Author Topic: Some advices  (Read 519 times)

sera

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Some advices
« 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.

Greece Lover

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Re: Some advices
« Reply #1 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!
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.

Girldad

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Re: Some advices
« Reply #2 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.
Diagnosed 10/16/20 19.2mm x 14.7mm x 12.7mm
Last MRI on 4/27/21 19.2mm x 14.7mm x 13.8mm

Dawn from MN

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Re: Some advices
« Reply #3 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. 
Dawn
AN diagnosed 4-26-22  left side
1.5 cm x .9 cm x 1.0 cm

sera

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Re: Some advices
« Reply #4 on: June 06, 2022, 06:04:02 pm »
Thank you Greece Lover, Girldad and Dawn from MN for your advices and good wishes.
Sorry for late answer.
I tried to take second opinions UCSD and House Clinic, but didn’t get answer yet. I will
try again. I also try to get a appointment from Michigan Ear Institute for second opinion.

Dawn, yes they also suggest radiation if I don’t want surgery until the size of the tumor less
than 2.5 cm. My first choice was watch and wait.
Good luck all of you. Have a healthy time.

bonnieD

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Re: Some advices
« Reply #5 on: June 09, 2022, 09:39:52 pm »
Hi!  Newbie here and recently diagnosed. Given the size of my tumor which sounds like yours, my first consult with Dr. Friedman at UC San Diego was Tuesday. He said that it’s way too big to wait and surgery was the best option. I’m 45 too and he also said I’m way too young to do radiation.  I have other consults but he was very helpful with understanding what’s going on with my tumor.  I know you don’t want surgery, but it sounds like there’s more risks by not having surgery. 
Fall 2007 - Tinnitus started
June 2022 - 45 Yrs Old. Diagnosed left ear AN

2.3 x 2.2 x 1.6 cm

Symptoms:  Some numbness in left tonsil and tongue, pressure and mild headaches, more hearing loss, and dizzy spells.  Also... High MCV (enlarged red blood cells) but no cause. Anyone else?

donjehle

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Re: Some advices
« Reply #6 on: June 10, 2022, 06:41:49 am »
Thanks, bonnieD, for making your first post on the ANA Forums!

It is very wise for you to have a few consults.  Dr. Friedman at UCSD has a great reputation, but, nonetheless, it is good to seek additional opinions.  Sometimes things are not as black and white as they might seem.

One point I want to make is that everyone's acoustic neuroma journey is different, even though we share many things in common.

So, for one person, based on the size and location of their tumor and their age, surgery may be the best option.  For another person, radiation is the best option.  For a third person, monitoring the tumor and waiting is the best option.  The risks can also vary from person to person, again depending upon the tumor's size and location and the patient's age.  So, we can never say surgery is the best option for everyone or radiation is the best option for everyone or watching and waiting is the best option for everyone.  All we can do is gather the best medical advice we can from various sources and make the decision on what is best for us on our particular AN journey.

I state this, bonnieD, just because there are a lot of newly diagnosed people who come to the Forums, and they can read where someone had a certain treatment and think that because it was good for the poster that it would be good for them, too.  Maybe they read a post that surgery was the best option, so they decide to have surgery as well.  And yet, for that person, maybe their tumor was much smaller and could have been treated successfully by radiation with far fewer risks.  But they chose to have surgery and now have facial paralysis and constant headaches after their surgery.  Instead of a quick recovery, it took them several months before they could return to work.  All I am saying is that each person, weighing the risks and benefits of all the treatment options with valid input from the top specialists in the country can help each individual make the decision of what is best for them in their particular situation.

I do wish you the very best in your upcoming surgery!  Please keep us posted on how the other consults go and how you do in your surgery!  Thanks again for sharing your story!
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.  Next MRI scheduled: 7/29/22
No treatment yet.

notaclone13

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Re: Some advices
« Reply #7 on: June 10, 2022, 06:11:00 pm »
Check out Dr. Thompson at University of Michigan. He did Kelly Stafford’s  AN surgery. She’s the wife of former Detroit Lions quarterback Matthew Stafford. They could have gone anywhere, but choose U. Of M.

https://www.com/health/2019/09/04/kelly-stafford-shares-story-of-brain-tumor-diagnosis-12-hour-surgery/

mwatto

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Re: Some advices
« Reply #8 on: June 11, 2022, 02:59:49 am »
Hi mine was abt same size I had Cyberknife 3 years ago and all fine so far (MRI was in Feb this year)- not much hearing loss, no (or very very faint maybe) tinnitus and balance is ok. No complaints though I still get ea pain during night sometimes - less often lately.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

DodgeAU

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Re: Some advices
« Reply #9 on: June 24, 2022, 01:43:16 am »
Hey Sera, welcome to our club.

I went to 3 neurosurgeons before- The first two doctors had advised to go for surgery while the third advised me to go for GK (Gamma Knife). And become comfortable with the GK option and I did it :)

Mine is growing rapidly and after 3 years of watch and wait I decided it was the right time for me to get treatment.

Don't be pressured with any doctors and get as many opinions as possible. This forum is really great for information.


Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left, Severe hearing
                 loss and mild tinnitus

gbly

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Re: Some advices
« Reply #10 on: June 24, 2022, 12:57:38 pm »
Sera,
I agree with Don, every journey is different, but you are in the right place to help you make your final decision.
I have a rapid growth so WW was out of the question.  I was initially thinking surgery, but in the end I went with Proton Therapy (newest radiation) with Dr. Jaboin.  He has now moved to Oklahoma, and he is amazing! 
I know the surgeon was disappointed that I did not do surgery, but I think he wanted it for research.  but in the end I went with the 96% success rate of radiation.

I think one question to ask, is if you have to do surgery, will you still need radiation, cause they didn't get rid of all of the tumor cause how it wrapped around your facial nerve?

They probably can't answer that, so I was like "well sounds like I would need radiation so just start there." 

For me it was the better option cause of how the tumor had wrapped around my facial nerve.  I did have some synkenesis after radiation cause of how the tumor was around the fn, but in the end still don't regret.  I would have probably had even worse facial issues.

Keep us posted, but I without a doubt recommend Dr. Jaboin if you can find him.
good luck.
GB

 


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