Author Topic: Considering Radiation  (Read 1802 times)

ANSkeeterMcGee

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Considering Radiation
« on: December 18, 2022, 04:48:49 pm »
I am newly diagnosed with AN.  The tumor is 3mm x7 mm and presently confined to the inner right ear.  I had a clean MRI three years ago.  The surgical option concerns me given a 40% chance to go deaf during the operation as it was explained to me plus a 10-15% chance of facial paralysis.  I have 86% of my hearing presently in the ear.  I am 46 years old.  Can someone share their long-term hearing retention experiences 3 yrs out, 5 yrs out, 10 yrs out, etc?  I cannot find sufficient data.  Also, is one type of radiation better for hearing preservation than others?

SP

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Re: Considering Radiation
« Reply #1 on: December 18, 2022, 06:47:32 pm »
Hi ANSkeeterMcGee,

First off sorry to hear of your diagnosis, and welcome to this community which hosts a wealth of information.

I was diagnosed with a large AN on left hand side (LHS), @ age 42 ; I went the radiation route and had treatment with CyberKnife in 2015. Prior to any treatment I had excellent hearing in both ears. Around 6 months post treatment my hearing started to decline on LHS, and continued to deteriorate for next 2 years or so. I have approx 50% hearing loss on the left and now have a hearing aid to help with this. It's not perfect and I still have challenges hearing in crowded places, like cafes and noisy environments, but it definitely helps. The surgical intervention for me would have resulted in 100% hearing loss on LHS.
I do not know of the difference in hearing preservation between various radiation types, I would guess that size of tumor may dictate this more than radiation type.

wish you well on the healing journey,

Stella
My AN Story – Sydney to Stanford CK

2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

gbly

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Re: Considering Radiation
« Reply #2 on: December 19, 2022, 01:54:34 pm »
ANSkeeterMcGee,
Welcome and you are in the right place.  I figured out something was wrong when I woke up and could not hear like I use to in my left ear, I was 48 too.  I opted for radiation, surgery would have been a long return to normal and my work would have made me leave.  Plus after research the radiation seemed like a 90-96% success rate.  I will say there have been a few issues, (face synkinisis) but so far the AN has been responding well. January is my 3rd annual MRI and I am keeping my figures crossed. 
So the question of hearing will be interesting to see what you get, I have probably lost a little more of my hearing, but feel it has stabilized and is around 50-60 % lost.  However, I will take that over complete loss.
I think at this point we are all needing to determine what are we willing to accept and what we are not.  Hearing loss is not always, there several entries where people have not lost any hearing.  I think the one thing I learned (for me) is that I should/would not wait and see.  I should have radiated immediately when it was still small.  Less likely to impact hearing, face etc.

Always something you have to decide and discuss with doctors, but lots of good reading.  Good luck and let us know what you are thinking.
Gbly

Greece Lover

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Re: Considering Radiation
« Reply #3 on: December 21, 2022, 09:10:26 am »
Skeeter,

sounds like you've decided against surgery?  It's difficult with these tumors to have so many options. None are perfect, and all also have benefits.  But you also have time.  I was told by my doctor that because the radiation treatments are more recent, there are not longer term studies about hearing retention in those who have had those procedures.  (That was over 6 years ago, so that may be changing.)

For me, I wanted it out, and I'm glad I made the choice I did.  But we all have a different decision matrix.

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.

ANSkeeterMcGee

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Re: Considering Radiation
« Reply #4 on: December 23, 2022, 05:36:11 pm »
Greece Lover it sounds like you went the surgical route?  What was your outcome regarding hearing preservation and facial paralysis.  Both scare me a great deal, especially the latter.

Greece Lover

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Re: Considering Radiation
« Reply #5 on: December 24, 2022, 10:01:41 am »
Skeeter, I just sent you a PM, too, but I didn't see these questions.

My hearing was stable both before and after surgery, which was a blessing.
I had facial paralysis for a week or so after surgery, but it resolved no problem. My tinnitus got a bit worse after surgery, but is generally not too bad.

going into surgery at university of Iowa, I was told I had about 65 percent chance of saving my hearing.  Long term facial involvement was a pretty low risk.   So, I had a really positive outcome and feel very fortunate.
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.

dominic12345

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Re: Considering Radiation
« Reply #6 on: December 25, 2022, 02:31:21 pm »
Please read my journey with ck before you decide to do anything…. I experienced horrible results and I still struggle almost 10 years later with the aftermath of ck.

richcooks

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Re: Considering Radiation
« Reply #7 on: January 06, 2023, 01:11:07 pm »
Best of luck moving forward after your treatment.  I had fractionated sterotactic radiation... in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and 2010 I too had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 13 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"

donjehle

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Re: Considering Radiation
« Reply #8 on: January 06, 2023, 08:12:32 pm »
What I have observed, ANSkeeterMcGee, in a totally non-scientific approach is that someone on the forums will choose to have surgery to remove their acoustic neuroma, and it will be wildly successful with minimal symptoms, and then they will recommend that approach for everyone else.

And then someone else will have the exact same surgical approach and will have terrible results.  They will have awful facial paralysis, terrible migraine headaches, and loss of hearing, and they will tell everyone on the forums not to have that surgical procedure.

Then there will be someone who had GammaKnife, and everything went very well.  And 10 years out, they are still doing well. So, you know what they do?  They recommend GK to everyone.  But there will be someone else who had also had GK, but have experienced nothing but problems, including loss of hearing.  And they will warn others not to do GK.

And then there are others who elect to have CyberKnife, and everything went very well.  And you know the routine by now: they recommend CK to everyone else on the forums.  But then there's the person who had CK and everything seemed to have gone wrong.  And they warn everyone not to ever have CyberKnife.

How can it be that with every treatment approach, there are those who have had a wonderful experience and there are those who suffered miserably?  I believe the difference comes down to two things:  First, while our acoustic neuromas have certain similarities, there are also a lot of differences.  So what works for one person with one approach might not work as well for another person's whose acoustic neuroma might be bigger or smaller or is located in a different area.

And then, secondly, and maybe more importantly, the experience that the practitioners have with any approach varies widely.  So, someone can have surgery with one very experienced acoustic neuroma neurosurgeon and have great success.  Another person may have the same surgical approach with another neurosurgeron who only does one or two acoustic neuromas a year.  This doctor is not very experienced with it and nicks a nerve, and the patient suffers terrible facial paralysis.  The difference is not in the approach; the difference is in the skill and experience of the neurosurgeon.

The same thing is true with radiation.  One person will have gamma knife therapy with a practitioner who treats hundreds of acoustic neuroma patients, and he/she has great success.  Another person will choose to have CK, and they think it's a better approach because it is fractionated.  However, poor treatment whether it is done once (as in GK) or done multiple times (as in CK) is still poor treatment and can have terrible consequences.

Unfortunately, what I often see with those who had terrible results with their treatment is that they never considered the best in the field.  They often go to the hospital which is the closest to where they live and have an inexperienced doctor treat them.  And then when the results are bad, they blame the treatment approach rather than the skill and experience of the practitioner.  So many place their brains in the hands of whomever their ENT recommended rather than to search for themselves someone who is highly experienced and is dealing with acoustic neuromas every day.

ANSkeeterMcGee, you specifically asked for data.  I have not given you any data on purpose.  If you truly want data, then I encourage you to contact the Mayo Clinic.  They have a lot of data on the various approaches.  However, what is more important to me is not the data because the data can be skewed by in experienced practitioners.  What is more important to me is finding someone you trust who is very experienced treating acoustic neuromas.  Can something still go wrong with a highly skilled doctor? Yes, but he/she is way less likely to have poor results compared to the person who rarely treats acoustic neuromas.

Be cautious of the place where they purchase a new radiation device (whether GK or CK), and they are now advertising that they offer treatment for acoustic neuromas.  And every practitioner who works in that department cannot wait to try to new machine.  The problem is that they have no experience using it.  Their results will not be as good as another place where they treat hundreds of acoustic neuroma patients.  Experience and skill will trump inexperience no matter which treatment approach is chosen.

That's my long answer to your very good and simple question.
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.

gbly

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Re: Considering Radiation
« Reply #9 on: January 08, 2023, 11:43:05 am »
donjehle,
I don't think any of us could have said it better.   The important piece is the right doctors and top of their fields. 
Well said and thank you.  All experiences are different and I suspect even the ones that went great had some issues, but they were so minor they moved through them and accepted.

v/r GB