Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 The tinglies were a problem for you, then -- usually that is transitory, and I was older than you at the time of my surgery (56, almost 57), and emerged unscathed, so don't blame it on your age, at all. Yep, the terrible tinglies were a big problem. Actually they still are, although they aren't nearly as intense as when I used to post and complain right after my surgery. I still have extreme tingling in my lower lip and one side of my upper lip...I read in some study about how many people end up with permanent altered sensation that they would rate as " disturbing " -- I would rate mine as " disturbing " and often " painful " (it feels I am using tabasco sauce for lipstick...that's the best I can describe it. Burning). > Why do you think it's the trigeminal nerve? I ask because I had > shingles in my trigeminal nerve, Actually, I am not an expert either Cammie. The reason I thought it was the trigeminal nerve actually started way back right after my surgery. F mentioned that she would do a search on Trigeminal neuralgia (when I was having so much trouble with the long term tinglies). I have been so frustrated with the help (or lack of) from my original jaw surgeon...I was grasping at straws and found the website about the skull base surgery (skullbaseinstitute.com). I made an appointment to see that surgeon and he ordered the MRI to be done the same day I was to see him. His office scheduled wrong and I wasn't finished with the MRI until 10 minutes after my appointment time with the surgeon. I could have made the appointment but I would have been about 12 minutes late. When I finished the MRI (they took my hearing aids...so by this time I'm feeling really vulnerable and overwhelmed)...the MRI tech told me that the surgeon wouldn't see me (12 minutes late and his offices fault...how dare I?) and I had to reschedule. Note: I drove 1 /1/2 hours to downtown Los Angeles...and was facing a 4 hour drive home (traffic, ya know) and he wanted me to reschedule! The whole scenario felt a lot like my experience with The Great A - I'm really sick of pompous surgeons who believe their time is worth so much more than my time!!! So, I didn't reschedule the appointment...the MRI has not been read as far as I know - the skull base surgeons office has not called to follow up. I did get a $7,000.00 bill for the MRI - luckily it was covered by insurance and my co-payment is only $400.00. Can you tell I'm frustrated?? ) Anyway, to make a long story longer...I got fed up and was going to The Great A's office on a mission. He WAS going to address my problem and not give me the run-around again. His co-surgeon had been in the room for the last few appointments I had - and he actually listened and tried things that might help me. Luckily for me, The Great A came to the conclusion " You know, I think it might be that plate " Duh! " Gee, Ya think? That's what I have been telling you for two friggin' years!! " So the co-surgeon took the plate and screws out last week. I am still sore and bruised...the swelling is a lot better. I still have tinglie burning sensation but (maybe it's my imagination...or false hope) I feel like the pain and burning are " different " so I take that as a hopeful sign that someday it will get better. > Am I right in remembering that your surgeon was The Great A? Shameful > of him not to take you more seriously in your troubles, in any case! You are right...he was my surgeon. I know a lot of people rave about him - I did until I found out how he treats atypical post-op patients. Cammie, you would not believe what I have gone through with him. It borderlines on abusive, in my opinion. His co-surgeon is much MUCH better and more compasionate. Thank God for him!! > And hey -- I would wager that you're a better-looking lady than am I, > no matter how dissatisfied you are. And that it will get even better > if you can ditch the troubles that have plagued you post-op. That's > my fervent hope, anyhow. At this age, I don't really care about the cosmetic changes that I have since the surgery. Although he charged me an extra 4K to lipsuction my cheeks and my cheeks now look very weird. I expected some difference in my lips...but again...Dr. A charged a few grand for the " lip thing " (still can't tell you what it was that he did) on my top lip. All in all, I still wish I hadn't got the surgery. But on the other hand...I see so many people with worse problems than I have that I am thankful for what I have. The pain, face changes, and general frustration are no fun...but I can live with it...I've done it for 2 1/2 years so far Cammie, I hope you are doing good. When I read your posts, you sound so happy! That's wonderful ) Caycee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 The tinglies were a problem for you, then -- usually that is transitory, and I was older than you at the time of my surgery (56, almost 57), and emerged unscathed, so don't blame it on your age, at all. Yep, the terrible tinglies were a big problem. Actually they still are, although they aren't nearly as intense as when I used to post and complain right after my surgery. I still have extreme tingling in my lower lip and one side of my upper lip...I read in some study about how many people end up with permanent altered sensation that they would rate as " disturbing " -- I would rate mine as " disturbing " and often " painful " (it feels I am using tabasco sauce for lipstick...that's the best I can describe it. Burning). > Why do you think it's the trigeminal nerve? I ask because I had > shingles in my trigeminal nerve, Actually, I am not an expert either Cammie. The reason I thought it was the trigeminal nerve actually started way back right after my surgery. F mentioned that she would do a search on Trigeminal neuralgia (when I was having so much trouble with the long term tinglies). I have been so frustrated with the help (or lack of) from my original jaw surgeon...I was grasping at straws and found the website about the skull base surgery (skullbaseinstitute.com). I made an appointment to see that surgeon and he ordered the MRI to be done the same day I was to see him. His office scheduled wrong and I wasn't finished with the MRI until 10 minutes after my appointment time with the surgeon. I could have made the appointment but I would have been about 12 minutes late. When I finished the MRI (they took my hearing aids...so by this time I'm feeling really vulnerable and overwhelmed)...the MRI tech told me that the surgeon wouldn't see me (12 minutes late and his offices fault...how dare I?) and I had to reschedule. Note: I drove 1 /1/2 hours to downtown Los Angeles...and was facing a 4 hour drive home (traffic, ya know) and he wanted me to reschedule! The whole scenario felt a lot like my experience with The Great A - I'm really sick of pompous surgeons who believe their time is worth so much more than my time!!! So, I didn't reschedule the appointment...the MRI has not been read as far as I know - the skull base surgeons office has not called to follow up. I did get a $7,000.00 bill for the MRI - luckily it was covered by insurance and my co-payment is only $400.00. Can you tell I'm frustrated?? ) Anyway, to make a long story longer...I got fed up and was going to The Great A's office on a mission. He WAS going to address my problem and not give me the run-around again. His co-surgeon had been in the room for the last few appointments I had - and he actually listened and tried things that might help me. Luckily for me, The Great A came to the conclusion " You know, I think it might be that plate " Duh! " Gee, Ya think? That's what I have been telling you for two friggin' years!! " So the co-surgeon took the plate and screws out last week. I am still sore and bruised...the swelling is a lot better. I still have tinglie burning sensation but (maybe it's my imagination...or false hope) I feel like the pain and burning are " different " so I take that as a hopeful sign that someday it will get better. > Am I right in remembering that your surgeon was The Great A? Shameful > of him not to take you more seriously in your troubles, in any case! You are right...he was my surgeon. I know a lot of people rave about him - I did until I found out how he treats atypical post-op patients. Cammie, you would not believe what I have gone through with him. It borderlines on abusive, in my opinion. His co-surgeon is much MUCH better and more compasionate. Thank God for him!! > And hey -- I would wager that you're a better-looking lady than am I, > no matter how dissatisfied you are. And that it will get even better > if you can ditch the troubles that have plagued you post-op. That's > my fervent hope, anyhow. At this age, I don't really care about the cosmetic changes that I have since the surgery. Although he charged me an extra 4K to lipsuction my cheeks and my cheeks now look very weird. I expected some difference in my lips...but again...Dr. A charged a few grand for the " lip thing " (still can't tell you what it was that he did) on my top lip. All in all, I still wish I hadn't got the surgery. But on the other hand...I see so many people with worse problems than I have that I am thankful for what I have. The pain, face changes, and general frustration are no fun...but I can live with it...I've done it for 2 1/2 years so far Cammie, I hope you are doing good. When I read your posts, you sound so happy! That's wonderful ) Caycee Quote Link to comment Share on other sites More sharing options...
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