Classification of my TN

1

Hello all,

As I spend hours reading everyone's comments and stories I sit here trying to decide if I am typical, a typical, bilateral, tn1, etc. It seems like everyone has such an ownership of their TN. I wonder why I sit here with no full understanding of how to classify mine.

My neurologist told me that I have a blood vessel hitting my nerve, but isn't that the cause of most TN cases? I haven't kept a journal of my care (which I really should) to make any comparison to everyone else except the obvious similarity that I've tried most of the common drugs everyone else has and none have worked successfully.

I told myself that 2011 would be the year I really do something about my TN but I don't know what to do. I have started on Lyrica again to help but so far in these 2 weeks since I began I feel no relief. I met with a neurosurgeon told me that he strongly suggests MVD for my TN but I am so incredible fearful of this surgery. As a mild hypochondriac, I fear that I will not handle the surgery well, it may not work, or honestly that I may go under and not wake back up. I know it sounds ridiculous but I think about it a lot when I think of MVD.

I reread my post and wonder what I am getting at, but I guess what I am looking for is advice.

Thank you all for reading my words.

2

Hello, Jen.

Can you describe the nature of your pain, if you have certain things which would trigger it to be worse than usual? Does it have more of electric shock type quality, or is it more of a constant aching, burning, throbbing, crusing or tingling feeling. Is it on both sides, or one. Are there periods when you are pain free?

I wonder how your Neurologist knows it is a blood vessel hitting your nerve, or is he making this assumption? (yes, doctors are fallible, like the rest of us).

Let us know what is going on with your face. Maybe one of us can help with your question.

Hugs,

Stef

3

Stef,

My TN is so hard to describe. When it started about 6 years ago it came on full force. I had horrible shocking stabbing pain that wouldn't go away. With meds and time it went away. My TN used to come and go, on for 3-6 weeks then gone for months. Then about 2 years ago the pain changed. Sometimes its burning, aching at other times but the horrible shocking pain has gone. As far as triggers, for a couple months just a hair on my face would trigger. Other triggers can be talking, eating, drinking, brushing my teeth but certain days none of them trigger it. Depending on the day it feels different. Some days I have 3 attacks all day and others I have what seems like 300.

Since I've had 2 kids in the last 3 years I haven't taken anything for the pain and it was tolerable, extremely bothersome, but manageable. When I got pregnant this last time the pain started a year ago and has not gone away. On a scale of 1-10, i'm at a 6.

My neurosurgeon showed me my MRI and showed me where my blood vessels are and where they should be or where they would be if I didn't have TN. It is on one side but the MRI showed I actually have it on both but my right side is the only one that has felt pain.

Hopefully this helps.

Thanks for your help!


Stef said:

Hello, Jen.

Can you describe the nature of your pain, if you have certain things which would trigger it to be worse than usual? Does it have more of electric shock type quality, or is it more of a constant aching, burning, throbbing, crusing or tingling feeling. Is it on both sides, or one. Are there periods when you are pain free?

I wonder how your Neurologist knows it is a blood vessel hitting your nerve, or is he making this assumption? (yes, doctors are fallible, like the rest of us).

Let us know what is going on with your face. Maybe one of us can help with your question.

Hugs,

Stef

4

Hi Gloria,

thanks for your help. I responded to Stefs questions so please advise :)



Gloria E. said:

Hi Jen,

We can help you narrow down the options. Stef's questions are important. We're here for you.

Also, did you have an MRI to find the blood vessel is compressing on the nerve??? The MVD surgery is a big decision and not an option for Atypical TN patients like Stef and me. There are also many surgical complications that can occur and that can affect you long after the surgery, not to mention the recuperation time.

Do your research, DON'T LET THE DOCTOR RUSH YOU INTO ANY DECISION. Get a second opinion if you can. But first, you need to find out what type of TN you have.

5

Hi, Jen!

Thanks for the further info on your condition. No wonder you are confused! Well, like it says on the front of the page, we're not docs. But, in my humble opinion, it would sound as if you have both Trigeminal Neuralgia (Type I) and Atypical Trigeminal Neuralgia (Type 2) symptoms going on. You may have already figured this much out, and that is why you feel confused. I'm sorry for what you are going through.

Even though the shocking with periods of remission are gone for right now, they may or may not come back at any time. With so much on your plate, I hope this STAYS at bay for you! Type I Trigeminal Neuralgia symptoms, from what I have read, respond much better to MVD than Type II, which I read has something along the lines of a 30% success rate of being helped by MVD. (Anyone can feel free to jump in here and correct me if they know that my stats are off).

Since being diagnosed in 2009, I have spent a portion of almost every day researching this monster of a disorder. In the process, I have, of course heard of case histories of success stories, that is total remission of symptoms from Type I symptoms, and on the flip side, I've heard of cases where patients post MVD are experiencing worsened or new burning and aching sensations, such as you are experiencing.

The decision to have MVD so personal. I know there must be a lot of soul searching involved, and I'm sure you are feeling a anxiety. I would talk to some people on the site who have undergone MVD, if I were you.

I would love a solution, such as MVD, rather than maintenance to my pain, which is chronic and, like you, typically hovers around a Level 6, but can rise to around 9 or 10 when unmedicated. I occasionally have the twinges of electricity which I can feel as well as hear and hope that this is not telling me Type I symptoms are on the way for me. These have only begun recently.

My pain began in '03 shortly after the birth of my second daughter. Until recently, I have only been experiencing Type II, ATN symptoms. Because my symptoms are that of ATN, my Neuro did not refer me to a Neurosurgeon for MVD, or any other type of corrective procedure, because I suppose, as Gloria has told me before, it may not help and may make things worse, according to her Neuro, who is well respected within his field. Instead, my Neuro referred me to a "Head and Facial Pain Specialist". I WAS SO FRUSTRATED WITH THIS NEWS! I JUST WANTED TO BE CURED! My Dad was soooo disappointed that I was not referred for surgical intervention.

However, your Neuro has seen the culprit, knows what he is dealing with and has strongly recommended MVD. I am glad that you have the option, if you choose. I am hoping one of our members who has undergone MVD, or even multiple MVDs' would reply to this post, so that you could get an opinion from someone who has come through on the other side of what your doc "strongly recommends".

Gloria's warning is, don't let a doctor push you into anything! She is wise. You have us here for support in whatever decision you make.

To answer your question, from what you have told us, you are experiencing symptoms of Type II or ATN characteristic presently. Feel free to join our ATN group, just click under the "MORE" tab, click on groups and look for us there, or simply go to my page and see it under my listings of groups. Click on the famous painting "The Scream", and join us in discussion, or begin a thread of your own, for further support with people who understand what you are going on with your current symptoms. I am sure our members would like to know how whatever treatment you choose works for you! We are all hungry for more information about this rare stuff that affects or controls our lives to varying degrees. Your input is greatly appreciated too!

I have some information I would like from you, please. What diagnostic was performed allowed your Neuro to see the offending vessel(s) without an invasive procedure? I have had MRIs' of both my brain and TMJ joints to rule out M.S. and T.M.J. Is there a test I should be having, to see what may be irritating both sides of my TN nerve? Please get back with me about this, either by e-mail, or in reply.

Being a parent with TN or ATN is EXTREMELY challenging. I know. I have two girls who keep me on my toes, even when my face is screaming "oh stop the world and let me off for awhile". There is also a group for us Moms too.

Hope to hear back from you soon.

Hugs,

Stef

6

Hi Jen,

I attended the National Conference for Trigeminal Neuralgia held this past August (2010) in Rochester, MN at the Mayo Clinic looking for answers for my pain.

One thing the experts were clear on - if your pain started out with sharp, electric, jabbing pain - you have TN Type 1 - and an MVD would be their first recommended procedure of choice, no matter what happened later in the course of your disease. If you have a compression of the nerve/blood vessel showing on an MRI, the odds are something like 85% that you could have the surgery and come out of it pain free.

Have you read the book "Striking Back"? It gives a lot of good information about this disease and tells you all the things we all want to know. You can order it from Amazon or the bookstore at the TNA Site at the following link:

http://www.fpa-support.org/

It answered a lot of my questions and might help you, too. It is very comprehensive and easy to understand.

I hope you get answers, soon. It is hard to live with this disease and not know what to do.

Jackie

7

Yes! The TN bible, so to speak, "Striking Back". I ordered my copy off of Amazon. Good point, Jen. This book should be prescribed upon diagnosis, because as far as I know, it is the only piece of literature, other than online information, provided to the masses, on the subject.

8

Stef,

Thanks for all the feedback. It seems like we are somewhat in the same boat, well at least having children while dealing with this.

So here is the question I have. Since my TN is "supposedly" cause by a blood vessel compressing my nerve, what is causing yours? or is that the million dollar question? My MRI revealed the closeness of my blood vessel and nerve, that's it. Is there a procedure they can do to double check?

I can deal with the burning and have w/o meds for so long. It seems like I'm back in my old situation by meds not working anyway. I took Topamax that did nothing and now am on Lyrica and it seems to be doing nothing as well.

My neuro put me in touch with a woman my age who had MVD last year but I haven't called yet. I don't know why, maybe because I'm scared. I don't know what I'm scared of, so I guess I'm just anxious about it.

I wonder if the change in hormones from pregnancy affects our TN? So what did the face and pain specialist say? that you have TN? or did they offer recommendations for other pain options?

Have you tried acupuncture? I tried it a couple years ago and it did nothing except take me for $80 each appt.

I ordered Striking Back today and looking forward to reading a book that isn't Dora, The Hungry Little Caterpillar or Berenstein Bears!

When you say you can hear the pain, can you explain more? I've never had that, but it sounds horrible.

Thanks for reaching out.

Jen


Stef said:

Hi, Jen!

Thanks for the further info on your condition. No wonder you are confused! Well, like it says on the front of the page, we're not docs. But, in my humble opinion, it would sound as if you have both Trigeminal Neuralgia (Type I) and Atypical Trigeminal Neuralgia (Type 2) symptoms going on. You may have already figured this much out, and that is why you feel confused. I'm sorry for what you are going through.

Even though the shocking with periods of remission are gone for right now, they may or may not come back at any time. With so much on your plate, I hope this STAYS at bay for you! Type I Trigeminal Neuralgia symptoms, from what I have read, respond much better to MVD than Type II, which I read has something along the lines of a 30% success rate of being helped by MVD. (Anyone can feel free to jump in here and correct me if they know that my stats are off).

Since being diagnosed in 2009, I have spent a portion of almost every day researching this monster of a disorder. In the process, I have, of course heard of case histories of success stories, that is total remission of symptoms from Type I symptoms, and on the flip side, I've heard of cases where patients post MVD are experiencing worsened or new burning and aching sensations, such as you are experiencing.

The decision to have MVD so personal. I know there must be a lot of soul searching involved, and I'm sure you are feeling a anxiety. I would talk to some people on the site who have undergone MVD, if I were you.

I would love a solution, such as MVD, rather than maintenance to my pain, which is chronic and, like you, typically hovers around a Level 6, but can rise to around 9 or 10 when unmedicated. I occasionally have the twinges of electricity which I can feel as well as hear and hope that this is not telling me Type I symptoms are on the way for me. These have only begun recently.

My pain began in '03 shortly after the birth of my second daughter. Until recently, I have only been experiencing Type II, ATN symptoms. Because my symptoms are that of ATN, my Neuro did not refer me to a Neurosurgeon for MVD, or any other type of corrective procedure, because I suppose, as Gloria has told me before, it may not help and may make things worse, according to her Neuro, who is well respected within his field. Instead, my Neuro referred me to a "Head and Facial Pain Specialist". I WAS SO FRUSTRATED WITH THIS NEWS! I JUST WANTED TO BE CURED! My Dad was soooo disappointed that I was not referred for surgical intervention.

However, your Neuro has seen the culprit, knows what he is dealing with and has strongly recommended MVD. I am glad that you have the option, if you choose. I am hoping one of our members who has undergone MVD, or even multiple MVDs' would reply to this post, so that you could get an opinion from someone who has come through on the other side of what your doc "strongly recommends".

Gloria's warning is, don't let a doctor push you into anything! She is wise. You have us here for support in whatever decision you make.

To answer your question, from what you have told us, you are experiencing symptoms of Type II or ATN characteristic presently. Feel free to join our ATN group, just click under the "MORE" tab, click on groups and look for us there, or simply go to my page and see it under my listings of groups. Click on the famous painting "The Scream", and join us in discussion, or begin a thread of your own, for further support with people who understand what you are going on with your current symptoms. I am sure our members would like to know how whatever treatment you choose works for you! We are all hungry for more information about this rare stuff that affects or controls our lives to varying degrees. Your input is greatly appreciated too!

I have some information I would like from you, please. What diagnostic was performed allowed your Neuro to see the offending vessel(s) without an invasive procedure? I have had MRIs' of both my brain and TMJ joints to rule out M.S. and T.M.J. Is there a test I should be having, to see what may be irritating both sides of my TN nerve? Please get back with me about this, either by e-mail, or in reply.

Being a parent with TN or ATN is EXTREMELY challenging. I know. I have two girls who keep me on my toes, even when my face is screaming "oh stop the world and let me off for awhile". There is also a group for us Moms too.

Hope to hear back from you soon.

Hugs,

Stef

9

Jackie,

Thank you so much for your feedback! It's comforting to hear that it is an overall consensus is that MVD is the best option and 85% is pretty good. Did they say why the other 15% don't feel relief? Did you have MVD? Is that an option for you?

I ordered Striking back today and look forward to reading it. Thanks for your input!!

Jen


Jackie M said:

Hi Jen,

I attended the National Conference for Trigeminal Neuralgia held this past August (2010) in Rochester, MN at the Mayo Clinic looking for answers for my pain.

One thing the experts were clear on - if your pain started out with sharp, electric, jabbing pain - you have TN Type 1 - and an MVD would be their first recommended procedure of choice, no matter what happened later in the course of your disease. If you have a compression of the nerve/blood vessel showing on an MRI, the odds are something like 85% that you could have the surgery and come out of it pain free.

Have you read the book "Striking Back"? It gives a lot of good information about this disease and tells you all the things we all want to know. You can order it from Amazon or the bookstore at the TNA Site at the following link:

http://www.fpa-support.org/

It answered a lot of my questions and might help you, too. It is very comprehensive and easy to understand.

I hope you get answers, soon. It is hard to live with this disease and not know what to do.

Jackie

10

Hi, Jen!

I wish I knew what was causing it! I was misdiagnosed with TMJ for years, but had none of the classic symptoms of TMJ. I may have a touch of it. i also have a bit of scoliosis, and heck, I know hormones affect TN due to the fact that every time it's almost time to start my cycle, my face is on fire, and meds hardly help. So, I'm pretty sure that the hormonal changes during pregnancy would definitely have an effect.

I have had an MRI of my TMJ joints to rule that out and and MRI of my brain to rule out M.S. I just wonder what kind of test they use to see the blood vessels in around your Trigeminal Nerve. I was diagnosed with Atypical Trigeminal Neuralgia by my pain clinic and Neurologist simply on the premise that I am relieved mildly by Neurontin and because I have every symptom to the letter of the classic definition. But, many people with ATN never find out the cause. I hope this is not the case with me, of course.

I do not see the Head Pain Specialist for a month or so. She's booked up, I guess. My Dad wants me to just be "fixed", but right now it is uncertain if MVD would help me, since until recently, I have only exhibited symptoms of ATN.

Oh, hearing the shock. Well, it seems to begin like a twinge on either side of my face, kind of radiating from right in front of my ear inward.

I get 4 pain free burst during the day, only, I believe, because of the one opiate med I am prescribed by my pain clinic. I thank God for at least that. Without it, I cannot hardly talk or eat. I spend some time on here, because I love to learn about what I may can do to get out of this mess and help others, if I can. It has not taken away my ability to type!

So, are they actually able to do an MRI of your TN nerve? How did she know? Was it an X-Ray? No one has offered to take a look at my TN nerve. I would have it done in a heartbeat!

Yes, when I thought I was a candidate for MVD, i felt a little apprehensive, but I sort of felt different, hopeful, that something may help. Everyone is different. I may get into the operating room and say, "NO JUST MEDICATE ME FOR THE REST OF MY LIFE" (laughs). But, there are many people on this site who have undergone successful MVDs'. I am hoping one of them catches wind of this thread.

I have, though, read and been advised that sometimes MVD may worsen Type II symptoms, but may or may not cure Type I symptoms (the shocks).

Your welcome. Reaching out to people like me helps keep me sane, at this point. Well, the hurt is coming on again. I need my medicine, so I can tuck my little one in bed and say "Goodnight" to my teenager without sounding whiny, thick tongued and in pain. You're right. So hard being a Mom with this. I'm glad you ordered the book.

Hang in there. Hit me back if you want.

Hugs,

Stef


Jen B said:

Stef,

Thanks for all the feedback. It seems like we are somewhat in the same boat, well at least having children while dealing with this.

So here is the question I have. Since my TN is "supposedly" cause by a blood vessel compressing my nerve, what is causing yours? or is that the million dollar question? My MRI revealed the closeness of my blood vessel and nerve, that's it. Is there a procedure they can do to double check?

I can deal with the burning and have w/o meds for so long. It seems like I'm back in my old situation by meds not working anyway. I took Topamax that did nothing and now am on Lyrica and it seems to be doing nothing as well.

My neuro put me in touch with a woman my age who had MVD last year but I haven't called yet. I don't know why, maybe because I'm scared. I don't know what I'm scared of, so I guess I'm just anxious about it.

I wonder if the change in hormones from pregnancy affects our TN? So what did the face and pain specialist say? that you have TN? or did they offer recommendations for other pain options?

Have you tried acupuncture? I tried it a couple years ago and it did nothing except take me for $80 each appt.

I ordered Striking Back today and looking forward to reading a book that isn't Dora, The Hungry Little Caterpillar or Berenstein Bears!

When you say you can hear the pain, can you explain more? I've never had that, but it sounds horrible.

Thanks for reaching out.

Jen


Stef said:

Hi, Jen!

Thanks for the further info on your condition. No wonder you are confused! Well, like it says on the front of the page, we're not docs. But, in my humble opinion, it would sound as if you have both Trigeminal Neuralgia (Type I) and Atypical Trigeminal Neuralgia (Type 2) symptoms going on. You may have already figured this much out, and that is why you feel confused. I'm sorry for what you are going through.

Even though the shocking with periods of remission are gone for right now, they may or may not come back at any time. With so much on your plate, I hope this STAYS at bay for you! Type I Trigeminal Neuralgia symptoms, from what I have read, respond much better to MVD than Type II, which I read has something along the lines of a 30% success rate of being helped by MVD. (Anyone can feel free to jump in here and correct me if they know that my stats are off).

Since being diagnosed in 2009, I have spent a portion of almost every day researching this monster of a disorder. In the process, I have, of course heard of case histories of success stories, that is total remission of symptoms from Type I symptoms, and on the flip side, I've heard of cases where patients post MVD are experiencing worsened or new burning and aching sensations, such as you are experiencing.

The decision to have MVD so personal. I know there must be a lot of soul searching involved, and I'm sure you are feeling a anxiety. I would talk to some people on the site who have undergone MVD, if I were you.

I would love a solution, such as MVD, rather than maintenance to my pain, which is chronic and, like you, typically hovers around a Level 6, but can rise to around 9 or 10 when unmedicated. I occasionally have the twinges of electricity which I can feel as well as hear and hope that this is not telling me Type I symptoms are on the way for me. These have only begun recently.

My pain began in '03 shortly after the birth of my second daughter. Until recently, I have only been experiencing Type II, ATN symptoms. Because my symptoms are that of ATN, my Neuro did not refer me to a Neurosurgeon for MVD, or any other type of corrective procedure, because I suppose, as Gloria has told me before, it may not help and may make things worse, according to her Neuro, who is well respected within his field. Instead, my Neuro referred me to a "Head and Facial Pain Specialist". I WAS SO FRUSTRATED WITH THIS NEWS! I JUST WANTED TO BE CURED! My Dad was soooo disappointed that I was not referred for surgical intervention.

However, your Neuro has seen the culprit, knows what he is dealing with and has strongly recommended MVD. I am glad that you have the option, if you choose. I am hoping one of our members who has undergone MVD, or even multiple MVDs' would reply to this post, so that you could get an opinion from someone who has come through on the other side of what your doc "strongly recommends".

Gloria's warning is, don't let a doctor push you into anything! She is wise. You have us here for support in whatever decision you make.

To answer your question, from what you have told us, you are experiencing symptoms of Type II or ATN characteristic presently. Feel free to join our ATN group, just click under the "MORE" tab, click on groups and look for us there, or simply go to my page and see it under my listings of groups. Click on the famous painting "The Scream", and join us in discussion, or begin a thread of your own, for further support with people who understand what you are going on with your current symptoms. I am sure our members would like to know how whatever treatment you choose works for you! We are all hungry for more information about this rare stuff that affects or controls our lives to varying degrees. Your input is greatly appreciated too!

I have some information I would like from you, please. What diagnostic was performed allowed your Neuro to see the offending vessel(s) without an invasive procedure? I have had MRIs' of both my brain and TMJ joints to rule out M.S. and T.M.J. Is there a test I should be having, to see what may be irritating both sides of my TN nerve? Please get back with me about this, either by e-mail, or in reply.

Being a parent with TN or ATN is EXTREMELY challenging. I know. I have two girls who keep me on my toes, even when my face is screaming "oh stop the world and let me off for awhile". There is also a group for us Moms too.

Hope to hear back from you soon.

Hugs,

Stef

11

Hi Jen,

TN is usually a disorder with no known cause and really, no known cure. I was diagnosed in 2001, had kids still living at home then and it was actually a relief to have a name of something to put with the mysterious symptoms I was having.

The thin-slice MRI is the test where they can see the trigeminal nerve and whether or not there is a compression.

I started out on medicaiton, failed about 20-plus meds. I tried everything from Tegretrol, Trileptol, Neurontin, Dilantin, Topamax, Baclofen, Amitriptriptyline, etc., and finally went in late 2003 for an MVD. It gave me 2 and a half glorious pain-free years! I was so elated to be pain free. I did have a couple of complications from the surgery. I lost my hearing on my TN side and I had a cerespinal fluid leak that they corrected with a second surgery. All of that was worth being pain free. But, unfortantely, the pain came back in 2006. This time, it wasn't a gradual thing, either. It roared back like a lion and I immediately went to the neurologist, went back on meds, took them for 6 months and then went straight to the neurosurgeon for a second MVD.

My second MVD, in December, 2007, was a little more complicated because of all the scar tissue and unfortunately, I didn't get any pain reduction. They found that the teflon pads used in the first surgery had embedded in the trigeminal nerve and damaged the myelin sheath. I had complications during this surgery, too. I had what my Doctor called a stroke-like event and ended up paralyzed from the top of my head to the bottom of my throat. And, because of the damage to the myelin sheath, I didn't get any pain relief.

Not to be discouraged, I stayed on medication, increased most of it and went and had the Gamma Knife procedure in March of 2009. The Gamma Knife works slowly and you have to wait 3 to 6 months to see if it worked. By October of 2009, it was clear that mine was not going to work. I didn't get any pain relief.

So, here it is, 2011, I have had 5 surgeries, been pain free for 2 and a half years of my 10 year journey and I'm still looking for the answer to be pain free. I take medication, still.

But, I would definitely have the first MVD all over again. The odds are much better for a successful outcome than any other procedure and it isn't destructive to the nerve. It can be repeated, if necessary, and all other procedures can still be performed at a later date. Everything else that they recommend is destructive to the nerve, including the Gamma Knife, so I would save those as last resort procedures.

There is no definitive test to see if you will be one of the 85% who achieve pain relief. A lot of your outcome depends on the skill of your surgeon. I didn't know that my surgeon had only performed the procedure 3 times before me. There are Doctors out there who have done hundreds of these procedures and they would be the guy to go to.

I, personally, have no regrets, am grateful for the time I had pain free while my youngest daughter finished high school, and would do it al over again in a heartbeat. The odds are just too high to ignore. But, I wouldn't have the MVD until all medication has failed. Since you are fairly new to the battle, you have a long way to go. Your Doctor will most likely try you on Tegretol or Trileptol and perhaps, Neurontin for the burning pain or a combination of all of them before you go off to the operating room.

I hope this doesn't dampen your spirits. Someone is in that 15% category, like you said, and I just happen to be one of them.

All my best,

Jackie

12

Hey there, Gloria!

Glad to read your response here . . . .

Honestly, I think there are many people, including sometimes healthcare professionals, who do not make a clear enough the distinction between Type I and Type II symptoms. A person suffering from only Type I symptoms and a person suffering from only Type II symptoms are suffering from different animals, indeed. A person who has suffered both, well, that gets a bit more complex! However, from what Jen wrote, correct me if I am wrong, Jen, is suffering from Type II or Atypical symptoms.

Yes, no offense to Jackie M., who seems to have been through so much, however, Type II pain sufferers should be given optimism or finding a compassionate doctor who can manage their pain, but not false hope, by thinking that because they are Trigeminal Neuralgia patients, that their symptoms are likely to be cured by MVD. That is exactly why, and I keep saying this over and over, that Type II, or Atypical Trigeminal Neuralgia symptoms should be more compassionately addressed by the healthcare community as a whole, by better pain management. If I am understanding you correctly, I concur that, from what I have heard and read, surgery isn't typically the best option for those presenting with Type II symptoms.

Jen, we are a caring community of people who do support one another. I am glad you found our site. This is a confusing disorder, especially when one has experienced both types of TN pain. I don't pretend to know everything about it any more than anyone else. However, I do know that if you are currently presenting with Atypical, or Type II symptoms, then your first course of action should be to not allow your pain to be dismissed. If your current medication regimen is not working for you, let your care provider know. Then, if it still doesn't work, persist until you find the combination which does work the best for you, and it is not an easy road. It is the road I am on right now, actually. I have only found one combination once which worked. It was yanked from me when my trusted long-time pain management specialist changed practices and was replaced by another. I am currently trying to have it re-adjusted to something which provides more lasting pain relief.

Absolutely, do not let anyone rush you into surgery which not only may help, and could make your Type II symptoms worse, from all that I've gathered.

Best regards, ladies. Wishing you all a pain free day, as always.

Your friend,

Stef


Gloria E. said:

Hi Jen,

No offense intended toward Jackie M.,

but I cannot disagree more strongly with her experts classification of TN. My Trigeminal Neuralgia started out with the "sharp, electric, jabbing pain" Type 1, but graduated to the crushing, burning, searing, throbbing, aching pain and I was diagnosed with Type 2 Atypical TN by three neurologists and one of the top neurosurgeons in the Trigeminal Neuralgia field. Just because I initially presented with Type 1 symptoms doesn't eliminate my Type 2 diagnosis. I was told by this neurosurgeon that the MVD surgery does not help Type 2 Atypical TN pain and in some cases can make the pain worse.

I also challenge the statement, "If you have a compression of the nerve/blood vessel showing on an MRI, the odds are something like 85% that you could have the surgery and come out of it pain free." Many Atypical patients (myself included) have nerve compression and are not candidates for surgery because we are Atypical.

I wonder if the differences between Type 1 "regular" TN and Type 2 Atypical TN were addressed or if the experts at the conference were simply addressing Type 1 TN?

According to Jackie M.'s profile, she states she has "active bi-lateral Type 1, ATN, glossopharyngeal neuralgia" and that she has had 2 unsuccessful MVD's, during which she lost hearing and suffered permanent paralysis on the left side of her face and throat. Jackie also stated that she has had an unsuccessful Gamma Knife procedure. How can someone who has suffered such tragic complications from two MVD's be recommending the surgery to anyone?

Again, Jackie, my opinions are not meant to insult you or hurt you in any way. I am just militantly concerned that new members receive information, both pro and con, before they can even begin to ponder any decision. It also appears that some of our members are admitting to being terribly confused and being rushed into surgery by their doctors. Some members are at a loss as to what type TN they have, and, yes, it's possible to have both Type 1 and Type 2 TN at the same time...adding to the confusion.

We, as a caring community of TN patients, are here to share our personal stories with new members and help each other along this painful, confusing and frustrating journey. We're here to offer support and encouragement.

Jen, I hope my contribution to this discussion has been helpful to you. As I said before - do your research and don't be rushed into any decision about surgery.

Wishing you all the best,

Gloria

Jackie M said:

Hi Jen,

I attended the National Conference for Trigeminal Neuralgia held this past August (2010) in Rochester, MN at the Mayo Clinic looking for answers for my pain.

One thing the experts were clear on - if your pain started out with sharp, electric, jabbing pain - you have TN Type 1 - and an MVD would be their first recommended procedure of choice, no matter what happened later in the course of your disease. If you have a compression of the nerve/blood vessel showing on an MRI, the odds are something like 85% that you could have the surgery and come out of it pain free.

Have you read the book "Striking Back"? It gives a lot of good information about this disease and tells you all the things we all want to know. You can order it from Amazon or the bookstore at the TNA Site at the following link:

http://www.fpa-support.org/

It answered a lot of my questions and might help you, too. It is very comprehensive and easy to understand.

I hope you get answers, soon. It is hard to live with this disease and not know what to do.

Jackie

13

Hi Jen, Gloria and Stef,

I'm sorry for any confusion I may have caused. Speakers at the National Conference included Dr. Kenneth Casey, the author or Striking Back, as well as Dr. Kim Burchiel, the chief of neurosurgery at the Oregon Health Sciences University who proposed the classification system that is currently being used to differentiate trigeminal neuralgia cases. Because there were only 250 patient participants at the conference, we were able to have both large meetings and smaller meetings with all of the specialists at the conference.

I am not advocating that Jen go out and have the MVD surgery. I was just sharing my experience with it. Everyone must decide that on their own. While it is true that I have suffered complications from the MVD's, I don't consider my experience tragic. I was completely pain free for two and a half years following the first MVD. To me, that was a miracle. My hope from the second and successive procedures was to experience that same pain-free existense.

I am going to "bow out" of this discussion now because it has taken a personal turn. Jen, please do all the research you can before you make any decisions. As I said in an earlier post, you have a long journey ahead of you and medication therapy is probably something you should exhaust before you even consider a surgical option.

Best of luck to all of you,

Jackie

14

Dear Jackie,

Oh no, I hope you do not feel that the conversation became personal. We all are just exchanging ideas and information to help one another here.

There is absolutely no offense on either mine, or Gloria's part intended toward you. Anyone who suffers with this monster of an illness, especially one who has suffered, and persevered as much as you have, I already consider to be no less than a sister or brother in a sense.

We are all three trying to help Jen, that's all. Any information, or suggestions which we may provide her, even if we differ in opinion, is an act of human kindness. I commend you on your resiliency and your willingness to provide support to our group.

It is my hope that you should have a sense that you are simply caring by bringing your contributions and input you may bring in order to help others!

Although we may have differences of opinion, we are all on the same page, so to speak, the desire to reach out for support and to provide support to our fellow sufferers! I am sure that I speak for Gloria as well.

Hugs friend,

Stef


Jackie M said:

Hi Jen, Gloria and Stef,

I'm sorry for any confusion I may have caused. Speakers at the National Conference included Dr. Kenneth Casey, the author or Striking Back, as well as Dr. Kim Burchiel, the chief of neurosurgery at the Oregon Health Sciences University who proposed the classification system that is currently being used to differentiate trigeminal neuralgia cases. Because there were only 250 patient participants at the conference, we were able to have both large meetings and smaller meetings with all of the specialists at the conference.

I am not advocating that Jen go out and have the MVD surgery. I was just sharing my experience with it. Everyone must decide that on their own. While it is true that I have suffered complications from the MVD's, I don't consider my experience tragic. I was completely pain free for two and a half years following the first MVD. To me, that was a miracle. My hope from the second and successive procedures was to experience that same pain-free existense.

I am going to "bow out" of this discussion now because it has taken a personal turn. Jen, please do all the research you can before you make any decisions. As I said in an earlier post, you have a long journey ahead of you and medication therapy is probably something you should exhaust before you even consider a surgical option.

Best of luck to all of you,

Jackie

15

Thank you ladies for all sharing your experiences and I am sorry they have caused some bad feelings. I am so extremely appreciative of all the support and information everyone has shared. I take everyones opinions to heart and I can see how people can have such differing opinions on dealing with TN. This type of discussion is something I deal with in my own head on a daily basis.

I have been trying LOTS of different types of meds including Topamax, Gabapentin, carbamezapine, and Lyrica over the last 6 years. My latest drug, Lyrica has been a total failure again. I am seriously entertaining MVD so I really do appreciate everyones opinion, knowledge and experiences!

I wish everyone well.