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.
Can you provide some information who operated on you in chennai..name of doctor nd hospital address... I was also diagnosed with A.N.... Started searching good neurosurgeon and oto neurologist in India...plz answer me
Hi Jake - thank you so much for taking the time to post the video of your experiences with the Acoustic Neuroma Surgery - I have just been diagnosed and will need surgery straight away due to its size. Just know that your message made it all the way to Melbourne, Australia and I will sleep better tonight - thank you again!!
Hey Jennifer! Hopefully you're doing okay with everything. I'm sorry for the late reply. I'm not used to this RUclips video comment section. I'm glad the video reached you in Australia and I'm glad it helped ease your mind. Please keep me posted. I'll pray for a quick recovery.
Jake Warrington Hello Jake. Thank you for sharing your experience with A. N. It inspires me. My friend will undergo his surgery in Los Angeles. I hope he will be ok. I was so worried about it but now will tell him your story. Thanks and God bless. - Red
You're very welcome! I'm happy my experience can provide some hope. I went through a second surgery in November of 2016 and everything went well with that one as well. I'll provide an update to my experience with the second one as well in the near future.
Jake Warrington Hello again Jake. I was so happy with the news yesterday. He informed me that the surgery was successful. It is in San Francisco Hospital not in L.A. (I'm sorry) Thank you again Jake. I always listen to your testimony. Keep it up! May you inspire more people who are experiencing depression, fear and confusion. I just had my surgery too with different case. Thank you again.. you're such a brave man. May God be with you, God bless and stay happy and confident. :) - Red
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.
I am due for the 14th of September. The neurosurgeon told me that I will be losing my hearing on my left side and possible face paralysis too. I'm still being positive on my outlook and seing you videos as for sure being very informative. Have you made a full recovery since your surgery?
I'm fully recovered. They did my surgery in two parts. They debulked about 75-80% the first time and were hopeful that it wouldn't continue to grow. I wasn't that lucky and they had to do surgery again in November of 2016. Removing as much as they did the first time allowed the facial nerve to get tighter. The doctor described it as a piece of yarn that was not tight. When they went back in to remove the rest, the facial nerve was in great shape and the tumor was successfully removed. The doctor cautioned me that it could be a two part process, although I still was hoping it wouldn't be. My surgeons primary concern was to preserve the facial nerve. Make sure that is your surgeon primary concern as well. Losing my hearing on the left side wasn't fun, but I'll take that over a paralyzed half of my face. I wish you the best for a successful outcome. Keep me posted.
Thank you for the video brother. I just had my surgery on 24th sept and am recovering slowly at home. Facial nerve is good but i lost my balance and hearing from my left ear. I will start rehab soon and hopefully get back to normal and feed my family. Thank you again. God Bless You.
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.
Sean - I'm glad the videos helped and I pray for a positive outcome for your surgery and a speedy recovery. If you have any questions, please let me know.
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
Hi Kevin. It's totally understandable to have those feelings. I know that I had those same emotions before both surgeries (for different reasons). How is your balance and hearing currently in your AN ear? Praying for a positive outcome for you🙏
@@jakewarrington7344 Hey Jake I find some days it’s ok and others I notice I stray from side to side while walking, the hearing is the really bad part when sitting around without much noise I get that pinging sound in the bad side and also the slightest of noise sounds like an aircraft taking off from my head it’s all really confusing and I’m only 3 days from surgery my emotions are going insane and I’m getting quiet grumpy and need to keep that in check
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.
Hello Phil. Sorry for the late response. I hope that the gamma knife works for you to take care of the tumor and stops persistent tinnitus. At this point, have you already had the gamma knife procedure?
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.
Mark, I'm so sorry to hear about your son situation. I'm also sorry that I'm just seeing your post. I pray that he has made some improvement from when you commented on the video🙏.
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).
@@jakewarrington7344 Been alright, had random bouts of dizziness, hard to explain. Would last a few weeks at a time then go away. Had that a couple times. Next MRI is in October, and last few showed minimal to no signs of growth (hopefully this one is the same). How about yourself?
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.
Sorry to hear about your Acoustic Neuroma. You're right about having more options if it's smaller. Gamma Knife might be a great option for you. Things are still going well for me and I'm still keeping active. Not having hearing in the left ear is still a pain sometimes, but it hasn't hindered me from normal living.
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 RUclips channel which I started out because of my AN so to share your Story would be great xx
Hello! Thanks for the nice comments. As you know, AN surgery can be very scary and that's why I made the two videos. I wanted to give people some hope and something more positive than what was out there. I was nervous for both of my surgeries, but for different reasons. I didn't know what to expect the first time and I did know what to expect the second time:-) I don't have a problem if you share the video. Please feel free to share!
@@HydraTower I think it was around 3.5 cm's the first time and 2.8 cm's the second time. They are rough estimates lol I have ever sooooo slight weakness, which only really happened after my second op. The surgeon's goal during surgery is to protect your facial nerve whilst debulking/removing the tumour, they will do their very best to preserve the facial nerve. When is your surgery? x
Hey Jake, nice vid. Your story is really positive and reassuring, unlike some on RUclips. I know that everybody is different and I am in my late 50's and going for the retro sygmoid approah in a few weeks to remove my 2cm AN which is up against the brain stem. I hope I come through it as well as you. Hope you are doing great! Thanks again. Ray from Oz
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!
So my tumor was large. It left me w single sided deafness. The reason for the BAHA device. I want to say I am blessed and it could have been a different outcome but I have some facial weakness (not noticeable) and dealing w some minor eye issues. I’m 18 months post surgery! Overall I got an excellent care, had a great support system and blessed outcome!
I'm glad that you're healing up well and your outcome was good! The single-side deafness can be a pain sometimes, but it's manageable. I still enjoy music and just have to place myself properly when out in public. Take care!
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!
Hi Jake, Successful translab removal of the AN by Drs Nigel Biggs and Philip Chang at St Vincent's Private, Darlinghurst in October. Great result. Although the tumour had bisected the facial nerve, it was removed with no nerve impact at all. I was out in 4 days. I now have no hearing in left ear but am no more wobbly than before. I seem fully recovered.
@@kbilalahmad7438 my most alarming symptom were the blazing, headaches that would not go away. Once I had my eyes checked and my doctor discovered my optical nerves were swollen I went in for an MRI stat.
Jake Warrington I ended up having 4 total with them. Still getting used to it, but I went back to work yesterday so that's a start. Glad to see you are doing well after the second one!
Four total operations! Oh my goodness... How are you doing with everything? How has work been for you? I know that I didn't like the idea or reality of going through it twice. I could not imagine four times.
Jake Warrington I'm doing pretty great now. Feel a bit off at times, but it's getting better! Thanks for the video...helps to see how others deal with this
may I ask why did you both had to go through that more than a time? my mother has the same tumor and is going to have surgery in few weeks its 3 cm * 3.5 cm
i just found out i am diagnosed with acoustic neuroma 2 weeks ago. i appreciate that you broadcast yourself explaining your experience before and after surgery. mine is about 4 inches already advanced, and the doctor told me i will lose 100 percent left ear hearing 15 percent facial and unstable balance. i will most likely go through a surgery and finish off with radiation. anyways thanks again, your video helped me what to expect after surgery.
I'm sorry to hear that you're joining the club that no one asked to be a part of. Everyone's experience is different, just keep positive and know that there will be ups and downs during the recovery. When do you go in for surgery?
@@ultraspectrum9504 Same here.. 16 years ago I had prostate surgery and investigated all forms of treatment. I went with surgery to removed the gland due to the 10 year survival rate of 90%. I think I'd rather have facial problems than any hearing loss.
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.
Hello everyone. I too went to Michigan ENT. My AN was 1.3 cm. I just had surgery 10 days ago. Very slow recovery I’m still working on my balance and dizziness. Have a post op appointment with Doctor in 2 days so hopefully that goes well.
Hey Jake I'm glad you're doing fine. I have a few questions about the risks of having surgery done. Well I was born with nf2 so I'm use to having surgery done. Unfortunately I'm losing hearing in both ears due to the tumors I have in both ears. I'm considering surgery but I was wondering if you lost completely your hearing & if you had any facial paralysis?
I'm sorry to hear about your particular situation. The type of surgery that I had (translab) ensured that I did lose hearing in my left ear. It was already damaged due to the tumor, so I evaluated my options and decided to go that route. There are other surgical approaches that increase the odds of you keeping your hearing, however, you need to consult with your doctor to determine the best approach for you. I was very fortunate and had no facial paralysis. If you have any other questions, please let me know. Take care, Jake
Janene O'Neil You're welcome! Do you have an acoustic neuroma? I will be posting a new video at some point soon. I went through a second stage removal of the last 30% of my Acoustic Neuroma. Everything went well, but every surgery is different. I'll share my experience for those interested in hearing. Take care, Jake
Jake Warrington they want to do mri on my head with contrast study. I was diagnosed with glue ear....now ent states I dont have that. I believe it's my teeth on that side. I'm afraid of the mri. Did they have to knock you out for that?
Jake Warrington oh thank you. ...I did it and I'm tumor free.....they believe a virus damaged my hearing....no signs of trauma or anything....maybe it will get better....it's wait and see....80% of my hearing is gone in right ear. Thank you for educating people .
Janene O'Neil I'm so happy to hear the report! Congratulations! Having hearing in one ear has not been to big of an adjustment...there could be worst things in life:-)
Normal living hasn't been bad at all. I got back to work after 3 weeks. I'm a Vice President for our company and I have no issues with my normal job responsibilities. Most people don't even know that I'm deaf in my left ear. The only time it's an issue is when I'm walking in the plant with someone and they're speaking on my left side. I typically just make sure that I have them walking on my good side. Praying for a positive outcome for your surgery 🙏
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
Hello. Sorry for slow response. I'm just seeing this message. My An was larger than they initially thought from the MRI. I never had bleeding on the brain. How are you doing?
My phone conversations are good. A lot of background noise bothers me when around a lot of people, but phone calls are good, because I can have the phone pressed against my ear.
Please provide an update soon. I was diagnosed 6 months ago. Was recommended FSR or middle fossa. Trying to decide which route to go and I am so scared since I am already a type 1 diabetic
Hello. I decided to go with the translab approach due to the damage that had already occurred to my hearing. The doctor told me that translab presented less opportunity for issues after surgery as well, such as headaches. How is your hearing?
HI, thank you for your reply. I can still hear in my AN side. I believe it has 76% hearing on my left side. I am 39 years old and the size of the AN is 9.9x5 MM..it was 8.5x4x4 mm 6 months ago. One surgeon recommends FSR or translab. One (Dr. Friedman from KECK) recommends middle fossa since I still have hearing.
That's a pretty good amount of hearing left. Did they provide any prognosis on how successful they thought they would be at saving your hearing and the potential for future headaches?
So I am scheduled to have a retrosigmoid approach in NYU Langone on April 10th. The operation will be performed by Dr. Golfinos and Dr. Roland. Still kind of scared though. You had mentioned that you prepared before your procedure. Can you please advise as to what preparations you made? Any exercise regimen? You also mentioned frankincense essential oil. Can you elaborate on this more? How are you doing by the way? Thank you.
hey J i had a MRI Done.. Not sure whats going on..I HAVE RINGING IN BOTH EARS MY RIGHT SIDE IS LOUDER THEN THE LEFT. I was having real bad headaches did not feel like eating some days the smell of food did not agree with me.. Is this Acoustic schwannoma.... i do have hearing lost i know that in both ears.
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. ?
Hello Skinn. I definitely had facial nerve sensations. That is what first prompted me to seek answers. I had numbness on the left side of my face, tongue and lip. Hopefully, you're doing well.
Hi, I've tried turmeric in all its forms and nothing happen.. I reccomend you if the size of tour tumor allows it to have radiation. Mine, I left it grow for about four years since the diagnose, now I'm heading to surgery😢...
Quick question. Can you develop an acoustic neuroma without any unilateral hearing loss? Because I've searched up online and I've heard that you can develop an acoustic neuroma but in the rare occasion you don't lose any of your hearing until you have the surgery and end up loosing it all which sounds pretty scary
+Nathgta09. I'm sorry for the late response. I'm not sure why I do always get notified of comments. AN's affect everyone differently. My hearing was already impacted by the time I had surgery, however, if it would have been in good, the doctor would have tried a different approach than translab. The translab approach does result in complete hearing loss on the AN side. Do you have an AN?
Hello Jake, really quick, my mom on Feb 25th started to experience the same exact symptoms as you. Left side numbness on face, tongue numb she couldnt swallow and was scared to bite. Also, her mouth would go completely dry (probably the numbness). She would have balance problems and feels like she couldnt breathe properly well. Her ear (left) has always been bothering her with weird noises, whooshes ringing etc. do you think this could possibly be it? We have done an array of tests and blood work and nothing has shown up. Right now we are waiting for an MRI from the head to rule off anything. I hope the ear is also involved with the MRI. She will have episodes and this makes it hard for her to sleep because she will feel it coming as soon as she wants to doze off
Sorry for the late response, Raphael. For some reason I do not get notified when someone comments on the video. Did your Mom ever find anything out about what was causing her issues? I hope all is going well.
Raphael, AN is not common tumor, it could be wax sometimes, A GP will rinse the ear with water and if it didn't go you have to see an ENT first, then an MRI. Hope your mum will be alright.
Nice video.You doing very well.I can see that translab is much safer for facial nerve,you don't have any facial palsy.I had retrosigmoid on my 3cm AN, it was different experience,much worse I would say.
+MB031 Thanks for the feedback! The main advantage that they shared with me of the translab was the preservation of facial nerve. My hearing and balance nerve w already compromised, so the decision was easy.
Hi Jake, thanks for sharing your experience. Can i knw how close was your tumor to the brainstem? and also how much have you spend for this full treatment? Appreciate your help!
Joshua, Sorry for just seeing your comment. I actually do not remember how close it was to the my brainstem. It was definitely pushing on my facial nerves. My tongue still feels weird at time. Did you have to get surgery?
I've posted a part two video today on how things are going and the results of my second surgery that took place on November 8th, 2017. Here is the link ruclips.net/video/L4meXexg8zM/видео.html
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.
Love to you.. god is truely Great
Can you provide some information who operated on you in chennai..name of doctor nd hospital address...
I was also diagnosed with A.N....
Started searching good neurosurgeon and oto neurologist in India...plz answer me
Thomas can you provide information regarding surgery who operated in Chennai.
Now I am in searching of good doctor.
Am from south India
How you managing with single side hearing loss
@@kmnagasrinivaskovvuru6147 vestibular rehab and adaptation of environment..its a new normal that u have to learn to live with.
Thanks awesome to listen to your testimony I am also going in for surgery soon great to hear s positive outcome....
You're welcome, Shane. I wish you the best with your surgery 👍
Hi Jake - thank you so much for taking the time to post the video of your experiences with the Acoustic Neuroma Surgery - I have just been diagnosed and will need surgery straight away due to its size. Just know that your message made it all the way to Melbourne, Australia and I will sleep better tonight - thank you again!!
Hey Jennifer! Hopefully you're doing okay with everything. I'm sorry for the late reply. I'm not used to this RUclips video comment section. I'm glad the video reached you in Australia and I'm glad it helped ease your mind. Please keep me posted. I'll pray for a quick recovery.
Jake Warrington
Hello Jake. Thank you for sharing your experience with A. N. It inspires me. My friend will undergo his surgery in Los Angeles. I hope he will be ok. I was so worried about it but now will tell him your story. Thanks and God bless.
- Red
You're very welcome! I'm happy my experience can provide some hope. I went through a second surgery in November of 2016 and everything went well with that one as well. I'll provide an update to my experience with the second one as well in the near future.
Jake Warrington Hello again Jake. I was so happy with the news yesterday. He informed me that the surgery was successful. It is in San Francisco Hospital not in L.A. (I'm sorry) Thank you again Jake. I always listen to your testimony. Keep it up! May you inspire more people who are experiencing depression, fear and confusion. I just had my surgery too with different case. Thank you again.. you're such a brave man. May God be with you, God bless and stay happy and confident. :)
- Red
Hi Jennifer may i know how you go with the surgery? where about you did it in Melboure St Vincent? mine is 4.5cm. thanks
Glad to hear your better!
Thanks Joey!
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.
You're welcome. When are you having your surgery? Hope you have a positive outcome with your surgery.
I am due for the 14th of September. The neurosurgeon told me that I will be losing my hearing on my left side and possible face paralysis too. I'm still being positive on my outlook and seing you videos as for sure being very informative. Have you made a full recovery since your surgery?
I'm fully recovered. They did my surgery in two parts. They debulked about 75-80% the first time and were hopeful that it wouldn't continue to grow. I wasn't that lucky and they had to do surgery again in November of 2016. Removing as much as they did the first time allowed the facial nerve to get tighter. The doctor described it as a piece of yarn that was not tight. When they went back in to remove the rest, the facial nerve was in great shape and the tumor was successfully removed. The doctor cautioned me that it could be a two part process, although I still was hoping it wouldn't be. My surgeons primary concern was to preserve the facial nerve. Make sure that is your surgeon primary concern as well. Losing my hearing on the left side wasn't fun, but I'll take that over a paralyzed half of my face. I wish you the best for a successful outcome. Keep me posted.
Thank you for the video brother. I just had my surgery on 24th sept and am recovering slowly at home. Facial nerve is good but i lost my balance and hearing from my left ear. I will start rehab soon and hopefully get back to normal and feed my family. Thank you again. God Bless You.
@@mrutube5880 how are you doing now? I had mine almost 2 years ago. Fully recovered. Lost my right hearing.
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.
I'm the video could be of some help👍.
Thanks Jake for sharing. Having my surgery in a couple weeks. Hope my recovery goes as well as yours
looks like I'll be having surgery later this month/early April.
Sean - I'm glad the videos helped and I pray for a positive outcome for your surgery and a speedy recovery. If you have any questions, please let me know.
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
Hi Kevin. It's totally understandable to have those feelings. I know that I had those same emotions before both surgeries (for different reasons). How is your balance and hearing currently in your AN ear? Praying for a positive outcome for you🙏
@@jakewarrington7344 Hey Jake I find some days it’s ok and others I notice I stray from side to side while walking, the hearing is the really bad part when sitting around without much noise I get that pinging sound in the bad side and also the slightest of noise sounds like an aircraft taking off from my head it’s all really confusing and I’m only 3 days from surgery my emotions are going insane and I’m getting quiet grumpy and need to keep that in check
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.
Hello Phil. Sorry for the late response. I hope that the gamma knife works for you to take care of the tumor and stops persistent tinnitus. At this point, have you already had the gamma knife procedure?
@@jakewarrington7344 hi Jake, no I haven’t had the procedure yet. I’m still in wait and see mode until the tumour reaches 2 cms in size.
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.
Mark, I'm so sorry to hear about your son situation. I'm also sorry that I'm just seeing your post. I pray that he has made some improvement from when you commented on the video🙏.
Many thanks for this very positive account.
You're very welcome 👍
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).
Sorry I missed your comment when you posted it. How have you been doing?
@@jakewarrington7344 Been alright, had random bouts of dizziness, hard to explain. Would last a few weeks at a time then go away. Had that a couple times. Next MRI is in October, and last few showed minimal to no signs of growth (hopefully this one is the same).
How about yourself?
God Bless
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 💪
You're welcome! I'm still doing great. When are you having your surgery?
@@jakewarrington7344good to know that💪 .my surgery will be in December. Thanks for asking. Greetings from Paraguay 🇵🇾
the surgery went great Braun is doing great now!💪
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.
Sorry to hear about your Acoustic Neuroma. You're right about having more options if it's smaller. Gamma Knife might be a great option for you. Things are still going well for me and I'm still keeping active. Not having hearing in the left ear is still a pain sometimes, but it hasn't hindered me from normal living.
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 RUclips channel which I started out because of my AN so to share your Story would be great xx
Hello! Thanks for the nice comments. As you know, AN surgery can be very scary and that's why I made the two videos. I wanted to give people some hope and something more positive than what was out there. I was nervous for both of my surgeries, but for different reasons. I didn't know what to expect the first time and I did know what to expect the second time:-) I don't have a problem if you share the video. Please feel free to share!
Hi, I'm curious how big your was? I just looked at your channel and your facial muscles look normal. I'm a bit worried in that department.
@@HydraTower I think it was around 3.5 cm's the first time and 2.8 cm's the second time. They are rough estimates lol I have ever sooooo slight weakness, which only really happened after my second op. The surgeon's goal during surgery is to protect your facial nerve whilst debulking/removing the tumour, they will do their very best to preserve the facial nerve. When is your surgery? x
Hey Jake, nice vid. Your story is really positive and reassuring, unlike some on RUclips. I know that everybody is different and I am in my late 50's and going for the retro sygmoid approah in a few weeks to remove my 2cm AN which is up against the brain stem. I hope I come through it as well as you. Hope you are doing great! Thanks again. Ray from Oz
+Ray Rincheval Thanks for the feedback! Sorry for the late response. How did your surgery go? How are you recovering?
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!
Hi Chris. You're welcome! I'm just seeing your comment. How are you healing up from everything?
So my tumor was large. It left me w single sided deafness. The reason for the BAHA device. I want to say I am blessed and it could have been a different outcome but I have some facial weakness (not noticeable) and dealing w some minor eye issues. I’m 18 months post surgery! Overall I got an excellent care, had a great support system and blessed outcome!
I'm glad that you're healing up well and your outcome was good! The single-side deafness can be a pain sometimes, but it's manageable. I still enjoy music and just have to place myself properly when out in public. Take care!
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!
I'm glad the video helped you👍. How did your ENT appointment go?
Plz reply how are u right now
Hi Jake,
Successful translab removal of the AN by Drs Nigel Biggs and Philip Chang at St Vincent's Private, Darlinghurst in October. Great result. Although the tumour had bisected the facial nerve, it was removed with no nerve impact at all. I was out in 4 days. I now have no hearing in left ear but am no more wobbly than before. I seem fully recovered.
+Ray Rincheval Congratulations on your positive outcome! Sorry for the late response.
thank you so much for your video! im now 9 days post op from my 4.5cm AN, had the translab approach and come out with 85% of it gone.
Sorry for the late replay. I'm glad you liked the video. How are are recovering from your translab surgery? Hope all is well!
What was your initial symptoms?
@@kbilalahmad7438 my most alarming symptom were the blazing, headaches that would not go away. Once I had my eyes checked and my doctor discovered my optical nerves were swollen I went in for an MRI stat.
God bless you!!!!!!!!!!!!!!
Thank you! God Bless you as well.
I also went to Michigan ear institute... They did a great job! They removed a 3.5cm x 3.6.
I just had a second AN surgery and they did a great job on that one as well!
Jake Warrington I ended up having 4 total with them. Still getting used to it, but I went back to work yesterday so that's a start. Glad to see you are doing well after the second one!
Four total operations! Oh my goodness... How are you doing with everything? How has work been for you? I know that I didn't like the idea or reality of going through it twice. I could not imagine four times.
Jake Warrington I'm doing pretty great now. Feel a bit off at times, but it's getting better! Thanks for the video...helps to see how others deal with this
may I ask why did you both had to go through that more than a time? my mother has the same tumor and is going to have surgery in few weeks its 3 cm * 3.5 cm
Great video thank you.
You're very welcome. Sorry for the late response. I'm just seeing your comment.
i just found out i am diagnosed with acoustic neuroma 2 weeks ago. i appreciate that you broadcast yourself explaining your experience before and after surgery. mine is about 4 inches already advanced, and the doctor told me i will lose 100 percent left ear hearing 15 percent facial and unstable balance. i will most likely go through a surgery and finish off with radiation. anyways thanks again, your video helped me what to expect after surgery.
I'm sorry to hear that you're joining the club that no one asked to be a part of. Everyone's experience is different, just keep positive and know that there will be ups and downs during the recovery. When do you go in for surgery?
Just look into the size of the tumor and cyst - what sort of the impact the tumor have on your life etc. Surgery is the last resort in my opnion.
@@ultraspectrum9504 Same here.. 16 years ago I had prostate surgery and investigated all forms of treatment. I went with surgery to removed the gland due to the 10 year survival rate of 90%. I think I'd rather have facial problems than any hearing loss.
What was your initial symptoms?
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.
Hi Bret! You're welcome. I hope you experience a positive outcome with your surgery.
Hi Brett I also have 1.4 cm AN. How did u go with your treatment? Have u decided as yet?
Hello everyone. I too went to Michigan ENT. My AN was 1.3 cm. I just had surgery 10 days ago. Very slow recovery I’m still working on my balance and dizziness. Have a post op appointment with Doctor in 2 days so hopefully that goes well.
@@philavanhphraxayavong1373 underwent translbyrinthine approach?
Hope u r doing well?
@@biancaschembri3705 have you gone through the surgery?
Your experience?
Hey Jake I'm glad you're doing fine. I have a few questions about the risks of having surgery done. Well I was born with nf2 so I'm use to having surgery done. Unfortunately I'm losing hearing in both ears due to the tumors I have in both ears. I'm considering surgery but I was wondering if you lost completely your hearing & if you had any facial paralysis?
I'm sorry to hear about your particular situation. The type of surgery that I had (translab) ensured that I did lose hearing in my left ear. It was already damaged due to the tumor, so I evaluated my options and decided to go that route. There are other surgical approaches that increase the odds of you keeping your hearing, however, you need to consult with your doctor to determine the best approach for you. I was very fortunate and had no facial paralysis. If you have any other questions, please let me know. Take care, Jake
Jake Warrington thank you for replying. I'm going to see my neurosurgeon soon. For the mean time I'm staying positive that all will go well.
thank you
Janene O'Neil You're welcome! Do you have an acoustic neuroma? I will be posting a new video at some point soon. I went through a second stage removal of the last 30% of my Acoustic Neuroma. Everything went well, but every surgery is different. I'll share my experience for those interested in hearing. Take care, Jake
Jake Warrington they want to do mri on my head with contrast study.
I was diagnosed with glue ear....now ent states I dont have that. I believe it's my teeth on that side.
I'm afraid of the mri.
Did they have to knock you out for that?
Sorry for the late reply. No need to be fearful of the MRI. It's just crowded and noisy.
Jake Warrington oh thank you. ...I did it and I'm tumor free.....they believe a virus damaged my hearing....no signs of trauma or anything....maybe it will get better....it's wait and see....80% of my hearing is gone in right ear.
Thank you for educating people .
Janene O'Neil I'm so happy to hear the report! Congratulations! Having hearing in one ear has not been to big of an adjustment...there could be worst things in life:-)
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 :-)
Hello. Sorry for the slow response. I'm just seeing your comment. I'm glad you're doing good. It's definitely an experience to go through.
Isn't it difficult to do daily tasks going for job with unilateral hearing loss.
Recently diagnosed with A.N...preparing for surgery
Normal living hasn't been bad at all. I got back to work after 3 weeks. I'm a Vice President for our company and I have no issues with my normal job responsibilities. Most people don't even know that I'm deaf in my left ear. The only time it's an issue is when I'm walking in the plant with someone and they're speaking on my left side. I typically just make sure that I have them walking on my good side. Praying for a positive outcome for your surgery 🙏
You are a very kind person jake.
Thank you so much.
Your words are giving me boost..
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
Hello. Sorry for slow response. I'm just seeing this message. My An was larger than they initially thought from the MRI. I never had bleeding on the brain. How are you doing?
Please tell me after surgery do you hear the words clearly?
Hello Emma! I absolutely hear words clearly. The tumor only effected hearing in on ear and my other ear is great.
@@buckeyesportsvideo2006
After surgery do you facing any problem on phone conversation with good ear when were in outside
My phone conversations are good. A lot of background noise bothers me when around a lot of people, but phone calls are good, because I can have the phone pressed against my ear.
Please provide an update soon. I was diagnosed 6 months ago. Was recommended FSR or middle fossa. Trying to decide which route to go and I am so scared since I am already a type 1 diabetic
Hello. I decided to go with the translab approach due to the damage that had already occurred to my hearing. The doctor told me that translab presented less opportunity for issues after surgery as well, such as headaches. How is your hearing?
HI, thank you for your reply. I can still hear in my AN side. I believe it has 76% hearing on my left side. I am 39 years old and the size of the AN is 9.9x5 MM..it was 8.5x4x4 mm 6 months ago. One surgeon recommends FSR or translab. One (Dr. Friedman from KECK) recommends middle fossa since I still have hearing.
That's a pretty good amount of hearing left. Did they provide any prognosis on how successful they thought they would be at saving your hearing and the potential for future headaches?
So I am scheduled to have a retrosigmoid approach in NYU Langone on April 10th. The operation will be performed by Dr. Golfinos and Dr. Roland. Still kind of scared though. You had mentioned that you prepared before your procedure. Can you please advise as to what preparations you made? Any exercise regimen? You also mentioned frankincense essential oil. Can you elaborate on this more? How are you doing by the way?
Thank you.
Do not do surgery -monitor it - see naturotherapist and ayurvedic doctor. or may be radiation - thats it
hey J i had a MRI Done.. Not sure whats going on..I HAVE RINGING IN BOTH EARS MY RIGHT SIDE IS LOUDER THEN THE LEFT. I was having real bad headaches did not feel like eating some days the smell of food did not agree with me.. Is this Acoustic schwannoma.... i do have hearing lost i know that in both ears.
You must first go to an ENT specialist, then an MRI - i don't think you have AN
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. ?
Hello Skinn. I definitely had facial nerve sensations. That is what first prompted me to seek answers. I had numbness on the left side of my face, tongue and lip. Hopefully, you're doing well.
Hey Jennifer! How'd you go? I'm up at Emerald Bch NSW and go in for my op in a few weeks.
did u have any eye problems before diagnosed with the neuroma ?
No eye problems, just balance, hearing and facial numbness.
Thank you for sharing, glad to see your ok, I have a question for you, did you have ringing in the ear ?
Sorry for the late response. I never did have much ringing in my ear. Occasionally, but nothing consistent.
Any suppliment that reduce the tumor? I keep hearing tumeric will do this.
Hi, I've tried turmeric in all its forms and nothing happen.. I reccomend you if the size of tour tumor allows it to have radiation. Mine, I left it grow for about four years since the diagnose, now I'm heading to surgery😢...
I'm not aware of a supplement that will reduce the size of the tumor.
@@mercedesgomez3406 I think I would opt for radiation also.
Quick question. Can you develop an acoustic neuroma without any unilateral hearing loss? Because I've searched up online and I've heard that you can develop an acoustic neuroma but in the rare occasion you don't lose any of your hearing until you have the surgery and end up loosing it all which sounds pretty scary
+Nathgta09. I'm sorry for the late response. I'm not sure why I do always get notified of comments. AN's affect everyone differently. My hearing was already impacted by the time I had surgery, however, if it would have been in good, the doctor would have tried a different approach than translab. The translab approach does result in complete hearing loss on the AN side. Do you have an AN?
No i don't have an Acoustic Neuroma but i just was told that you can develop an AN and not have any hearing loss but i heard its quite rare.
Jake Warrington could you tell where and who do for you the surgery because my mom do the surgery in Thailand
I had my surgery at Michigan Ear Institute Dr . Babu was my physician. I wish the be for your Mom.
Hello Jake, really quick, my mom on Feb 25th started to experience the same exact symptoms as you. Left side numbness on face, tongue numb she couldnt swallow and was scared to bite. Also, her mouth would go completely dry (probably the numbness). She would have balance problems and feels like she couldnt breathe properly well. Her ear (left) has always been bothering her with weird noises, whooshes ringing etc. do you think this could possibly be it? We have done an array of tests and blood work and nothing has shown up. Right now we are waiting for an MRI from the head to rule off anything. I hope the ear is also involved with the MRI. She will have episodes and this makes it hard for her to sleep because she will feel it coming as soon as she wants to doze off
Sorry for the late response, Raphael. For some reason I do not get notified when someone comments on the video. Did your Mom ever find anything out about what was causing her issues? I hope all is going well.
Raphael, AN is not common tumor, it could be wax sometimes, A GP will rinse the ear with water and if it didn't go you have to see an ENT first, then an MRI. Hope your mum will be alright.
Were you tried BAHA
If so how was your experience. Would it help in cut off background noise and sound localisation.
Plz shre
I would be glad if you give information abt BAHA
I haven't seen any recent replies. How are you today?
ishootstuff I'm doing very well! I posted a part 2 video today on how things are going. I hope you're doing well.
Nice video.You doing very well.I can see that translab is much safer for facial nerve,you don't have any facial palsy.I had retrosigmoid on my 3cm AN, it was different experience,much worse I would say.
+MB031 Thanks for the feedback! The main advantage that they shared with me of the translab was the preservation of facial nerve. My hearing and balance nerve w already compromised, so the decision was easy.
Hi Jake, thanks for sharing your experience. Can i knw how close was your tumor to the brainstem? and also how much have you spend for this full treatment? Appreciate your help!
Joshua, Sorry for just seeing your comment. I actually do not remember how close it was to the my brainstem. It was definitely pushing on my facial nerves. My tongue still feels weird at time. Did you have to get surgery?
I think I'm dealing with this now, did u experience nystagmus in your eye?
No, I never experienced that before.
I hope I can contact you please please I’m suffering
I'm sorry that I did not see your comment. How are you doing?
Did you have any Tinnitus issues?...
Paws n Claws - I didn't struggle with tinnitus as all. I was very fortunate in that regard. When did you have your surgery?
I've posted a part two video today on how things are going and the results of my second surgery that took place on November 8th, 2017. Here is the link ruclips.net/video/L4meXexg8zM/видео.html
I don't understand English, what was the measurement of yours?
Hi Jessica. My tumor was 3.2 cm.