff were great.

jcinma

  • Full Member
  • ***
  • Posts: 159
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #17 on: December 26, 2006, 08:49:29 pm »
Michael & Ellid,
I highly recommend Dr. Poe. He and Dr. Barker were my surgeons at Mass General. Like Katie (krbonner) I have nothing but good things to say about the Drs. as well as Mass General.
Wishing you both the very best possible outcomes-
Jane
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #18 on: December 28, 2006, 06:57:40 am »
Jane,

Having met you in person, seeing how well you are doing after all you have endured (and yes, kbonner, yoga, and our fave crazykat), MGH is definately on their game when it comes to AN micro-surgical outcomes.

Sending you hugs, hope you are welll and can't wait to see you at the next brunch.  Happy, HEALTHY new year to you!

Phyl

Michael & Ellid,
I highly recommend Dr. Poe. He and Dr. Barker were my surgeons at Mass General. Like Katie (krbonner) I have nothing but good things to say about the Drs. as well as Mass General.
Wishing you both the very best possible outcomes-
Jane

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

krbonner

  • Hero Member
  • *****
  • Posts: 700
  • www.facebook.com/krbonner, bunnums on Twitter
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #19 on: December 28, 2006, 12:24:57 pm »
Thanks, Jane!  It's good to know the name of another experienced AN surgeon in the Boston area.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Joef

  • Administrator
  • Hero Member
  • *****
  • Posts: 1345
  • ** I rather be Kayak Fishing **
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #20 on: December 28, 2006, 12:33:41 pm »

I've been thinking of doing my follow up annual MRI's at Boston , (I dont want to fly out to LA every year!)
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

jcinma

  • Full Member
  • ***
  • Posts: 159
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #21 on: December 28, 2006, 10:07:09 pm »
Phyl and Joef-
A belated congrats on becoming moderators for this wonderful forum.
A Happy and most of all a Healthy New Year to everyone on this forum (please!)
Jane
P.S. to Phyl I will be thinking of you with each sip of the Belvedere (with a mist of vermouth lol)
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA

Ellid

  • New Member
  • *
  • Posts: 30
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #22 on: December 29, 2006, 07:43:49 pm »

I've been thinking of doing my follow up annual MRI's at Boston , (I dont want to fly out to LA every year!)

I don't blame you!  That's why I'm heading to Mass Eye & Ear rather than going to LA...I live in Easthampton, only two hours away on the Pike.
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #23 on: December 29, 2006, 08:30:22 pm »
Thanks Jane!  :-*... and don't forget the extra olives... will be raising my martini glass as well!

Baasten rawks... you gotta admit it! :)

Phyl

Phyl and Joef-
A belated congrats on becoming moderators for this wonderful forum.
A Happy and most of all a Healthy New Year to everyone on this forum (please!)
Jane
P.S. to Phyl I will be thinking of you with each sip of the Belvedere (with a mist of vermouth lol)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #24 on: December 29, 2006, 08:51:59 pm »
Congrats Elld!  And hope to see you at our next brunch... usually off the Pike around Worcester/Auburn (Maxwell's)

Phyl

I don't blame you!  That's why I'm heading to Mass Eye & Ear rather than going to LA...I live in Easthampton, only two hours away on the Pike.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kilroy1976

  • Full Member
  • ***
  • Posts: 197
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #25 on: December 29, 2006, 10:11:55 pm »
Someone can correct me if I'm wrong, but you should be able to get your MRIs from any nearby medical imaging facility that has an MRI machine and some contrast dye. They'll give you a CD of the MRI that you can send to your surgeon.

Speaking of bad doctors, mine has had my follow-up MRI films for three weeks now. I've made several calls, and far as I know he hasn't even taken them out of the case yet. I'm very "curious" to know what "appears slightly larger" and "deforming the pons" means to him.  >:(
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

marystro

  • Sr. Member
  • ****
  • Posts: 327
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #26 on: December 29, 2006, 10:52:37 pm »
Hi Ellid,

That was exactly what my ENT told me the next business day after MRI.  He said I have a "growth" and that I need to see a specialist ASAP.  This is not his specialty area but referral may take a while given there are only a few specialists in our area.  And then there is insurance challenges.  He gave me the House brochure and referred me to a neurosurgeon who was very objective and recommended CK.  Meanwhile I did my own research on line and found this forum.  Made up my mind on CK with Stanford before I even saw the referral.  By then the neurosurgeon's recommendation was a re-affirmation of my decision.  So, you see, you need to take matters in your own hand when it comes to health care.

We are fortunate to have found this forum.  It's such a godsend to help us through.  Hope your AN journey is as positive as mine.  Best wishes and don't get too stressed out --- having AN is not the end of the world.  It will all work out.

Mary
« Last Edit: December 29, 2006, 11:55:45 pm by marystro »
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

krbonner

  • Hero Member
  • *****
  • Posts: 700
  • www.facebook.com/krbonner, bunnums on Twitter
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #27 on: December 30, 2006, 08:01:49 am »
Someone can correct me if I'm wrong, but you should be able to get your MRIs from any nearby medical imaging facility that has an MRI machine and some contrast dye. They'll give you a CD of the MRI that you can send to your surgeon.

This is true, though I have run into problems this way.  My first two MRIs were done locally and grossly misread (in terms of the size/growth of my AN) by the local radiologist.  This caused a panic, and I had to make a a trip into Boston anyway to see all the doctors to be reassured that the original reading was wrong.  It just seems easier on my to make the trip to Boston and have my neuro-ENT do a wet read then and there, for consistency if nothing else.

Just another perspective.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

mellowrama

  • Full Member
  • ***
  • Posts: 172
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #28 on: January 03, 2007, 06:11:03 pm »
I saw 8 doctors ( including my primary who discoverd the an) before making my final decision.  If your situation is not urgent, I encourage you to see various and multiple surgeons and radiologists doctors to base your decisions.  I decided to see specialists in Phoenix at Barrows after sending them my cd/mri, which I had to travel to 3 times by the time it was over.   It was worth the expense...southwest flights are cheap.

I had one really less than plesant experience with a top nuerosurgeon of the world.  He told me things that I don't believe were true for my situation in a very callous way...and I'm sooooo glad I did not take his advice!

best regards, melinda


22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

Denise

  • Full Member
  • ***
  • Posts: 114
Re: Newcomer with questions, and a less than pleasant experience with a doctor
« Reply #29 on: January 04, 2007, 01:58:12 pm »
Ellid,
First I must admit, i did not read this entire thread, your doctor's lack of compassion and knowledge really makes me angry, and i quit reading.  What huge jerk!  My primary care physician was able to tell me the size of my tumor when it was discovered. Why your doctor couldn't figure it out is beyond me!

I am sorry you had to encounter such a bad doctor. It's bad enough finding out you have a tumor, to also find out your doctor is a nut!

I most certainly recommend you find another doctor, and I would think twice maybe three times about seeing his referral. Check him out throughly online.

I am sure others on this site have given you GREAT advice, and I wish you the best.  I need to go calm down, before I get myself into  trouble.

Denise
4+ cm, left side
translab 5/9/2005
CSF leak repair 6/23/2005
platinum weight in left eye 11/9/05
12/7 nerve switch 8/3/06
Univ. of MN Drs. Levine/Haines

 


anything