Author Topic: Just diagnosed and feeling lost on next steps  (Read 1024 times)

ralfo

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Just diagnosed and feeling lost on next steps
« on: February 26, 2019, 09:33:03 pm »
Hi All.....first post and can really use some advise from those that have been through this as what I've been reading and hearing is extremely overwhelming.

Here is my story:
I've been seeing an ENT for breathing issues and had septoplasty this past Dec. Once I completed my last follow-up I asked to make an appt with their audiologist to get my hearing baseline as I can tell my hearing has been poor on my left side.  So I take the test and it clearly shows 50-60% loss.  The Dr stated that due to protocol, he would order me an MRI as the loss is only on one side and given my age.  So I get the test and it comes back with a 3x5x3 AN in my RIGHT side.

I have no hearing loss on the right and the only symptom I think I have is vertigo from time to time while working on something bending over or looking up and underneath (as if working on a car or something), but I've always brushed it off.  Probably been happening last 5yrs.  I went to one of the top Neurosurgeons here in NJ to review the MRI and discuss it.  He went through the radiosurgery options with me and said it would be good option given its size and also gave me the standard physician option of wait and see.

So now I don't know what to do.  I have a left ear working at 40% as it is and understand that if I have the radiosurgury performed now while this thing is small, the procedure will kill the AN but maybe some of my hearing in the process.  The decision would be easier if it were on the other side.  I also understand that the symptoms will get worse before it gets better as well and I have no symptoms now.

Are the chances of hearing loss high with radiosurgury? And if so, is it loss that can be remediated with a hearing aid if I chose to use one as I got older.  It seems this is a total gamble either way.  If I just ignore it right now and go for MRI's to keep getting checked, it can get bigger either slow or fast and get to a point where its harder to manage.

I haven't talked to any family yet about it other than my wife knowing.  Any opinions from the group would be appreciated and thank you for listening.

Appreciate it
« Last Edit: February 26, 2019, 09:43:23 pm by ralfo »

Greece Lover

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Re: Just diagnosed and feeling lost on next steps
« Reply #1 on: February 27, 2019, 11:40:50 am »
Welcome to the club, and sorry you had to join! One of the hard things about these tumors is that there are choices, and no choice is ever perfect.  The kind of percentages that you seek should be available from your doctors.  Is your tumor 3x5 cm?  If so, then I don't necessarily know that that falls into the small category, but I'm not sure.  Age is also a big factor in decision making.  My understanding is that it is difficult to predict how and how much the tumors will grow, if at all. 
The advice here can be helpful, but it is mostly anecdotal. For the percentages of people in a similar situation to yours, I would rely on your professional doctors and/or surgeon.   The good thing about these tumors is that they grow slowly, so its not an emergency, and you have time to make a decision.

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 not tumor.  No MRI for four more years!

ralfo

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Re: Just diagnosed and feeling lost on next steps
« Reply #2 on: February 27, 2019, 12:38:10 pm »
Thank you for the reply.  I should have clarified...the size was 3x5mm so I believe what from what Ive been told is small for now.  I do have another appt in a few weeks to discuss further with another Otolaryngologist whom I was referred to which specializes in AN. 

My mind is sure racing a mind a minute about this....but I need just gather all I can to make a educated decision...be it now or in the future.

SP

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Re: Just diagnosed and feeling lost on next steps
« Reply #3 on: February 27, 2019, 02:00:33 pm »
Hi ralfo ; yes for sure getting an AN diagnosis does indeed set the mind off racing. It's important to remember that this tumor is typically slow growing (1-2mm / year) ; so you have some time to carefully consider the options available to you. Also people react differently to treatments. With radiation it is dependent on size and dose; in my case, yes my hearing did decline on the AN side after CyberKnife treatment and yes I now have a hearing aid that definitely helps. I too think its a good idea to discuss all your options with your specialists . It's a really stressful and overwhelming time, but you have time to consider and select the option that is best for you. take good care.

Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

ANSydney

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Re: Just diagnosed and feeling lost on next steps
« Reply #4 on: February 27, 2019, 03:49:38 pm »
At 3x5 mm you have time. Get a series of MRIs and see if it is still growing. Intervention (surgery or radiosurgery) will accelerate your hearing loss.

ralfo

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Re: Just diagnosed and feeling lost on next steps
« Reply #5 on: February 27, 2019, 08:53:15 pm »
Thank you

juliawilson

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Re: Just diagnosed and feeling lost on next steps
« Reply #6 on: March 01, 2019, 02:03:56 pm »
Yes, you will lose hearing with radiation, although it might be gradual. I had CK done two years ago, and I have seen a gradual decline in hearing in my AN ear. I got a hearing aid last year and it does help substantially. At least for now.

I agree with other posters: You have time. Whatever you ultimately decide, the decision should be made with all the facts so that you are confident you are taking the right path for you.

Make sure you are in the hands of someone who is very experienced with AN. Experience counts for a lot!  If you can find somebody who does both surgery and radiation, you can get an unbiased opinion on what might be the best option.

You will get through this. Keep us posted.

janerioux

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Re: Just diagnosed and feeling lost on next steps
« Reply #7 on: March 18, 2019, 09:10:29 am »
This is the place to be!  Educate yourself, ANA offers so much information, webinars, articles.  Find a doctor/team you trust and feel comfortable with and together you will make the best decision for you.  Best of luck.
Jane

MichelleW

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Re: Just diagnosed and feeling lost on next steps
« Reply #8 on: March 22, 2019, 11:24:43 am »
Hi Ralfo,

I was just diagnosed last September. MY AN is 5mm and I have the same symptoms as you and totally understand how you feel.  My dr did an MRI 6 months later which showed it hasn't grown at all. My dr suggested that I watch and wait and get an MRI done each year to watch for growth. My hearing is still ok in my AN ear so I'd rather enjoy the bit of hearing I have while I can. This is a great place to research and ask questions! You are not alone in this:-)

notsolucky

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Re: Just diagnosed and feeling lost on next steps
« Reply #9 on: April 24, 2019, 06:14:11 am »
Hey there,

I was diagnosed with an acoustic double your size when I was 17. I am now 20 and 6 months post op. My biggest advice would be to watch and wait, do your regular MRIs as those tumors can shrink and stop growing overtime. My neurosurgeon (a professor with over 50 years experience) advised me strongly against radiosurgery due to my age and its chances of recurrence.
In my case my acoustic kept growing and destroyed my hearing therefore I had to have a surgery. In my opinion (and my doctors), surgery or intervention for these tumors should be your last resort. If you intervene when it is still very small you lose your hearing in that moment. If you don't intervene until you actually need to you still have a bit of hearing left.
Stay hopeful and don't worry about it too much, once it is done you will look back and laugh why were you stressing. Let tomorrow worry about itself. :)

Greece Lover

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Re: Just diagnosed and feeling lost on next steps
« Reply #10 on: April 26, 2019, 09:38:14 am »
I just want to respond to the most recent post from Notsolucky.  Technically, he is incorrect in saying that surgical intervention means you lose your hearing automatically.  Depending on size and location, some surgeries can save hearing.  There's always  chance to lose hearing with surgery, but some surgical decisions are made in an attempt to save it.
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 not tumor.  No MRI for four more years!

Ken35051

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Re: Just diagnosed and feeling lost on next steps
« Reply #11 on: April 27, 2019, 07:21:06 pm »
I was diagnosed with an AN about 6 years ago. At that time, my tumor was 5 mm by 4mm. I just had my most recent MRI last week and it is now at 9.2 mm by 4 mm and has shown no obvious growth since my previous MRI. I would prefer radiosurgery and my doctor advised me that the purpose of radiosurgery is to stop the growth, not remove it. He said that if it's not growing, there's no sense in treating it with radiosurgery. So, I am still on watch and wait.

Good Luck to you and let's hope that your next MRI shows no growth.
Ken

Ellen K

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Re: Just diagnosed and feeling lost on next steps
« Reply #12 on: April 28, 2019, 12:06:10 pm »
Hi Ralfo,
I know you feel stressed and frightened  - we've all been there. A few thoughts:
1. Small tumors have been found to grow more slowly than those that are large when found. However,  symptoms are not necessarily worse with bigger tumors. I'm a great example of that. My AN was only 2mm when found in 2010, and is now only 3mm, 9 years later! Unfortunately I do have a lot of dizziness and vertigo issues, but my hearing remains fine.
2. There is evidence that some drugs can slow growth. If your 6 month MRI shows growth,  you might ask your doctor about them (baby aspirin and another - can't recall the name).
3. The suggestion of vestibular therapy is a great idea.
4. If you feel really stressed or need help coping, seeing a therapist who specializes in chronic illnesses can also help.
Hang in there!
Ellen
3mm diagnosed December 2010 when I was 45. Very unusual presentation - severe vertigo, then dizziness daily, now just occasional dizziness, but it can be debilitating some days. No hearing loss! But yes to ear fullness and wonky brain. Watch and wait.