My Acoustic Neuroma Experience Part 2
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- čas přidán 28. 12. 2017
- This is an update to the first video that I posted in 2015 regarding my acoustic Neuroma experience. Since the first video was posted, I found out that I needed another surgery to finish removing the last 25% of the tumor that was still growing. I hope this video helps. If you have any questions, please comment below or email me at jakewarrington5@gmail.com. Take care, Jake
When I was first diagnosed in December 8, 2014, I invested a lot of time researching as much as I could on acoustic neuromas and watching a lot of videos on people's experiences and I wanted to return the day or. If you have any questions, please feel free to comment or email at jakewarrington5@gmail.com. Take care, Jake
You are great man
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!😊
Hi Emily! Thank you very much for the kind words. I apologize for the late response from your comment. I don't know how I missed it coming in. I hope your surgery went well and you have done great with your recovery. I would love to hear an update. Take care.
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.
You're welcome! If you have any other questions, please let me know.
Thank you for the update!
Kathryn Anne You're very welcome! Thanks for stopping by.
Thank you for sharing this. Your testimony is encouraging. Our daughter is facing this right now, and, naturally, we’re all quite anxious about it.
John Holt You're very welcome! Sorry your daughter has to join the club that no one wants to be a part of. Each person's outcome and recovery is unique. It's totally understandable to be anxious. I was for both surgeries. I did everything that I could to physically prepare myself before surgery and I was all prayed up. I even stopped drinking coffee a month out from my surgery date. If you have any other questions, please send me an email at jakewarrington5@gmail.com. Take care, Jake
Thanks for sharing. I was diagnosed this past summer. Currently watching and waiting. Your positive comments were encouraging.
Hello Jeff. Sorry for the late response. I'm just seeing your comment. How are doing?
@@jakewarrington7344 I just had an mri in October, which was 1 year from when I was diagnosed. I have 2 tumors an AN and a meningioma. Both are relatively small. They did not grow any in the 1st year. Will continue with get annual mri to monitor. Thanks for asking and for sharing your story.
Thank you Jake, I was diagnosed with this 2/16. I have one small tumor in both side. The tumors are still the same sizes as when I was first diagnosed, thank you Yahweh. I get an MRI twice a year May and November. l pray I will have as much courage as you if I have to have surgery.
I will be praying and also praying for you and your family.
Lindie- LInda Miller I'm glad to hear that the tumors are the same size and are showing no signs of growth. God is good. I appreciate the prays and I will keep you in mine as well. If you have any questions, please email me at jakewarrington5@gmail.com.
Hi lindie were you diagnosed with neurofibromatosis type 2 if you had bilateral acoustic neuroma?
Hope you are doing well
@@xjorvis There are many drugs available now for NF2 treatment
Great feedback. I was just recently diagnosed with a 1.65cm acoustic neuroma earlier this month. Next up is surgery for me. Thanks for making both of your videos.
Good luck and speedy recovery.
You're welcome. Sorry for the late reply. How did your surgery go?
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.
Hey Mike! I'm glad the videos helped you. As I shared, I was nervous before each surgery for different reasons. I wish you the best with your May 7th surgery. When I had my surgery Dr Babu's primary concern was protecting my facial nerve and that is why we did two surgeries. He was as aggressive as he could be with the facial nerve maintaining a strong response. Make sure your Doctor has that as a primary concern. If you have any questions, please feel to reach out. My email is jakewarrington5@gmail.com.
Great to hear your positive outcome Jake I have my surgery for my 3.5 CM AN on January 24th and hope I come out on the other side as well as you have.
Dan Famiglietti Thanks you! I pray for a great outcome for your surgery! If you have any questions, please email me at jakewarrington5@gmail.com.
Hey Dan, I'm curious how your facial muscles are doing today (and its progression). I was just diagnosed with a 2.5 cm and I'm sort of freaked out.
Wow a second surgery ? I am awaiting my one year MR I.
You look great.
Hope I get good results.
Jennifer Basdeo Thank you very much! How are you doing? How did your surgery go?
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.
Hello Jon. Sorry for the later response. I'm just seeing your comment. All is good on my end. How are you doing?
Thank you
You're welcome! Hopefully, my experience can help others 👍
Thank you for sharing ur experience. I just had surgery on the 24th sept 2021.
I just had my surgery done too 11.08.21. Mr UTube how did your surgery go?? How was your recovery??
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.
Sorry for the late response. I do not have an issue with ringing in my ear. I was fortunate in that regard. Hopefully, your ringing has subsided.
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.
what did you decide?
@@Adrian-Grth I’ve decided to wait it out and not get surgery. I may get gamma knife down the road
@@sergiogonzalez638, I am having my 3rd brain surgery soon, I had 2 previous brain tumors, my new tumor is an acoustic neuroma, I am having surgery, I if I was you I would not get Gammaknife, it will give you brain cancer when you are old, I would get the tumor taken out by surgery, Goodluck.
@@Adrian-Grth do you have NF2. I have also had a previous surgery to remove a brain tumor (meningioma). Why do you say that gamma knife will result in cancer. My radiologist said that is not true.
@@sergiogonzalez638 No, I do not have NF2, my previous 2 brain surgeries were for different types of brain tumours, I do have surgery coming up for my 3rd tumour (acoustic neuroma), a 4th lesion (1cm brain cyst) in the Pineal Gland is monitored. I seriously would not get Gamma knife, I have heard they give you brain cancer 30 years down the track, plus Gamma Knife will destroy the area around the tumour even though they say the margin can be 1mm, but if you need surgery a few years after the Gamma, the surgeon will be challenged as the Gamma destruction makes the tumour more difficult to debulk and also makes surrounding areas more harder to cut through. I don't know your story, but all I can say to you from my experience is don't be sold bullshit by specialists just to make them wealthier and use you as an opportunity to train students as rare cases attract a lot of attention. I wish you well.
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!
Hey Diego. I don't know how I missed you comment. Hopefully, you're doing well. I did notice a loss of hearing in my left ear prior to being diagnosed.
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.
Hello Derika! I'm still doing great! I did have my balance nerve removed from my first surgery. I'm glad the videos have been encouraging for you as well. I'm sorry to hear that you're dealing with some rough issues. Hopefully, your symptoms start to subside. Please let me know when you decide to share your experience. Take care. I hope you have a Happy New Year!
Hi. How are you now. Please update. Thanks for sharing
Hi! Thanks for asking and you're welcome. I'm doing very well. In November, it will be four years since my last surgery and all is well👍. I still struggle with loud places and my balance can be weird at times🙂. I hope you're well.
Hi I’m from India ! Please can you suggest some good doctors in America . One of my aunt lives in Florida .
Should I be worried I am supper young only 18 and I'm pretty scared of surgery too should this be something scary
Stephanie Ortiz It's totally understandable to be nervous and scared. I know I was nervous prior to both of my surgeries. I was nervous for the first one because I didn't know what I was getting into and I was nervous for the second, because I knew how I felt after the first one:-) It's totally natural to be apprehensive about something like this. Everyone's situation will be different. Ask a lot of questions, understand what you might be facing and prepare yourself physically. I knew I would be deaf coming out of the surgery, so that was not a surprise. What surgical approach are they suggesting that you have done? How is your hearing right now on the AN side? I pray for a positive outcome for you!
Hi, did they make you fast before your surgery?
That is protocol for all surgeries -- so you don't vomit during surgery.
How much time does face synkiness last??
Hi Singh. I never experienced issues with my face and weakness. I was definitely fortunate in that regard.
Left you an email. Your videos are encouraging and helpful, but it doesn't mean I'm looking forward to any of this. lol
I'm glad that you found the videos to be encouraging and helpful, however, I totally understand why you're not looking forward to going through it. It's very nerve-racking and your mind races with all the uncertainty.
Hi Jake did you have fullness in your affected ear or tinnitus prior to surgery ? And if so did your tinnitus vary in amplitude? Also did you ever have any clanking sounds, drainage or pain in your ear? So glad you are doibg well, I watched both of your videos. Did you happen to see Mark ruffalo's video on his acoustic neuroma he apparently dreamt that he had a brain tumor then went to his doctor the next day and asked for an MRI sure enough they found one very interesting side note. I suspect he was having some Sensations and symptoms that led him to dream that he had a tumor.! Thanks much, kathy
@@Katie-vy5rd I never had fullness or tinnitus on in my ear, but noticed major loss of hearing. Sorry that I did not see your comment so long ago.
@@jakewarrington7344 thanks for reply. I did have CT that ruled it out, so good news. Hope you are doing well and thanks again 😊
@@Katie-vy5rd You're welcome! That's great news! I'm doing very well! Thank you 👍
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.
I believe the one I mentioned was a Bone - anchored hearing aid (BAHA), which is the same one that you mentioned in the comment. I hope you're recovering well! Take care!
There's something called a sound bite which is worn in the mouth, connects to a tooth and conducts thru the bone. Could be an alternative to BAHA or cochlear implant
Do you think this surgery is worse than heart surgery?
I have no point of reference for that. The AN surgery is tough and your body feels beat up when you're done, but I recovered very well.