I have atypical TN and frequently have bouts of both types of pains- shocking, stabby pain and always the dull, achy pain. I've been on carbomazepine for 7 months. It worked for awhile and now the pain is back almost full force.
I had an MRI and it showed that there are no blood vessels blocking my nerve. Does this make me not eligible for MVD?
Thanks in advance
Here is the catch 22. Compressions do not always show on MRIs. Some surgeons will not do MVDs if nothing shows up, others will do it, if you have TN1 pain. It is very risky for ATN.
I have bilateral ATN, with both the shocking and constant burning boring pain. My compressions did not show on a regular MRI, but when I saw a TN specialist, the MRI he did showed compressions on either side. I had MVD on my right side, the side that had been symptomatic for close to ten years , in January 2013. While it did stop the shocks of pain, the burning boring pain remained. I had a PNS implanted in August 2013, and that controls my pain on the right very well. In October 2013, I had MVD on my left, which had on,y shown symptoms for one year. That procedure worked. Rey we’ll on both the shocks, and the burning boring. I no longer take any meds.
If at all possible, I would urge you to see a TN expert. I traveled from Georgia to New York to see my surgeon, Dr. Jeffrey Brown, and am very happy that I did.
Best of luck to you!
I had an MVd for atypical pain because I had multiple compressions clearly visible. It helped for 8 weeks...
I had… As MOST here had no compression on MRI…
sometimes on fiesta MRI
MOST IF FOUND, are found during the MVD cranial surgery.
Yes MVD CAN help with ATN.
BUT you have to find theeeee best MVD surgeon
http://pmj.bmj.com/content/87/1028/410.full.pdf
Read table three in that journal link!
keep learning and asking… BE very leery of gamma or cyber before an MVD
send a message to mimi the moderator!
I am so confused about what type I have. I have an oral surgeon, GP and neuro. One says type 1 and the other say type 2. I called a TN neurosurgeon today and he said it sounds much more like TN1. How do I know the difference? I've only had this since Sept. of last year. Thank you so much in advance for your reply. Also, why would it be risky for ATN?
saraiderin said:
Here is the catch 22. Compressions do not always show on MRIs. Some surgeons will not do MVDs if nothing shows up, others will do it, if you have TN1 pain. It is very risky for ATN.
I'm in line to see Dr. Paul House at the Univ. of Utah. He's on this list of doctors for TN specialties, so I hope he helps. I did have one MRI (the older type) and it showed nothing abnormal but except that I have "white matter disease".
Christine said:
I have bilateral ATN, with both the shocking and constant burning boring pain. My compressions did not show on a regular MRI, but when I saw a TN specialist, the MRI he did showed compressions on either side. I had MVD on my right side, the side that had been symptomatic for close to ten years , in January 2013. While it did stop the shocks of pain, the burning boring pain remained. I had a PNS implanted in August 2013, and that controls my pain on the right very well. In October 2013, I had MVD on my left, which had on,y shown symptoms for one year. That procedure worked. Rey we'll on both the shocks, and the burning boring. I no longer take any meds.
If at all possible, I would urge you to see a TN expert. I traveled from Georgia to New York to see my surgeon, Dr. Jeffrey Brown, and am very happy that I did.
Best of luck to you!
MVD for ATN is not riskier , I think it is just 75% or something - vs when TN is more like 95% remission.
Google Images: Trigeminal Neuralgia
Google Images: Atypical Face Pain
Google Images: Atypical Trigeminal Neuralgia
Im not sure if you have read THE book -
Striking Back by Dr. Ken Casey
Much great info
The more you learn, the better your life can be.
TN is called more, intermittent zap, sting, lightning strike, Taser
ATN is more like constant, boring, burning
Here is a TWO HOUR informational conference talk by Dr. Ken Casey --- while you wait for the book to come in the mail - you can start watching this - break it up into small bites if you have to. He has been doing this since 1970's --
Google: The Neuropathic Tides of Pain
this man saved my life
I knew I had to leave my state and go spend 2 nights in a hospital in another state with
the MVD guru
Two years later, no pain, no meds
We did all my pre-op stuff beforehand on the email and through my neurologist here, Then I met him the day before surgery.
He answers email personally!
If you see that you want his personal email ---
let me know at ■■■■■■■■■■■■■■■■■■■■
Kimberly
That link was VERY helpful, thank you. I'm not very leery because I'm just so darned desperate.
Kc Dancer Kc said:
I had.... As MOST here had no compression on MRI......
sometimes on fiesta MRI
MOST IF FOUND, are found during the MVD cranial surgery.
Yes MVD CAN help with ATN.
BUT you have to find theeeee best MVD surgeon
http://pmj.bmj.com/content/87/1028/410.full.pdf
Read table three in that journal link!
keep learning and asking...... BE very leery of gamma or cyber before an MVD
send a message to mimi the moderator!
He said maybe glycerol injections. Why should MVD never be done on a damaged nerve?
You are SO helpful, ty!!! Well the problem though is that I have both types of pain. I get shocked if I eat, drink or irritate the nerve somehow and then afterwards the boring, dull, achy pain orrurs for hours on end.
Kc Dancer Kc said:
MVD for ATN is not riskier , I think it is just 75% or something - vs when TN is more like 95% remission.
Google Images: Trigeminal Neuralgia
Google Images: Atypical Face Pain
Google Images: Atypical Trigeminal Neuralgia
Im not sure if you have read THE book -
Striking Back by Dr. Ken Casey
Much great info
The more you learn, the better your life can be.
TN is called more, intermittent zap, sting, lightning strike, Taser
ATN is more like constant, boring, burning
Here is a TWO HOUR informational conference talk by Dr. Ken Casey --- while you wait for the book to come in the mail - you can start watching this - break it up into small bites if you have to. He has been doing this since 1970's --
Google: The Neuropathic Tides of Pain
this man saved my life
I knew I had to leave my state and go spend 2 nights in a hospital in another state with
the MVD guru
Two years later, no pain, no meds
We did all my pre-op stuff beforehand on the email and through my neurologist here, Then I met him the day before surgery.
He answers email personally!
If you see that you want his personal email ---
let me know at kcdancerkc@yahoo.com
Kimberly
My neurosurgeon told me when it came to ATN he would not do any surgery as it would risk making the pain worse due to manipulation of the nerve, during surgery. Thing is I also have Typical TN pain, so he did the MVD. What was learned during surgery, was due to a birth defect I had bone at the base of my skull pressing on the nerve, and he drilled that away. It did nothing for my ATN pain, but thankfully did not make it worse either.
divinedimension said:
I am so confused about what type I have. I have an oral surgeon, GP and neuro. One says type 1 and the other say type 2. I called a TN neurosurgeon today and he said it sounds much more like TN1. How do I know the difference? I've only had this since Sept. of last year. Thank you so much in advance for your reply. Also, why would it be risky for ATN?
saraiderin said:Here is the catch 22. Compressions do not always show on MRIs. Some surgeons will not do MVDs if nothing shows up, others will do it, if you have TN1 pain. It is very risky for ATN.
My neurosurgeon will not do MVD for ATN as it runs the risk of making the pain worse, and as people have noted does not have a very high success rate. Thing is MVD surgery is to treat compressions. I respect compressions seldom show up on MRIs, so the surgeons could go in, and find something. If the ATN comes after a shock, it is sounds like a mixture of both, and the MVD could help the shocks. I have both, and while the MVDs I had helped with the shocking pain, it did nothing to help with the burning pain.
divinedimension said:
You are SO helpful, ty!!! Well the problem though is that I have both types of pain. I get shocked if I eat, drink or irritate the nerve somehow and then afterwards the boring, dull, achy pain orrurs for hours on end.
Kc Dancer Kc said:MVD for ATN is not riskier , I think it is just 75% or something - vs when TN is more like 95% remission.
Google Images: Trigeminal Neuralgia
Google Images: Atypical Face Pain
Google Images: Atypical Trigeminal Neuralgia
Im not sure if you have read THE book -
Striking Back by Dr. Ken Casey
Much great info
The more you learn, the better your life can be.
TN is called more, intermittent zap, sting, lightning strike, Taser
ATN is more like constant, boring, burning
Here is a TWO HOUR informational conference talk by Dr. Ken Casey --- while you wait for the book to come in the mail - you can start watching this - break it up into small bites if you have to. He has been doing this since 1970's --
Google: The Neuropathic Tides of Pain
this man saved my life
I knew I had to leave my state and go spend 2 nights in a hospital in another state with
the MVD guru
Two years later, no pain, no meds
We did all my pre-op stuff beforehand on the email and through my neurologist here, Then I met him the day before surgery.
He answers email personally!
If you see that you want his personal email ---
let me know at kcdancerkc@yahoo.com
Kimberly
The oral surgeon.
Cleo said:
If the nerve is damaged during a dental procedure it isn't compressed by a vein where MVD surgery takes place. Who said glycerol injections?
divinedimension said:He said maybe glycerol injections. Why should MVD never be done on a damaged nerve?
Lesson learned here, is everyone is different when it comes to the advice they are told by their surgeons, and the outcomes they have . I would ask though, that you not let desperation rush you into surgery. I have seen this happen, and never has a person had a good outcome.
I was a little off… Apparently on that video… Dr. Casey days 65% better with ATN and 92% better with TN
Cleo, he didn’t say what part of the mouth. I kinda stopped listening when he explained the procedure because he said he’d need to refer me, and he has zero experience in TN.
I have found dental schools are awful when it comes to teaching about dental causes of TN.
Cleo said:
I have never heard of an OS that didn't know the trigeminal nerve anatomy! I didn't stop listening and turn to the internet when my third OS sent me on to a fourth OS over 13 years ago.
Hi divinedimension,
Have you gotten in to see Dr. House yet? I am currently waiting to get in. My referral and all information has been sent! We have a small support group that meets once a month in Saratoga Springs, Utah. You are welcome to join us anytime. We'd love to hear your story!
Julie
divinedimension said:
I'm in line to see Dr. Paul House at the Univ. of Utah. He's on this list of doctors for TN specialties, so I hope he helps. I did have one MRI (the older type) and it showed nothing abnormal but except that I have "white matter disease".
Christine said:I have bilateral ATN, with both the shocking and constant burning boring pain. My compressions did not show on a regular MRI, but when I saw a TN specialist, the MRI he did showed compressions on either side. I had MVD on my right side, the side that had been symptomatic for close to ten years , in January 2013. While it did stop the shocks of pain, the burning boring pain remained. I had a PNS implanted in August 2013, and that controls my pain on the right very well. In October 2013, I had MVD on my left, which had on,y shown symptoms for one year. That procedure worked. Rey we'll on both the shocks, and the burning boring. I no longer take any meds.
If at all possible, I would urge you to see a TN expert. I traveled from Georgia to New York to see my surgeon, Dr. Jeffrey Brown, and am very happy that I did.
Best of luck to you!
I am willing to concede a Oral Surgeon will know about the Trigeminal Nerve, but dentists forget it. At the OHSU dental school they get five hours of training, and that is it. I have a feeling it is more on how to numb the nerve before drilling on teeth.
Jamie said:
I agree 100%. It's just conjecture/opinion on my part, but when I speak with my dentist about it, it's like I'm talking rocket science to him.
saraiderin said:I have found dental schools are awful when it comes to teaching about dental causes of TN.
Cleo said:I have never heard of an OS that didn't know the trigeminal nerve anatomy! I didn't stop listening and turn to the internet when my third OS sent me on to a fourth OS over 13 years ago.