Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Earl, You mentioned your doctor, Dr. Slattery, at the HEI in LA you said you had no problems. Does that mean you retained your hearing? and had no facial nerve troubles? Also I hope to go to Cleveland next summer, are you anywhere near there? Thanks, JD in AZ On Sat, 30 Jun 2001 10:25:20 EDT earledillon@... writes: > > Hey, > > I'm not sure where every place is that you can have surgery and > receive the > ABI. I live in Ohio and go out to HEI in CA, I know most of the ABI > people > on here do as well. My doc out there is Dr. Slattery and > has been > great in my view. He's nice and takes his time with you...and the > surgery I > had w/him went very well with no problems. > > -Earl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 JD, I had already lost my hearing before the surgery with Slattery. I made it aware to him that saving the facial nerve was the major thing for me. I think he takes this more into consideration than Brackmann but this is only my opinion from what others have said. Slattery did save the nerve, but there was some trauma and the 1st 5 mths after surgery there was no movement but now its doing fine, not 100% of how it was but not really noticable unless I smile really big (or try). Why are you going to Cleveland next summer? Jimmy lives in Cleveland and I'm 2 hrs south in Columbus. I did live in Cleveland for a while though but I like Columbus a lot more. Let me know if you have any other questions. -Earl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Hey Earl, maybe we can get a mini nf con in Cleveland/Columbus! Marie hairball77@... wrote: > Earl, > My brother in law and his family live there - actually N. Canton - and we > are going to see them on our way to Buffalo, NY. When I was young my > foster family moved to Buffalo and I hope to see them one last time. They > are in their 80's. > > I am still trying to figure out which way I want to go for AN treatment. > I like the idea behind FSR but I'm thinking if a surgeon has the ability > to leave part of the tumor in order to preserve my hearing and/or my > facial nerve THAT SOUNDS GOOD TOO. My wife thinks I'm procrastinating. > She's probably right but I want to wait as long as I can without waiting > too long. > > Later, > JD in sweltering AZ > > On Mon, 2 Jul 2001 09:50:00 EDT earledillon@... writes: > > JD, > > > > I had already lost my hearing before the surgery with Slattery. I > > made it > > aware to him that saving the facial nerve was the major thing for > > me. I > > think he takes this more into consideration than Brackmann but this > > is only > > my opinion from what others have said. Slattery did save the nerve, > > but > > there was some trauma and the 1st 5 mths after surgery there was no > > movement > > but now its doing fine, not 100% of how it was but not really > > noticable > > unless I smile really big (or try). > > > > Why are you going to Cleveland next summer? Jimmy lives in > > Cleveland and I'm > > 2 hrs south in Columbus. I did live in Cleveland for a while though > > but I > > like Columbus a lot more. > > > > Let me know if you have any other questions. > > > > -Earl > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Remember though, if you have the tumor removed partially, it will probably grow back in a few years. I wonder what the success has been to excise a tumor and then radiate right away when before it has a chance to grow? na Re: ABI & EARL > Earl, > My brother in law and his family live there - actually N. Canton - and we > are going to see them on our way to Buffalo, NY. When I was young my > foster family moved to Buffalo and I hope to see them one last time. They > are in their 80's. > > I am still trying to figure out which way I want to go for AN treatment. > I like the idea behind FSR but I'm thinking if a surgeon has the ability > to leave part of the tumor in order to preserve my hearing and/or my > facial nerve THAT SOUNDS GOOD TOO. My wife thinks I'm procrastinating. > She's probably right but I want to wait as long as I can without waiting > too long. > > Later, > JD in sweltering AZ > > On Mon, 2 Jul 2001 09:50:00 EDT earledillon@... writes: > > JD, > > > > I had already lost my hearing before the surgery with Slattery. I > > made it > > aware to him that saving the facial nerve was the major thing for > > me. I > > think he takes this more into consideration than Brackmann but this > > is only > > my opinion from what others have said. Slattery did save the nerve, > > but > > there was some trauma and the 1st 5 mths after surgery there was no > > movement > > but now its doing fine, not 100% of how it was but not really > > noticable > > unless I smile really big (or try). > > > > Why are you going to Cleveland next summer? Jimmy lives in > > Cleveland and I'm > > 2 hrs south in Columbus. I did live in Cleveland for a while though > > but I > > like Columbus a lot more. > > > > Let me know if you have any other questions. > > > > -Earl > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 JD, I had surgery on both sides and even though surgery is not the best thing. I'd still have them again instead of radiation. IF the tumor was inoperatable I would consider some type of radiation. But with surgery, I know their gone and the chance for regrowth wouldnt be as high as w/radation and part of the tumor is still there...not knowing if its completely dead. Mark might have something to say on this also, I know he had radiation but then a few yrs later he needed this recent surgery to remove it anyway and had bigger troubles on the cutting board. Ask around but any doctor you talk with, they will always promote what service they provide....ex: radiation, surgery...etc. -Earl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 JD, One more note about this...I know you wanna save your hearing at all costs. I was the same way but in the end, I still lost my hearing. I'm not saying this will happen to you but you need to think also about how big this is. Will there be an instance after radiation that it will still need removed at some point, kinda like Mark's experience? I'm guessing the doctor has already said its too big for surgery to save your hearing? I'm fortunate that my facial nerve was saved w/each surgery and have no real problems with this area. But if I had to choose between the hearing and the facial nerve, I'd rather loose the hearing in my opinion. Its your decision in the end, just be sure to explore all your options. Dont just consider the short term of saving your hearing now, consider what will be happening long term as well. Deafness isnt all that bad, it could be worse in my opinion. Its a bump to overcome, and will be rough....I'm not sure how you deal with things to begin with. Before loosing my hearing, I made it out to be the worst thing but it wasnt. Actually, it was a relief when I did go deaf, that cloud was no longer above me worrying about going deaf....it happened and it sucks...but its not the end of the world. -Earl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 That's what a in England had said they were doing there, and that's what I think would be a good option; have MS to remove the " meat " but quit when they get close to the nerves, and then have FRS? I will hope to get to ask that question at the ALDA Con. Marie Brad and na Finch wrote: > Remember though, if you have the tumor removed partially, it will probably > grow back in a few years. I wonder what the success has been to excise a > tumor and then radiate right away when before it has a chance to grow? > > na > > Re: ABI & EARL > > > Earl, > > My brother in law and his family live there - actually N. Canton - and we > > are going to see them on our way to Buffalo, NY. When I was young my > > foster family moved to Buffalo and I hope to see them one last time. They > > are in their 80's. > > > > I am still trying to figure out which way I want to go for AN treatment. > > I like the idea behind FSR but I'm thinking if a surgeon has the ability > > to leave part of the tumor in order to preserve my hearing and/or my > > facial nerve THAT SOUNDS GOOD TOO. My wife thinks I'm procrastinating. > > She's probably right but I want to wait as long as I can without waiting > > too long. > > > > Later, > > JD in sweltering AZ > > > > On Mon, 2 Jul 2001 09:50:00 EDT earledillon@... writes: > > > JD, > > > > > > I had already lost my hearing before the surgery with Slattery. I > > > made it > > > aware to him that saving the facial nerve was the major thing for > > > me. I > > > think he takes this more into consideration than Brackmann but this > > > is only > > > my opinion from what others have said. Slattery did save the nerve, > > > but > > > there was some trauma and the 1st 5 mths after surgery there was no > > > movement > > > but now its doing fine, not 100% of how it was but not really > > > noticable > > > unless I smile really big (or try). > > > > > > Why are you going to Cleveland next summer? Jimmy lives in > > > Cleveland and I'm > > > 2 hrs south in Columbus. I did live in Cleveland for a while though > > > but I > > > like Columbus a lot more. > > > > > > Let me know if you have any other questions. > > > > > > -Earl > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 JD, Earl's right on the money. With surgery you know the tumors are gone. But with radiation, they maybe dead, but they're still there. That happened with me earlier, I had both tumors radiated and it worked and killed them. However, my left AN was still pressing on my brainstem so I had it surgically removed. I had a stroke when they surgically removed the tumor and it wasn't because of the radiation or the surgery, it was because of the tumor and bad luck. Good Luck, Mark ----Original Message Follows---- From: earledillon@... Reply-To: NF2_Crew To: NF2_Crew Subject: Re: ABI & EARL Date: Tue, 3 Jul 2001 11:00:57 EDT JD, I had surgery on both sides and even though surgery is not the best thing. I'd still have them again instead of radiation. IF the tumor was inoperatable I would consider some type of radiation. But with surgery, I know their gone and the chance for regrowth wouldnt be as high as w/radation and part of the tumor is still there...not knowing if its completely dead. Mark might have something to say on this also, I know he had radiation but then a few yrs later he needed this recent surgery to remove it anyway and had bigger troubles on the cutting board. Ask around but any doctor you talk with, they will always promote what service they provide....ex: radiation, surgery...etc. -Earl Quote Link to comment Share on other sites More sharing options...
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