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Second Opinion

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Nic-Ruby:
Hello, I've been "stalking" this forum since my AN diagnosis in July.  Now its time to post.  I just met with my Neurologist here in Boise, ID last week to discuss treatment options.  ANs are uncommon due to the population base here.  My Dr. has only seen a "scattering" of cases in his 35 years.  He recommends linear radiation.  My tumor is small, 1 cm.  But he thinks based on the MRI, my age, and the absorbency of the tumor on the MRI that it will grow.   He felt that surgery has too many risks and the other two radiation methods, gamma knife and proton beam are not done here.  I want a second opinion and I think I need to go out of state for that opinion.  However, there are so many options, I don't know where to go. 

I have family in Seattle and Portland areas so if those areas are possibilities, they would be my first choice.  If anyone has some advice on how to move forward on finding the right doctor for a second opinion, I would really appreciate it. 

notaclone13:
Hi,
I agree you need a second opinion. I am not sure about what is available in Portland, but I have seen the Swedish Medical Center in Seattle mentioned several times on this discussion forum. They appear to be a center for AN treatment: https://www.swedish.org/blog/2013/07/acoustic-neuromas-how-we-treat-them.

I would call them and see how best to proceed. Perhaps you can send them your MRI for evaluation.

alabamajane:
Hi,,
One option would be to send a copy of your MRI to the House Ear Institute in Los Angeles. They will look at the MRI and give you a free phone consult. ( or they used to,,, I haven’t been on here in awhile) ,, I did this in 2011 and spoke with Dr Slattery who was VERY nice and helpful in giving his opinion. There are other clinics who will provide this service also,, but I don’t believe I have heard of any close to you. You don’t have to go to them just  because you ask their opinion.

That s definitely a possibility for a second opinion. It is difficult to have an AN when there are not doctors in the vicinity who have VAST knowledge and experience with them.

I wish you the best in your search,,, one good point is that they generally are slow growing so you should have time for due diligence.

Jane

Sanderson:
https://health.ucsd.edu/news/releases/Pages/2017-11-15-15-renowned-surgeons-launch-acoustic-neuroma-program-at-uc-san-diego-health.aspx

Here is the article about Dr. Rick Friedman, MD, PhD, and Dr. Marc Schwartz, MD.

JD808:
Friedman and Schwartz are 2 of the best and I strongly recommend that you consult with them. They have a patient coordinator named Kris Siwek who is awesome at helping you through the process. When it comes to AN’s, you really don’t want someone inexperienced giving an opinion or operating on you. Go with the best and most experienced.

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