Seems like all I hear about is the bad stuff, which is scaring the crap out of me, because I'm headed to Mayo Clinic on Oct 10. I want to hear GOOD NEWS, and not all the scary stuff. I've been an emotional wreck lately, and I think its because of all the negative news I hear from MVD's & other procedures. Anyone have 100% success stories to share?
Hello yes, I am in remission…there is no cure. The MVD I had might last a few months or a few years. I’m at 2 years and doing good! I sometimes feel guilty that my story got better and better, but I want to give hope!
Most here who have had success with MVD , don’t come around here much. They are out living lives! Maybe total remission, or maybe less pain and doin okay.
I do, come here, because this site helped me to research my MVD . They helped me here with the scary parts, the success parts, the setback parts.
I was going to mayo , but they had much read tape to say the least. I wanted an MVD surgeon who had done thousands of MVD . I only waited a few weeks.
So I flew to dr. Ken Casey. He Learned under MVD inventor in the 70s!!
I have no more patch pain on my face, and no more meds.
I do get 2% of pain when in the frozen food isle! Or air condition on my face. I consider that success… But only 1 of the 2 years has been 100% pain free since MVD.
The other year, I lived about 5% to 10% of pain. I have had PTSD, depression, unemployed, lost friends, and strained my marriage before and right after MVD.
I was given TN in oct. 2010.
Went under the knife one year later. Those meds took my life and my IQ. I was ready.
Don’t read the bad…I did because I wanted to be informed. But, 95% for MVD good ,
CAN be yours with a combo of :
BEST surgeon who has at minimal done hundreds
You have not had a gamma or cyber done first
Your anatomy is the optimal situation for MVD
If you have had TN for only 5 years or less. 3 is better.
Does this help?
Robbie, despite what many might think after reading my journey with bilateral TN, my MVD was a success! A huge life saving success!!!
Pre-MVD on April 9th, 2013, my right side TN1 was well managed on tegretol.
My left side TN2 however came out of a lengthy 10 year remission and became resistant to meds and was worsening each day. I was doped up on 3 different meds, unable to function due to the horrid pain and heavy side effects of the meds that didn’t even touch my pain.
My TN2 pain affected my ear, teeth, cheek and jaw, as it progressed I started having TN1 shocks as well and these would affect the side of my nose, my throat as well as along the TN2 areas.
To this day, I don’t know how I survived the relentless pain for over 8 months non-stop. Truly.
I had a few things going against me heading into my MVD…
- I had predominantly TN2, which has less favourable results than TN1
- I had TN a long time, since 2002, and some studies as KC mentioned, site better results if MVD is done within 3-5 yrs of onset.
I knew MVD wouldn’t “cure” me of TN, but based on much research I also knew it was my best chance to reduce my pain significantly without further damaging my nerve.
I went into surgery without knowing if compressions would be found, my MRIs since 2002 were “normal”.
3 compressions were found ( 2 major arteries above and below the nerve as well as an unusually rare large vein) and my neuro surgeon was able to decompress them.
Post-op, I was able to reduce my meds from 3 to only 1.
AND my pain was now controlled by only Tegretol.
That is HUGE!
Key word : controlled!!
My brain clarity returned, I was no longer in a med induced fog, and I could start to drive again and regain some independence…
Although I’ve had to increase the Tegretol twice post-op, the increases are covering my pain almost 80%. Compare that to pre-MVD where the meds covered my pain 0%
I would have another MVD in a heartbeat.
It’s invasive surgery, yes. But, it’s the only procedure available that if done by a highly qualified neurosurgeon causes NO further damage to the nerve.
That was important to me, because in my lifetime a cure will be found and I did not want to lessen my chances at a future potential cure due to damage from a procedure.
There are no guarantees but sometimes we must take a leap of faith, I’m sure glad I did.
Choosing a procedure is a personal decision, one that must be made after much research.
Success can be measured in many ways, my story to me, was and is a success!
((( hugs ))) Mimi xx
Hello:
I am in remission right now after successful MVD surgery on June 27th. I have / had, Geniculate Neuralgia.
Although my MVD was successful, I had a CSF leak that pooled under my scalp at the base of the incision.
My initial recovery was dreadful, I was puking every 20 minutes for 3 and a half weeks. They think that because of all the retching and extreme pressure changes, my duraplasty tore.
I had the dura repaired on Monday the 30th of September and am recovering from that now.
The GN pain has shown its head twice - for very brief moments. Just often enough to tell me its still around - and to keep me in fear of it.
Although I am still recovering - I believe my story as a success. I am not living with GN every second of every day anymore. I am off of all the medications I was on before (and my word that was brutal withdrawal).
My energy levels are up, and my general well being is so much better.
Smash
Robbie here you go.....My TN started at age 25 which was 38 years ago. I bounced from neurologist to dentists to holistic healers to dental surgeons and even think I saw a Witch Doctor, for 8 years to no avail. In 12/ 1983 I went to the University of PA with my wife and saw their head neurosurgeon who diagnosed me with TN and laid out all the odds and how the surgery could go. He was not very reassuring as to its success but he was right on the diagnosis. Remember this was 30 years ago and much less was known about TN. The following week I went to Temple and saw DR Kenning on the Temple Neurology staff. He immediately diagnosed me with TN and assured me he could help. He worked for DR Janetta in Pittsburgh who invented the surgery and he was very familiar with the surgery. He looked my wife in her eyes and said :"Dont worry I will take good care of Him". To make a long story short I had my surgery 30 years ago on New Years eve and have been totally pain free for 30 years. There are thousands just like me but unfortunately you dont hear about the successes as much as the ones that arent as successful. You have an experienced surgeon in a top flight facility you will just do great. Hopefully in just 3 more days you will be TN pain free...Good luck..Ed
Hi Robbie! I had my MVD 5/21/12 and have been 100% TN pain free on my right side since then. The horror stories can be scary, but honestly human nature is to get the word out about a "bad" experience and never mention the good, whether it pertains to service at a restaurant or a successful brain surgery. I had about 5 years of worsening TN pain, was on Tegretol and Neurontin which were only marginally helpful at best. The surgery was a beast, the first 18 hours or so of recovery were tough but from there it has only been up and up for my right side. By August 2012 I was completely off my meds and I have had absolutely zero pain. The only reminder that I even had surgery is a small spot of numbness on the right side of my tongue and of course my scar. For me it was the 100% right choice that I have never regretted. Well, I may have regretted doing it immediately post op while throwing up and wondering why my head weighed 100 pounds, but once I got past that it's been great. Good luck and keep us posted!
ED… thanks for jumping in here on these…I don’t think I remember your story on here till recently!
Ed said:
Robbie here you go…My TN started at age 25 which was 38 years ago. I bounced from neurologist to dentists to holistic healers to dental surgeons and even think I saw a Witch Doctor, for 8 years to no avail. In 12/ 1983 I went to the University of PA with my wife and saw their head neurosurgeon who diagnosed me with TN and laid out all the odds and how the surgery could go. He was not very reassuring as to its success but he was right on the diagnosis. Remember this was 30 years ago and much less was known about TN. The following week I went to Temple and saw DR Kenning on the Temple Neurology staff. He immediately diagnosed me with TN and assured me he could help. He worked for DR Janetta in Pittsburgh who invented the surgery and he was very familiar with the surgery. He looked my wife in her eyes and said :“Dont worry I will take good care of Him”. To make a long story short I had my surgery 30 years ago on New Years eve and have been totally pain free for 30 years. There are thousands just like me but unfortunately you dont hear about the successes as much as the ones that arent as successful. You have an experienced surgeon in a top flight facility you will just do great. Hopefully in just 3 more days you will be TN pain free…Good luck…Ed
Smash! glad to hear they got that taken care of, i had a leak also that kept me feeling poorly for a month, but better right after the second surgery ;-]
i got this horrible stuff about a year ago. but waited to go to the doctor till febuary. two days on the meds let me know that surgery was the only option i wanted. and i got that on july 30, mvd. i had never had surgery before, and did not recover well. got put back in twice, the second time to open me back up and reclose the whole thing. that worked, surgery on friday night, out of the hospital on monday and driving on thursday...why couldnt the first time been like that! lol but the pain is gone and im working again...those are the only things that mater!
good luck to you!
Thanks everyone! I'm going to Mayo Clinic in Rochester on Thursday. I was diagnosed in 2006, but spent much of the past 7 years in remission. I'd have it bad for a month or so here & there, the past 7 years, and then this past Aug 19th my TN1 hit my from out of nowhere, and that was horrible til the 1st part of Sept and now it's mostly TN2 symptoms. I tried all the meds from 2006 - 2009 and had side effects to most of them, that's when I quit everything and just used B12 sublingual 10,000 mcg daily & a Super B Complex for the past couple years, which I believe has helped, until I just became majorly over stressed, which I honestly believe brought on my last attack. And here I am 1 day away from Mayo Clinic. I'm terrified. Need prayers please. Thanks everyone.
Hi, I had my MVD done at Mass General on August 15, 2013. Before the operation I was on 3200mg gabapentin and 600mg tegretol daily. After one night in ICU and one night on a neuro floor I came home on Tylenol and flexoril (skeletal muscle relaxer). I am off the tegretol and will soon be getting off my gabapentin (just waiting to see my PCP...she's on vacation). My MVD did go 2 hours longer and he did use 4 extra Teflon pads than normal. He says my outcome is great because of how bad the nerve was being touched. I have not had any pain except the stiff neck (that's now long gone) when I got out of the hospital. I wish you the very best of luck!!
~merrrra
Hi Robbie,
I am praying for you. Good luck with your surgery. I am pondering MVD too.
Robbie Korthals said:
Thanks everyone! I’m going to Mayo Clinic in Rochester on Thursday. I was diagnosed in 2006, but spent much of the past 7 years in remission. I’d have it bad for a month or so here & there, the past 7 years, and then this past Aug 19th my TN1 hit my from out of nowhere, and that was horrible til the 1st part of Sept and now it’s mostly TN2 symptoms. I tried all the meds from 2006 - 2009 and had side effects to most of them, that’s when I quit everything and just used B12 sublingual 10,000 mcg daily & a Super B Complex for the past couple years, which I believe has helped, until I just became majorly over stressed, which I honestly believe brought on my last attack. And here I am 1 day away from Mayo Clinic. I’m terrified. Need prayers please. Thanks everyone.