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Thankyou. I know these are a few years old now but just wondered how you are doing and how many years post op you are? I am awaiting surgery myself. Thankyou

How many days you go for work, after acoustic neuroma microsurgery?

It’s been 4 weeks from I had my Gamma knife surgery for my Acoustic Neuroma and my Balance is terrible! I feel so dizzy and all the same symptoms you have basically. I live in Belfast Northern Ireland and the worst thing for me is loneliness because my ex husband and I got Divorced 8 yrs ago and I never found anyone else and now I live alone. I wish you a the best and glad you do have a wife to help you and for company.

Thank you and i wish you the best from the Netherlands your video’s help me and keep je going on thank you so much.!

I went from eating sugar on all of my starches to not eatin sugar at all.

Ed, thank you so much for making these videos, they're so very informative for me personally, and great to also share with others who may be dealing with these same issues or for those who do not fully understand what you're experiencing . It's extremely difficult for me to verbalize and speak what I'm feeling to the doctors or anyone. I don't know if it's anxiety, lack if blood flow to my brain, or everything. In my case I have not yet had surgery, or Gamma Knife, but I am experiencing a lot of the symptoms that you have. I am on very strong painkillers, Gabapentin and anti-anxiety medication even though I wish I could manage without them. I've been having annual MRI's so they've been monitoring the growth since 2015 when it was found by accident. This January 2023 it's grown some more, and it's ( 9cm x 9cm x 1cm). It's also a Vestibular Schwannoma/acoustic neuroma, growing in a nerve sheath in between the carotid artery and internal jugular vein also on the left side for me. So, something's causing very sudden stabbing neck pain and headaches that can last for two weeks. It's just torture. The room feeling as if it's rolling end over end is a new issue, and it's happened several times now without much warning at all. This began last month, in March. Neurosergeon at UM Sylvester Miami has my latest MRI, and CT SCAN done this month on the 10th. She doesn't see anything in the reports that would cause dizziness, and of course since pain cannot be seen, she believes that the tumor and the headaches are unrelated. My pain management Dr. also saw my CT SCAN report, and he said yes, this can definitely be a cause for my dizziness, (vertigo.) And as I'm sure you know already, stress leading to anxiety only increases and magnifies these issues mentioned. I'm also caring for my aging mom who was recently diagnosed with atrophy of the brain. I'm not married. I commend your wonderful wife for being there for you, and you also Ed for being brave enough and able to somehow find the energy to even make these videos. You put into words what I cant. Onto video #1 now. -Nelson

Hi, thanks for your videos! Please tell me what size your tumor was when you found out you were having surgery!?

Hey stranger. I have dad's favorite ring. Just wondering if you wanted it, since you took care of his funeral stuff? I already have stuff of his to remember him by.

How long were you on the steroids after surgery? I had an acoustic neuroma surgery end September 2022, so I’m almost 4 months post surgery and still have significant facial palsy. Was on steroids only about 2 weeks post surgery. I’m learning everybody’s experience is different from one another. My surgery was 8 hours to remove 3cm. x 1.5cm. X .4cm. tumor.

Has your balance returned to 100% perfectly normal?

Hey thank you for the videos I just had surgery on May and is been hard for me My face got paralyzed but is doing better the headaches are very bad hopefully they will go away I like those hearing aid’s cool to bad not to many information About the acoustic neuroma in the internet Thank you so much for thanking the time of recording this videos. 😊

Hello Ed, I'm curious if you got your MRI's with contrast (Gadolinium) or without contrast before your acoustic neuroma surgery? Gadolinium is a heavy metal and a neurotoxin. It is only safe if the Gadolinium stays attached to its carrier molecule and gets quickly excreted in the urine.

hi Ed, my name is Christine and I’m two years out from my surgery completely lost my hearing, I have still have dizziness and that bubblehead thing still happens. I have yet to find any way of a cure. There are meds out there but the side effects of terrible matter of fact I think it makes it worse. I’m just curious how are you doing today? Has it gotten better for you? Or did you find maybe medication that helped you with the dizziness and wackiness. it is very hard living like this and I believe it’s going to be like this forever. I was very active before my surgery even rode a Harley but I don’t think I’ll ever be able to safely ride again I barely can walk without bumping into a tree.lol

My issues started with an ear infection 3 years ago. I have vertigo, muffled hearing, fullness/clogged ear only in right ear. I'm hoping mine is not an acoustic neuroma. MRI is coming up soon to check. My sister had brain cancer and really can not even imagine having to go through what she did. Thank you for sharing.

Awesome video, and thanks for sharing your experience. I was diagnosed with an acoustic neuroma in September of last year and also had the surgery in the same month. My symptoms were deafness in my left ear, facial tingling and balancing issues. The surgery was around 10hrs. I stayed in the hospital for 3weeks and 2weeks in rehab. I had to learn to walk again, and my balance is still an issue(I still walk with a cane),I have partial left side facial paralysis (but the ENT said it should come back, and lately it’s been a twitch and tingling feeling), I had to have a weight installed in my eyelid because my eye wasn’t shutting fully (I have constant dry eye). No one told me that I would have light sensitivity, I can’t go out without sunshades. But all in all I’ve improved a lot and I’m great full for being here. I also forgot to mention that the surgeons removed 90% of the tumor and the other 10% I had treated with gamma knife radiation in January of this year. I have a question, did you experience tightness in your head and tenderness near the surgical site for a while after your surgery? It’s been 8 months since my surgery and I still experience the tightness and slight tenderness. I’m kind of scared about because this experience has me on edge for every little thing. I take my next MRI in August to see how things are going. I’m nervous but I’m striving to be optimistic. For everyone that’s experienced this and has made it I commend you

hello, question. hope you reply. is your surgery went at the back of your head? thank you

Ed, thank you so much for putting these videos. I’m 7 months post-op retrosigmoid. Mine was 3cm in size and I’m experiencing many of the same issues with my short term memory and vestibular issues. I went to vestibular therapy for about 4 months and I feel more sure-footed, but I still have the constant feeling of dizziness and disorientation like you do whenever I move my head. Did that eventually go away for you? I have driven a few times short distances, but I don’t feel comfortable driving anything beyond 2 or 3 miles.

What were you initial symptoms?? I have the ringing in my left ear, fullness like not clogged but not under water I think I can still hear, very off balance , veritgo, dizziness, nausea, mirgraines, headaches, fatigue, I have a mri on Monday to see if I have AN

Looking good! :)

I had Ghama knife and my neuroma is growing again. Waiting on drs to decide on surgery is stressful. I too suffer from all of ur symptoms wow. Glad to hear u are on your way to a healthier life... (or a new normal)

Part 7 plz...

I hope I will get better like you

How long after your surgery until you could drive? I am scheduled for translab in July, and have an hour commute to work. I am worried about how long it will be until I am able to get back to work. Thank you.

So I know this was 2 years ago, but I was told by an urgent care doctor that theres a possibility that I may also have an acoustic neuroma because I have been having really bad vertigo/balance issues, for about 2 years now. I've set up an appointment with an ENT but I've been doing a lot of research. I'm wondering if you were experiencing a fullness feeling in your ear, or extreme dizziness. I havent noticed a major hearing issue, just a really annoying ringing, buzzing or almost like a vibration. Balance is my biggest complaint, and migraines.

How are you doing now? still feeling dizzy ?? My Surgery is scheduled on 20 December 2018 so I'm kind of freaked out...

Hang in there Ed. You are very brave and very inspiring. You are in my thoughts and prayers and will remain there.

Hi I love watching your posts I am nearly 4 months post op and a lot of what you experience I do too and it helps me to understand what I am experiencing I’m not alone and it’s not just me No one has told me really what to expect after surgery just the basics really and I’m not sure of the do’s and donts at the moment but I will make sure I ask when I go to my follow up appointment Thankyou I’m from the 🇬🇧 uk

Any hope for insurance coverage? I was told by my doctor years ago that I would just go deaf and don't bother trying hearing aids. I would love to be able to hear out of my left ear after 7 years. I have tried hearing aids anyway to no avail , but have not been introduced to them....

Just came across your videos. I had AN operation 5 years ago. I'm a lot older. Your descriptions are spot on although I didn't have the pain you did. I see a medical researcher in Boston just in case they have any suggestions about the dizziness which continues to plague me but as you say, it's the new normal and you start to get used to it. Very interesting about the hearing aid -- I should give it a try. Thanks for the videos. I would give you a hug if I could.

Thanks for the info on hearing aid, I have been living 13 yrs with a AN and no hearing on my Left side so I want to get some of these..

Great video! Hi, I was just recently diagnosed with an Acoustic Neuroma. I have some questions for you. What size was your tumor and what approach did they do? How long have you been using a cell phone? Did you have ringing in your ear?

For Vestibular?

Are on Disability too?

You sound so much more positive. Healing takes so long, I know. I hope the dizziness and pain go away for you.

Hi Ed. I'm undergoing the procedure soon and hope it goes as well as yours. Can I ask how large was your neuroma?

One year is not enough to see all improovments,it's very individual it can take years,most of the doctors say 2 years is the peak.I'm 20 mo postop now and finally getting back to new normal.The dizziness will get much better around 18mo postop,at least my case.I used to have fobias of falling shelfes when walking aisles at the grocery store and get really unsteady there,but holding shopping cart helped me a lot.I'm doing well now,I'm glad the hell is behind me..good luck and hold on. :)

Hello Ed - thank you for making this video series. I was diagnosed with an acoustic neuroma a year ago, and am hoping to have my surgery soon. Can you please share how long it took your balance to return to normal (if it has at this point)? In addition, I don't recall you mentioning it, but did you lose your hearing on your affected side, or were they able to preserve it? Thanks again - this has been very helpful to know what to expect.

HI Ed, I also got same symptoms as u. If I am seeing the video it remembers me what happened in my life. My one of eyes are not closing properly and mouth also going one side. Eye redness and closing eye with one hand and all happened in my life too.Really 5 years happened from my surgery. When I saw u in video ur looks like a normal person as without surgery. Thanks to that good surgeon. I also went under surgery and after a year tumor got increased again and after that I went radiation therapy. Please please please add a video of what exercises you did for these facial imbalance. And please suggest any other help. pradeep kumar.U