Continued...We believe that my immune system is rejecting the bone wax but the surgeon told us that he would rather cut off his own head than go back in & remove the bone wax...how rude. Anyway, I would like to talk to you further about your experience, could you email me? My contact info: valarieahiggins@yahoo.com
Thanks for being so brave to come forward & publicly document your experience. I'm finding in my research that we aren't the oh ones suffering needlessly. My best to you for a full
Continued...We believe that my immune system is rejecting the bone wax but the surgeon told us that he would rather cut off his own head than go back in & remove the bone wax...how rude. Anyway, I would like to talk to you further about your experience, could you email me? My contact info: valarieahiggins@yahoo.com
Thanks for being so brave to come forward & publicly document your experience. I'm finding in my research that we aren't the oh ones suffering needlessly. My best to you for a full
Continued....I was very active & independent prior to the surgery. I am on so much pain meds (all the ones you noted in your video and more) that I ended up in the hospital just before Christmas with kidney problems - so they pulled me off everything! I've also been on prednisone for 8 months...no fun. We recently found out from the surgeon that they used bone wax (bees wax) in my internal auditory canal - I'm deathly allergic to bees - apparently they missed that tidbit in my medical records!
Hi, I had my AN removed 8 months ago via sub-occipital/retrosigmoid approach and I'm far far far worse now than I was before the removal! I'm in a living HELL!! Thankfully I had no damage to my facial nerve but I suffer constant & uncontrolled pain on the side of the tumor. The pain encompasses the left side of my face, jaw, eye, ear and head. It has rendered me completely bedridden and I'm unable to drive or take care of myself, which is hard as I was very active & independent prior to the sur
Hey Johnnie, it's Rufus. I am the other guy here on youtube. I am getting questions from people now who are having the surgery soon or just got diagnosed with this challenge. I found out about my tumor about a week before my surgery and I looked on here and found you. Its been hard and I hope you are doing well. Let me know if you have any questions or want to compare symptoms. I'm glad I beat this and looking forward to more progress.
Hey Johnnie, it's Rufus. I am the other guy here on youtube. I am getting questions from people now who are having the surgery soon or just got diagnosed with this challenge. I found out about my tumor about a week before my surgery and I looked on here and found you. Its been hard and I hope you are doing well. Let me know if you have any questions or want to compare symptoms. I'm glad I beat this and looking forward to more progress.
You look much better. I had mine removed on February 19th and am moving along. My recovery's gone faster, but I did get a staff infection and a good deal of brain swelling and many of the other issues you are going through are somewhat similar. I did lose the hearing in the right ear, but no biggie. I have great respect for your ability to deal with the pain and frustrations.
Your paralysis doesn't seem to be that bad. Your mouth seems pretty normal. Mine looks much worse. I had some nerve growth after the first year but I never developed much animation. After 18 months the nerve growth stopped and nothing has changed since then. My doctor told me I could have the nerve operation involving the tongue but nobody told me I should have it at 12 months. I didn't know that after 2 years it's less effective. I need to speak to that doctor.
Thanks for the comments. Positive re-enforcement is certainly a welcome thing these days. I do not believe I have had any twitching at all. I barely realized my face was healing at first, and could not really feel it happening. I still can't blink or move my face naturally at all, but with some effort, I can move my cheek a little. The funny thing is that even though it appears better to see me talking, it feels almost as weird as it has since the surgery. Thanks for the info about the twitching
Hey Johnnie, it's Rufus. I am the other guy here on youtube. I am getting questions from people now who are having the surgery soon or just got diagnosed with this challenge. I found out about my tumor about a week before my surgery and I looked on here and found you. Its been hard and I hope you are doing well. Let me know if you have any questions or want to compare symptoms. I'm glad I beat this and looking forward to more progress.
Hey Man- I'm @ my 7 month mark of a removal of a 3.3cm via translab- i see a huge difference! your face is symetrical when you talk now- its healing man! My face stopped droping and I have movement in the corner of my mouth now! and it pulls up when i smile- so I imagine thts next for you too- Do you have any facial twitching? I have a lot and thats when movement starts--
This has been flagged as spam show
Continued...We believe that my immune system is rejecting the bone wax but the surgeon told us that he would rather cut off his own head than go back in & remove the bone wax...how rude. Anyway, I would like to talk to you further about your experience, could you email me? My contact info: valarieahiggins@yahoo.com
Thanks for being so brave to come forward & publicly document your experience. I'm finding in my research that we aren't the oh ones suffering needlessly. My best to you for a full
valarieahiggins 1 month ago
Continued...We believe that my immune system is rejecting the bone wax but the surgeon told us that he would rather cut off his own head than go back in & remove the bone wax...how rude. Anyway, I would like to talk to you further about your experience, could you email me? My contact info: valarieahiggins@yahoo.com
Thanks for being so brave to come forward & publicly document your experience. I'm finding in my research that we aren't the oh ones suffering needlessly. My best to you for a full
valarieahiggins 1 month ago
Continued....I was very active & independent prior to the surgery. I am on so much pain meds (all the ones you noted in your video and more) that I ended up in the hospital just before Christmas with kidney problems - so they pulled me off everything! I've also been on prednisone for 8 months...no fun. We recently found out from the surgeon that they used bone wax (bees wax) in my internal auditory canal - I'm deathly allergic to bees - apparently they missed that tidbit in my medical records!
valarieahiggins 1 month ago
Hi, I had my AN removed 8 months ago via sub-occipital/retrosigmoid approach and I'm far far far worse now than I was before the removal! I'm in a living HELL!! Thankfully I had no damage to my facial nerve but I suffer constant & uncontrolled pain on the side of the tumor. The pain encompasses the left side of my face, jaw, eye, ear and head. It has rendered me completely bedridden and I'm unable to drive or take care of myself, which is hard as I was very active & independent prior to the sur
valarieahiggins 1 month ago
This has been flagged as spam show
Hey Johnnie, it's Rufus. I am the other guy here on youtube. I am getting questions from people now who are having the surgery soon or just got diagnosed with this challenge. I found out about my tumor about a week before my surgery and I looked on here and found you. Its been hard and I hope you are doing well. Let me know if you have any questions or want to compare symptoms. I'm glad I beat this and looking forward to more progress.
RufusL911 1 year ago
Hey Johnnie, it's Rufus. I am the other guy here on youtube. I am getting questions from people now who are having the surgery soon or just got diagnosed with this challenge. I found out about my tumor about a week before my surgery and I looked on here and found you. Its been hard and I hope you are doing well. Let me know if you have any questions or want to compare symptoms. I'm glad I beat this and looking forward to more progress.
RufusL911 1 year ago
you look so much better ! will you ever be able to go without the eye patch? what does it look like without the patch?
ihatemodern 1 year ago
You look much better. I had mine removed on February 19th and am moving along. My recovery's gone faster, but I did get a staff infection and a good deal of brain swelling and many of the other issues you are going through are somewhat similar. I did lose the hearing in the right ear, but no biggie. I have great respect for your ability to deal with the pain and frustrations.
gopherusagassizii 1 year ago
Your paralysis doesn't seem to be that bad. Your mouth seems pretty normal. Mine looks much worse. I had some nerve growth after the first year but I never developed much animation. After 18 months the nerve growth stopped and nothing has changed since then. My doctor told me I could have the nerve operation involving the tongue but nobody told me I should have it at 12 months. I didn't know that after 2 years it's less effective. I need to speak to that doctor.
TorontoEdmonton 2 years ago
Thanks for the comments. Positive re-enforcement is certainly a welcome thing these days. I do not believe I have had any twitching at all. I barely realized my face was healing at first, and could not really feel it happening. I still can't blink or move my face naturally at all, but with some effort, I can move my cheek a little. The funny thing is that even though it appears better to see me talking, it feels almost as weird as it has since the surgery. Thanks for the info about the twitching
JohnnieD72 2 years ago
Hey Johnnie, it's Rufus. I am the other guy here on youtube. I am getting questions from people now who are having the surgery soon or just got diagnosed with this challenge. I found out about my tumor about a week before my surgery and I looked on here and found you. Its been hard and I hope you are doing well. Let me know if you have any questions or want to compare symptoms. I'm glad I beat this and looking forward to more progress.
RufusL911 1 year ago
Hey Man- I'm @ my 7 month mark of a removal of a 3.3cm via translab- i see a huge difference! your face is symetrical when you talk now- its healing man! My face stopped droping and I have movement in the corner of my mouth now! and it pulls up when i smile- so I imagine thts next for you too- Do you have any facial twitching? I have a lot and thats when movement starts--
Darren80G 2 years ago