I’m three years out and I’m not fine. Floating and constant dizziness and still pressure in the back of my head. My whole life has been turned upside down. And this is what I have to live with every day. I’m happy to see that you were some tree turned out so good you’re so young. God bless❤️
This is so helpful …. Nothing against our American friends , but the way things work with the nhs is so different. I was diagnosed 2022 and currently have yet to meet my skull team…. Oh joy!
Thank you for posting this. I’m having my surgery for AN in 4 days. I needed to hear a positive ending. I needed to hear that it can go well and life goes on. Love to you.
You're very welcome, glad it helped and I'm sure your op will go fantastically for you. I do also have two more videos which I posted last year as I had to have the operation again x
Thank you for sharing. I have just been diagnosed and it is helpful to know that it isn't all bleak and with time things will get back to. normal. Hardest part right now is telling family so they don't worry.
Sorry to hear of your diagnosis and I'm glad you were able to take something positive from this video. Telling family is really tough and there never seems to be a right time to tell them. Let me know how you get on with everything and feel free to ask me any questions xx
Thanks for the video. You really helped me. I was diagnosed today with a 1.5 cm AN and I'm pretty scared. I have a permanent screaming whistle in my left ear and get a bit giddy every now and then. My treatment is going to be at Adenbrookes. Can I ask if you suffer from tinnitus or struggle with things like driving? How big was your tumour? Where were you treated? Did you suffer with any out of the blue anxiety or fatigue before you were diagnosed? Sorry for all the questions. Seriously your so brave,
Hiya. First and foremost, please don't be scared, you're braver than you think. Although this type of tumour is considered rare, the people looking after you will know exactly what they're doing, they deal with them all the time and Addenbrookes looks like a fantastic place to be treated. I know it's hard but try not to worry. I was treated at the Walton Centre in Liverpool and my AN was 3.5cm when I was originally diagnosed, 12 months later when scanned again before my op it was 'considerably bigger' whatever that means. Tinnitus and pain in the ear where the first indicators that something was wrong and both got worse leading up to the op but since the op my tinnitus has calmed down a bit, only flaring up badly when I'm tired or stressed. I only realised once diagnosed that my poor balance from my mid teens onwards was down to the AN. This has improved, although sometimes I wonder whether it's just because I have adapted to it (I don't drive but can't see this being an issue for me personally when I do learn. Riding a bike however has been challenging at times). I was definitely plagued with fatigue prior to the op. I used to put it down to the work/shifts I was doing but now I recognise that nobody could be that tired that often. I feel better than I did 10 years ago now that that parasite is gone and you will too. Any other questions, don't hesitate to ask and please keep me updated x
Is it normal to be weak most of the time. Little jobs you do you get tired very quickly. One of my eyes don't make any tears but the two of them are dry. I have to put drops in them all through the day. Did you experience that.
Hi, sorry for not replying sooner. My hearing was very damaged from the tumor prior to the surgery, everything just sounded like an untuned radio, like everything sounded static, it was really annoying. My hearing went completely after the surgery, but it was past the point of saving at that time and I much prefer hearing nothing than the distorted sound I was hearing before the op x
You had a terrible time recovering. So sorry. Do you still have dry eyes.? My surgery was one year ago. I am still wobble on my feet and my body is still weak. You look beautiful after 3yrs. You can view my video at Jennifer Basdeo living with acoustic neuroma. Thank you.
Jennifer Basdeo it probably took a good 12 months for me to feel completely fine and to not get tired quickly. My balance improved massively within a couple of years and I didn't have to use drops in my left eye after a couple of weeks. My left eye still does not produce tears and I have recently had to go through the surgery again which has left my eye dryer than before but not to the point where I need drops x
Thanks so much for share with us your history. On February I diagnosed with shwannoma vestibular is same acustic neurona and I’m so scare. But I’m happy to see is nothing lost and you and other people is fine after surgery 🙏🏻 ... what size is your tumor?? I glad you see this soon they put my surgery for this month April 2019
Hi lovely!! This was approx 7 years ago and I actually had the same operation AGAIN approx 18 months ago (I made a video 5 days after my most recent surgery). Think positive, have faith (in your self also), and believe in your surgeons (they're highly trained/skilled), they've got you xxx
I do still have constant tinnitus unfortunately, although I don't get the range of noises that I had before, such as telephones ringing, birds singing or flies buzzing around my head. I would say my tinnitus has definitely calmed down, but it is very much still there and tends to get louder when I'm tired or have drank alcohol x
I guess if I could ask, how much does it impact you now? Have you just gotten used to it/habituated to it? Do you get any type of anxiety or fear from it? Sorry for all the questions, I'm a bit new to it so just wondering, thanks!
@@philganser7141don't worry, I'm happy to answer any questions. It honestly doesn't impact me at all anymore, I barely notice it. If I think about it, it obviously becomes more noticeable, but otherwise, it doesn't bother me. It was definitely harder to deal with in the beginning, but it's been 10 years living with it now so I'm used to it x
I’m three years out and I’m not fine. Floating and constant dizziness and still pressure in the back of my head. My whole life has been turned upside down. And this is what I have to live with every day. I’m happy to see that you were some tree turned out so good you’re so young. God bless❤️
I'm sorry to hear that. I hope things improve for you over time x
This is so helpful …. Nothing against our American friends , but the way things work with the nhs is so different.
I was diagnosed 2022 and currently have yet to meet my skull team…. Oh joy!
Thank you for posting this. I’m having my surgery for AN in 4 days. I needed to hear a positive ending. I needed to hear that it can go well and life goes on. Love to you.
You're very welcome, glad it helped and I'm sure your op will go fantastically for you. I do also have two more videos which I posted last year as I had to have the operation again x
What happen ?
Thank you for sharing. I have just been diagnosed and it is helpful to know that it isn't all bleak and with time things will get back to. normal. Hardest part right now is telling family so they don't worry.
Sorry to hear of your diagnosis and I'm glad you were able to take something positive from this video. Telling family is really tough and there never seems to be a right time to tell them. Let me know how you get on with everything and feel free to ask me any questions xx
Thanks for the video. You really helped me. I was diagnosed today with a 1.5 cm AN and I'm pretty scared. I have a permanent screaming whistle in my left ear and get a bit giddy every now and then. My treatment is going to be at Adenbrookes. Can I ask if you suffer from tinnitus or struggle with things like driving? How big was your tumour? Where were you treated? Did you suffer with any out of the blue anxiety or fatigue before you were diagnosed? Sorry for all the questions. Seriously your so brave,
Hiya. First and foremost, please don't be scared, you're braver than you think. Although this type of tumour is considered rare, the people looking after you will know exactly what they're doing, they deal with them all the time and Addenbrookes looks like a fantastic place to be treated. I know it's hard but try not to worry. I was treated at the Walton Centre in Liverpool and my AN was 3.5cm when I was originally diagnosed, 12 months later when scanned again before my op it was 'considerably bigger' whatever that means. Tinnitus and pain in the ear where the first indicators that something was wrong and both got worse leading up to the op but since the op my tinnitus has calmed down a bit, only flaring up badly when I'm tired or stressed. I only realised once diagnosed that my poor balance from my mid teens onwards was down to the AN. This has improved, although sometimes I wonder whether it's just because I have adapted to it (I don't drive but can't see this being an issue for me personally when I do learn. Riding a bike however has been challenging at times). I was definitely plagued with fatigue prior to the op. I used to put it down to the work/shifts I was doing but now I recognise that nobody could be that tired that often. I feel better than I did 10 years ago now that that parasite is gone and you will too. Any other questions, don't hesitate to ask and please keep me updated x
Thanks so much for sharing your story. I'm deciding between surgery and radiation and it helps to see stories like yours.
You're very welcome. I hope all goes well whatever you decide xx
And please let me know how you get on x
Is it normal to be weak most of the time. Little jobs you do you get tired very quickly. One of my eyes don't make any tears but the two of them are dry. I have to put drops in them all through the day. Did you experience that.
Thanks for sharing your story. Did you lose your hearing from the surgery or the tumor or both? How large was your tumor?
Hi, sorry for not replying sooner. My hearing was very damaged from the tumor prior to the surgery, everything just sounded like an untuned radio, like everything sounded static, it was really annoying. My hearing went completely after the surgery, but it was past the point of saving at that time and I much prefer hearing nothing than the distorted sound I was hearing before the op x
You had a terrible time recovering. So sorry. Do you still have dry eyes.? My surgery was one year ago. I am still wobble on my feet and my body is still weak. You look beautiful after 3yrs. You can view my video at Jennifer Basdeo living with acoustic neuroma. Thank you.
Jennifer Basdeo it probably took a good 12 months for me to feel completely fine and to not get tired quickly. My balance improved massively within a couple of years and I didn't have to use drops in my left eye after a couple of weeks. My left eye still does not produce tears and I have recently had to go through the surgery again which has left my eye dryer than before but not to the point where I need drops x
Thank you.
Thanks so much for share with us your history. On February I diagnosed with shwannoma vestibular is same acustic neurona and I’m so scare. But I’m happy to see is nothing lost and you and other people is fine after surgery 🙏🏻 ... what size is your tumor??
I glad you see this soon they put my surgery for this month April 2019
Hi lovely!! This was approx 7 years ago and I actually had the same operation AGAIN approx 18 months ago (I made a video 5 days after my most recent surgery). Think positive, have faith (in your self also), and believe in your surgeons (they're highly trained/skilled), they've got you xxx
I believe my tumour the first time was approx 3.5 cms and the second time round it was approx 3 cms x
@@TheSamLouiseProject 30cm!! Is this a typo??
@@biancaschembri3705 it is indeed x
@@TheSamLouiseProject phew! Lol hope you are going well post surgery
Hi - Thanks so much for the video, glad to see you're doing well. May I ask if you still have constant tinnitus? Has it gotten any better?
I do still have constant tinnitus unfortunately, although I don't get the range of noises that I had before, such as telephones ringing, birds singing or flies buzzing around my head. I would say my tinnitus has definitely calmed down, but it is very much still there and tends to get louder when I'm tired or have drank alcohol x
@@TheSamLouiseProject Ok thanks so much, wish you the best!
I guess if I could ask, how much does it impact you now? Have you just gotten used to it/habituated to it? Do you get any type of anxiety or fear from it? Sorry for all the questions, I'm a bit new to it so just wondering, thanks!
@@philganser7141don't worry, I'm happy to answer any questions. It honestly doesn't impact me at all anymore, I barely notice it. If I think about it, it obviously becomes more noticeable, but otherwise, it doesn't bother me. It was definitely harder to deal with in the beginning, but it's been 10 years living with it now so I'm used to it x
@@TheSamLouiseProject Ok got it, thats awesome and encouraging news!
Thank you, very uplifting, even-though it's been some time since you posted this it was very timely for me. Hope you're still doing well.
I'm very well thank you. I have two more videos posted last year as I had to have the operation again. I hope they help too x
You were healed with the Electric shock