Author Topic: 3mm-4mm “wait and see” - now deciding on surgery  (Read 921 times)

TheEsquire

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3mm-4mm “wait and see” - now deciding on surgery
« on: July 16, 2023, 03:36:20 pm »
Hi! New to posting - at what point can I push back on the idea of wait and see. I am having balance issues and mild hearing loss. The idea of waiting another 6mo-year is not feasible. Any advice on advocating for surgery? Thanks!

donjehle

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Re: 3mm-4mm “wait and see” - now deciding on surgery
« Reply #1 on: July 28, 2023, 06:08:04 pm »
Welcome to TheEsquire to the Forums and thank you for making your first post!

Like you, I didn't want to wait 6 months.  I wanted my acoustic neuroma treated right away.  And when my neurosurgeon told me I needed to wait six months for a second MRI, I sought a second opinion.

The specialists at the Mayo Clinic told me that when the tumor is only 3-4mm, I could afford to wait six months for a second MRI so they could determine the rate of growth.  Most acoustic neuromas grow very slowly.  Some people can wait ten years or more before any treatment is needed.

With surgery, there are serious risks.  If you read these forums, you will see others who have had surgery and have had facial paralysis and other serious results from the surgery.

So, in the neurosurgeon's mind, why is waiting another 6-months not feasible?  If you waited another six months, and had a second MRI, and it showed no growth at all, then why would you want to take the risks involved in brain surgery?  You might be able to live another 10 or 12 years without facial paralysis or other complications?

You asked for advice on advocating for surgery, and what I have given you is just the opposite -- but it is what the neurosurgeons told me.  I did not have good reasons to counter their arguments, so I waited the six months (against my will) and had the second MRI.

My second MRI showed that my acoustic neuroma had no growth.  Actually, it shrunk from 4mm to 2mm.  Now, my neurosurgeon says there is absolutely no reason for me to take the risks of surgery now, but to continue to monitor it.

So, I just want to tell TheEsquire that often the doctors know what they are doing.  I was wrong about demanding that they do my treatment right away.  I can't say that your experience will be the same as mine was.  But I just wanted to give you something to consider.

I wish you well on your journey!
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.  Stable MRI on 7/29/22
No treatment yet.

TheEsquire

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Re: 3mm-4mm “wait and see” - now deciding on surgery
« Reply #2 on: August 07, 2023, 04:53:05 pm »
Hi! Thank you for the reply. I have had severe dizziness and that is causing me to want to act. My balance nerve is already damaged, so I’d rather cut it a get it over with and recover rather than continue to slowly decline. I’m a good candidate for the hearing preservation surgery so I’m hoping to move forward!

donjehle

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Re: 3mm-4mm “wait and see” - now deciding on surgery
« Reply #3 on: August 15, 2023, 06:53:12 am »
I hear what you are saying, and I was there, too.  I was not able to walk without falling.  I had to walk with a cane.  I knew I had to do something because I could not keep my job without being able to keep my balance.  My neurosurgeon recommended that I have vestibular therapy.  When I saw the vestibular therapist, I fell five times in front of her.  She tested my balance, and I scored a '27' out of '100.'  When I complete my therapy, I scored a '91', and I can now walk normally without the use of a cane.  Every once in a while, I will briefly have a balance issue, but I'm able to recover quickly, and I have not fallen since my therapy.

I wish you the very best in your experience moving forward!
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.  Stable MRI on 7/29/22
No treatment yet.

bri-82

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Re: 3mm-4mm “wait and see” - now deciding on surgery
« Reply #4 on: August 15, 2023, 10:52:40 am »
Depends on your age and condition somewhat and how well the neurosurgeon thinks you'll do with surgery. Of course that in addition to what the neurosurgeon thinks about how you will recover. I'm a month out of 3rd surgery because 2nd radiation treatment did not work. I'm 40 yrs and have been dealing with this since I was 27. Yes, surgery is dangerous. So is radiation in its own ways, but its easier and less risky. Yes, surgery is a much more involved process/recovery on everyone's part. Get the best/most experienced (with the condition) neurosurgeon you can and get a second opinion at least. With radiation the thing usually just stays there and its a waiting game. With surgery you have a decent chance of just getting it all out and being done with it. Good luck my friend. And if you decide on surgery, I wish good luck and God's grace to the neurosurgical team as well.

~BM
4.5 cm Right AN.
Sub-occip. Surgery 2011 @ Wash. Hosp. Center
Gamma Knife 2012 @ Wash. Hosp. Center
Translabrythine Surgery 2017 @ Johns Hopkins
Cyber Knife 2022 @ Johns Hopkins
Sub-occip. Surgery 2023 @ Johns Hopkins

TheEsquire

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Re: 3mm-4mm “wait and see” - now deciding on surgery
« Reply #5 on: August 15, 2023, 01:06:13 pm »
Hi everyone! thank you for responding!

I have decided to get surgery - I am scheduled for Middle Fossa surgery on September 14th. I am nervous, yet optimistic.