Author Topic: Finding the right doctor is an uphill battle  (Read 3900 times)

Alwaysnyer

  • Newbie
  • *
  • Posts: 2
Finding the right doctor is an uphill battle
« on: November 05, 2014, 12:17:15 pm »
Hello and thank you members for this wonderful forum.   I have been experiencing balance issues, facial numbness, tinnitus and a feeling of fullness in my left ear.  In August my ENT sent me for an MRI which showed a mass 2.3 X 1 X 1.7 cm.  (Extra-axial mass with the epicenter at the internal auditory canal with some extension of the enhancement that is ether along dural tracts or perhaps the acoustic nerve.  Differential is acoustic schwannoma or meningioma.)  I immediately saw a neurologist who recommended that I seek treatment at University of Florida, Gainesville.  I was able to meet with Dr. Friedman at UF and he recommended Gamma Knife, not for acoustic neuroma but for what he feels is a meningoma.  He wanted to schedule GK for  the following week.  Truthfully, I just wasn't ready to commit to treatment after only a 10 minute consultation during which I felt extremely intimidated and rushed.  I felt I needed time to do some research of my own and seek at least another opinion or two.  I contacted the University of South Florida in Tampa and scheduled an appointment with Dr. Agazzi.  While waiting for that, I decided to submit my information to the Barrow Institute in Arizona. They offer a second opinion program for a $100. fee.  I sent them the cd of my MRI and medical records via internet and waited anxiously for their opinion.  That was quite the experience.  In about a week I received a report with their recommendation that I have Gamma Knife to treat my Trigeminal Neuralgia.   When I called and informed them that I have no symptoms of Trigeminal Neuralgia, they said the doctor had been working on a couple of files at the same time and just made a mistake, and I do have an acoustic neuroma.  Needless to say, I don't feel very confident with Barrow Inst. so I know I won't be going there for treatment.
It's now November and I've been to Tampa and met with a neurologist, Dr Agazzi who immediately sent me to see his collegue, a neurotologist.  He advised Vestibular therapy and will see me again in January,2015.   The neurologist wants another MRI in December to see if there is any change. I should add that I am 65 and do have insurance that allows me to go where ever I choose.  That is a blessing to have the ability to go where I want for treatment.  However, making the decision is so hard when one can't even find two doctors who agree on what I have or what the treatment should be, ugh!

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3227
  • Life is good again!!
Re: Finding the right doctor is an uphill battle
« Reply #1 on: November 05, 2014, 01:09:42 pm »
Hi Alwaysnyer and welcome to this forum of caring, supportive new friends .....

It sounds like you have had a series of misleading opinions on your mass.  At 2.3 cm, you should have several options open to you:  wait and watch, surgery, or radiation treatment.

There are several highly respected medical facilities around the country, who specialize in the treatment of acoustic neuromas, who will do free evaluations via a CD of your MRI, a recent audiogram (if available), and a brief written description of your history.

Some excellent surgical/radiation free consults are:

Dr. Rick Friedman at http://acousticneuroma.keckmedicine.org/
Several doctors at http://www.houseearclinic.com/consultation/acousticneuroma
Dr. Steven Chang at https://med.stanford.edu/profiles/steven-chang
Dr. Dade Lunsford at http://www.neurosurgery.pitt.edu/person/dade-lunsford

There are many others, as well ...... this is just a sample.  I would highly recommend you continue in your search for additional opinions, given there seems to be some confusion on exactly what type of tumor you have.

Let us know how else we might help.

Many thoughts and prayers as you wade through the maze of the decision-making process.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

sandyinwisconsin

  • Jr. Member
  • **
  • Posts: 91
Re: Finding the right doctor is an uphill battle
« Reply #2 on: November 05, 2014, 07:23:52 pm »
One thing I think we all learned from our experiences is that a surgeon
wants to do surgery $$$ and a radiiation doctor wants to do radiation $$$.

I believe age is a huge deciding factor too and radiation is recommended for
people over 60.  I'm 44 and still chose radiation.  I just didn't want to deal with the
post surgical quality of life issues. 

My symptoms are probably better than before radiation, but I'm not out of the woods yet. 
I still have future growth to worry about.

Please do lots of research.  Everyone's outcome varies no matter if you
have surgery or radiation.

Sandy

1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

joyce04

  • New Member
  • *
  • Posts: 22
Re: Finding the right doctor is an uphill battle
« Reply #3 on: November 05, 2014, 08:13:42 pm »
This is great information...Thank you for posting the list of dr who will give recommendations.
Grace under pressure...

Alwaysnyer

  • Newbie
  • *
  • Posts: 2
Re: Finding the right doctor is an uphill battle
« Reply #4 on: November 06, 2014, 10:01:28 am »
Thank you Clarice for the information. I've just called Dr. Friedman's office at Keck USC and will be sending him my MRI and records for review. Hopefully, I'll be able to sort all of this out and come to a decision in the near future.  I'm so thankful to have found ANA and this forum. It truly does help to know I'm not alone in this fight.

raji83

  • New Member
  • *
  • Posts: 39
Re: Finding the right doctor is an uphill battle
« Reply #5 on: November 06, 2014, 02:51:41 pm »
Just had successful surgery with dr. Golfinos and Dr. Rowland in Newyork ,NYU. Great doctors. Highly recommended.

 


anything