It is so good to see I am not alone suffering this horrible disease. I have had it for 3 years, and my neurologist has defined it as "severe TN." I have been recommended urgent referral to a neurosurgeon. I hope my surgery comes soon.
I am 33 years old. I lost my job, and fighting depression. I'm cranked out on the medication and can barely think straight. Bless all of you who suffer this, I offer encouragement that you're not alone. May the Lord Jesus Christ bless you!
I just had Microvascular decompression surgery to correct TN. That was 3 weeks ago and the pain from surgery is worse than any TN pain I ever suffered. I hope that one day I will be thankful for this procedure but today I regret it more than anything i have ever done! Yes, I have been TN pain free since surgery but again, these headaches and the hearing loss are far, far worse.
Ive had TN since I was 14. I have had long periods of remission. Now at the age of 37 its gotten out of control. I am going in for the MVD surgery on Jan 4 and I can't wait. This is no way to live.
@NaturalBeauty0195 I also have TN I'm much older at 33. I have had it for 5 yrs and I am also going to have this surgery some time this year. Medication was helping me for the last 4 years, this year has been the worst. I know your pain, and frustration. You hang in there and keep the faith. Do not let this disorder beat you!!! If your looking for another location I work and my neurosurgeon is at Cleveland Clinic they are also very experienced in this surgery. Good Luck and God Bless you!!
I'm 16 and I have TN. It is the worst pain I have ever felt my whole life. TN is taking over my whole life. I have missed months of school, my social life is ruined, I cannot shower, eat certain things, drink certain things, etc. I have become depressed. I've been in and out of the hospital and have had so many drugs and medications given to me, I could write a book. My mother and I are looking into getting this surgery done soon, and I am praying it foes well.
@NaturalBeauty0195 - Hang in there - there are many great places to get help, Dr. White and his TN group at UT Southwestern are just one of many in the United States where you get this surgery. If you have classic TN, you have a good chance for success.
@clampsno1fan I got it at 20. I'm now 22. I'm in USA so I'm one of the youngest known since it's a very uncommon thing to get especially so young. I was reccomended this surgery but chickened out.. :( I was on Lyrica for my pain and a TON of narcs like oxycontin, hydro/oxycodon, narcodon, ect but nothing helped. One day I woke up painfree. I've been in remission for about 6 mos now and off meds but b4 I was a heavy pill pusher to kill the pain. Idk what happened but I'm thankful.
I am 5 days post op for geniculate neuralgia which is similar just a different branch of nerves.I ended up having two operations in 3 days.I anyone wants to know about the surgery or pain after just ask.
I unfortunately had a lot of complications following my surgeries.As well as left sided palsy and hearing loss I had a stroke .
The pain has been improved which is a good thing but I have paid very highly for this pain relief and I still have some very bad days.
Apparently my nerves were not easy to access as they were all on top of each other very tightly bunched together which made the operation very difficult so not a normal case apparently.
@clt1074 damm bro kus ma moms got dis pain on her face n she been diagnosed wit dat trigeminal neuralgia sht been botherin her for a min is gettin kinda serious n im gettin worried
Well if you want my advice if she is offered the surgery and the pain is bad tell her to llook into all the pros and cons and then make her own mind up but the surgery has a good success rate especially with trigeminal neuralgia around 85% success I believe.Find a surgeon who has performed a lot of the operations and when she sees him go with a list of questions including success rate and chances of it returning.Don't be put off by the bad stories all surgeries have bad stories.
I had this surgery done back around 2004 and have not had the pain that I used to have before. I had mine done at the ucla medical center, from what the surgeon told me is that I had a lot more than usual blood vessels pushing up against the nerve and they just cut the trigeneral nerve from the base. I keep worrying that someday I will get it back I just hope to god that never happens again
If you live anywhere near Greenville, SC, I highly recommend Dr. Charles Kanos. He is an excellent cranial specialist. I had 1 vein and 3 arteries compressing the Trigeminal nerve.
I'm 30 years old. I had trigeminal neuralgia for three years. I had MVD surgery April 7, 2010. I have not had one instance of nerve pain since waking in recovery! I was given my life back! The inscision and opening itself is not painful. There are some headaches that follow due to air entering the cranium during surgery...nothing compared to TN pain. I vomited for 5 day due to anesthesia and equilibrium issues from swelling.
Hey: You deserve to live!. The surgery for trigeminal Neuralgía is not a dangerous operation and it will make your life good again. Do not waste time. Contact your neurosurgeon today. Dr David Neurosurgeon American Assoc of Neurological Surgeons.
Great video. I have MVD scheduled for four days from now. I am very nervous but I know that I simply can't continue living like I've been living. Everybody wish me luck!
Today is the 1 yr anniversary of my TN diagnosis. I'll never forget that first zinger and the downhill spiral that followed. I had the MVD done on Jan 14 of this year. It was just as this video shows. I knew the surgery would either kill me or fix me and I was fine with either option. I am pain free, and have a life again. If you are contemplating MVD - please find a doctor you trust and get your life back. Amazing. Thank you.
Having suffered for 3 years with this condition I too have been face to face with the idea of I'd be better off dead. Being only 38 yrs old and a father of 4 this was not a solution. Iam due for this surgery at The Flinders MC in Adelaide South Australia in 10 days time, and this video has helped me to finally explain to my family how i have suffered even though I tried in vain to hide it. Thankyou.
Good luck to you. I am scheduled May 8th. I have Arnold Chiari Malformation I, had decompression for that. Then I developed this condition and as this gentleman spoke I cried because he was explaining how I feel in words I could not say. I work full time as a teacher, go to grad school, have 2 teenagers, and a supportive husband, but they will never really understand the full extent of the pain. You just want everything to stop and the pain to go away, but it never does, but now it will.
oh,wow-- thanks for the video,and thank you everyone for your comments on the success of this surgery.i'll be having it soon,thank god,buddha,mohammed or whoever.suffer with it about 15 years--kept getting misdiagnosed with tmj.crap !! idiots !! tried all the meds,had all my molars removed on the side of my face where the pain is,of course,neither worked.i already have major depression/anxiety,and it makes both even worse.oh,to be pain free !! i'm so glad for you all--can't wait to join you !!
I had MVD 6 days ago.Glad I did it. After 28 years, no pain. Did everything else, even gamma knife twice, pain returned. Not this time, I hope. Surgery's no big deal. You're back up the next day, and I'm pushing 60 so it's harder at my age. But, I'm home, feeling great.Few ill effects, just discomfort. Right after surgery you can talk normally. There are some possible complications,but they're usually temporary and/or minor. had a problem with swellling but meds fixed it.Just a bad headache.
I had TN when I was just 13 :( I had the surgery earlier this year.
I'm 16 now, and trust me, this surgery got my life back on track. I was really scared because it was my first ever operation. I'm just glad that my parents were so supportive.
I had a hard time getting diagnosed because apparently it's rare in someone my age (well, i was 13 at the time). Two years just to get an idea of what was wrong with me. I had the surgery pretty quick though since I went through a private company.
Although I know suffer slight depression (because of having neurolgia), I'm getting over it rather quikcly. :)
I just want to meet sometimes closer to my age that has it... youngest I've found is 18.
I just had my MVD week ago. Still recovering and feeling great! I am so happy and relieved of my pain. It took me a while to commit to this procedure. After reading other stories and research I found this awesome doctor that made me feel comfortable. I would do this procedure over if I had to. It's really not that bad. Good luck to all!
I just had it done 3 week ago... I wasnt scared before hand, but its not as bad as you think! Make sure you take at least 3 weeks off from work after.
I had MVD two weeks ago and last night my pain in my mouth came back again. I can't tell if this is going to stay or is just the nerve settling down. I pray it is just that.
no. it's gotten worse and I had the balloon compression surgery as well and it got worse aftert that too. Some of the pain is completely gone but is replaced by deep aching pain.
Excellent video. This procedure, microvascular decompression, is also used for hemifacial spasm which affects the 7th cranial nerve and creates spasms on 1/2 the face. An interesting book regarding this procedure is Working In a Small Place, which chronicles the discover of the procedure by Dr Peter Jannetta way back in the 60's when he was only a resident. Incidentally, forty some years later he's still performing the surgery and has trained countless other neurosurgeons in MVD.
thanks for posting this video....I had the MVD in August....no regrets, my HFS has been corrected and I would do it all over again. thank you for bringing awareness for everyone who my have TN or HFS
Informative video. I had the MVD several years ago and woke up with facialpalsy of the right side, hearing loss and constant tinnitus (ringing of the ear). Hearing aids do not help for this type of damage done. I've also been in touch with others who have had complications and quite a few that had to go back for a second or third MVD surgery because spasms came back. One must do their research and make sure that the doctors answer your questions on the risks involved.
It is so good to see I am not alone suffering this horrible disease. I have had it for 3 years, and my neurologist has defined it as "severe TN." I have been recommended urgent referral to a neurosurgeon. I hope my surgery comes soon.
I am 33 years old. I lost my job, and fighting depression. I'm cranked out on the medication and can barely think straight. Bless all of you who suffer this, I offer encouragement that you're not alone. May the Lord Jesus Christ bless you!
roorcs 4 days ago
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I just had Microvascular decompression surgery to correct TN. That was 3 weeks ago and the pain from surgery is worse than any TN pain I ever suffered. I hope that one day I will be thankful for this procedure but today I regret it more than anything i have ever done! Yes, I have been TN pain free since surgery but again, these headaches and the hearing loss are far, far worse.
woperinoboyz 4 weeks ago
Ive had TN since I was 14. I have had long periods of remission. Now at the age of 37 its gotten out of control. I am going in for the MVD surgery on Jan 4 and I can't wait. This is no way to live.
ericamanda01 3 months ago
@NaturalBeauty0195 I also have TN I'm much older at 33. I have had it for 5 yrs and I am also going to have this surgery some time this year. Medication was helping me for the last 4 years, this year has been the worst. I know your pain, and frustration. You hang in there and keep the faith. Do not let this disorder beat you!!! If your looking for another location I work and my neurosurgeon is at Cleveland Clinic they are also very experienced in this surgery. Good Luck and God Bless you!!
MsNicole0913 4 months ago
I'm 16 and I have TN. It is the worst pain I have ever felt my whole life. TN is taking over my whole life. I have missed months of school, my social life is ruined, I cannot shower, eat certain things, drink certain things, etc. I have become depressed. I've been in and out of the hospital and have had so many drugs and medications given to me, I could write a book. My mother and I are looking into getting this surgery done soon, and I am praying it foes well.
NaturalBeauty0195 4 months ago
@NaturalBeauty0195 - Hang in there - there are many great places to get help, Dr. White and his TN group at UT Southwestern are just one of many in the United States where you get this surgery. If you have classic TN, you have a good chance for success.
chanclamp 4 months ago in playlist More videos from chanclamp
@clampsno1fan I got it at 20. I'm now 22. I'm in USA so I'm one of the youngest known since it's a very uncommon thing to get especially so young. I was reccomended this surgery but chickened out.. :( I was on Lyrica for my pain and a TON of narcs like oxycontin, hydro/oxycodon, narcodon, ect but nothing helped. One day I woke up painfree. I've been in remission for about 6 mos now and off meds but b4 I was a heavy pill pusher to kill the pain. Idk what happened but I'm thankful.
SpoiledKitty07 1 year ago
I am 5 days post op for geniculate neuralgia which is similar just a different branch of nerves.I ended up having two operations in 3 days.I anyone wants to know about the surgery or pain after just ask.
clt1074 1 year ago
@clt1074 does it work..?
YungKing5 1 year ago
@YungKing5
I unfortunately had a lot of complications following my surgeries.As well as left sided palsy and hearing loss I had a stroke .
The pain has been improved which is a good thing but I have paid very highly for this pain relief and I still have some very bad days.
Apparently my nerves were not easy to access as they were all on top of each other very tightly bunched together which made the operation very difficult so not a normal case apparently.
clt1074 1 year ago
@clt1074 damm bro kus ma moms got dis pain on her face n she been diagnosed wit dat trigeminal neuralgia sht been botherin her for a min is gettin kinda serious n im gettin worried
YungKing5 1 year ago
@YungKing5
Well if you want my advice if she is offered the surgery and the pain is bad tell her to llook into all the pros and cons and then make her own mind up but the surgery has a good success rate especially with trigeminal neuralgia around 85% success I believe.Find a surgeon who has performed a lot of the operations and when she sees him go with a list of questions including success rate and chances of it returning.Don't be put off by the bad stories all surgeries have bad stories.
clt1074 1 year ago
@YungKing5 but there are many more good ones too.I hope things work out for your mum and her pain is sorted.
clt1074 1 year ago
I had this surgery done back around 2004 and have not had the pain that I used to have before. I had mine done at the ucla medical center, from what the surgeon told me is that I had a lot more than usual blood vessels pushing up against the nerve and they just cut the trigeneral nerve from the base. I keep worrying that someday I will get it back I just hope to god that never happens again
abk702 1 year ago
Comment removed
abk702 1 year ago
If you live anywhere near Greenville, SC, I highly recommend Dr. Charles Kanos. He is an excellent cranial specialist. I had 1 vein and 3 arteries compressing the Trigeminal nerve.
abbott24 1 year ago
I'm 30 years old. I had trigeminal neuralgia for three years. I had MVD surgery April 7, 2010. I have not had one instance of nerve pain since waking in recovery! I was given my life back! The inscision and opening itself is not painful. There are some headaches that follow due to air entering the cranium during surgery...nothing compared to TN pain. I vomited for 5 day due to anesthesia and equilibrium issues from swelling.
abbott24 1 year ago
Have had this for 20. I have had 7 operations and everyone of them have helped. But, it always comes back.
1002es 2 years ago
i got ms since 2001 .phisicly i am fit also suffer fromTN .will you recomend me this operation or suicde????????????
nasrin42 2 years ago
@nasrin42
Hey: You deserve to live!. The surgery for trigeminal Neuralgía is not a dangerous operation and it will make your life good again. Do not waste time. Contact your neurosurgeon today. Dr David Neurosurgeon American Assoc of Neurological Surgeons.
neurowizard 2 years ago
my dad's having this surgery tomorrow and i was very nervous about it.
this video and all of everyone's comments have really comforted me, thank you to all <3
god bless!
0usernamesareleft 2 years ago
Great video. I have MVD scheduled for four days from now. I am very nervous but I know that I simply can't continue living like I've been living. Everybody wish me luck!
smiaaron 2 years ago
Today is the 1 yr anniversary of my TN diagnosis. I'll never forget that first zinger and the downhill spiral that followed. I had the MVD done on Jan 14 of this year. It was just as this video shows. I knew the surgery would either kill me or fix me and I was fine with either option. I am pain free, and have a life again. If you are contemplating MVD - please find a doctor you trust and get your life back. Amazing. Thank you.
gonzoroc 2 years ago
Having suffered for 3 years with this condition I too have been face to face with the idea of I'd be better off dead. Being only 38 yrs old and a father of 4 this was not a solution. Iam due for this surgery at The Flinders MC in Adelaide South Australia in 10 days time, and this video has helped me to finally explain to my family how i have suffered even though I tried in vain to hide it. Thankyou.
454monaro 3 years ago
Good luck to you. I am scheduled May 8th. I have Arnold Chiari Malformation I, had decompression for that. Then I developed this condition and as this gentleman spoke I cried because he was explaining how I feel in words I could not say. I work full time as a teacher, go to grad school, have 2 teenagers, and a supportive husband, but they will never really understand the full extent of the pain. You just want everything to stop and the pain to go away, but it never does, but now it will.
dkorhammer 2 years ago
oh,wow-- thanks for the video,and thank you everyone for your comments on the success of this surgery.i'll be having it soon,thank god,buddha,mohammed or whoever.suffer with it about 15 years--kept getting misdiagnosed with tmj.crap !! idiots !! tried all the meds,had all my molars removed on the side of my face where the pain is,of course,neither worked.i already have major depression/anxiety,and it makes both even worse.oh,to be pain free !! i'm so glad for you all--can't wait to join you !!
luvdogs50 3 years ago
Thanks for making this video. I have hemifacial spasm. Some days are better than others.I hope to have successful surgery one day. I'm happy for you!
mrwheyme 3 years ago
when surgery is over when you have the microvascular decompression surgery what happen then can you talk what happens?
cofield07 3 years ago
I had MVD 6 days ago.Glad I did it. After 28 years, no pain. Did everything else, even gamma knife twice, pain returned. Not this time, I hope. Surgery's no big deal. You're back up the next day, and I'm pushing 60 so it's harder at my age. But, I'm home, feeling great.Few ill effects, just discomfort. Right after surgery you can talk normally. There are some possible complications,but they're usually temporary and/or minor. had a problem with swellling but meds fixed it.Just a bad headache.
redhotfoot 3 years ago
Thanks so much. As newly diagnosed with a positive MRI this is immensely helpful.
viands 3 years ago
I had TN when I was just 13 :( I had the surgery earlier this year.
I'm 16 now, and trust me, this surgery got my life back on track. I was really scared because it was my first ever operation. I'm just glad that my parents were so supportive.
clampsno1fan 3 years ago
I had a hard time getting diagnosed because apparently it's rare in someone my age (well, i was 13 at the time). Two years just to get an idea of what was wrong with me. I had the surgery pretty quick though since I went through a private company.
Although I know suffer slight depression (because of having neurolgia), I'm getting over it rather quikcly. :)
I just want to meet sometimes closer to my age that has it... youngest I've found is 18.
clampsno1fan 3 years ago
I had MVD in May of this year best thing I have ever had done .....pain free for the first time in 5 years
twigsy01 3 years ago
I've got an MVD scheduled next month. Thanks for posting this. It was very informative.
MagicBulletRegret 3 years ago
I just had my MVD week ago. Still recovering and feeling great! I am so happy and relieved of my pain. It took me a while to commit to this procedure. After reading other stories and research I found this awesome doctor that made me feel comfortable. I would do this procedure over if I had to. It's really not that bad. Good luck to all!
cotykika 3 years ago
I have an MVP schedueled for July. I'm scared to death. I just know I can't live like this anymore. Wish me luck!
rctalt2805 3 years ago
I just had it done 3 week ago... I wasnt scared before hand, but its not as bad as you think! Make sure you take at least 3 weeks off from work after.
xbuttafly15x 3 years ago
who is that doctor?
gfrt55 3 years ago
I had MVD two weeks ago and last night my pain in my mouth came back again. I can't tell if this is going to stay or is just the nerve settling down. I pray it is just that.
downtapuptap 4 years ago
Hi could you please tell me how long you've had your pain?
gfrt55 3 years ago
2 years and counting
downtapuptap 3 years ago
I read your post today. I'm having this done in July. Has your pain gone away yet?
rctalt2805 3 years ago
no. it's gotten worse and I had the balloon compression surgery as well and it got worse aftert that too. Some of the pain is completely gone but is replaced by deep aching pain.
downtapuptap 3 years ago
Excellent video. This procedure, microvascular decompression, is also used for hemifacial spasm which affects the 7th cranial nerve and creates spasms on 1/2 the face. An interesting book regarding this procedure is Working In a Small Place, which chronicles the discover of the procedure by Dr Peter Jannetta way back in the 60's when he was only a resident. Incidentally, forty some years later he's still performing the surgery and has trained countless other neurosurgeons in MVD.
blacktieservice 4 years ago
thanks for posting this video....I had the MVD in August....no regrets, my HFS has been corrected and I would do it all over again. thank you for bringing awareness for everyone who my have TN or HFS
peece63 4 years ago
Informative video. I had the MVD several years ago and woke up with facialpalsy of the right side, hearing loss and constant tinnitus (ringing of the ear). Hearing aids do not help for this type of damage done. I've also been in touch with others who have had complications and quite a few that had to go back for a second or third MVD surgery because spasms came back. One must do their research and make sure that the doctors answer your questions on the risks involved.
crazyKPG92 4 years ago
You said it all. i had that pain and side effects of the medication until I had the surgery few weeks ago. May you and I stay free of pain forever.
Lizzie1934 4 years ago