I have had bilateral acoustic neuromas, due to NF2. I did well after surgery, in fact I was back to work 3 weeks after eack one, out deer hunting in 4 weeks. My surgeries were done by Dr Fukushima and Dr Chen back in 95 and 96. I came out with what hearing i went in with and really no facial paralysis except for some minor drooping in the eye lid when I am extremely tired. It is now 2010 and no regrowth.
I had a large tumor removed it was 7.11 cm by 6 cm. It is a Oligodendroglioma tumor. It is way bigger than a chicken egg and I retained my hearing. Granted it was located on the right frontal lobe wich is not as complicated as your affliction. But that area controls temperment, behavior and emotions. I ended up being overly aggressive at times not understanding why Today I find out the pathology report so Im optomistic. God bless the people affected by brain tumors,
Hi,how did you make out wih your follow up on 10/15/09? Can you update the video now? Thank you! I'm going in on 10/29/09 - hoping you are doing better!
I'm going in on 10/29/09 - mine is smaller than yours, but it is causing me neurological difficulties already, so they are going to remove. Thank you for the videos!!
I have one video more recent than this one, but not a lot has changed. I am adapting to my condition more than I am improving, at this time. I am going for a follow-up with my surgeons on October 15, and will post another video soon after.
Thanks very much indeed. I noticed that your speech is (what seems to me as) back to normal now. The hearing thing is a downer as I'm a fairly good musician and I'm worried about whether I'll be OK with my band if I go down the surgery route and have the near certainty of total hearing loss. OK so I know radio therapy does not really save hearing either.... Mmmmm... thinks....
hey man whats up, well i had my surgery. my tumor was bigger than they thought. it was 2.4 instead of 1.5 like they had told me. I did lose all my hearing in my right ear, and i have some facial problems, and still have pain, but other then that i stay tired. i feel myself getting better and better each day. i am also having problems with my right eye. Anyway good luck, and stay in touch take it easy
Johnny my bother, thanks for posting your vids on your progress for your AN. I've got a small one now, well at time I had it checked out (3 yrs ago, 1.5cm), and I have no idea what to do. It's a tough thing for me to address and I was just kind of hoping it would go away or there may be a better option down the road. In either case buddy, I just wanted to throw out a thanks for the video. Good luck with the recovery and please continue to post!
I know im not leaving until i get at least lortab10. Also i am glad i work at ups. I paid out of pocket 138 dollars for the MRI. The surgery and the Hospital is covered 100%. So I feel blessed i found it when i did b/c of the size and i have insurance when i need it. Keep in touch man later on
Yea man, he told me that i have a 30% of losing some hearing in my hears. He told me i am really lucky we found it when we did b/c of the size. Now i am not sure if he meant some hearing of all... i guess i will find out wont i ? haha .... but anyway, not sure about surgery quite yet but, i know he is going behind my hear and pushing the brain aside to get 2 where mine is located. not sure of the name of the surgery. My Doc i have full confidence in it the tylenlol 3 with codene.or whatever
When I was discharged form the hospital, I was given a prescription for Oxycodone and Dexamethasone, as well as a prescription anti-acid that I cannot recall the name of. The Oxycodone was needed for the pain for the first couple of weeks, and then I was able to use Ibuprofen. The Dexamethosone was very unpleasant and made me feel terrible while I took it. As I understand it, the level of pain following the surgery will really depend on what type of surgery they are using to remove the tumor.
hey man, my name is Jonathan, and i just found out i have 1.5 an. My hearing is fine, its my eye that has been giving me the problems. The nerve is pressing on my eye. So... I have been through more doctors office's in the last 3 weeks than ive ever been in my life. Its been about 2 weeks since i found out, and ive been on xanax it helps alot. My surgery is on July 30. I just wanted to say thanx for sharing ur story and god bless...
My pleasure. I am happy to answer questions for anyone going through this ordeal. I have had some kind people doing the same for me. What is the prognosis for hearing preservation in your case? Mine was given as 50/50, but it sounds like you might have a better chance, if I understand you correctly, and it is only 1.5cm. Good luck to you.
same disease than neurofibromatosis type 2?
video4yourtube 1 year ago
I have had bilateral acoustic neuromas, due to NF2. I did well after surgery, in fact I was back to work 3 weeks after eack one, out deer hunting in 4 weeks. My surgeries were done by Dr Fukushima and Dr Chen back in 95 and 96. I came out with what hearing i went in with and really no facial paralysis except for some minor drooping in the eye lid when I am extremely tired. It is now 2010 and no regrowth.
impalaSS1967 2 years ago
I had a large tumor removed it was 7.11 cm by 6 cm. It is a Oligodendroglioma tumor. It is way bigger than a chicken egg and I retained my hearing. Granted it was located on the right frontal lobe wich is not as complicated as your affliction. But that area controls temperment, behavior and emotions. I ended up being overly aggressive at times not understanding why Today I find out the pathology report so Im optomistic. God bless the people affected by brain tumors,
hairysoap 2 years ago
Hi,how did you make out wih your follow up on 10/15/09? Can you update the video now? Thank you! I'm going in on 10/29/09 - hoping you are doing better!
Clearymartin 2 years ago
I'm going in on 10/29/09 - mine is smaller than yours, but it is causing me neurological difficulties already, so they are going to remove. Thank you for the videos!!
Clearymartin 2 years ago
Great video, thank you! Please update! How are you doing now?
Clearymartin 2 years ago
I have one video more recent than this one, but not a lot has changed. I am adapting to my condition more than I am improving, at this time. I am going for a follow-up with my surgeons on October 15, and will post another video soon after.
JohnnieD72 2 years ago
Thanks very much indeed. I noticed that your speech is (what seems to me as) back to normal now. The hearing thing is a downer as I'm a fairly good musician and I'm worried about whether I'll be OK with my band if I go down the surgery route and have the near certainty of total hearing loss. OK so I know radio therapy does not really save hearing either.... Mmmmm... thinks....
SteffanLlwyd 2 years ago
hey man whats up, well i had my surgery. my tumor was bigger than they thought. it was 2.4 instead of 1.5 like they had told me. I did lose all my hearing in my right ear, and i have some facial problems, and still have pain, but other then that i stay tired. i feel myself getting better and better each day. i am also having problems with my right eye. Anyway good luck, and stay in touch take it easy
Jeffbud84 2 years ago
Johnny my bother, thanks for posting your vids on your progress for your AN. I've got a small one now, well at time I had it checked out (3 yrs ago, 1.5cm), and I have no idea what to do. It's a tough thing for me to address and I was just kind of hoping it would go away or there may be a better option down the road. In either case buddy, I just wanted to throw out a thanks for the video. Good luck with the recovery and please continue to post!
TheWhouse7 2 years ago
I know im not leaving until i get at least lortab10. Also i am glad i work at ups. I paid out of pocket 138 dollars for the MRI. The surgery and the Hospital is covered 100%. So I feel blessed i found it when i did b/c of the size and i have insurance when i need it. Keep in touch man later on
Jeffbud84 2 years ago
Yea man, he told me that i have a 30% of losing some hearing in my hears. He told me i am really lucky we found it when we did b/c of the size. Now i am not sure if he meant some hearing of all... i guess i will find out wont i ? haha .... but anyway, not sure about surgery quite yet but, i know he is going behind my hear and pushing the brain aside to get 2 where mine is located. not sure of the name of the surgery. My Doc i have full confidence in it the tylenlol 3 with codene.or whatever
Jeffbud84 2 years ago
what meds did u leave the hospital with? just curious b/c my doc wrote something really weak
Jeffbud84 2 years ago
When I was discharged form the hospital, I was given a prescription for Oxycodone and Dexamethasone, as well as a prescription anti-acid that I cannot recall the name of. The Oxycodone was needed for the pain for the first couple of weeks, and then I was able to use Ibuprofen. The Dexamethosone was very unpleasant and made me feel terrible while I took it. As I understand it, the level of pain following the surgery will really depend on what type of surgery they are using to remove the tumor.
JohnnieD72 2 years ago
hey man, my name is Jonathan, and i just found out i have 1.5 an. My hearing is fine, its my eye that has been giving me the problems. The nerve is pressing on my eye. So... I have been through more doctors office's in the last 3 weeks than ive ever been in my life. Its been about 2 weeks since i found out, and ive been on xanax it helps alot. My surgery is on July 30. I just wanted to say thanx for sharing ur story and god bless...
Jeffbud84 2 years ago
My pleasure. I am happy to answer questions for anyone going through this ordeal. I have had some kind people doing the same for me. What is the prognosis for hearing preservation in your case? Mine was given as 50/50, but it sounds like you might have a better chance, if I understand you correctly, and it is only 1.5cm. Good luck to you.
JohnnieD72 2 years ago