Second Opinion

[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.

[Blw]

Get as many opinions as you can. If you are younger than 50, most will recommend surgery because while there is good data for radiation out to ten years, there is not much known about what happens in 20-30 years, and you don't want these coming back. If you consider radiation, the best gamma knife center is Dr. Lunsford in Pittsburgh, he trained with the inventor, and they have treated thousands. For Cyber knife, go to Stanford, I think the Dr. is Steven Chang, also the best for Ck. There is a third radiation type, but my philosophy is let everyone else go first, and see how they do--not enough data on long term outcomes. Whatever you choose, make sure they are an actual center established to treat ANs. Stay away from people who have only seen hundreds. These are benign tumors but they still are brain tumors. Surgeries are probably 6-8 hrs give or take a few. 10+ hours is no big deal, and I think the longest is 32 hrs. The good news is that the centers set up to do them have done lots (1000s) and they run like clockwork.

[Nic-Ruby]

Thank you all for your replies.  I am flying to Seattle today to meet with Dr. Kyle Kim with Seattle Neuro in the Swedish Health Building for my second opinion.  I appreciate that you took the time to respond to my post. Thank you for your wisdom.  It has been helpful and calming.

[MarlaB]

I'm an hour north of Seattle...we are lucky here in the PNW that we have a few places and AN specialists here! Best of luck to you!

[janerioux]

I am in a similar situation as Nic -Ruby.  I am still waiting to hear from the first doctor I saw who said to observe.  I sent my 2nd MRI to them August 2 and they haven't called me back.  I have been reading and listening to webinars and it is so hard to make a choice.  I will have to travel out of State where ever I choose but it's where should I go.  I know my hearing is worse and waiting for my second hearing test and plan on sending my information out.  If I have to choose between hearing loss and facial paralysis I  would prefer hearing loss.  So hard to make a decision!

[judyl]

Nic-Ruby and Jane - did you have your second opinions? 

[Nic-Ruby]

Sorry for the slow response.  My second opinion ended up being between Dr. Kyle Kim and Dr. Daniel Landis with Swedish Medical/Seattle Neurology in Seattle.  They strongly recommended Gamma Knife treatment for my tumor.  After our discussions I agreed.  I had the procedure performed on 12/17/18 so I'm a week and a half out post procedure.  The attachment of the medal cage was the worst part but they treated me so well at Swedish Radiology.  My tumor had grown 1 mm since my original MRI in July.  I had 35 minutes of radiation. 

I had severe nausea for several days but took Zofran to help.  I also had headaches around the pin areas and deep pain where the tumor was zapped but tylenol and advil  took care of it.  I did not have to take anything stronger.  Today I do not feel nauseous at all.  I can tell that I get tired in the evenings and its hard to get up in the morning.  They said fatique would continue for a few months.  But all in all I'm glad for the choice I picked.

The physicist who performed the calculations was well known and trains other operators of the gamma knife machines around the world so I felt in good hands.  It will take up to 2 years for Walter, my tumor, to die.  I will have a follow up MRI in a year.  I can have that MRI in Boise and send it to Seattle to the radiologist. 

Please feel free to ask me any questions about my procedure if you are considering Gamma Knife Radiosurgery.

Thanks, Nicole