I was diagnosed in year 2000, when I was 30 with AN. Mine was about 2.75 cm. Literally a couple of days before surgery, I called and cancelled. I observed it every 3 months, then 6 months, then yearly...it wasn't growing. Finally the 6th year, the tumor died: as the doctor said ..no more blood supply to it...and the radiologist wrote tumor necrosis. I did a lot of work to heal myself.. I adopted a Whole Foods plant based diet, did daily vigorous movement, meditation, and emotional work as well. I feel blessed.
I say this from the experience of having surgery done on a large AN tumor. With all due respect, the symptoms following the surgery are way more concerning, difficult and taxing to the patient than the doctor leads on in this video. We go through a lot for a long, long time and it shouldn't be minimized. It takes quite a while to recover to a point where as normal as you are ever going to get again - months to years, not a couple of weeks. I know surgeons feel successful with their wonderful surgical results - as do we, and they should, but we are still damaged from the tumor and the tough surgeries. Many cranial nerves are likely involved (not just the facial nerve we always hear about), the drilling, taking fascia grafts, brain stem and other compression from the tumors being there so long, the surgical bed, titanium mesch,/screws, bone wax, the craniotomy, CSF leak repair, fat placement, minor retraction of the cerebellum, cutting of the balance nerve, dissections of cranial nerves off the tumor and from the brain stem, total dissections of the inner ear in the translab surgery, losing half your hearing in some cases and all of your balance on one side of your body - all that surgery and the resulting symptoms are a lot for a patient to come back from following these surgeries - it doesn't happen in a few days to a week or two as the doctor portrays. Not to mention those who have facial nerve and eyelid problems following surgery. People are strong for having undergone it and every tumor/location/result is surely different, but they certainly are not easy to come back from even if you are hardy and push yourself through it. It takes a long time and is also age dependent. I've seen plenty of these types of videos and surgeons need to stop portraying it as a fairly quick recovery. Because then patients may not get what they need in the future, family members are misinformed thinking their loved-one will be better in a few weeks and the patients think they are inadequate when they are not better from such a major life-changing surgery that may have taken up to 15 hours to complete in addition to the damage the tumor caused while it was in your head for years before it was discovered. The surgeons know the damage within the brain better than anyone else - they need to be our long term advocates of making others healthcare providers, family members, patients, etc. knowledgeable because "regular" doctors who you are released to when the surgeons are done with you , have no clue when you talk to them about it post surgery and don't even want to hear about it because it's too complicated for them. One neurosurgeon alone told me based on all the damage to the head, it will take at least a couple ears for everything to just settle down. One told me it's like a controlled gunshot to the center of your head. These surgeons are amazing but it's not over in a month for the patient - some symptoms may come and go, or never go away no matter how hard you try because you are physcially damaged and structurally changed in your head.
Glad to hear you got treatment, Jennifer! How did it go for you? I am having this team take mine out in Dec or Jan. Mostly just worried about losing my hearing :(
@@blweiler90 My tumor was large enough Dr. El Kashlan would not consider the hearing sparing surgery. There is a greater chance of a stroke with that approach so unless you have significant hearing to salvage they won’t consider it. Do you know yet what approach they’re going to take? Being single sided deaf is a significant daily challenge but I think it’s like anything else that happens during your lifetime you learn to adapt and work around it. I had a coworker who was diagnosed with a malignant brain tumor about the time I found out about my AN so it really helped me keep it in perspective. I knew chances were almost 0 I would die from the surgery and facial paralysis was also extraordinarily low. I just kept counting my blessings that I was going to live and be half deaf. She’s been gone and buried for seven years now. That just helps me keep things in perspective when I’m having a bad day. That works for me, I’m not saying that’s the perfect approach for everyone! Just FYI you have some resources now that I didn’t have 11 years ago. There are some surgeons that are placing cochlear implants at the time of the acoustic neuroma surgery. I believe it’s still part of an FDA study and insurance may not cover it but some people are having success with that.
@@blweiler90 I think I found you on Facebook. I’m going to shoot you a friend request and if you want to chat on messenger or get together for coffee let me know. I Was able to go back to work as a Paramedic about four months after my surgery if that tells you anything. When I had my tumor diagnosed I couldn’t find any support. A few years after my tumor was resected I found some online support groups but they tend to be terrified recently diagnosed and the small minority of people that have unfortunate outcomes. Many of them had their tumors removed in the 80s and 90s when it wasn’t as precise.I tried to stay on for a while, trying to assist new people so they didn’t become too overwhelmed, but it was just too stressful to take on that much.
@@LostinMayberry Good advice. Had mine removed in 2020. Lost hearing on tumor side and some facial paralysis issues still exist, but perspective is everything. Thankful to be alive.
My mom had a translab surgery a week ago, at UofM and it went very well. Very grateful to the team that worked on her surgery. Besides being great professionals they were extremely patient and respectful to my mom who doesn’t speak English well.
Could you please let me know the difference between vestibular schwannoma and the endo lymphatic hydrobs with tinnitus and hearing loss Thanks for your efforts
@@yasinv3743 Facial paralysis like Bell's palsy on the side of where the tumor was removed. Often times an AN involves the 7th cranial nerve. Crooked mouth when smiling or difficulty closing eyelid can result. Some will get better over time, but I think it's basically like after 1 year it comes back or it doesn't. Treatment exists but not everything works.
They don't concentrate on any of the potential cranial nerve involvement - there are 12 cranial nerves on each side of your brain, most come out of your brain stem and can definitely be involved. I've learned a lot once I got the surgical notes from my surgeons. My tumor/surgery was involved with quite a few cranial nerves. If you are still going through this, you should research the functions of the cranial nerves. They can get pretty damaged by the tumor/surgery - all the surgeons focus on the facial nerve, but a lot of damage/lasting problems comes from the other cranial nerves too.
Explore their website for some great information if you haven't figured it out yet. I think their website was the best with information when I was initially diagnosed.
I was diagnosed in year 2000, when I was 30 with AN. Mine was about 2.75 cm. Literally a couple of days before surgery, I called and cancelled. I observed it every 3 months, then 6 months, then yearly...it wasn't growing. Finally the 6th year, the tumor died: as the doctor said ..no more blood supply to it...and the radiologist wrote tumor necrosis. I did a lot of work to heal myself.. I adopted a Whole Foods plant based diet, did daily vigorous movement, meditation, and emotional work as well. I feel blessed.
Can you please share your email id
Pld share your work , like diet , workout n do you used to get or still getting ringing ear. Pls share
thats amazing, well done!
Awesome. I heard the tumors actually wax and wane over the course of our lives.
I say this from the experience of having surgery done on a large AN tumor. With all due respect, the symptoms following the surgery are way more concerning, difficult and taxing to the patient than the doctor leads on in this video. We go through a lot for a long, long time and it shouldn't be minimized. It takes quite a while to recover to a point where as normal as you are ever going to get again - months to years, not a couple of weeks. I know surgeons feel successful with their wonderful surgical results - as do we, and they should, but we are still damaged from the tumor and the tough surgeries. Many cranial nerves are likely involved (not just the facial nerve we always hear about), the drilling, taking fascia grafts, brain stem and other compression from the tumors being there so long, the surgical bed, titanium mesch,/screws, bone wax, the craniotomy, CSF leak repair, fat placement, minor retraction of the cerebellum, cutting of the balance nerve, dissections of cranial nerves off the tumor and from the brain stem, total dissections of the inner ear in the translab surgery, losing half your hearing in some cases and all of your balance on one side of your body - all that surgery and the resulting symptoms are a lot for a patient to come back from following these surgeries - it doesn't happen in a few days to a week or two as the doctor portrays. Not to mention those who have facial nerve and eyelid problems following surgery. People are strong for having undergone it and every tumor/location/result is surely different, but they certainly are not easy to come back from even if you are hardy and push yourself through it. It takes a long time and is also age dependent. I've seen plenty of these types of videos and surgeons need to stop portraying it as a fairly quick recovery. Because then patients may not get what they need in the future, family members are misinformed thinking their loved-one will be better in a few weeks and the patients think they are inadequate when they are not better from such a major life-changing surgery that may have taken up to 15 hours to complete in addition to the damage the tumor caused while it was in your head for years before it was discovered. The surgeons know the damage within the brain better than anyone else - they need to be our long term advocates of making others healthcare providers, family members, patients, etc. knowledgeable because "regular" doctors who you are released to when the surgeons are done with you , have no clue when you talk to them about it post surgery and don't even want to hear about it because it's too complicated for them. One neurosurgeon alone told me based on all the damage to the head, it will take at least a couple ears for everything to just settle down. One told me it's like a controlled gunshot to the center of your head. These surgeons are amazing but it's not over in a month for the patient - some symptoms may come and go, or never go away no matter how hard you try because you are physcially damaged and structurally changed in your head.
That’s the team that took mine out!
Glad to hear you got treatment, Jennifer! How did it go for you? I am having this team take mine out in Dec or Jan. Mostly just worried about losing my hearing :(
@@blweiler90 My tumor was large enough Dr. El Kashlan would not consider the hearing sparing surgery. There is a greater chance of a stroke with that approach so unless you have significant hearing to salvage they won’t consider it. Do you know yet what approach they’re going to take? Being single sided deaf is a significant daily challenge but I think it’s like anything else that happens during your lifetime you learn to adapt and work around it. I had a coworker who was diagnosed with a malignant brain tumor about the time I found out about my AN so it really helped me keep it in perspective. I knew chances were almost 0 I would die from the surgery and facial paralysis was also extraordinarily low. I just kept counting my blessings that I was going to live and be half deaf. She’s been gone and buried for seven years now. That just helps me keep things in perspective when I’m having a bad day. That works for me, I’m not saying that’s the perfect approach for everyone! Just FYI you have some resources now that I didn’t have 11 years ago. There are some surgeons that are placing cochlear implants at the time of the acoustic neuroma surgery. I believe it’s still part of an FDA study and insurance may not cover it but some people are having success with that.
@@blweiler90 I think I found you on Facebook. I’m going to shoot you a friend request and if you want to chat on messenger or get together for coffee let me know. I Was able to go back to work as a Paramedic about four months after my surgery if that tells you anything. When I had my tumor diagnosed I couldn’t find any support. A few years after my tumor was resected I found some online support groups but they tend to be terrified recently diagnosed and the small minority of people that have unfortunate outcomes. Many of them had their tumors removed in the 80s and 90s when it wasn’t as precise.I tried to stay on for a while, trying to assist new people so they didn’t become too overwhelmed, but it was just too stressful to take on that much.
@@LostinMayberry Good advice. Had mine removed in 2020. Lost hearing on tumor side and some facial paralysis issues still exist, but perspective is everything. Thankful to be alive.
My mom had a translab surgery a week ago, at UofM and it went very well. Very grateful to the team that worked on her surgery. Besides being great professionals they were extremely patient and respectful to my mom who doesn’t speak English well.
Could you please let me know the difference between vestibular schwannoma and the endo lymphatic hydrobs with tinnitus and hearing loss
Thanks for your efforts
They don't mention many patients experience facial nerve issues after surgery.
Facial nerve injury means what like trigeminal facial pain or tingling, pls explain, thanks
@@yasinv3743 Facial paralysis like Bell's palsy on the side of where the tumor was removed. Often times an AN involves the 7th cranial nerve. Crooked mouth when smiling or difficulty closing eyelid can result. Some will get better over time, but I think it's basically like after 1 year it comes back or it doesn't. Treatment exists but not everything works.
They don't concentrate on any of the potential cranial nerve involvement - there are 12 cranial nerves on each side of your brain, most come out of your brain stem and can definitely be involved. I've learned a lot once I got the surgical notes from my surgeons. My tumor/surgery was involved with quite a few cranial nerves. If you are still going through this, you should research the functions of the cranial nerves. They can get pretty damaged by the tumor/surgery - all the surgeons focus on the facial nerve, but a lot of damage/lasting problems comes from the other cranial nerves too.
Size is 4.0*3.3*2.9
Please give me knowledge about the sizes
Explore their website for some great information if you haven't figured it out yet. I think their website was the best with information when I was initially diagnosed.
Interesting but the background music ruin everything………!!!!!!!!!!!!!