I had X-rays taken at a chiropractors office and a spot showed up that looks like an acoustic neuroma. Ive had a lot of trouble with my left ear and my BP is very high all the time, I have vertigo at times and I knew something was wrong but I ignored it. Im going in for and MRI. Im single alone 63 and just finished 5 years of nursing my mom in my home as she had Alzheimers/Dimentia. The stress was only matched by my youngest brother being diagnosed with stage 4 colon cancer. Mom passed 8 months ago and I was just starting to get back to some form of normalcy and now this has me concerned. Your video calmed me and your strength is commendable. Im gonna be strong and get through this. Thank you for taking time to do this video. Im encouraged now.
I had an accoustic neuroma. And the surgery was perfect, no facial paralysis or hearing lost. Recovery was super fast for me, took me 4 weeks to be back to normal. Have faith and reach out to people cause you are not alone. Drop me a line if you need more information
You are incredibly lucky. Lucky that you found it in time and lucky that you made it through surgery and that you didn't have any facial problems afterwards. Lucky that you were able to remain strong and then you fought to return to who you were before. I'm surprised that you didn't have any tinnitus. That was my first symptom. And when it wasn't going away that's when I knew that I had to see an ENT doctor. I also had a hearing test at the same time. It was determined that I was suffering from a hearing loss also. Because I only had the tinnitus on one side I had to get an MRI. The doctor didn't tell me why he wanted me to get an MRI but I did my research and I found out why. I was hoping that he wouldn't find what he was looking to find but unfortunately he did. My tumor was small so for year it was under observation. Then six months later I had another MRI and unfortunately it was still growing. And this time I was told that it would not be good to have it under observation but to do something about it. The doctor didn't want me to have any more symptoms that may not have gone away. I was told it was too small for regular surgery so I opted for radiation. It is called stereotactic radiosurgery. It's a large dose of radiation that was given to me in one treatment. I wore a mask that was molded in a previous visit and that helps to keep you stable on the table and also helps to lineup the lasers. So that the radiation goes to the right spot. That was 2 weeks ago and I'm still suffering the side effects. I see my oncologist tomorrow for a follow-up and hopefully he can answer my questions and I can find out if what I have been experiencing is normal. I was told that in three to four months I'll get another MRI to find out whether or not the radiation treatment actually worked. Although I'm not sure how they're going to tell that because I was told it can also cause swelling to the tumor so the tumor is going to look larger when they do the MRI so how are they going to know if it's growing or if it's just swollen? I don't know what to think at this point. And I'm scared that I'm not healing properly. I cry almost every day. I haven't even gone back to work. And I'm really scared. And my tinnitus is worse. And I don't know if that's ever going to go back to the way it was or if it's just going to stay the way it is now. It's much louder and much more higher pitched and it's much harder to live with. I don't think I'm doing very well. I don't know if I made the right decision or not. But I guess only time will tell. 😢
@@Fancy21st it's a month later and I still don't feel well. I get a lot of dizzy spells and I get nausea from the dizzy spells and it makes me very uncomfortable. I'm hoping that it another month that it will go away but I don't have any proof that it will and the doctor can't give me any answers. He's always saying that everybody feels differently and everybody reacts differently. So I don't know if what I'm experiencing is normal or not.
You are the reason and people like you that I would never have a Radio surgery or invasive surgery on the neuroma because you end up worse than what you started and it doesn't cure what's wrong that brought you to the doctor to begin with I don't think they tell you that They want to make the sale .... this is so sad I had another type of surgery and I wasn't sick before it and I've been sick for nine months now and have all kinds of different crazy side effects from it so I know what you're talking about I'm just beginning to turn a corner but it's been so rough
@@kandiceblu1 I basically didn't have a choice because it was either microsurgery or radiation and the radiation helps it to stop growing. If a tumor like this continues to grow and it gets too large then it presses on the brain stem and it could be deadly. So if it gets larger than 2 1/2 cm and then it's considered a candidate for regular surgery and it's recommended to be removed. Especially if you're having extreme symptoms at that point
@@marciwhitman3513 one thing I didn’t say is I’ve been having terrible tinnitus and vertigo, lightheadedness and dizziness since May right after my surgery the other one in my chest, not my brain but they want me to have an MRI and I’ve canceled all the appointments because even if they do find a tumor like yours I am not going to have a surgery for sure after I read that it removed but it doesn’t cure or help anything and you’re in worse shape like I am from my surgery in May so I figure even if they find something they probably will. I don’t wanna argue with them all day and tell them why I won’t have the surgery.
This is beautifully put together. However, the music is a bit much. The emphasis is on the emotional dimension, rather than concrete facts, which I could use. I am an acoustic neuroma patient too.
Hi Sally - I understand your comment - it makes perfect sense. This video is designed to tell a story, but we have others offering education on many different topics affecting acoustic neuroma patients. Please visit the ANA website at www.ANAUSA.org for reliable information on treatment, side effects, symptoms, support and coping. Our video library is full of presentations from experts in the field of acoustic neuroma - the videos focus on various topics including balance, facial issues, cognitive issues, treatment options, hearing, tinnitus and more. The video library is under the Learn tab - which houses most of the information needed by newly diagnosed patients. You can find a lot of those videos here on our CZcams page as well, but the website does offer quite a bit. I hope that helps!!
That is technically true, however they can push on the brain stem and if they are treated with surgery, require skull based surgery so they are often discussed as brain tumors.
@@AcousticNeuromaAssociation hai I had done my surgery before three month and developed facial palsy grade 3 is this permanent or temporary can you give a opinion
I had X-rays taken at a chiropractors office and a spot showed up that looks like an acoustic neuroma. Ive had a lot of trouble with my left ear and my BP is very high all the time, I have vertigo at times and I knew something was wrong but I ignored it. Im going in for and MRI. Im single alone 63 and just finished 5 years of nursing my mom in my home as she had Alzheimers/Dimentia. The stress was only matched by my youngest brother being diagnosed with stage 4 colon cancer. Mom passed 8 months ago and I was just starting to get back to some form of normalcy and now this has me concerned. Your video calmed me and your strength is commendable. Im gonna be strong and get through this. Thank you for taking time to do this video. Im encouraged now.
I had an accoustic neuroma. And the surgery was perfect, no facial paralysis or hearing lost. Recovery was super fast for me, took me 4 weeks to be back to normal. Have faith and reach out to people cause you are not alone. Drop me a line if you need more information
I am about to have my surgery in one month (June 17th). I'd love to write to you, Jose. My email address is: sally.anne.frye@gmail.com.
Hi Jose this is great news where did you got the surgery
Hi, is there a way I can message you for more information? I’m going to get an MRI this week. I’m worried @jose
Please i want talk with u
Thank you so much! I’m having surgery for an acoustic neuroma on Monday November 30 and your story help me a lot.
Hope you are doing well.
How are you now? I'm wonder to know
Beautiful story thank you for sharing I’m having surgery on Tuesday and this video give me so much hope
Thank you for this video
You are incredibly lucky. Lucky that you found it in time and lucky that you made it through surgery and that you didn't have any facial problems afterwards. Lucky that you were able to remain strong and then you fought to return to who you were before. I'm surprised that you didn't have any tinnitus. That was my first symptom. And when it wasn't going away that's when I knew that I had to see an ENT doctor. I also had a hearing test at the same time. It was determined that I was suffering from a hearing loss also. Because I only had the tinnitus on one side I had to get an MRI. The doctor didn't tell me why he wanted me to get an MRI but I did my research and I found out why. I was hoping that he wouldn't find what he was looking to find but unfortunately he did. My tumor was small so for year it was under observation. Then six months later I had another MRI and unfortunately it was still growing. And this time I was told that it would not be good to have it under observation but to do something about it. The doctor didn't want me to have any more symptoms that may not have gone away. I was told it was too small for regular surgery so I opted for radiation. It is called stereotactic radiosurgery. It's a large dose of radiation that was given to me in one treatment. I wore a mask that was molded in a previous visit and that helps to keep you stable on the table and also helps to lineup the lasers. So that the radiation goes to the right spot. That was 2 weeks ago and I'm still suffering the side effects. I see my oncologist tomorrow for a follow-up and hopefully he can answer my questions and I can find out if what I have been experiencing is normal. I was told that in three to four months I'll get another MRI to find out whether or not the radiation treatment actually worked. Although I'm not sure how they're going to tell that because I was told it can also cause swelling to the tumor so the tumor is going to look larger when they do the MRI so how are they going to know if it's growing or if it's just swollen? I don't know what to think at this point. And I'm scared that I'm not healing properly. I cry almost every day. I haven't even gone back to work. And I'm really scared. And my tinnitus is worse. And I don't know if that's ever going to go back to the way it was or if it's just going to stay the way it is now. It's much louder and much more higher pitched and it's much harder to live with. I don't think I'm doing very well. I don't know if I made the right decision or not. But I guess only time will tell. 😢
How are you feeling now? I am having similar problem and would love to talk with you if you want.
@@Fancy21st it's a month later and I still don't feel well. I get a lot of dizzy spells and I get nausea from the dizzy spells and it makes me very uncomfortable. I'm hoping that it another month that it will go away but I don't have any proof that it will and the doctor can't give me any answers. He's always saying that everybody feels differently and everybody reacts differently. So I don't know if what I'm experiencing is normal or not.
You are the reason and people like you that I would never have a Radio surgery or invasive surgery on the neuroma because you end up worse than what you started and it doesn't cure what's wrong that brought you to the doctor to begin with I don't think they tell you that They want to make the sale .... this is so sad I had another type of surgery and I wasn't sick before it and I've been sick for nine months now and have all kinds of different crazy side effects from it so I know what you're talking about I'm just beginning to turn a corner but it's been so rough
@@kandiceblu1 I basically didn't have a choice because it was either microsurgery or radiation and the radiation helps it to stop growing. If a tumor like this continues to grow and it gets too large then it presses on the brain stem and it could be deadly. So if it gets larger than 2 1/2 cm and then it's considered a candidate for regular surgery and it's recommended to be removed. Especially if you're having extreme symptoms at that point
@@marciwhitman3513 one thing I didn’t say is I’ve been having terrible tinnitus and vertigo, lightheadedness and dizziness since May right after my surgery the other one in my chest, not my brain but they want me to have an MRI and I’ve canceled all the appointments because even if they do find a tumor like yours I am not going to have a surgery for sure after I read that it removed but it doesn’t cure or help anything and you’re in worse shape like I am from my surgery in May so I figure even if they find something they probably will. I don’t wanna argue with them all day and tell them why I won’t have the surgery.
This is beautifully put together. However, the music is a bit much. The emphasis is on the emotional dimension, rather than concrete facts, which I could use. I am an acoustic neuroma patient too.
Hi Sally - I understand your comment - it makes perfect sense. This video is designed to tell a story, but we have others offering education on many different topics affecting acoustic neuroma patients. Please visit the ANA website at www.ANAUSA.org for reliable information on treatment, side effects, symptoms, support and coping. Our video library is full of presentations from experts in the field of acoustic neuroma - the videos focus on various topics including balance, facial issues, cognitive issues, treatment options, hearing, tinnitus and more. The video library is under the Learn tab - which houses most of the information needed by newly diagnosed patients. You can find a lot of those videos here on our CZcams page as well, but the website does offer quite a bit. I hope that helps!!
Love the story and the music too.❤💕
@@ld-ky1mf I found the music to be very calming too, but each to their own ❤️
Did she says that Her appetite came back. Does that mean you also have loss of taste due to this?
I’m having surgery on may 31 2022
How was your surgery ?
@@trfighter64 My face is paralyze and very bad headaches
@@marianagraves2806 so sorry to hear .. I pray you get better 🙏. My father is having surgery Tomorrow.
@@trfighter64 hope everything was ok with your dad and thank you
@@marianagraves2806 his surgery date was shifted to yesterday. It went well , he is in ICU for observation for now.
Did she say 8cm by 8cm or 8mm by 8mm?
Hi Adrian - she said 8 mm x 8 mm
Acustica neuromas technically are not Brain tumors.
That is technically true, however they can push on the brain stem and if they are treated with surgery, require skull based surgery so they are often discussed as brain tumors.
* acoustic!
Wrong Sir, A brain tumor is any growth that is not part of normal anatomy.
@@AcousticNeuromaAssociation hai I had done my surgery before three month and developed facial palsy grade 3 is this permanent or temporary can you give a opinion
@@jobinantony5867 hey my papa also going to undergo one.. I am so scared . How was yours ?