Author Topic: Newly Diagnosed  (Read 1717 times)

larue210

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Newly Diagnosed
« on: April 19, 2018, 11:01:55 am »
Hello everyone.  Looking for your advice as I was recently diagnosed with acoustic neuroma.

I am 52. 
AN is in right ear only
Noticed symptoms 2 months ago
diagnosed 3 weeks ago
tumor is 14mm  1.4 cm so considered small
I have tinnitus and still maintain hearing, although it is diminished. 
I live in Rochester Minnesota and I doctor at Mayo
Met with Dr. Driscol and Dr. Link on April 17

Was informed I have three options, Gamma Knife, Surgery, Wait and See
I am assuming you are familiar with the pros and cons of each

Gamma Knife for my situation seems to be the less desirable. 

Most friends and family think waiting is the best option.  Doctors felt that even in six months if tumor grew, it could still be fully removed. Waiting could result in further growth, decreased hearing but could also show that tumor is not growing and no surgery is needed in 6 months.  Etc...

Surgery, while no small matter, including recovery, provides 95%-100% complete removal and a greater probability of retaining some hearing.  Would mean giving up summer activities, especially boating/water-skiing which is my primary hobby. 

I am currently on the fence.
Thoughts?

Thank you. 
Mark- Rochester MN
Diagnosed- March 2018
Removed at Mayo- Oct 2018 (Retrosigmoid)
Dr Link & Dr. Driscoll

Feel free to email with questions.  How can I help?

mac84

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Re: Newly Diagnosed
« Reply #1 on: April 20, 2018, 08:30:53 am »
Larue, I'm the same age you are but am 4 years into the Watch and Wait. My AN is also 1.4cm and has not grown since it was diagnosed.

I have an MRI each year and manage my hearing loss and tinnitus without much issue. I run 15-25 miles each week and also mountain bike.

I guess like anything else I've really gotten used to the AN over these 4 years and I'll simply continue the W/W as long as I can.

Hang in there!
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

larue210

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Re: Newly Diagnosed
« Reply #2 on: April 20, 2018, 10:45:34 am »
Great news.  Rejoicing with and for you.  I am still on the fence regarding surgery and watching and waiting.  It is rather weird to be honest.  Waiting seems the most logical but there is a noticeable desire to take the surgical path.  Not sure why.  Thanks for your reply. 
Mark- Rochester MN
Diagnosed- March 2018
Removed at Mayo- Oct 2018 (Retrosigmoid)
Dr Link & Dr. Driscoll

Feel free to email with questions.  How can I help?

Matthew

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Re: Newly Diagnosed
« Reply #3 on: April 22, 2018, 03:49:42 pm »
Hi Larue,
My name is Matt. I had a R 2.0cm AN removed at Mayo Clinic this past October. Like you, I also live in Rochester. For starters, you can be confident that no matter which treatment you opt for- you are in very skilled and diligent hands. Please check your messages... I will send you a private message with more info.
-Matt
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

Greece Lover

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Re: Newly Diagnosed
« Reply #4 on: April 23, 2018, 09:36:26 am »
one of the weird thing about these tumors is that most of us have "options."  I opted for surgery and am glad I did; sounds like a similar situation to yours.  Mayo has a good reputation for these things. 

I think you'll be able to waterski after surgery.  Not right away, of course! But eventually. 
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!

rmkelly

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Re: Newly Diagnosed
« Reply #5 on: April 29, 2018, 08:17:54 am »
As I read your posts I see some sense of hope. I was diagnosed on Friday April 28, 2018 with a 1 cm AN in my left ear.  I am totally shocked.  I went diving last December in Hawaii and couldn't clear my ears as I was going down.  After I finished I noticed my ear was feeling odd.  Finally in early April I went to an ENT.  He initially told me I had caught a virus which attached my inner ear which is why I lost my hearing (~35%)  He did an MRI as a precaution.  When I returned for the follow up the doctor told me I have an AN.  Now I'm looking for a surgeon.  We live in Indianapolis so I am curious what your experience has been at MAYO. 

I am 50, I have two young children  and a fabulous husband who is at my side.  I don't want this to impact our life too much so any encouragement would be really helpful. I am so scared and have no idea what to expect as I take this journey.  Please  share your experience at MAYO and how you have coped with AN from an emotional perspective.

Bob53

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Re: Newly Diagnosed
« Reply #6 on: April 29, 2018, 05:31:26 pm »
I had a successful translabyrinthine surgery done by Dr. Driscoll on 10/5/17 at Mayo Clinic on a 1 cm AN. Very satisfied with the Doctors, Nurses, and Hospital. It was a difficult decision since I could have done Watch & Wait, or radiation. The reason I decided to do surgery is I wanted it out and I wasn't fond of doing the MRI thing for the rest of my life. I'm 65 and have returned to work and do most everything that I did before surgery including lots of bike riding, although I really miss my hearing on the left side. I live in Wisconsin, it was worth the 5.5 hour drive.

I wish you the best in making your decision.

ColleenS

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Re: Newly Diagnosed
« Reply #7 on: April 30, 2018, 08:28:16 am »
I am just a couple days shy of my 1 year anniversary for my translab surgery. I wanted to point out to you that retaining your hearing is not a guarantee whether you go radiation or surgery. There are several types of surgery and the translab was the safest for me since my AN was attached to my brain stem. The translab method always takes out your hearing - but I only had 20% left anyway. So there are options - do the research and read all you can on here. I did that for months until I felt pretty educated by the time I went for my surgery. Every case is different but generally speaking you will find SO much useful information here and support.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

judyl

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Re: Newly Diagnosed
« Reply #8 on: May 01, 2018, 07:48:59 pm »
Hi Larue,

My AN is on the left side and also 1.4 cm at first MRI and I am on "watch and wait."  I have some hearing loss but no tinnitus. I am scheduled to have another later this month.
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.

PurrfectHappiness

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Re: Newly Diagnosed
« Reply #9 on: June 28, 2018, 09:56:03 am »
Hi, Larue210:

I am a 51 year old Newbie (diagnosed 3 mos ago/9x5mm AN left ear). 

I find this diagnosis and research process overwhelming, but the ANA and fellow members have been an incredible resource for moral support, comfort, and valuable information.

I have recently had numerous Dr consultations and tests performed to help make the best possible decision in treatment.  Initially, my gut reaction was to remove it surgically as soon as possible.  However, after extensive research, consultations, and learning about other fellow AN patient’s journies, I have decided to “Watch and Wait”. 

I am blessed to have met another local AN patient who is also in “W&W” mode and has been for 12 years now.  I realize every individual case is different, but there are a great deal of successful “W&W” cases.  I find this very inspiring.

While I’m in “W&W” mode, I have decided to begin daily baby aspirin therapy (after discussing with my primary care Dr).  I will include two very enlightening and informative articles in this post for your perusal.  Both mention that aspirin therapy may slow and even halt AN growth.   :)

As far as symptoms, I am coping with tinnitus, off balanceness, and fatigue. It’s a bit frustrating, but I’m continuing to exercise/stay active and remain positive and strong. 

Whatever decision you make, the support in this group is amazing and will certainly assist you in coping with this new journey in your life.

~ Kind Regards to all.

https://www.tinnitusformula.com/library/aspirin-slows-acoustic-neuroma-growth/

https://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma/treatment.html