Author Topic: Update on my AN  (Read 1184 times)

sree

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Update on my AN
« on: May 07, 2018, 03:02:43 pm »
hi everyone,
Update on my AN
I had been on Wait & watch for almost 5 yrs now.
In my recent follow up MRI we found out that the AN has grown 2.2mm Overall.
over the 5 yrs I have lost all the hearing in right ear, had couple of worst vertigo episodes, migrains.
My neurosurgen recommending Stereotactic Radio surgery
I am going to see the radiosurgen after two weeks.
so what is this stereotactic radio surgery?
what to ask the doctor when I meet him.
please help me with any useful insights.
Thanks


Sree
AN in right ear (6.8mmx4.2mm 5yrs ago)
No useful hearing in right ear
44yrs
« Last Edit: May 07, 2018, 03:05:30 pm by sree »

ANSydney

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Re: Update on my AN
« Reply #1 on: May 07, 2018, 04:56:45 pm »
stereotactic radio surgery is just radiosurgery. Typical examples are Gamma Knife and Cyberknife.

After 5 years and a small tumor, have you thought of waiting another years and see the outcome?

notaclone13

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Re: Update on my AN
« Reply #2 on: May 07, 2018, 05:14:56 pm »
Hi Spree,
If your tumor only grew 2.2 mm in 5 years, it is growing slower than the average rate of 1-2 mm per year.  It would appears you are a good candidate for Cyberknife and one of the best places in the country for that treatment is Dr. Chang at Stanford.  Is that a possibility for you?

sree

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Re: Update on my AN
« Reply #3 on: May 07, 2018, 05:59:02 pm »
Thank you for your responses.
We live in Bay area and stanford is near by.
But we have Kaiser Insurance
I am not sure if kaiser would allow us to go outside.
I have appointment on this friday with the radiosurgeon
will see what he is going to suggest

gary.s

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Re: Update on my AN
« Reply #4 on: May 08, 2018, 10:40:13 am »
Decision making is very personal when dealing with acoustic neuromas. So much of it depends on the growth rate of your tumor, your symptoms, how you are dealing with it emotionally, and the impact on your personal and social life. There are a lot of factors to deal with when making a choice whether to Watch and Wait, have surgery, or radiation. If your tumor is very slow growing, which the measurements seem to indicate, I agree with ANSydney, talk to your doctor about waiting and taking another MRI in six or twelve months. But do listen to your doctor.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

sree

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Re: Update on my AN
« Reply #5 on: May 08, 2018, 06:00:09 pm »
Thank you
I was not thinking about radio surgery until my recent MRI.  My doctor suggested to go for it saying their is some growth. I am meeting with another doctor next week to ask all the questions I have to decide whether to go for surgery or WW.
The only reason I am leaning towards surgery is the fear of vertigo I have now. My tinnitus is also loud now.
My previous doctor (retired https://www.anausa.org/smf/Smileys/classic/rolleyes.gif ) said there is a chance of getting more vertigo nd tinnitus after radio surgery.
I am aware of this but still wants to take a chance
I only had two worst vertigo episodes so far which included vomiting( constant for 2 days) and off balance for almost 2 weeks.
the idea of the same might happen again is what scares me a lot.
I stopped travelling alone, not driving on freeways, after a party or a movie  I check in the morning before coming off the bed that my head is not spinning.
This fear is what driving me crazy, so I thought of looking for options rather than waiting year after year. Again I have all these second thoughts about radiation and after effects.
I am really confused. Even if my doctor says ok for surgery I want to wait for 3,4 months to make sure that I am ready for this.
Thanks to all of you, your valuable inputs.
These coversations are what gives us comfort
thanks again
apologies for long message.

sree

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Re: Update on my AN
« Reply #6 on: May 11, 2018, 10:24:39 pm »
Hi all
today I met the radio surgeon @ Sacramento Kaiser.
he suggested to go for radio surgery. He does it with Novalis, its going to be single session.
The tumor was unchanged for 4 years and just in this year it grew 2mm.
He was saying its growing towards the brain and if we wait few years and then do the radiation might
touch brain tissue also and might give more side effects.
Now the tumor is smaller in size about 9.7mm x 4.0 mm, so the side effects will be minimal.
If I decided to go for it I am thinking of doing it sometime in september.
Please let me know anyone has exprience with Novalis or sacramento facility.
Doctor is Dr. Pappas
Thanks

notaclone13

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Re: Update on my AN
« Reply #7 on: May 12, 2018, 07:40:19 am »
Spree, before you proceed, have you checked to see if you can possibly have the procedure done at Stanford? Did you ask your doctor how many ANs he has treated by radiosurgery? Because acoustic neuromas are rare disorders, and experience in treating them by surgery or radiation is important. I would urge you to see if you can get permission for treatment at Stanford with Dr. Chang. I don’t know if Dr. Chang does free consultations, (perhaps someone on the forum can comment) but if he does you should contact his office. Perhaps they could help you navigate the insurance system to gain permission. I understand your concern with vertigo, I have had this issue as well and it is terrifying for sure. Why not contact Dr. Chang’s office, explain your situation and see if they can help you with the insurance issue.

sree

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Re: Update on my AN
« Reply #8 on: May 12, 2018, 12:55:01 pm »
Thank you notaclone13
I am not sure Kaiser would like to go me outside.
But I am going to contact Dr.Chang for sure to see what they say.
And also I am going to ask my neuro to refer me to another radio surgeon
who does CK. I know that Kaiser in San Francisco has CK.
The radio surgeon I met said he has overall 25 yrs experience with radio surgery
treating all kinds of tumors and he does atleast 4 in a week.
And he said he had done many AN's as well.
I am not rushing yet with the decision as I am planning it anyway in september.
Before that I will try to get Dr. Chang and also CK in Kaiser.

You also mentioned about vertigo. Is it better now ?
did you had surgery? Sorry to ask you many questions, I am trying to know as much as I can before making any decision.
Thanks