Rethinking Vestibular Schwannoma

[@kobenoah1]

I just found out i have one. 16mm. I think I must have had it for about 15 years. I’ve been slowly going, deaf in that air, and it finally got to the point where I was tired of saying what all the time. Having people have to repeat themselves when talking with them.

[@simplymeconnie4003]

Thank you for this. I had a 6cm one removed in 2016, and GK on the growing 2cm left behind in late 2019. I learned a lot in those years, but this is by far the most informational video I have seen

[@kristenalmonte1110]

I am going through this right now. Did you do gamma knife or surgical removal? I'm trying to decide what to do.

[@simplymeconnie4003]

@@kristenalmonte1110 Do NOT have surgery if you don't have to. I had translab 6 years ago. I am left with 2cm of the 6cm. Go with radiation if you can. I had it for the regrowth. It still sucks, but no chance of living with constant 11/10 pain like I woke up with this morning.

[@kristenalmonte1110]

@@simplymeconnie4003 Thank you for your input. Yes, in my research in most cases people are left deaf as well. Was unsure if that was all types of surgery since I thought there were 3 kinds. Mine is 2.5 cm and I am unsure exactly where it is until I see the neurosurgeon on 5/25. I just found out I even had it this past Tues. I have ringing & hissing. I am assuming it may grow and I have to do the gamma knife now while it is small and I have minimal symptoms.

[@khouse1554]

@@kristenalmonte1110 any update? I have this and I’m only 27 :/ scared

[@BrainSpineGroup]

Thank you all for sharing with each other. We’re all glad our channel is able to bring patients together to discuss shared experiences - going through all this is a lot! Our channel has a lot great new things coming soon, and our live broadcast starts Tuesday 12 noon EST next week! Subscribe for notifications and join us live every Tuesday & Thursday with Dr. Rad!

[@GuillRoy10]

Really, really, I hope the clinics, hospital and doctor of all world continuie investigating and developing more information for combat this type of tumors, you're great! Thanks a lot! Saludos from México!! :)

[@BrainSpineGroup]

Thanks for sharing your comment! Our channel has a lot great new things coming soon, and our live broadcast starts Tuesday 12 noon EST next week! Subscribe for notifications and join us live every Tuesday & Thursday with Dr. Rad!

[@maris7457]

ya. i have the charity for raising awareness for this in my beneficiaries on my bank acct. it's rly needed

[@doctoratindera-libutera6668]

Keep me updated, i am a using this presenting my own case and surprisingly always new to them

[@user-wj8gd9gl8y]

Thank you for presenting this training. So many physicians know very little about AN and have no idea how to deal with their patients. As a patient myself, post SRS, I love your enthusiasm about the topic. God bless!

[@WendyMorrison-m6p]

Very interesting. Having Retrosigmoid craniotomy in the UK for acoustic neuroma ..always fascinating to see how this is dealt with elsewhere. There was no mention of cystic tumour though or sigificant complications that can arise from surgery..both of which were unfortunately sustained by myself. Nevertheless an informative tutorial.

[@dllee5930]

very interesting I am not a doctor but could follow your presentation pretty well.

[@BrainSpineGroup]

Glad it was helpful!

[@fjames2230]

Thank you for sharing this. I appreciate the approachable lecture style for a very complicated topic.

[@sandrat.vazquez543]

Thank you for your presentation! I’m checking to see if you still have a any copies left…..do see it’s 2yrs old…..

[@zorro248]

Very helpful. I’m having my 2.7cm AN removed surgically in a couple of weeks and this helps clarify some details.

[@BrainSpineGroup]

Thank you for sharing your story! We’re glad this video helped clarify some things for you. Our channel has a lot great new things coming soon, and our live broadcast starts Tuesday 12 noon EST next week! Subscribe for notifications and join us live every Tuesday & Thursday with Dr. Rad!

[@varun31779]

Hi, hope u r doing well, may what were the symptoms in your case?

[@photo_art]

Hi, thanks for sharing, as it’s been over a year, how was the surgery ? If you don’t mind me asking, any issues ?

[@poparada]

Thank you for this presentation. Do you still have books to give out? I’d be interested in reading.

[@BrainSpineGroup]

No, sorry

[@dllee5930]

do you think Cawthorne's head exercise are even practical if you have Vestibular Schwannoma??

[@jeffmui3727]

I have 11mm. After consulting with ENT, they suggested to get it removed.

[@sherrylapiro5930]

I would love to get your book. I’m having major memory issues. Is this normal?

[@zoeduckering7509]

Thank you, very informative.

[@BrainSpineGroup]

Glad it was helpful!

[@lolfunvids3103]

I know this video is older, but are there still any books available? Recently diagnosed with a 0.9cm vestibular schwannoma and I am looking for all the information I can get. I am not one to only trust the advice of one doctor etc. as stated many have opinions and I want to be very involved in the treatment of my situation. Thank you for this informative and amazing video!

[@maris7457]

the giveaway for my tumor was when i wasn't able to smile fully on that side of my face anymore. sooo apparently it wasn't a true vestibular schwannoma? lol (: it was almost 3 cm, originated in the ear canal, and was causing midline shift. baseline only 1 of 3 signals in my ear were working at the start of surgery and it was lost during surgery. i also had heavy hemmorhage in my cerebellum to the point where it compressed my 4th ventricle, and i had a stroke in my pons. it left permanent damage/scars in that area and i have seizures/epilepsy in that region now that i've just started medication for because it was getting dangerous (affecting heart/breathing)

[@michelebruxinha]

Thanks for the video, it's very helpful. My dad has a vestibular schwannoma and we're trying to find all information we can to know what to do, including information about a procedure called gamma knife in Brazil to see if he can have it killed instead of removed, sparing him from a 7hs surgery plus a week in hospital. I'm not a doctor, but a biologist, so I understand a bit of how the human body works and I'd be very interested in the book you said to study it, if possible.

[@BrainSpineGroup]

Thank you for sharing your dad’s story! We genuinely hope your dad and his doctors are able to find the best and right treatment for him as an individual. Our channel has a lot great new things coming soon, and our live broadcast starts Tuesday 12 noon EST next week! Subscribe for notifications and join us live every Tuesday & Thursday with Dr. Rad!

[@doctoratindera-libutera6668]

@@BrainSpineGroupi am a survivor of the case since 2013. Keep me updated, i am presenting my own case.

[@sirajallie4682]

Thank you for your info...need to know as you are very easy to communicate need your help to help others in particulary with other health issue's as im not a dr but i have matter that relate

[@quietguy3969]

I have a 1.5cm AN with complete deafness in my left ear. I also suffer from vertigo quite often and am unstable while standing still and walking. I have tinnitus all the time and loud noises make it worse. it grows about .5cm per year so far.

[@BrainSpineGroup]

Thank you for sharing - living with those symptoms must be such a challenge. We’re here cheering for you and your doctors to come up with the best treatment plan possible. Our channel has a lot great new things coming soon, and our live broadcast starts Tuesday 12 noon EST next week! Subscribe for notifications and join us live every Tuesday & Thursday with Dr. Rad!

[@chocolateidol9040]

The doctors won’t remove it?

[@Me-lb8nd]

Very interesting!

[@BrainSpineGroup]

Glad you think so!

[@CristinaOrtiz-p5p]

I have a 2.5cm X 2.6 cm “mushroom” that’s already pressing against my brainstem. I’m having retrosigmoid craniotomy in 12 days and now I’m reconsidering that maybe radiation should be the way to go. In 6 months though it grew 1 cm >.

[@estherbarnslater7613]

Thank you sir, I have been tumors, right and left. How do I get copy of your book?

[@rooprandhawa4145]

Is Acoustic neuroma cancer or safe , please help 😢😢😢?

[@neonthai]

not cancer

[@anjalimishra7821]

My friend is having a neoroma in right and left region both of 2 mm but it has pus involving cerebral linings what should be the tt plan?

[@johannacenteno5885]

May I have a copy please

[@BrainSpineGroup]

Glad you liked it!

[@xotx4291]

This is one of those rare care cases that I wish the inset webcam was larger. Anyway, my girlfriend found out yesterday that she has a "Left CPA-IAC "ice-cream cone" shaped mass measuring 2.7 x 1.8 x 1.8 cm." We have no idea what this means but have seen lots of bad stuff about it. However, we don't currently know if her Schwannoma is considered large or not, as we don't know what the measurements means. We have heard 2.5> is considered large, but is the 2.7 in her diagnosis what we should consider THE size? She is very, VERY scared :( Thank you. Going to continue watching video...

[@marionjones2244Bible]

I have this so can you send me a book. I’m a patient of Cedars Sinai in California

[@BrainSpineGroup]

Glad the video helped - sorry we don't have books right now.

[@bill6656]

Could they be caused by older "Brick" style phones?

[@hiraomer7062]

Can you send me copy

[@puppetman1496]

Good8 day

[@las174]

connection to cell phone use?

[@tsangs3363]

I have a 14mm....😢

[@marciwhitman3513]

That is a very very small tumor. You are very lucky to have found it this small. More than likely the course of treatment would be to watch and wait. But it's best to see a neurosurgeon so that he can do an exam and determine what is the best treatment for you based on your symptoms and the positioning of your tumor. It's also best to see an ENT and to get a hearing test. My tumor is 1.7 cm and yours is 1.4 cm. I just recently had radiation done and I just had my MRI after that three months later. There has been no new growth. I'm due to get another MRI in November to compare the findings.