Author Topic: Recently diagnosed and investigating options  (Read 1908 times)

Wall882

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Recently diagnosed and investigating options
« on: March 06, 2020, 01:28:00 pm »
Hi there. I am a 57 year old male in good shape and was just diagnosed with AN last week. It started when I went to my ENT 3 weeks ago after getting a sinus infection and then making a business trip via airline and my ears would not "pop" for about a week. My right ear remained clogged for ~10 days. Since I am a frequent flyer and this has never happened to me I went to the ENT. He said my ears were clear and then gave me a hearing test which showed left ear normal and right ear with poor hearing (I forget the exact hearing loss my test showed in my right ear but I think it was 60-70% hearing loss). He then ordered the MRI which I had a week ago. The MRI showed a "right internal auditory canal 8 x 4 x 3 mm schwannoma, Koos Grade 1" aka AN. My ENT then referred me to an otolaryngologist at University of Cincinnati Health (I live in Cincinnati). The surgeon I met with provided me my options; wait and see, surgery or radiotherapy. He recommended the middle fossa surgery option based on my age, health and the small size of the tumor. He explained to me the risks associated with the surgery (full hearing loss, face drooping, long recovery, etc) and also gave me literature outlining the choices we had discussed. In a few days I have another appointment to see a radiation oncologist for another opinion. I was happy to find this site and have just started to read all the different stories, so I thought I would share mine too. I am a bit anxious for my next appointment because the AN diagnosis and the surgery discussion has been a bit scary to me with this news just 1 week old.

I'm open to any advice to help me through my decision making process. Surgery vs radiation?
« Last Edit: March 07, 2020, 07:54:51 am by Wall882 »
March 3, 2020: Partial hearing loss in right ear
and 8 x 4 x 3 mm AN per MRI in right ear

judyl

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Re: Recently diagnosed and investigating options
« Reply #1 on: March 06, 2020, 07:57:44 pm »
I am 65 and was diagnosed over 2 years ago with a 1.4 cm. left-sided AN and still on observation.  Since I haven't had any significant growth, the doctor recommended waiting 2 years for a repeat MRI and hearing test.  My symptoms are a moderate left-sided hearing loss and occasional loss of balance, but it does not happen on a regular basis.  I live in the Philadelphia area.
11/2/17 MRI w/o contrast for positional vertigo-1.3 cm mass in left IAC
11/8/17 MRI with contrast - AN 1.4 cm by 0.5 cm by 0.4 cm
12/19/17 Watch and wait
5/23/18 MRI w/o contrast 1.4 cm by 0.6 cm by 0.5 cm.
11/2018 MRI with contrast  no significant growth
11/2019  MRI w/o contrast no growth

bfoley

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Re: Recently diagnosed and investigating options
« Reply #2 on: March 09, 2020, 04:12:29 am »
Greetings Wall882 - Welcome to the club no one wants to join, but all here are friendly!

First, everyone's AN is different. I was 55 at diagnosis and active.  Hearing went from 90% to no serviceable hearing in 4 months.  My AN was slightly larger than yours (but not by much). I would recommend meeting with several facilities, chose one, and then meet with specialists in both surgery and radiosurgery.  At this same time, read as much as you can about treatments and outcomes, especially research papers.  I found one that says best outcomes received at facilities which treat higher volumes of cases.  In my state, one facility I went to sees about 200 cases a year (old and new).  The other sees about 200 NEW cases or more per year.  Guess where I went!

I chose the Gamma Knife treatment, and had it in July 2019.  My next visit will be July 2020 for a follow up MRI to see what is going on.  I have a "hearing aid" which consists of a transmitter and receiver, struggle with dizziness and balance and sometimes nausea in certain situations (darkly lit places, turning head fast, bouncing while riding in a car) and tinnitus.  That being said, I still do yoga (struggle with the balance poses) and Zumba once per week. I average 8,000 to 10,000 steps per day on my fitbit.  Hiking is still something I enjoy, I did an all day tour in February in Costa Rica which involved a lot of hiking (and great scenery!)

Do your research, you will find something that makes sense for you, and makes you feel comfortable.  Best of luck on your AN journey!

ANSydney

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Re: Recently diagnosed and investigating options
« Reply #3 on: March 09, 2020, 10:26:45 pm »
Welcome to the forum Wall. I'm glad you were offered "wait and see, surgery or radiotherapy". I was offered all three and took wait and see. I think it's important to see if the tumor is still growing.

A "8 x 4 x 3 mm schwannoma" is small.

Apart from hearing loss, what are your symptoms?

The best way to keep hearing for as long as possible is to do nothing. https://www.bhtinformatie.nl/pdf/ingrijpen.pdf

chefcrsh

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Re: Recently diagnosed and investigating options
« Reply #4 on: March 10, 2020, 03:37:41 pm »
Similar grade and symptoms, had the same choices to start. The doc was quite keen on active approach (age , size, etc). Also good candidate for radiation, they too were quite keen. I originally thought W&W was the most sensible approach, but after both consults mildly suggesting it was better to take action before worse symptoms or results in future, I thought OK if there is growth on scan 2 we will try radiation (open surgery seems to me the most risky choice). There was mild growth, but also an anomaly - the tumor may not be radiatable. So we are waiting for scan 3 to see what's up. My advice, be was mentally flexible as possible, realize there is not likely ever going to be any need for emergency action these things grow slowly.
8mm tumor diagnosed VS 7/2019.
Rescanned at 9mm 12/2019 T1 Hyperintense. Rescanned 6/2020 with fat suppression new diagnosis Lipochoristoma 9mm.
On W&W indefinitely.

ANSydney

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Re: Recently diagnosed and investigating options
« Reply #5 on: March 10, 2020, 03:58:55 pm »
In the words of Dr Micheal McKenna, "“The best treatment is no treatment, if you can do it” ( https://www.anausa.org/resources/videos/support-group-video-library.)

ANSydney

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Re: Recently diagnosed and investigating options
« Reply #6 on: March 10, 2020, 04:13:34 pm »
Take a look at a post done by me 2.5 years ago. I like it! https://www.anausa.org/smf/index.php?topic=23758.msg979775598#msg979775598

Wall882

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Re: Recently diagnosed and investigating options
« Reply #7 on: April 03, 2020, 12:01:17 pm »
Thank you all for your gracious replies to my posting. The COVID-19 pandemic pulled my attention away from my AN situation over the past couple of weeks, which I guess is a good thing.

The update on my investigative journey is that I did meet with a top notch radiologist who is very experienced in treating AN. He provided me a thorough overview of treatment, and the + / - of it. I was also very fortunate to be introduced to the most senior physician at UC Health who has operated on "more than 2 thousand" AN patients and I was able to get his overview of my situation and treatment options. It was very helpful.

Bottom line after all of the discussions, and given the COVID health care situation, is that I am going to "wait and see" for ~6 months and get another MRI in the fall to see if there has been any growth.

Thanks again to everyone for chiming in on my post, your input and thoughts are very helpful and much appreciated. Everyone stay safe out there!
March 3, 2020: Partial hearing loss in right ear
and 8 x 4 x 3 mm AN per MRI in right ear

Wall882

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Re: Recently diagnosed and investigating options
« Reply #8 on: May 13, 2020, 12:01:59 pm »
Update : I am noticing more ringing in my ears. Maybe it is just because I am now aware of this as an AN symptom, but I don't think so. It seems to really be there most of the time. Still planning on another MRI in August or September to see if the tumor is growing. Thank you.
March 3, 2020: Partial hearing loss in right ear
and 8 x 4 x 3 mm AN per MRI in right ear

KeepSmiling

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Re: Recently diagnosed and investigating options
« Reply #9 on: May 27, 2020, 10:06:32 am »
You may want to research the latest treatments for Proton Therapy. We are not up to date with the most recent facts about Proton Beam, so we can't answer questions about what is available now.  My husband had Proton Radiation in 2013 at Mass General hospital and, so far, for seven years, he has had a good outcome. It seems irrefutable that he had a good treatment for his 1.5 cm vestibular schwanomma.  He is working in an industry where it is/was extremely important for him to have sharp brain functions, unencumbered by a long recovery.  He had no mental deficits of any kind. He still experiences tinnitus at times and his good ear is extremely sensitive when we go places with loud noises, so, for example, he protects that ear by wearing ear plugs at concerts. Again, you may want to look into Proton Beam radiation treatment. Good luck.
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

Freelander

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Re: Recently diagnosed and investigating options
« Reply #10 on: June 24, 2020, 06:33:58 pm »
Hi there,
Your tumor is still considered small, though the location of the AN is equally important when it comes to symptoms.   I've followed a watch and wait course for over five years, and consulted in person with a number of experts across the country.   During this time the tumor continued to grow, albeit slowly, with concomitant increases of symptoms. It has now tripled in size and intervention time is nearing.   We are all unique, so what worked for one person may not be applicable to you.  This is a great site with lots of helpful, caring, and kind people.   Keep doing your homework, ask questions, consult others until you're satisfied.  There really isn't one best way to cope with an AN, at this time.
There is an interesting group, Akouos, that is working on restoring hearing in deaf children, and some of their researchers think their methods may be transferable for medicinally treating AN.  That possibility is still a few years away, with your tumor size, you may have time to watch and wait until then.
Best wishes!

 


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