Author Topic: What Should I be doing Now?  (Read 1931 times)

LADON

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What Should I be doing Now?
« on: April 04, 2022, 12:01:35 pm »
Hi Contributors. 

I'm new to this problem, so any suggestions will be appreciated.  My first question is, what should I be doing now before the follow up MRI is taken in July 2022?  I've half-halfheartedly sent emails to The House Clink LA, UCLA, UCSD, and Keck but have not moved on any of them in-part because of dread and secondarily I haven't figured out how to choose the best providers and get it paid for under an HMO or PPO Plan.

Here is my situation:  Diagnosed with AN January 2022 with dimensions of 21mm long and maximal craniocaudal of 8mm. 

 Appreciated it. :)

Greece Lover

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Re: What Should I be doing Now?
« Reply #1 on: April 05, 2022, 07:32:15 am »
Unfortunately there's not a lot you can do. I'm sure you can find hypothetical remedies on here, but none are scientifically proven.  See what the next MRI says and take it from there.  But, you're right to find which high-volume AN center can fit under your insurance.  That way if you want to go ahead with surgery or other treatment, you'd be ready to go.  good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

LADON

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Re: What Should I be doing Now?
« Reply #2 on: April 05, 2022, 09:16:35 am »
Greece Lover,

Thanks for the feedback.  Did you go with your provider under HMO/PPO for the procedure or select another team and work out the financing issues separately?  I ask because my HMO's ENT-Neuro Surgery Center have an OK track record, but not an exceptional one.  I assume, House Clinic, UCLA, UCSD, and Keck have much more experienced teams, given this is one of their specialties.

Appreciate it.

donjehle

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Re: What Should I be doing Now?
« Reply #3 on: April 05, 2022, 05:26:09 pm »
Thank you, LADON, for posting on the forums, and welcome to the Club!

Greece Lover is wise and is a great resource for you.  You are also wise in touching base with some of the top AN neurosurgery centers out west.  As Greece Lover said, find out which place works well with your insurance.  Your particular HMO/PPO may limit you somewhat, but I would not be happy with a place that is just okay and not exceptional.  After all, you are talking about neurosurgeons who could be doing surgery on your brain. You don't want just anybody who is okay doing that.

Some (although not everyone) on the forums have had success making appeals to their insurance carriers to go to the place they wanted for treatment.  I can't promise you that it would work since insurance companies are all different, but it might be worth a try once you determine which surgery center you would prefer.

Thanks again for posting your experience, and best wishes on your journey!  Please let us know how it goes.
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Greece Lover

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Re: What Should I be doing Now?
« Reply #4 on: April 06, 2022, 07:40:45 am »
I was very fortunate that I didn't have any issue getting all my healthcare covered at the University of Iowa.  I'm fortunate to have a high volume AN center close and in my network and also to have very good insurance.  I know that's not the case for everybody.

I would hope that your insurance would cover out of network care, but maybe at an increased out of pocket cost to you?
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

Buddynz

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Re: What Should I be doing Now?
« Reply #5 on: May 06, 2022, 03:37:16 am »
Hi, your AN is moderate in size so I guess you have to make a decision soon especially if you wish to go use radiation as opposed to surgery as they say here in New Zealand 25mm is the max size for radiation options.

As far as alternative treatments go if you decide to watch and wait for another 6 months (I wouldn't leave it a year for another MRI at 21mm just in case) there are a couple of things you can try with no harm done. If you don't already take it Low Dose Aspirin has worked in some trials to reduce AN growth and is reasonably safe and cheap to buy. Some trials found no reduction and others say it helped so worth a shot in my opinion. The other low risk option is Broccoli powder. This has also been shown in some trials to reduce AN size and growth and again is a safe and cheap option.
Not the tastiest of stuff but you can mix it into a smoothy at Jamba Juice and you probably wont notice it.

Cheers
from NZ

Allan

NOTE FROM FORUM MODERATORS:  Any advice given is the sole thought of the person that's posting and is not to be taken as confirmed medical advice and all patients should confirm with their doctors for medical advice for their unique situations.
« Last Edit: May 06, 2022, 12:46:06 pm by MarlaB »

donjehle

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Re: What Should I be doing Now?
« Reply #6 on: May 07, 2022, 11:54:27 am »
Hey Allan!

It was good to see another post by you!  But I am curious whatever happened to you?  Did you end up undergoing the linac procedure or did you spend your hard-earned money on the GK?  What was your procedure like?  How has your recovery been?  I would love to hear an update on your journey!

Best wishes!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


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