You've got an Acoustic Neuroma.
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- čas přidán 28. 08. 2024
- I was diagnosed with an Acoustic Neuroma in November 2016 and filmed this shortly afterwards. I wanted to document my experience, for my own reference firstly, and perhaps to help anyone else that might find it of interest.
This is my first video about having an Acoustic Neuroma. I'm new to vlogging so please bear that in mind!
An acoustic neuroma, more accurately known as a Vestibular Schwannoma, is a non cancerous tumour which is benign (doesn't spread).
From Wiki - Although it is commonly called an acoustic neuroma, this a misnomer for two reasons. First, the tumor usually arises from the vestibular division of the vestibulocochlear nerve, rather than the cochlear division. Second, it is derived from the Schwann cells of the associated nerve, rather than the actual neurons (neuromas).
Sir i can tell it took a lot of bravery to make this, thank you for doing so and I’m very glad you’re doing well!
I understand your fairs brother. I went through the same thing. I had surgery. A year ago and I am doing really well.
Hi Jennifer, I'm pleased to hear that you're well. Might I ask where you're from? I'm interested to hear about people's experiences from different places. Most of the things I've seen are from people in the US. Kind regards, Mark
I don't no if you got my reply. I am from Trinidad and Tobago.
Google my name. "" Jennifer Basdeo living with acoustic neuroma "
So sorry for my delayed reply. I've watched your video and thought it was great, thank you for sharing your experiences. All my best to you and your family.
@Alisha12287 i have also Aoustic neuroma 6.5mm tumor, my right side face is semi paralyzed and i have tinnitus in my year. This noice making me crazy its uncreasing day by day. Doctor told me for cyber knife surgery or open surgery. Iam so afraid plz share me your experince of after surgery how u feel now.
Thanks for sharing. I just discovered mine and I am also trying to educate myself with the journey ahead.😊
Mine is 2.5mm and I knew it was there. I have facial numbness that comes and goes. Hissing & Tinnitus. I just want mine dealt with.
Thank you for sharing your journey 🙏
Have you had surgery, did you have any side effects?
Thank you for this video. I wish you all the best
Good luck when you have your surgery. I was told I had a acoustic neuama and I had my surgery on July 26, 2016. Mine was 3.9cm. I did lose all my hearing the right ear. I lost my taste buds for almost a year. And had migraines for a couple of months. But now, everything is good. I was told surgery would be up to 12 hours and mine was a little over 9 hours. And 2 weeks in the hospital. But I was out in a week.
scrapperliegey thank you. May I ask where you’re from? Most of the people I’ve seen sharing their AN stories are in the states...? I’m pleased to hear you’re doing well now. I actually have a new surgery date (only recently arranged), this coming Thursday the 28th of Feb...
I'm from Pennsylvania. Good luck on your surgery. I hope you have a speedy recovery. Stay strong!
scrapperliegey , thanks again, I appreciate it! Best wishes, Mark
Good luck to you son. I have one but I’m in my 70s with lung disease so they can’t do anything but MRIs xx
Hi Mark. 30 yrs old from England. I'm Tara. 34. From Oakland, CA. 😄
Hi, I had surgery a year ago, March 13th, 2018 and I’m doing ok. Have you had surgery yet?
What do you think could of triggered acoustic neuroma , Did you have loud noise exposure over a long time or stress induced , smoking? Reason I ask is Im also 30 with high frequency hearing loss in my left ear with tinnitus and waiting for my MRI scan results. I did serve in the army and noise pollution comes with the territory.
Hello, thanks for your comment. My understanding is that there isn’t a particular trigger for an AN... they just happen sometimes. Not especially helpful I know, but no, I have no history of exposure to loud noises and don’t smoke. There are many reasons for hearing loss, so hopefully yours is not due to something more serious 🙏
@@MrFirepoi I did the test on your video and had similar results. while I know this is not enough to say that it is AN but with the unilateral hearing loss and tinnitus and I feel mild pain just above my left ear i’m worried. My results from my MRI are due this Friday and will keep you posted. Till then glad to read that you’re outcome from the surgery has been so positive.
Hi I was wondering what your symptoms were prior to diagnosis thanks.
A , hi there. I had reduced hearing in my left ear, as if it were blocked, and masked balance problems which I didn’t even realise at the time. 2 and a bit years on from diagnosis I had surgery and thankfully had a great outcome - no facial palsy or any of the other things I was worried about.
I have ringing in my left ear. I can hear fine out of it. Its been like 3 months with it and it really doesnt bother me but im really worried. I often get ear infections so idk if that caused damage for the ringing. Im very scared and im only 15 pls help.
I have a couple questions- How long did u have it for
2- Did they do CAT Or Mri for diagnosis
Hi there. To answer your questions firstly - 1) I noticed hearing loss for about 3 months before I went to my doctor about it, after which I was referred to the hospital a few weeks later for an initial consultation. 2) About 3 weeks after that first hospital meeting I had an MRI, which confirmed I had an Acoustic Neuroma.
Thanks for your comment. It's an unsettling time when you don't know what's happening, and being able to look stuff up online is a mixed blessing...as it could just be that you've got damage to your ear, which although annoying needn't be any more serious than that. I'd recommend seeing a doctor and taking it from there. It's understandable to be scared when you think it might be something serious, but until you've confirmation then all that worry could be for nothing.
In my case, I didn't receive surgery for a little over two years after my diagnosis, due to cancellations. My point here is that I know what it feels like to want answers and solutions quickly, and not to have them. My best advice here would be to kind to yourself, take things as they come, seek professional medical advice, and talk to people close to you about your worries.
Wishing you all the best,
Mark
Hey man did gou get yourself tested?
I recently had the same surgery for a tumor that was also 3cm x 1.5cm x .4 cm. Also pressing on the left side brain stem. 8 hour surgery and I got the left side palsy just after the surgery. Still have now almost 4 months post surgery. Had a small gold weight inserted in my upper eye side to help with closing the eye. Hoping palsy with improve by the 6 months post surgery. Don’t know,the results of your exoweeiecne, but I am interested if you care to share. Thx
Hi Jeff, thank you for sharing your experience. I hope that you continue to recover and that your symptoms are manageable. I'm coming up to 4 years since my surgery and am fortunate to say that I've had no further complications. I have annual MRI scans to monitor the situation, as there was some residual tumour left in place, to try and preserve the nerves in the area. My initial outcome was extremely fortunate, as I did not experience significant palsy. I did have a period of about 6 weeks where my left eye didn't close fully, but it did not require a weight and recovered naturally. I have some mild balance issues occasionally, triggered by tilting my head quickly to the left, and of course, I am deaf on my left, but other than that I'm basically fine and have been since about 6/7 months post-surgery. Wishing you the best, Mark.
Hi... Am from India and had this surgery last year November. I still have facial palsy on the left eye and left eye doesn't close completely. Things have definitely improved but way to go. Have you recovered from your facial palsy now? Will be grateful if you reply. TIA
❤ 🎉
Question did u feel like ur left ear was clogged / full of wax / something inside that want reach in and get out , constantly wanting to pop ur ear to open it up along with tinitus i have 4 the last 4 years ear drops arnt working
Hi, sorry for the slow reply. Yes, I did feel that my ear was blocked and I thought it might be wax. I tried clearing it but nothing worked (as it wasn't actually blocked). I didn't have tinitus, but I did have reduced hearing so eventually went to the Dr and they couldn't see anything, so I was referred for an MRI, and thats when the tumour was found.
@@MrFirepoi see I have everything but hearing loss however I've been told I speak loud
@@MrFirepoi my GP keeps giving me ear drops
How did your recovery / surgery go
Chris Boffey hi there, both went very well thank you. The surgery couldn’t have gone better to be honest. I was off work for 3.5 months but back full time thereafter. Didn’t have facial palsy either. I had a brief window where my left eye didn’t close fully, but that only lasted a few days before fixing itself. All in all I’ve been incredibly lucky 🙏
Dude, how are you doing now ?
armandolo17 hi there! I’m pretty good thanks. Not much to report to be honest... I’ve not had surgery yet... and my tumour has grown a little (a few millimetres or so) since my initial diagnosis, a little over 2 years ago.
Symptoms wise I’m much the same as before, minimal deterioration, if any. I might be having surgery in the next few months, I’m on the waiting list. Hope all’s okay with you.
@@MrFirepoi Hi, I hope everything goes well for you, In my case, I have all the symptoms of an acoustic neuroma, I noticed it since 6 months ago but i did not care at that time, now the symptoms are starting to get a bit worse. I still need to go to the doctor and get an MRI to confirm. well, in the meantime, Im gathering all the information I can to see the options, as you mention there are 3, depending on the size of the tumor it can be, 1) wait and see 2) surgery and 3) Gamma knife . any of them with pros and cons. Im also reading some articules related to this. some articles say that aspirin may reduce tumor growth, but the conclusions of this are not so clear, here some links
hms.harvard.edu/news/reducing-tumor-growth
uchealth.com/articles/aspirin-an-option-for-patients-with-small-acoustic-neuromas/
. the most promising articles I read is that according to some researchers in the Massachusetts Eye and Ear institute say that an Abortion Drug like "Mifepristone" may halt growth those tumors, here some links
www.masseyeandear.org/news/press-releases/2018/04/mifepristone-may-halt-growth-of-intracranial-tumor-that-causes-hearing-loss
www.nature.com/articles/s41598-018-23609-7
,
the thing is that research is still on Phase II clinical , which means they are still testing it, and if it works may take some more years to be approved.
How are u? I hope you are well! xx
Hi there! I’m doing well thanks, recovering well after surgery in March... feeling well enough to be returning to work in a few weeks. Best wishes, Mark
@@MrFirepoi Great news Mark! Keep us updated! All the best!
What has been your outcome?
Two weeks ago my surgery was cancelled again, for the third time, on the day of surgery... I’m actually on the way to the hospital now as surgery has been rearranged for today! 🤞
How are you now? You have surgery? What were your measurements?
Hello. I'm good thank you, hope you are too. I did have surgery, in 2019. At that point, my tumour was a little over 3.7 cm. I was incredibly fortunate to have a good outcome from surgery, and besides the partial deafness, I'm basically fine. I've had monitoring scans each year since and everything is stable. Long may that continue!