My respect Man !!! You are a winner and you valor Is so much !!! I was the same tumor and my face dont be the same.....I kwon the hard way .We are a survivor .My best wishes .Thanks for your video
hey man... I just found out i have a AN its 1.5. I am lucky we found it when we did. I was having problems with my right eye. It felt like it was tring to shut, and i had no control over it it. I went to 4 diff. docs, and finally have my surgery set for july 30. I am just glad i work at ups. I have excellent insurance i paid 157 dollars out of pocket for the MRI. The surgery, and the hospital stay is covered 100%. So i am blessed in that aspect. take care of yourself..... god bless
Thank god you had good health care. I don't know what people would do if they had an AN and it wasn't covered by health care. That's just too scary!
I wonder what would happen to an American who had not health care coverage and had an AN. Would he/she just be left to die? Poor people in 3rd world countries die from AN all the time and it's just sad to think about. We are so lucky in western countries.
@TorontoEdmonton My thinking too. I'm so thankful that I can see my specialist for free (on the UK NHS) anytime I want. It costs in taxes, but still less than private health insurance would cost for the same full spectrum coverage.
That said a lot of innovation has come out of the US system and I'm thankful for that too.
For info I'm a 1.1cm LH AN with significant symptoms but 'no appreciable growth' over 18 month of monitoring. Probably started 45 yrs ago. Great vid. True grit.
Yes, I am a funny guy.lol I am feeling better. Every few months I notice something that has changed, so that's good. (slow but steady progress)
I haven't come on here for over 6 months, so sorry about the long delay in answering letters and updating. I will film another video in the near future. Although there hasn't been any big changes, there has been some small changes, so I will update. I might also do a general video about health care because I think it's important. You live and learn.
OK, I lied! I didn't film another video because now that I'm feeling a little more normal, my shy self has come back and I dread going back in front of a camera. I can't say I'd never do it again but right now I really don't want to film another video. I cringe just watching this one. I can't watch these videos, they just make me want to press DELETE! lol I only keep them up because so many people tell me they helped them in some way.
I read in your post that people (with INSURANCE) are so much better off in Western countries. I beg to differ & would like to present my point of view for the benefit of all those reading this post. I am from India and I had one of the best medical treatments possible. I had NO insurance, but the entire brain tumor surgery cost me only Rs. 130,000 (US$ 2800). I get my 6-monthly MRIs done (from top of the class MRI machines) at a cost of Rs. 7500 (US $160). This is very affordable, I would say.
Yeah, those are really good prices but you're also very lucky you have the money to pay for it. I know that many people in third world countries, like Vietnam, die from things like Acoustic Neuroms because they can't afford the operation. A friend of mine who used to live in Vietnam told me his father died of an easily curable disease because his family was too poor to afford the operation. There is no free health-care there, so if you're poor, you die. In that regard, we are both lucky.
to mr.torontoEdmonton ,My name is Dr .aree .I Hv got the same AN size4 .5cm by MRI and post op20/10/2008.I like to share my experience with you and I think you can cosmetic your forehead and lt cheek relaxed by botox because it will balance your face action better than this time .you can contact me at Awongphoodee@gmail.com ,I think you are great man,thanks for your vdo.
I'm pre-treatment right now. I just had another MRI to chart the growth, I'm guessing 6mm. I've lost 95 % of the hearing on that side and have intense tinnitus, but no vertigo.
That tinnitus sucks! The damn thing never stops but you do kinda get used to it. Actually, a few times I did hear quiet and was kinda taken aback. It didn't last long though. Funny thing is, sometimes when I walk, I notice the noise vibrates to my steps. (louder and quieter when I take a step)
Yes, I am doing better. After a certain point, you just have to forget about comparing yourself to the past and live with what you have. I'm trying to do that now. I'm doing fine, I hope you are too.
How ya feelin there buddy? I have to get surgery. I keep putting it off but I don't have the money. I'm trying to finish school first. When I was diagnosed which was quite a few years ago it was a little under 2.5 and I had no symptoms at all..now I'm getting them, I have tinnitus and the sound is muffled and I'm staring to feel fullness in that ear as well..some times a little pain..so I guess I can't wait too long. They wanted to do gamma knife at the time. I'm not sure if thats an option now.
I get that stuff too, but I'm only at 11mm. Thankfully it is not hard to get treatment in the UK as everybody is covered by the NHS and I can get treatement whenever I want. The hard part is that I can't find any good data on which treatment route works best, eg radio-therapy v radio surgery v different kinds of regular surgery. Know any good stuff to look into?
there is an organization called ANA and the hearing institute and think the doctors name who either started it or is like the main doctor is Dr. William Slattery and they are based out of California I think. My doctors name is Dr. Anil Nanda and he is in shreveport louisiana. I think they have some type of publication as well and they are big on Gamma knife surgery if its an option of course.
Yes. I find these sort of groups useful. I'm in a UK one called 'BANA' and they have a great Newsletter and local groups. BANA is a good source of information, but you videos is SO informative.
Your videos have scared the hell out of me. But it was good that you made them. Thanks.
I have trigeminal neuralgia and went for an MRI to see if there was anything else in there. From the MRI I have just learned that I have a 3cm acoustic neuroma as well. So now I need to have microvascular decompression for the TN and also have the acoustic neuroma removed. If your operation was 11 hours, I dread to think how long they're going to be inside my head.
How you feeling these days? I am sorry I wrote such a long reply to your last question.
My face started to come back to semetrical about 10 years ago. Still have headaches after 20 years, and still have problems with my vocal chords. but I feel pretty good all in all. I hope you have a quicker recovery.
Yes, I did get it, thanks, and I found it quite interesting, as well as encouraging. I'm glad to hear you're getting better. It's a slow and painful process but there is no other option but to just get through it. And feel fortunate that it wasn't a malignant tumor. As bad off as we may have it, some people have it worse.
I'm sure they probably told me but I don't remember. I'd guess about 15 to 20, in my head and 10 on my stomach. Some were made of metal, those were removed a few weeks ago and the scars healed quite well. (the others dissolve by themselves)
I'd be terrified too. Keep a good watch on them and don't let them get too large. It's the larger ones that cause the most damage. If I would have had mine out earlier, I probably would have saved my hearing and would not have the facial paralysis but who knew it would grow so fast. My tumor went from medium sized to large, very quickly. One day I'm thinking everything is ok, the next day I get a call saying you need to come in for an emergency operation. I was like, WTF? Watch those tumors.
May you be healthy and happy my friend..and God Bless Canada for their social medicine. If only the USA would treat their people right and do the same, instead of allowing for profit corporations kill americans by denying them what should be a right and not a privelege in the USA -Universal Healthcare.
Yep, I agree! Hopefully, with a new, more progressive president, the USA will have a more balanced health care system, that covers all Americans. The last thing you need to worry about, when your dealing with something as stressful as this, is whether your insurance will cover it or if you have the money to pay for it.
My respect Man !!! You are a winner and you valor Is so much !!! I was the same tumor and my face dont be the same.....I kwon the hard way .We are a survivor .My best wishes .Thanks for your video
chiripitio 8 months ago
hey man... I just found out i have a AN its 1.5. I am lucky we found it when we did. I was having problems with my right eye. It felt like it was tring to shut, and i had no control over it it. I went to 4 diff. docs, and finally have my surgery set for july 30. I am just glad i work at ups. I have excellent insurance i paid 157 dollars out of pocket for the MRI. The surgery, and the hospital stay is covered 100%. So i am blessed in that aspect. take care of yourself..... god bless
Jeffbud84 2 years ago
Thank god you had good health care. I don't know what people would do if they had an AN and it wasn't covered by health care. That's just too scary!
I wonder what would happen to an American who had not health care coverage and had an AN. Would he/she just be left to die? Poor people in 3rd world countries die from AN all the time and it's just sad to think about. We are so lucky in western countries.
TorontoEdmonton 2 years ago
@TorontoEdmonton My thinking too. I'm so thankful that I can see my specialist for free (on the UK NHS) anytime I want. It costs in taxes, but still less than private health insurance would cost for the same full spectrum coverage.
That said a lot of innovation has come out of the US system and I'm thankful for that too.
For info I'm a 1.1cm LH AN with significant symptoms but 'no appreciable growth' over 18 month of monitoring. Probably started 45 yrs ago. Great vid. True grit.
SteffanLlwyd 1 year ago
u cute man ! i got 3.23cm , going operation in couple of months, god bless us
qsbkv2008 2 years ago
You are a funny guy Gary.
I learned few things from your video and I would like to thank you for it.
Hope you feel better.
Israel.
ntntnt44 3 years ago
Yes, I am a funny guy.lol I am feeling better. Every few months I notice something that has changed, so that's good. (slow but steady progress)
I haven't come on here for over 6 months, so sorry about the long delay in answering letters and updating. I will film another video in the near future. Although there hasn't been any big changes, there has been some small changes, so I will update. I might also do a general video about health care because I think it's important. You live and learn.
TorontoEdmonton 3 years ago
OK, I lied! I didn't film another video because now that I'm feeling a little more normal, my shy self has come back and I dread going back in front of a camera. I can't say I'd never do it again but right now I really don't want to film another video. I cringe just watching this one. I can't watch these videos, they just make me want to press DELETE! lol I only keep them up because so many people tell me they helped them in some way.
TorontoEdmonton 2 years ago
I read in your post that people (with INSURANCE) are so much better off in Western countries. I beg to differ & would like to present my point of view for the benefit of all those reading this post. I am from India and I had one of the best medical treatments possible. I had NO insurance, but the entire brain tumor surgery cost me only Rs. 130,000 (US$ 2800). I get my 6-monthly MRIs done (from top of the class MRI machines) at a cost of Rs. 7500 (US $160). This is very affordable, I would say.
satavalekar 2 years ago
Yeah, those are really good prices but you're also very lucky you have the money to pay for it. I know that many people in third world countries, like Vietnam, die from things like Acoustic Neuroms because they can't afford the operation. A friend of mine who used to live in Vietnam told me his father died of an easily curable disease because his family was too poor to afford the operation. There is no free health-care there, so if you're poor, you die. In that regard, we are both lucky.
TorontoEdmonton 2 years ago
watch the movie John Q your gonna be scared as hell trust me
tinyGhost17 2 years ago
This has been flagged as spam show
to mr.torontoEdmonton ,My name is Dr .aree .I Hv got the same AN size4 .5cm by MRI and post op20/10/2008.I like to share my experience with you and I think you can cosmetic your forehead and lt cheek relaxed by botox because it will balance your face action better than this time .you can contact me at Awongphoodee@gmail.com ,I think you are great man,thanks for your vdo.
tickong 1 year ago
I'm pre-treatment right now. I just had another MRI to chart the growth, I'm guessing 6mm. I've lost 95 % of the hearing on that side and have intense tinnitus, but no vertigo.
I hope you are doing better !
madshackle 3 years ago
That tinnitus sucks! The damn thing never stops but you do kinda get used to it. Actually, a few times I did hear quiet and was kinda taken aback. It didn't last long though. Funny thing is, sometimes when I walk, I notice the noise vibrates to my steps. (louder and quieter when I take a step)
Yes, I am doing better. After a certain point, you just have to forget about comparing yourself to the past and live with what you have. I'm trying to do that now. I'm doing fine, I hope you are too.
TorontoEdmonton 3 years ago
How ya feelin there buddy? I have to get surgery. I keep putting it off but I don't have the money. I'm trying to finish school first. When I was diagnosed which was quite a few years ago it was a little under 2.5 and I had no symptoms at all..now I'm getting them, I have tinnitus and the sound is muffled and I'm staring to feel fullness in that ear as well..some times a little pain..so I guess I can't wait too long. They wanted to do gamma knife at the time. I'm not sure if thats an option now.
cymbeli 2 years ago
I get that stuff too, but I'm only at 11mm. Thankfully it is not hard to get treatment in the UK as everybody is covered by the NHS and I can get treatement whenever I want. The hard part is that I can't find any good data on which treatment route works best, eg radio-therapy v radio surgery v different kinds of regular surgery. Know any good stuff to look into?
SteffanLlwyd 2 years ago
there is an organization called ANA and the hearing institute and think the doctors name who either started it or is like the main doctor is Dr. William Slattery and they are based out of California I think. My doctors name is Dr. Anil Nanda and he is in shreveport louisiana. I think they have some type of publication as well and they are big on Gamma knife surgery if its an option of course.
cymbeli 2 years ago
Yes. I find these sort of groups useful. I'm in a UK one called 'BANA' and they have a great Newsletter and local groups. BANA is a good source of information, but you videos is SO informative.
SteffanLlwyd 2 years ago
Your videos have scared the hell out of me. But it was good that you made them. Thanks.
I have trigeminal neuralgia and went for an MRI to see if there was anything else in there. From the MRI I have just learned that I have a 3cm acoustic neuroma as well. So now I need to have microvascular decompression for the TN and also have the acoustic neuroma removed. If your operation was 11 hours, I dread to think how long they're going to be inside my head.
Hope you progress well from now on.
stewartmar 4 years ago
How you feeling these days? I am sorry I wrote such a long reply to your last question.
My face started to come back to semetrical about 10 years ago. Still have headaches after 20 years, and still have problems with my vocal chords. but I feel pretty good all in all. I hope you have a quicker recovery.
Gary
ecgdude 4 years ago
Hi Gary take care, i sent you another email did you get it?
anneclark1 4 years ago
Yes, I did get it, thanks, and I found it quite interesting, as well as encouraging. I'm glad to hear you're getting better. It's a slow and painful process but there is no other option but to just get through it. And feel fortunate that it wasn't a malignant tumor. As bad off as we may have it, some people have it worse.
TorontoEdmonton 4 years ago
how many stitches u got dude?
Wickedthree 4 years ago
I'm sure they probably told me but I don't remember. I'd guess about 15 to 20, in my head and 10 on my stomach. Some were made of metal, those were removed a few weeks ago and the scars healed quite well. (the others dissolve by themselves)
TorontoEdmonton 4 years ago
Love to know how you are doing now that some time has passed since your surgery. Please post a new video update. My best wishes to you.
A fellow AN patient
dcognac 4 years ago
After about the first month, I started to feel improvements in most aspects. Every day seems to get just a little bit better.
TorontoEdmonton 4 years ago
You went thru hell my friend. I have 2 of them plus 17 in the spine to go. Terrified.
METALGOD3667 4 years ago
I'd be terrified too. Keep a good watch on them and don't let them get too large. It's the larger ones that cause the most damage. If I would have had mine out earlier, I probably would have saved my hearing and would not have the facial paralysis but who knew it would grow so fast. My tumor went from medium sized to large, very quickly. One day I'm thinking everything is ok, the next day I get a call saying you need to come in for an emergency operation. I was like, WTF? Watch those tumors.
TorontoEdmonton 4 years ago
May you be healthy and happy my friend..and God Bless Canada for their social medicine. If only the USA would treat their people right and do the same, instead of allowing for profit corporations kill americans by denying them what should be a right and not a privelege in the USA -Universal Healthcare.
Nightbird 4 years ago
Yep, I agree! Hopefully, with a new, more progressive president, the USA will have a more balanced health care system, that covers all Americans. The last thing you need to worry about, when your dealing with something as stressful as this, is whether your insurance will cover it or if you have the money to pay for it.
TorontoEdmonton 4 years ago