Author Topic: Is it time for radiology  (Read 1037 times)

bjhk

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Is it time for radiology
« on: December 06, 2020, 12:14:17 pm »
I was diagnosed 18 months ago following a hearing test at ENT office and an MRI. Size was .68
Right ear. Hearing test not good in right ear.

She sent me to an ENT specialist in another town. He suggested watch and wait and surgery was Not an option due to my age and that radiology  was" not without side effects'

Followup MRI showed  size .8

then I had an appointment with a radiology oncologist who said I needed radiology. 

I chose to talk to my neurologist and my primary care Doctor in February;  Both said watch and wait.

3 weeks ago another hearing test which showed no further deterioration and ENT wanted me to get hearing aids . I chose to wait until after the MRI

Last week I had the MRI; the tumor  now 1.5 and my ENT says it is time for radiology.

My primary care Dr. said proceed, that sometimes it can metastasize which really upset me.

 I have not yet heard from my neurologist who will be able to see the MRI image, not just the report.

Thus I think his opinion is extremely important

Input from members will be appreciated, and I am delighted I found ANA









She sent me to a specialist in another

MarlaB

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Re: Is it time for radiology
« Reply #1 on: December 06, 2020, 02:35:43 pm »
I have not seen any reports that AN radiation treatments have metastasized. Does your PCP treat many ANs?

Can they provide scientific documentation?

Trust the experienced AN provider who is directly treating you....

bfoley

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Re: Is it time for radiology
« Reply #2 on: December 07, 2020, 06:05:29 am »
You said you were told "radiology is not without side effects", however, watch and wait is also not without side effects.

You said you were told no surgery due to your age.  From all my research here - all recommend several consults with different specialists.  Also, consider if you can consult with the big specialists virtually.  I don't know where you are located, and there may not be a lot of choices.  I am fortunate enough to live in MN, consulted the U of MN and the Mayo in Rochester.  I chose radiation at Mayo with Dr. Link and team.  When consulting, each physician said I was a candidate for their specialty.  This is common. 

You have not talked about symptoms other than hearing loss.  Hopefully this is all you are experiencing.  Remember that it can affect other things.  Yours sounds like it is growing fast, which as the same with mine.  Due to the other symptoms, I chose to treat quickly.  Hearing loss is the least of worries for me, as I was quickly totally deaf on the affected side.  I have a hearing "aid" which is just a transmitter that pipes sound into the good ear.  I can hear more things, but cannot tell direction.

I wish you luck on your journey.  There is a lot of varied experience here.  I would recommend reading through the various options, asking for provider recommendations in your area, etc.  Take care and let us know how you are doing!   

bjhk

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Re: Is it time for radiology
« Reply #3 on: December 07, 2020, 09:59:57 am »
Thanks so much for your input and support.

You are correct, hearing and minimal imbalance are my only symptoms

What do you mean you cannot tell direction?

It seems you have had many side effects, tinnitus , nausea, vertigo Following the GK,
Do you have a problem driving a car?

We have the Cleveland Clinic  town; the radiology oncologist moved here from CA 2 years ago. He worked at a famous large facility in Los Angeles.(sorry, I don't remember the name) Last year he said had a 99% success rate with AN treatment, but he was evasive about the side effects,, "every person is different"

I hope to hear from my neurologist today.



bfoley

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Re: Is it time for radiology
« Reply #4 on: December 08, 2020, 05:58:11 am »
bjhk-

I cannot tell what direction the sound is coming from, as it all sounds like it is coming from the left (working) ear.

I had all those symptoms before the GK too.  The GK did not cause them, the tumor did.  I have worked on balance exercises since before GK and continue with them daily.  I also walk between 8,000 and 10,000 steps a day.

I am able to drive a car, turning the head quickly can cause imbalance, but I have the steering wheel to hold on to should that happen, and I'm in a seated position.  Its only happened a couple of times.  Never had vertigo while driving (did have a passenger, I think because you aren't sensing what the car is doing).

It sounds like you are in OH (or close to it).  Is there a local AN chapter you can connect with to discuss where folks have gone locally for treatment?  Also, there is a list of questions to take to your visit(s).  Hopefully you found that.  Those were helpful. 

Its a super personal decision, whatever treatment method (or no treatment) you decide on is right for you.

I'm 56.  I decided that I did not want my head opened up if I did not have to, so GK seemed correct.  If my tumor begins to grow again, I would likely go for the surgery at Mayo.  I don't foresee that occurring, but there is always a chance.  And this is what I have decided for myself in my situation. 

Remember that most folks post who are having an issue, and the ones who were treated successfully normally do not return to this site.  I check at least a few times a week in case anyone has any hints on balance.  I got the hint to take ginger capsules from here in the balance portion of the boards.

Wishing you peace on this journey - and keep us informed as you progress.


 

bjhk

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Re: Is it time for radiology
« Reply #5 on: December 09, 2020, 02:36:21 pm »
Again, thanks for your help
We are in Florida

My ENT's nurse just called , she is adamant that I have the GK; as size has doubled from .8 mm to 1.5mm

My neurologist says it is still very small=  too small for surgery, but he gave no opinion on the radiology.

Option to see the ENT specialist in another city.  I saw him 18 months ago and he said watch and wait . This was After the Radiology oncologist wanted to do GK

With covid I am really leery.  I am in my 70s

The ENT's audiology doctor is going to call me to discuss hearing aid; resulting from test in November. Strange, but my hearing in the AN ear is the same as last hearing test in January!

But as per the Oncologist if I do the GK my hearing will change; he said wait, but I do need it now.

Do you know how to subscribe to this community?  I thought I did it when I enrolled, but I haven't been getting any emails or notifications.


MarlaB

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Re: Is it time for radiology
« Reply #6 on: December 09, 2020, 05:22:08 pm »
Hi there! did you sign up with ANA and this forum?

bjhk

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Re: Is it time for radiology
« Reply #7 on: December 10, 2020, 10:24:40 am »
I did not sign up for ANA,  just the community.
It would be helpful if notifications of new posts were available
I did check the box 'subscribe"

thank you!

« Last Edit: December 13, 2020, 01:44:32 pm by bjhk »

bjhk

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Re: Is it time for radiology
« Reply #8 on: December 13, 2020, 01:17:43 pm »
You are an inspiration to me with all your help and I am so sorry you are having continual issues even after the GK.

My balance is not terrible, but not that great.

I tried the ginger hard candy this morning; gin gin double strength 16%; it  gave me nausea!




bfoley

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Re: Is it time for radiology
« Reply #9 on: December 14, 2020, 06:25:04 am »
I'm sorry!  Thats no good when something that should help makes it worse!  Keep on trying different things, eventually you will get to something that works for you!

 


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