Author Topic: Please help! Studies identify new predictors of VS patient outcomes!  (Read 1218 times)

Be-gone-Noma

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Has anyone seen this study from August 2020 by Massachusetts Eye & Ear? Titled: Studies Identify New Predictors of Vestibular Schwannoma Patient Ohtcomes’

Has anyone had hearing loss in your non-AN ear and what treatment did you have or are you on watch & wait?

Very concerning molecules from the AN may effect hearing in opposite ear. I would really like to know what you all think of this??

https://focus.masseyeandear.org/studies-identify-new-predictors-of-vestibular-schwannoma-patient-outcomes/




« Last Edit: February 13, 2021, 06:35:17 pm by Be-gone-Noma »

gbly

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Re: Please help! Studies identify new predictors of VS patient outcomes!
« Reply #1 on: February 24, 2021, 07:55:17 pm »
Be-gone-Noma,
Interesting study and glad to see that they are looking at different things.  I would say don't get wrapped around the numbers just yet, that study was only with 20 patients.  That is not a very deep number, and I noticed no ages etc.  It did say watching over a 24 year period, so what was the starting age of patients, cause I am guessing I will be deaf in my "good" ear in 24 years....I hope not, but I am already starting this at the 50 year mark, so trying to be a realist here.

I have not had hearing loss in my good ear, but I am only a few years into this journey, but I am at the 5 month post radiation.  I just could not jump straight into surgery.  I had an MRI today and waiting to have the results discussion with the doctor to see if the radiation is doing its thing.

To circle back around to your concerns with the molecules, absolutely concerning, I don't think too many of us have heard of that before.  But I would like to see more data on the 20 subjects....

What are you doing right now?  Treatment or WW?  What size etc, what are you thinking of doing?  Lets get you working on the more important and that I the here and now and what you can control.  What treatment you want to do and get to the other side.  You got this and you are at the right forum for getting questions answered.
GB

Jill Marie

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Re: Please help! Studies identify new predictors of VS patient outcomes!
« Reply #2 on: February 27, 2021, 09:26:27 pm »
Hi Be-gone-Noma,

Yes, I have hearing loss in my good ear.  I had surgery in 1992 when I was 36.  I had hearing loss in my left tumor ear when I was tested in first grade.  I don't recall how the tests were for my right ear, must have been okay or I would remember.  There wasn't any real concern about my right ear as I grew up so I never had it tested.  The last couple of years I worked (retired 2 years ago) they made us get our hearing tested, definite hearing loss in right ear.  I had no idea why, I've always worn hearing protection, didn't attend loud rock concerts growing up etc.  Thanks to you at least I now know that the hearing loss is probably do to the tumor.  I just turned 64 and I'm hoping to still have enough hearing to make life good when I'm in my 80's.  As soon as Covid-19 is under control I plan on seeing a doctor so I can get my hearing tested and get a hearing aid.  Will let you know what the doctor says!  Take Care, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Be-gone-Noma

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Re: Please help! Studies identify new predictors of VS patient outcomes!
« Reply #3 on: March 01, 2021, 04:38:21 am »
Thank you for responding!

I have not yet posted my story on here but have been glued to this website since I was diagnosed in November 2020 with a left side AN 14mm x 13mm. My only symptoms at the time were mild hearing loss, mild tinnitus & my left ear would occasionally feel blocked on & off like I was under water.

I have had 6 consultations with surgeons who do surgery & radiation specialists who do radiation- both Gammaknife & Cyberknife. The reason for so many consultations is because the surgeons recommend surgery is best & the radiation specialists recommend radiation. I know a lot of us experience this problem when we have AN’s in the size range that are suitable for both.

I have been left totally confused & no idea what to do. I was leaning towards Cyberknife after all I have read here but this article about AN molecules damaging hearing in the opposite ear has really scared me. I contacted Dr Steven Chang at Stanford for any comment on the article & for an opinion on my case. He responded saying he had not heard of the study so he could not really comment on it. He did note that the study seemed to be about untreated AN’s. Therefore, does a radiated AN release the same molecules?? I don’t know but would love to know that information!! Dr Chang did recommend 3 Cyberknife treatments for me.

I’m only 36 so I do have concerns what the radiation may do to my brain down the track. However, surgery scares the hell out of me & it’s complications. I have good hearing..it’s hard to walk into hospital & hand that over when there’s another option. I value quality of life over “just want it out”. The surgeons I have seen here in Sydney, Australia want to do translab, removing both the vestibular & hearing nerves. This is not sitting well with me..to never be able to have any hearing device that would help give back hearing on that side. I have a free opinion scheduled with Dr Friedman & Dr Schwartz tomorrow. I want to find out if they would do the same approach since they seem to be the experts. I also don’t want to have translab if there are better surgeons who could save my hearing with a different approach. This is so hard!

This website has been so incredibly helpful. Thank you to everyone here who replies offering advice & support. I have learnt so much here.

I wish all of you the very best on your own journeys.

* Update: I spoke to Dr Rick Friedman this morning from UCSD. He would do retrosigmoid approach with me & try save my hearing. 25% chance of saving it. I would definitely have my surgery with him (if I didn’t live in Australia with this pandemic going on!!)

Hayley
« Last Edit: March 01, 2021, 10:23:28 pm by Be-gone-Noma »

mwatto

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Re: Please help! Studies identify new predictors of VS patient outcomes!
« Reply #4 on: July 06, 2021, 11:23:31 pm »
I had cyberknife 2 and a half years ago for 2cm AN right side. I have minimal hearing loss still and my right side which might be compensating for any variation has normal to acute hearing. I do keep inflammation down - I take bromelain, boswellia and recently honopure as I had some nerve pain. I think working on inflammation is the key to reducing toxic proteins the dying slug gives off. So enough sleep, exercise, healthy diet, Vit D3. I dont have NF2 but I work on the pathways as they the same eg PAK-1, VEGF etc.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.

notaclone13

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Re: Please help! Studies identify new predictors of VS patient outcomes!
« Reply #5 on: July 07, 2021, 08:45:23 am »
Excellent insight mwatto. Lowering inflammation in your body is the key to combatting many health issues such as  heart disease and arthritis. Curcumin is an excellent supplement to take as well.

mwatto

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Re: Please help! Studies identify new predictors of VS patient outcomes!
« Reply #6 on: July 08, 2021, 03:28:25 am »
Thanks Notaclone! Yeah I am looking for a good brand of curcumin- what do you recommend? I see its on the list to inhibit MMP-14 so thats good also works on the pAK-1 pathway.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.

 


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