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Old 09-02-2011, 03:13 PM #1
ipreferdosequis ipreferdosequis is offline
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Default atypical TN...MVD on way

My TN conditions started when I was 19. I have the atypical TN with an unrelenting deep burning, boring pain throughout my gums, ear, throat, tounge, all on the left side of my head/face.. that is there from the moment I wake till the moment I sleep.

I got nothing positive to tell ya about TN...it took about 3 years for anyone to even diagnose me with atypical TN- after going through a handful of family docs, group of dentists, ear/nose/throat, orthodontist, TMJ expert...an oral surgeon finally sent me to a neurologist whom then diagnosed me. After an entire year of testing meds like tegretol/carbamezapine/oxcarbazepine, baclofen, amitriptyline, savella...all with almost no pain relief whatsoever, I was sent to the neuro-surgeon who wants to perform Micro-Vascular Decompression surgery, to relieve the pressure created by my blood vessel riding against the nerve.

My atypical TN is very much affected by foods. In fact most foods seem to make my TN flare up, especially coffee, potent onions, salts/peppers, spices, dark beers, ect... pretty much anything that will stimulate the nerves- which is almost everything. Hell, when I take a sip of ice cold water as soon as the liquid touches the back of my gums I feel a horrible sensation travel throughout my ear and down my throat.

TN has literally taken over my life the last 4 years. I am unable to continue college due to the pain making concentration and comprehension much more difficult, plus the meds are also a huge learning distraction as well. I'm currently on Lyrica 150mg twice daily...makes me a zombie but usually dulls the unrelenting pain, key word there is USUALLY. However its still not worth living this way... the pressure on left side of face is almost unbearable and messes with my ear/hearing a lot. aTN makes me depressed and moody... each day is a struggle. My MVD is scheduled for a month from now...I gotta admit it scares the hell out of me.
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Old 09-03-2011, 08:22 AM #2
jjlsongbird jjlsongbird is offline
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I'm so sorry to read about the suffering you are going through. I had a MVD about 2 years ago that was successful in relieving all pain and getting me off medication with all its side effects. While the surgery was a bit scary to contemplate, my pain was escalating and I had tried just about everything else. The surgery didn't turn out to be that difficult to go through and recover from. And you owe it to yourself to try everything you can to make your life better.

Have you had a second opinion about the effectiveness of an MVD for the kind of TN you have? Do tests show a compression? (If they don't you still could have one...).

I hope you can find some relief.
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Old 09-03-2011, 02:11 PM #3
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I also hope that you'll get some relief. I imagine its hard to even consider seeing more doctors after all the ones you've seen that didn't diagnose you properly, but it would be a good idea to see another one. There is also an excellent video by Dr. Casey if you haven't already seen it. I'll see if I can find the link and post it here.

Here is the video link. Its about 2 hours long so watch it if you can. There is a lot of good info.


Last edited by EE03; 09-03-2011 at 02:29 PM. Reason: add video link
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Old 09-05-2011, 12:52 AM #4
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I had a MVD 8 months ago at the age of 22. It was successful in taking away my major pain , but some is still there. It was completely worth every single minute of recovery to have this little relief i do get. It is scary and overwhelming but hopefully you have a wonderful doctor and get excellent after care!

take care!!!
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Old 09-07-2011, 03:18 PM #5
ipreferdosequis ipreferdosequis is offline
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Default am i MVD candidate?

Quote:
Originally Posted by sadie324 View Post
I had a MVD 8 months ago at the age of 22. It was successful in taking away my major pain , but some is still there. It was completely worth every single minute of recovery to have this little relief i do get. It is scary and overwhelming but hopefully you have a wonderful doctor and get excellent after care!

take care!!!
thanks for the reply sadie, nice to see hear from others my age

my biggest fear in my case is I'm finding many physicians don't bother with MVD for atypical cases. My doc's just seem to have no clue what else to do except operate due to how much pain I'm in. I have only experienced the sudden electric stabbing shocks of typical trigeminal about 20 times throughout the last 3 years, which I am very grateful for. My horrible burning pain however has slowly spread throughout my face and started sticking around for weeks on end, then became a daily pain that slowly got worse throughout the day until by the end of the night I wanted to kill myself. And now for about the last 9 months that pain is unrelenting, constant, and consumes my life. I've also developed a pressure in my sinus cavities, under my eye and deep in my ear that is unbearable...I feel like I have a sinus infection every day, like a massive head cold along with a migraine. The majority of my pain is on my back gums, back of the tongue into the throat region, and deep into my ear...which drives me crazy. My hearing is off, my taste many times is off- side of my tongue feels like sandpaper constantly. Foods are a major cause of flaring up my pain- coffee almost makes me cry. For some very odd reason however I can find minor relief from my pain while eating...my docs don't understand that one...I dont know if its the process of chewing or what but my pain subsides for only moments while I eat...unless i'm eating jalapenos then it explodes with pain..hehe

anyway I'd love to hear opinions from anyone....do I truly sound like a candidate for MVD? many of my findings online say otherwise...with my surgery a month away that kinda freaks me out. I also don't like that my symptoms also fit the description for other facial pain..like anesthesia dolorosa...which I never heard of until this site...obviously I haven't had any surgeries yet that would have given me AD, but the description of pain is spot on besides the extreme facial numbness, I only have minor numbness. I've never had any facial trauma that I recall... could AD occur from a simple cavity being filled at the dentist?

sorry for goin on a little rant..this site is great...first few times I've communicated with others with facial pain...any feedback is welcome
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Old 09-08-2011, 08:40 PM #6
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Quote:
Originally Posted by ipreferdosequis View Post
thanks for the reply sadie, nice to see hear from others my age

my biggest fear in my case is I'm finding many physicians don't bother with MVD for atypical cases. My doc's just seem to have no clue what else to do except operate due to how much pain I'm in. I have only experienced the sudden electric stabbing shocks of typical trigeminal about 20 times throughout the last 3 years, which I am very grateful for. My horrible burning pain however has slowly spread throughout my face and started sticking around for weeks on end, then became a daily pain that slowly got worse throughout the day until by the end of the night I wanted to kill myself. And now for about the last 9 months that pain is unrelenting, constant, and consumes my life. I've also developed a pressure in my sinus cavities, under my eye and deep in my ear that is unbearable...I feel like I have a sinus infection every day, like a massive head cold along with a migraine. The majority of my pain is on my back gums, back of the tongue into the throat region, and deep into my ear...which drives me crazy. My hearing is off, my taste many times is off- side of my tongue feels like sandpaper constantly. Foods are a major cause of flaring up my pain- coffee almost makes me cry. For some very odd reason however I can find minor relief from my pain while eating...my docs don't understand that one...I dont know if its the process of chewing or what but my pain subsides for only moments while I eat...unless i'm eating jalapenos then it explodes with pain..hehe

anyway I'd love to hear opinions from anyone....do I truly sound like a candidate for MVD? many of my findings online say otherwise...with my surgery a month away that kinda freaks me out. I also don't like that my symptoms also fit the description for other facial pain..like anesthesia dolorosa...which I never heard of until this site...obviously I haven't had any surgeries yet that would have given me AD, but the description of pain is spot on besides the extreme facial numbness, I only have minor numbness. I've never had any facial trauma that I recall... could AD occur from a simple cavity being filled at the dentist?

sorry for goin on a little rant..this site is great...first few times I've communicated with others with facial pain...any feedback is welcome


Honestly, from my research doctors dont do the surgery for Atypical TN. BUT if one is going to do it, go for it!!! If your in that much pain you need to do whats best for you. If you are already not in school/job now is the best time. I can relate 100% to that point where your ready for life to be over, but honestly surgery saved my life. yes i do have typical but also have atypical symptoms. The surgery made both of those less painful. It was the best decision i ever made.

I wish you the best and hope that the surgery shows something on the nerve so that they see whats going on and can fix it for you. Its so funny how you talk about coffee because I am the same way and i LOOOOVE coffee so its horrible first thing in the morning when i make my kcup and i cant drink it for an hour!

I was in my last semester of college during my worst pain and i still to this day dont know how i made it through. I think it was the thought that this is the end your almost done.. but i must add that i was going to the ER every week for pain shots because it would get unreal. I think you made a good decision by worrying about your health because thats what you need to do. No one deserves to live like this and college isnt going anywhere. To lighten the mood a bit, the economy sucks, jobs opportunities suck!

Please feel free to message me anytime with any questions, concerns, or just need to talk about this. It is tough because you are at this crazy stage of college in your life but YOU WILL MAKE IT THROUGH THIS!!!

keep in touch!
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Old 09-08-2011, 09:04 PM #7
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If you take the time to watch Dr. Casey, he addresses the current thinking regarding MVD's for atypical pain. You might get some pertinent insight into what you are asking about although not from a patients perspective, but still key to your issues.

Last edited by EE03; 09-08-2011 at 09:22 PM.
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Old 09-09-2011, 09:46 AM #8
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Quote:
Originally Posted by EE03 View Post
If you take the time to watch Dr. Casey, he addresses the current thinking regarding MVD's for atypical pain. You might get some pertinent insight into what you are asking about although not from a patients perspective, but still key to your issues.
Could you summarize what the thinking is about MVD for atypical pain for those who don't want to watch a two-hour video?
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Old 09-09-2011, 04:00 PM #9
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Quote:
Originally Posted by jjlsongbird View Post
Could you summarize what the thinking is about MVD for atypical pain for those who don't want to watch a two-hour video?
When it was originally posted, I probably could summarize it but that was quite some time ago. The thinking has shifted regarding the benefits of an MVD on atypical pain and the timing seems to be more important (as in the earlier the MVD from the onset of pain, the better). I'm pulling this from a very medicated memory so take it with a grain of salt. Hence, I still urge anyone considering an MVD to watch it. Dr. Casey is a practicing neurosurgeon in Michigan and while the video is long, its very watchable for patients.
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Old 09-12-2011, 03:30 PM #10
ipreferdosequis ipreferdosequis is offline
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Quote:
Originally Posted by EE03 View Post
When it was originally posted, I probably could summarize it but that was quite some time ago. The thinking has shifted regarding the benefits of an MVD on atypical pain and the timing seems to be more important (as in the earlier the MVD from the onset of pain, the better). I'm pulling this from a very medicated memory so take it with a grain of salt. Hence, I still urge anyone considering an MVD to watch it. Dr. Casey is a practicing neurosurgeon in Michigan and while the video is long, its very watchable for patients.
thanks for the tip, where can i find this video?
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