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.
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.
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’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.
@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.
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!
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.
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.
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.
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 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 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!
Thank you for sharing your stories. I wish all of you the best. My husband suffers from TN, currently controlled with multiple medicatons but is now considering MVD. We visited Mayo Clinic earlier this year for the formal diagnosis of TN and would go back there for the surgery. Can someone provide any feedback on Mayo? Also, it appears that most of you have positive responses, what is the total recovery time both in and out of the hospital?
I am 8 days out of having the MVD surgery. I had a really rough recovery. I was hospitalized for 6 days because the pain was so bad. I think a lot of it was muscle spasms. My neurosurgeon consulted pain management and after 3 different medications, Baclofen helped the spasms. I am now on a Fentanyl patch, Percocet as needed and Stadol nasal spray when the Percocet doesn’t work. I have Atypical TN and so far, my pain is still there. I’m sad that I don’t have relief and I dread seeing more specialists to figure out what I have.
Can anyone who has been through it, please answer the question posted above … what is the cost of MVD surgery? Finding out doctors’ fees and hospital fees in advance is tantamount to cracking some kind of secret code. How can I comparison shop if no one will provide figures?
I have had TN for a little over 10 years and scheduled this surgery May 19. I am a little nervous, just because it involves the brain. If your Neurologist does not send you to a Neurosurgeon after a period of, time,longer than a year or more ask him to send you to one. Not once was it suggested that I see one until I asked to be referred to one. Otherwise this surgery would have happened a long time ago. Also if you are not satisfied with your current Dr. ask your regular MD to refer you to a different one. Don’t just accept the Neurologist, thinking he is the only one insurance will approve. I am hoping that my surgery turns out as successful as a lot of people have had. I have classical TN and was told I was a great candidate for this surgery.
I have had TN for a little over 10 years and scheduled this surgery May 19. I am a little nervous, just because it involves the brain. If your Neurologist does not send you to a Neurosurgeon after a period of, time,longer than a year or more ask him to send you to one. Not once was it suggested that I see one until I asked to be referred to one. Otherwise this surgery would have happened a long time ago. Also if you are not satisfied with your current Dr. ask your regular MD to refer you to a different one. Don’t just accept the Neurologist, thinking he is the only one insurance will approve. I am hoping that my surgery turns out as successful as a lot of people have had. I have classical TN and was told I was a great candidate for this surgery.
I am 33 years old and a mother of two little girls and suffered from TN for three months. I was diagnosed with it quickly thanks to my GP and neurologist. Tried all the medication available and my body simply did not agree with them. I was scared, suffering from pain and could not work/look after my kids/live my life. Once i found out through these sites that i wasn’t the only one suffering from TN i felt better. Had my MVD at monash hospital(jessie mcpherson) melbourne. Dr.Danks was my hero. Its been 10weeks and i still suffer from migrane and been unable to return to work. I get tired very easy and still need help with the kids but it’ll be all over soon. Don’t be scared to undergo a surgery, dont postpone your life anymore. Trust the advance medicine. Everything in life has a risk. Take that risk to give yourself and your loved ones a pain free life.
SA above – Thank god I seen your message on here. Im waiting to see a Neurosurgeon at RAH in Adelaide. Im a 35 yr old mum of two young kids and was worried about the risks. Im awaiting an MRI to figure out where the problem is. Im sick of the meds, Im useless at the moment. Cant work, am so nauseous and tired I might as well not be here for all the good I am to my family. I cant drive. Im not myself. Im pretty much going to demand and MVD if it has a remote chance of fixing this TN. I cannot live like this any longer. Enough is enough. Your message gives me hope…..so thankyou )
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Tags: decompression, electric, face, microvascular, mvd, neuralgia, pain, shock, surgery, trigeminal, trigeminal neuralgia
Comments: 33 comments
All the surgery fields that are marked with REQ must be filled when searched for
cofield07
May 21st, 2010 at 5:05 am
when surgery is over when you have the microvascular decompression surgery what happen then can you talk what happens?
viands
May 21st, 2010 at 5:05 am
Thanks so much. As newly diagnosed with a positive MRI this is immensely helpful.
dkorhammer
May 21st, 2010 at 5:05 am
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.
454monaro
May 21st, 2010 at 5:05 am
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.
luvdogs50
May 21st, 2010 at 5:05 am
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 !!
mrwheyme
May 21st, 2010 at 5:05 am
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!
redhotfoot
May 21st, 2010 at 5:05 am
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.
abbott24
May 21st, 2010 at 5:05 am
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.
1002es
May 21st, 2010 at 5:05 am
Have had this for 20. I have had 7 operations and everyone of them have helped. But, it always comes back.
neurowizard
May 21st, 2010 at 5:05 am
@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.
nasrin42
May 21st, 2010 at 5:05 am
i got ms since 2001 .phisicly i am fit also suffer fromTN .will you recomend me this operation or suicde????????????
0usernamesareleft
May 21st, 2010 at 5:05 am
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!
smiaaron
May 21st, 2010 at 5:05 am
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!
gonzoroc
May 21st, 2010 at 5:05 am
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.
abbott24
May 21st, 2010 at 5:05 am
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.
MagicBulletRegret
May 21st, 2010 at 5:05 am
I’ve got an MVD scheduled next month. Thanks for posting this. It was very informative.
xbuttafly15x
May 21st, 2010 at 5:05 am
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.
downtapuptap
May 21st, 2010 at 5:05 am
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
May 21st, 2010 at 5:05 am
2 years and counting
rctalt2805
May 21st, 2010 at 5:05 am
I read your post today. I’m having this done in July. Has your pain gone away yet?
rctalt2805
May 21st, 2010 at 5:05 am
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!
clampsno1fan
May 21st, 2010 at 5:05 am
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
May 21st, 2010 at 5:05 am
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.
twigsy01
May 21st, 2010 at 5:05 am
I had MVD in May of this year best thing I have ever had done …..pain free for the first time in 5 years
cotykika
May 21st, 2010 at 5:05 am
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!
Patty
July 18th, 2010 at 5:55 pm
Thank you for sharing your stories. I wish all of you the best.
My husband suffers from TN, currently controlled with multiple medicatons but is now considering MVD. We visited Mayo Clinic earlier this year for the formal diagnosis of TN and would go back there for the surgery. Can someone provide any feedback on Mayo? Also, it appears that most of you have positive responses, what is the total recovery time both in and out of the hospital?
C Mallion
August 4th, 2010 at 2:08 pm
what is the cost of MVD surgery?
Jenna
October 21st, 2010 at 3:13 pm
I am 8 days out of having the MVD surgery. I had a really rough recovery. I was hospitalized for 6 days because the pain was so bad. I think a lot of it was muscle spasms. My neurosurgeon consulted pain management and after 3 different medications, Baclofen helped the spasms. I am now on a Fentanyl patch, Percocet as needed and Stadol nasal spray when the Percocet doesn’t work. I have Atypical TN and so far, my pain is still there. I’m sad that I don’t have relief and I dread seeing more specialists to figure out what I have.
Dena
December 11th, 2010 at 10:21 am
Can anyone who has been through it, please answer the question posted above … what is the cost of MVD surgery? Finding out doctors’ fees and hospital fees in advance is tantamount to cracking some kind of secret code. How can I comparison shop if no one will provide figures?
debra debord
May 9th, 2011 at 10:20 am
I have had TN for a little over 10 years and scheduled this surgery May 19. I am a little nervous, just because it involves the brain. If your Neurologist does not send you to a Neurosurgeon after a period of, time,longer than a year or more ask him to send you to one. Not once was it suggested that I see one until I asked to be referred to one. Otherwise this surgery would have happened a long time ago. Also if you are not satisfied with your current Dr. ask your regular MD to refer you to a different one. Don’t just accept the Neurologist, thinking he is the only one insurance will approve. I am hoping that my surgery turns out as successful as a lot of people have had. I have classical TN and was told I was a great candidate for this surgery.
debra debord
May 9th, 2011 at 10:20 am
I have had TN for a little over 10 years and scheduled this surgery May 19. I am a little nervous, just because it involves the brain. If your Neurologist does not send you to a Neurosurgeon after a period of, time,longer than a year or more ask him to send you to one. Not once was it suggested that I see one until I asked to be referred to one. Otherwise this surgery would have happened a long time ago. Also if you are not satisfied with your current Dr. ask your regular MD to refer you to a different one. Don’t just accept the Neurologist, thinking he is the only one insurance will approve. I am hoping that my surgery turns out as successful as a lot of people have had. I have classical TN and was told I was a great candidate for this surgery.
SA
June 23rd, 2011 at 9:47 am
I am 33 years old and a mother of two little girls and suffered from TN for three months. I was diagnosed with it quickly thanks to my GP and neurologist. Tried all the medication available and my body simply did not agree with them. I was scared, suffering from pain and could not work/look after my kids/live my life. Once i found out through these sites that i wasn’t the only one suffering from TN i felt better. Had my MVD at monash hospital(jessie mcpherson) melbourne. Dr.Danks was my hero. Its been 10weeks and i still suffer from migrane and been unable to return to work. I get tired very easy and still need help with the kids but it’ll be all over soon. Don’t be scared to undergo a surgery, dont postpone your life anymore. Trust the advance medicine. Everything in life has a risk. Take that risk to give yourself and your loved ones a pain free life.
Kelly NH
July 25th, 2011 at 9:26 pm
SA above – Thank god I seen your message on here. Im waiting to see a Neurosurgeon at RAH in Adelaide. Im a 35 yr old mum of two young kids and was worried about the risks. Im awaiting an MRI to figure out where the problem is. Im sick of the meds, Im useless at the moment. Cant work, am so nauseous and tired I might as well not be here for all the good I am to my family. I cant drive. Im not myself. Im pretty much going to demand and MVD if it has a remote chance of fixing this TN. I cannot live like this any longer. Enough is enough. Your message gives me hope…..so thankyou
)
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