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Pre-Treatment Options / Re: Some advices
« Last post by Dawn from MN on May 26, 2022, 09:59:36 pm »
Would they let you do radiation if you wanted radiation?  Or do they suggest surgery because of the size of the tumor?  I'm new at all of this too.  Diagnosed in April and waiting for my consult. 
Pre-Treatment Options / Re: Some advices
« Last post by Girldad on May 26, 2022, 05:55:58 pm »
I have read some good things about the Michigan ear institute (I think that is what the name is). I don’t know anymore other than reading a few comments about them. One of the doctors I consulted with mentioned them as being highly respected in that area of the country. Hopefully somebody who has sought treatment there reads this and comments.

Definitely do the consult with UCSD and the house clinic. They are high volume clinics and can give you some good direction about where you should go from here. Good luck with your journey.
Post-Treatment / Re: Suggestions?
« Last post by alabamajane on May 26, 2022, 05:53:29 pm »
Sorry you are having such problems after surgery. I had translab surgery with facial nerve involvement in 2011. I also had the 12/7 nerve surgery because my facial nerve was severed. This has helped me get movement and tone back in my face.
I have a BAHA hearing device to help with the deafness.
Haven’t found much relief from constant balance issue,,,

I too have some synkinesis problems,, I’d say mild pulling and eye not closing correctly.
I would highly recommend therapeutic Botox. I have it done every 3 months ( as that is what insurance allows) and it has helped me immensely. It relaxes my pulling and helps my eye close better. It is just my suggestion,,, it may not be something you would like to do. Talk to a doctor.
I hope you find some relief very soon !! These issues can  be very depressing !
Pre-Treatment Options / Re: Some advices
« Last post by Greece Lover on May 26, 2022, 09:21:51 am »
Sera: sorry to hear about your diagnosis and measured tumor growth.  I think the most important thing is to find a place that handles a lot of acoustic neuroma cases.  In Michigan I'm not sure where that would be.  there are very famous places in California, the house clinic for example, that will give you a free consultation via the mail,, which could work well as a second opinion.
The other question is what type of surgical approach they would do, and the impact that would have on hear and other outcomes.  (There are three basic types of surgery). 

good luck!
For those in the 'watch and wait' status / Re: Follow up MRIs
« Last post by donjehle on May 26, 2022, 08:11:09 am »
I'm glad to hear that UCSD can order the followup MRI for you where you had it done before and that your insurance covers it!  With all the anxiety of having an AN, you don't needed added stress, Moselle.  Thanks for sharing that!
Post-Treatment / Re: Contemplating BAHA
« Last post by donjehle on May 26, 2022, 08:06:35 am »
After yours is activated next month, please post again, Girldad, and let us know how your experience is with it.  I will be anxious to know how it is for you!
Post-Treatment / Re: Contemplating BAHA
« Last post by Girldad on May 25, 2022, 10:15:25 pm »
I had my BAHA implanted at the same time as my translab surgery, so I cannot comment on the procedure. I am also only 2 months out from surgery, so my processor is not activated yet. My appointment to activate my processor is mid June, so I can give you some feedback then. The abutment has healed well for me and not caused any problems so far.

If you search BAHA on this forum you can read many peoples accounts of their BAHA experience. Some good and some bad. I did this before I decided to get one. My ENT keeps telling me that they are amazing. I can’t wait to get mine activated.  Good luck gathering your info. Hopefully some more people comment.
Pre-Treatment Options / Some advices
« Last post by sera on May 25, 2022, 08:28:25 pm »
Hi Everyone,
I live in Michigan. My tinnitus started abut 10 months ago. After hearing test
They found moderate hearing lost. After first MRI, I diagnosed with vestibular
schwannoma 6 months ago. 2.2x1.5cmx1.1cm. I had my second MRI this week
and slightly bigger than first (about 1mm)

I’m 59 years old and I was hoping watch and wait status, but My Doctor suggest
surgery He saysIt is better do now then wait.

It is hard to decide, and I didn’t take second opinion yet.
Please suggestions about doctor- surgeon and hospital advices.
Thanks a lot.
For those in the 'watch and wait' status / Re: Follow up MRIs
« Last post by Moselle on May 25, 2022, 05:30:56 pm »
Thanks for the uplifting encouragement!  I don’t have a PCP since I moved and changed insurance.  I signed up at the VA recently and have a dr there but this area doesn’t deal with these tumors.   The  good news is I found out UC San Diego can order the follow up MRIs at the place I originally had my first MRI.  My insurance covered it last time.  And yes, I am much more comfortable talking to a dr that sees these tumors regularly in their specialty. 

For those in the 'watch and wait' status / Re: Follow up MRIs
« Last post by donjehle on May 25, 2022, 03:16:46 pm »
Hi Moselle!  And thanks for posting!

It is wonderful that your ENT does not want to handle your AN.  It is much better to have someone who deals with Acoustic Neuromas all the time than someone who doesn't see them very often.  My ENT told me that in his very busy practice of seeing thousands of people every year, he may only see one or two AN.  So, it is much better for those with expertise to handle this for you.

Also, I'm glad you have a telehealth appointment with UCSD.  They are some of the best AN experts in the country.  They know what they are doing there.  Since acoustic neuromas grow very slowly, the recommendation is usually 6 months to a year for a second MRI.  So, since you had your first one in April, having your second one in October makes sense.

Where did you have your initial MRI done?  Would it be convenient for you to have it done at the same place?  You can then have the MRI images sent to UCSD or whatever medical center you want.  My primary care physician ordered my MRI to be done locally for me, and then I had the images sent to neurosurgeons at Emory University and at the Mayo Clinic.  My PCP was glad to order the MRI and then have the images sent out.  That was she would receive reports from the specialists and be aware of what they were saying about her patient.  So, hopefully, you won't have to travel too far to get the new MRI in October.

Best wishes on your AN journey!
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