Відео

Hey Jake are you able to workout like lifting weights after the full recovery

Hi I just found out I have AN And having surgery in September,I have questions how did you mentally prepare yourself for the Surgery,that’s been the hard for me and scared of having surgery

Hi I’m from India ! Please can you suggest some good doctors in America . One of my aunt lives in Florida .

You are great man

I don't understand English, what was the measurement of yours?

Thank you for sharing your experience! It is very reassuring to hear that you have done so well. I am facing surgery soon, and am quite nervous and scared. You are doing a great service to our AN family by providing such great information. I will also add that you are a fabulous speaker, especially for someone having 2 brain surgeries!!! I am shocked at how articulate you are and how well your thoughts are structured!!! Both videos were very well done!😊

Thanks awesome to listen to your testimony I am also going in for surgery soon great to hear s positive outcome....

Do you think this surgery is worse than heart surgery?

Hey, at least you lost some weight.

Awesome story! Thank you for sharing! I’m 1yr post op from my AN and 1 month post BAHA surgery. VCU Health in Richmond VA was/ is an amazing experience for me!

Great video thank you.

Thanks for sharing. I was diagnosed this past summer. Currently watching and waiting. Your positive comments were encouraging.

thank you for the story Jake - i just got the diagnose but got deaf on the right ear 3 month ago , when i listen to everyone's stories, everyone says that the mr scan ´says one thing but they are always bigger in realty - do you know how that is ? , its getting me worried another thing is that they say i´m bleeding in my brain , did you bleed or have you heard that in some of the other stories ? best regards from Denmark

Had a acoustic neuroma. Operates in Sept 2019. Same as yours… deaf in my left ear now. 3.5 - 3.2cm Drooping face etc… All good now though :-)

Hi Jake ive recently been diagnosed with an AN.. thankyou for your video updates! V helpful 👍 hope your follow up scans have been good since your last surgery.

Thank you

I watched your 1st video but did not catch it if you had your balance nerve removed or do you have it still? I had my AN removed August 2013 along with my hearing and balance nerve. I got tinnitus after that too in my AN side. 6 months after my surgery I woke up completely deaf so that was a shock! It was not related at all to my Acoustic neuroma, sudden hearing loss happens in 1 ear and it just so happened to me in my only good ear. I have tinnitus in both ears as well. I have been searching for someone that has my same or similar Sanrio because the last few years I have been struggling!! I got sick in 2020 (idk if covid or not but I was on the couch for about 2 weeks) afterwards I noticed more hearing loss, severe tinnitus in both ears and balance issues to where I am constantly spinning and sick from it. It does not happen all the time but on my worse days. It's been a struggle working and keeping a job. I have not had a real job where I goto in 2 years now and fighting to get disability, even tho I would much rather work but it's impossible when I have my bad days and can't make it. I have been to my Dr so many times trying to figure it out and get okay but its SO exhausting!! I went to U of M Ann Arbor which they where so amazing during my surgery. I had Dr Arts and Dr Thompson on my teams. Dr. Arts retired a few years back... I miss him he was so great! I would love to hear how you are doing with things now that some years have passed. Hope all is great! Thank you for sharing your story, it has encouraged me to try to tell mine on here I hope very soon.

Hey brother, I have ringing in right ear for 3 months now I m getting facial nerve moving sensation sometimes over head , sometimes on sideface tingling sensation but OK when I sleep, did you had any facial nerve sensation symptoms. ?

Thanks for sharing Jake. I’ve been recently diagnosed with an AN measuring 1.5 x 0.8 x 0.7 located in the right internal auditory canal extending into the cerebellopontine angle and wrapped around the vestibular nerve system. The symptom that prompted me to see my family doctor was loud and persistent tinnitus that had recently developed in my right ear. My ENT recommended the observe and wait approach given it’s small size. The tinnitus has cause chronic insomnia and sleep deprivation which has affected my mental and physical health. Upon seeing my ENT a second time, he said if my symptoms and condition worsen in the next few months, then we can discuss gamma knife radiation as he didn’t recommend open surgery for someone my age, which is 63 years old. I’m still waiting for a date for a consult fro neurosurgeon.

How much time does face synkiness last??

Were you tried BAHA If so how was your experience. Would it help in cut off background noise and sound localisation. Plz shre

Isn't it difficult to do daily tasks going for job with unilateral hearing loss. Recently diagnosed with A.N...preparing for surgery

Hey Jake I would also like to thank you for the video. I got diagnosed approx 4 weeks ago with an acoustic neuroma just over 2.5 cm. I am due for surgery on the 18th December. I am very scared to say the least I am 58 yrs of age and trying to do my best in remaining calm until the surgery. I really hope I have a positive outcome like yourself. Kind Regards mate Kevin from Sydney Australia

Many thanks for this very positive account.

Thank you for sharing ur experience. I just had surgery on the 24th sept 2021.

I hope everyone is safe and healthy! Glad to see you good and healthy too. I’m a 19 year old girl who’s a bit of a hypochondriac. lately, or should I say weeks ago. Ive started having tinnitus ringings that sounds like it’s coming from the inner of my ear, rather loud sounds. Almost everyday. I’ve been getting frequent off balance and dizziness as well (not the type of motion sickness dizziness) the type of dizziness that it feels like I’m swaying my head sideways, or my inner head is spinning but my vision stays the same. I’ve had same symptoms months ago, and I was told I had fluids in my middle ear, took medication and antibiotics, nasal sprays, and now I’m okay. But lately it’s been returning, and worse, especially I go completely deaf whenever I sneeze, and my hearing is completely imbalance. I hate to jump to conclusions but I’m just scared, so your video and the comment section helped me calm down a bit. I have a ENT consultant scheduled this Thursday and I couldn’t be more anxious. maybe I should stay away from the internet. I hope everyone have a good day today!

thanks for the video. i have just been diagnosed with a 3cm tumor. i am having difficulties hearing well with dizziness and tiredness. hoping on recovering as well as you did.

Thanks mate, I have just been diagnosed with left sided acoustic neuroma, approx 1.4cm, my hearing in left ear is not too good and very loud ringing, I am now waiting for my neuro teams recommendation and then what decision to make.

Thanks for sharing this Jake!! I was diagnosed on June 7th. The size is 3cm. Hope you are still doing good. I also enjoy lifting weights 💪

This video is great. I was diagnosed with bilateral acoustic neuromas (both ears). My right ear has the biggest size (2.8 cm) and surgeons want me to have surgery. It’s soo hard deciding to accept surgery especially when my hearing is perfectly fine.

Can't belive their balance test was to make you sick until you passed out.

did u have any eye problems before diagnosed with the neuroma ?

Hi Jake. I really like these first hand accounts of what you went through. It gives a lot of great anecdotal info for anyone who's going through the same.

Had mine in 1992. It’s 2020 now.A few issues like tinnitus, balance problem, hearing cut-off in one ear, mild Bell’s palsy with tearing persist. Am 66 years old.Still on a super hectic lifestyle.Am my 102 year old mother’s caregiver. All credit is Almighty Gods who has provided more than our needs every single time. Surgery done in Chennai, India by an outstanding neurosurgeon. Take heart people with AN. God provides EVERYTHING.

Hi, did they make you fast before your surgery?

Hi. How are you now. Please update. Thanks for sharing

Thank you for sharing your story.....I am glad everything went well. Just curious post surgery ..since your lost your hearing did the ringing went away. I have ringing in the left ear and schedule for MRI to see if I have EN.

Please they r not cutting in Canada 🇨🇦, I’m using #cbdoil to shrink mine NO THC just cbdoil, my protocol is working for my self, sadly for profit health care promotes surgery, mine was inoperable..due to poor health, I stopped vaccines in 2010, 2014 I noticed I lost my hearing in my right ear, it sounded like Mickey Mouse, I saw a young audiologists who told me, get an mri w contrast , an diagnoses in dec 2016, the radiologist I saw said, it wasn’t cancer, so radiation may double the size of my tumour, really bad lungs made mine inoperable.. my husband forced me to take #cbdoil , it stopped my growth immediately, my health has improved steadily lost 100# so far, I take 15ml of cbdoil everyday, in 🇨🇦we have no real groups to support me, I’m literally by my self.. in Canada spectrums yellow oil has slowly repaired my sickened body, now if u can get flower cbdoil stronger would be beneficial.. when my tumours gone I will go public, to help others.. ❤️👉🏻🇨🇦🇨🇦

Hey Jake, seeing your video now in 2019. Little concerned for me, I have not been diagnosed yet but a day ago, I went to urgent care because for about a few months, I felt my ear clogged and I’ve felt like I’ve had some hearing loss. At the beginning I thought it was just wax building up but during my urgent care visit, the doctor ruled that out. I was prescribed prednisone to reduce any possible inflammation, but really it has work very little. I was referred to a ent doctor and, interestingly, they called me when I was told I had to make the call. That kinda concerns me. Sadly, when one looks up the symptoms that I have: hearing loss, ringing ear, and sometimes I lose balance, then it all indicates that it may be that tumor. I would like to know if you felt any hearing loss and if your ear felt clogged. I know this video is a few years old and I hope you are doing great man!

This is a tough place to be. I only have a 14mm acoustic neuroma, which is kinda good but prognosis is still not great. I think it would be naive to think my hearing is going to last in my left ear beyond the next few years. With small ones there are more options but, to me, this just makes it harder to decide what to do. Exploring Cyberknife atm but Translab offers the best outcomes, outside of losing hearing (which is probably going to happen anyway). Great video man - it's good to see an athletic guy posting about this because a concern I have is loss of physical ability and not being able to play hockey again.

Been there buddy. Keep watching it via MRI's. I had my first one on the right side in 2015. They went through behind the ear. First time I had no ill side effects besides loss of hearing. Fast forward 2 years, it grew back, and this time pressed on my facial nerve. I lost feeling on my right side, including lips and tongue. After my surgery I had BAD double vision (saw one image about 6-8" above the other). That slowly went away after a few weeks in baseline. If I look to my right I still get double vision, not so much to my left though. Fast forward about another 6 months, and I decided to go with Gamma Knife (Thank goodness they went away from the head brace contraption and now use a jason voorhees styled mask instead). Total side effects now is right sided deafness, coupled with rt sided facial/oral numbness. I also have MINOR loss of motor control for the lower lip on right side, but that has almost returned. Once in a while I'll feel a 'tingle' of nerve activity though. Next MRI in October. I had my first Surgery with the Lyerly Group in Baptist Downtown and my Second with Mayo Clinic Jacksonville (as well as the Gamma Knife).

I hope I can contact you please please I’m suffering

Very informative, unfortunately my son hasn't been as lucky as you. He is still in hospital 2 weeks after the op as i write. He has total paralysis to his left side of his face, total hearing loss in one ear, has to wear an eye patch over one eye as he has no control over that eye to close it so its permanently open. To top it off his eyesight has also been affected with double vision, his Neuroma was just over 4.5 and pushing on his brain stem. I can only pray that some things may partially restore, but its not looking good as the neurologist said it was the biggest he had seen and thats all he works on. I am please for you that you have recovered so well and thank you for the informative video.

Thank you Jake! So encouraging. I’ve been trying to get a better picture of the postoperative experience, and you’ve answered a lot of my questions.

Hi Jake I just had my surgery for an Acoustic Neuroma this past December. I have one sided deafness and I’m scheduled for and appointment to see if I qualify for a Bone Conduction hearing aid. But I’m not to excited about another surgery. What was the hearing device you were talking about? I’m interested in finding out if there are alternatives to having to go through another surgery.

Hi, I'm an acoustic neuroma survivor, twice operated on. You are so eloquent, this video is massively encouraging. Can I share this? Most Acoustic Neuroma suffers think they are alone, I have a UA-cam channel which I started out because of my AN so to share your Story would be great xx

Thank you for your videos. I am going in for surgery on May 7th and your videos have been very informative as to what I should expect. I have been living with the hearing loss for over a year and a half, but the balance issues didn't kick in until last November, and that is when I decided it was time to get this looked at. I was very surprised to find out I had an Acoustic Neuroma. I thought I was experiencing Meniere's Disease, and since there was no cure for that, I dragged my feet on getting the diagnosis. In all the Meniere's Info I found on the internet I never came across a reference to Acoustic Neuroma. Well I hope the truck doesn't hit me too hard. I have seen a few other videos from people, and it sounds like you came out pretty well. I am glad for you on that account, and thanks again for sharing your experience, it does help me with getting ready.

Any suppliment that reduce the tumor? I keep hearing tumeric will do this.

Thanks Jake for sharing. Having my surgery in a couple weeks. Hope my recovery goes as well as yours

Please tell me after surgery do you hear the words clearly?