Author Topic: Second Opinion  (Read 438 times)

Nic-Ruby

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Second Opinion
« on: September 06, 2018, 10:48:25 am »
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. 
Sudden Hearing Loss 5/2017, Steroids, Hearing mostly restored.
Trigenimal Neuralgia 3/18, Trileptal mgmt of pain
MRI Diagnosis 7/18
VS 10mmX6mmX4mm

notaclone13

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Re: Second Opinion
« Reply #1 on: September 09, 2018, 09:43:37 am »
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

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Re: Second Opinion
« Reply #2 on: September 09, 2018, 11:02:39 am »
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
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Sanderson

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Re: Second Opinion
« Reply #3 on: September 09, 2018, 06:54:46 pm »
Sara
Acoustic Schwannoma surgery March 28, 2018
Sutter Medical Center in Sacramento
Deaf in left ear
Facial paralysis on left side
Balance is fine thanks to walking three energetic dogs everyday and yoga twice a week!

JD808

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Re: Second Opinion
« Reply #4 on: September 11, 2018, 12:07:43 am »
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.
Diagnosed 1.5cm x .08cm x 1.1cm AN right ear 5/2018
Total hearing loss in right ear at 5/2018 and significant balance issues.
Translab surgery Friedman and Schwartz UCSD 7/18/18
80% tumor removal due to facial nerve adhesion
Balance issues solved, no facial nerve issues.

Blw

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Re: Second Opinion
« Reply #5 on: September 13, 2018, 09:58:32 am »
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.
« Last Edit: October 04, 2018, 08:37:24 pm by Blw »

Nic-Ruby

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Re: Second Opinion
« Reply #6 on: October 02, 2018, 09:47:35 am »
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.
Sudden Hearing Loss 5/2017, Steroids, Hearing mostly restored.
Trigenimal Neuralgia 3/18, Trileptal mgmt of pain
MRI Diagnosis 7/18
VS 10mmX6mmX4mm

MarlaB

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Re: Second Opinion
« Reply #7 on: October 02, 2018, 10:01:52 am »
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

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  • Jane Rioux Registered Nurse
Re: Second Opinion
« Reply #8 on: October 12, 2018, 06:04:23 pm »
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! ???
Jane