Confused about ATN & MVD surgery

General General TN & GPN (Old Site)
1

I have ATN going on a year and a half straight now. I met with a neurosurgeon at St. Micheal's in Toronto--one of only a handful in Canada that perform MVD. He said I have neuropathy and not neuralgia. He offered me no help and has referred me on to another neurologist. I have had two MRIs with and without contrast that show nothing. I am guessing that because no compression was showing he is unwilling to operate?

Why are some people offered MVD for Atypical TN??? Does it solely depend on the DR. and what he or she believes and is willing to try?

I watched the video from Dr. Casey who says MVD can be successful for ATN (I forget the statistic).

I am doing pretty well right now with medication but am also aware that my situation can change in the future. I want to be proactive with this and look for answers where ever I can.

2

I believe it is 65% of ATN with MVD can live more quality of life… With the right surgeon

3

Thanks for your replies! Yeah 65% isn't too great KC.

And Jamie what you went through sounds really horrible :( I hope you are able to find some relief. That is my fear with any invasive procedure--that it will make it worse. I know how difficult it is to try to function with this pain. I have a five year old girl and work three jobs. I am getting to know my pain levels pretty well!!

There is so much conflicting information out there. The more questions I have, the fewer answers I get!

I am very, very lucky that my medication is working very well right now so I do not intend to rock the boat! I have had this long enough now to know that it can get way worse and things can flip over night. What started in one tooth is now bilateral in the bottom two branches.

4

Hi justjane37. You are so right that the 65% number for ATN patients’ success with MVD given by Dr. Casey, arguably the best surgeon in this field, isn’t too promising, especially if you’re one of the 35% IT MAKES WORSE!! I agree with Jamie that all I’ve researched says ANY surgical- type procedure on an ATN patient would make pain worse. And we don’t know how many of the 65% got LASTING relief from pain or improvement of quality of life. Could some have gotten better initially and then gotten worse? As an ATN sufferer, who had a horrific experience with a minimally invasive, “no risk” nerve block injection treatment - WORSE X 1,000,000!!! - I’ll stay away from any procedures. Not worth the risk even when there’s supposed to be “no risk”!



justjane37 said:

Thanks for your replies! Yeah 65% isn’t too great KC.

And Jamie what you went through sounds really horrible :frowning: I hope you are able to find some relief. That is my fear with any invasive procedure–that it will make it worse. I know how difficult it is to try to function with this pain. I have a five year old girl and work three jobs. I am getting to know my pain levels pretty well!!

There is so much conflicting information out there. The more questions I have, the fewer answers I get!

I am very, very lucky that my medication is working very well right now so I do not intend to rock the boat! I have had this long enough now to know that it can get way worse and things can flip over night. What started in one tooth is now bilateral in the bottom two branches.

5

Thanks for this ZeldasSis. I am sorry that you have gone through so much and are in so much pain. You bring up many valid points.

I know that when I am in pain I would do anything to rid myself of it. It is so much more difficult when there is such conflicting information about what will help and what works for one doesn't always work for others.

ZeldasSis said:

Hi justjane37. You are so right that the 65% number for ATN patients' success with MVD given by Dr. Casey, arguably the best surgeon in this field, isn't too promising, especially if you're one of the 35% IT MAKES WORSE!! I agree with Jamie that all I've researched says ANY surgical- type procedure on an ATN patient would make pain worse. And we don't know how many of the 65% got LASTING relief from pain or improvement of quality of life. Could some have gotten better initially and then gotten worse? As an ATN sufferer, who had a horrific experience with a minimally invasive, "no risk" nerve block injection treatment - WORSE X 1,000,000!!! - I'll stay away from any procedures. Not worth the risk even when there's supposed to be "no risk"!

justjane37 said:

Thanks for your replies! Yeah 65% isn't too great KC.

And Jamie what you went through sounds really horrible :( I hope you are able to find some relief. That is my fear with any invasive procedure--that it will make it worse. I know how difficult it is to try to function with this pain. I have a five year old girl and work three jobs. I am getting to know my pain levels pretty well!!

There is so much conflicting information out there. The more questions I have, the fewer answers I get!

I am very, very lucky that my medication is working very well right now so I do not intend to rock the boat! I have had this long enough now to know that it can get way worse and things can flip over night. What started in one tooth is now bilateral in the bottom two branches.

6

Its not called success rate…



Its called better quality of life …for many who are a candidate

May get less pain

May get less meds



Not a cure rate

Something like this link…similar

http://www.livingwithtn.org/profiles/blogs/effect-of-mvd-on-tn-patients-with-or-without-constant-pain

7

Justjane, it also depends on your medical history with TN. What meds you’ve tried, what’s worked what’s not, how the pain presents, symptoms, triggers, remissions, everything. But yes some will only agree if there are compressions…

My MVD a year ago was for my left side (I have bilateral with classic TN1 on my right) which always presented as TN2/ATN but as it worsened and became resistant to meds I also developed TN1 classic shocks.

No compressions ever showed on mris throughout my years with TN.



Doctors opinions vary.

Statistics vary on outcomes.



I chose MVD as my pain was through the roof, worsening and not responding to any meds.

Both neurosurgeons who agreed to perform MVD for me could not make any guarantees as to my outcome. I spent many months researching, I cannot stress enough how it is a personal decision and one must be realistic as to the outcomes and research is essential.

MVD is not proclaimed a cure. It is shown as a procedure that can relieve the pain for many for a number of years and minimize the pain for some.

Until a true cause for idiopathic TN is found there is no sure fire cure.

Surgeons are concerned about MVD or other procedures worsening an individuals TN because it has happened for both TN1 and TN2 patients.



In my case, I HAD to try MVD it was the only procedure that didnt cause permanent damage to the nerve as long as the nerve itself is not overmanipulated, cut, etc

I made my surgeon promise not to do anything to the nerve especially if no compressions were found.



He found 3 compressions ( two major arteries and a large vein).

I was a pain free NOT TN free for 4-5 months, had reduced my meds from 3 to 1 and had blessed relief at last on only one med. by months 5-6 post op the TN pain worsened again…the med dance began again.



A year post op and in my case my TN is still not controlled by meds BUT it is definitely better than pre-MVD , if only slightly better. I now have more times where my pain is minimal, lower than 6 on a pain scale and only minimal times where it’s intense 6 and over. But that’s even hard to say because it changes all the time. I can just assure you that for me MVD made a small difference, and those 4-5 months pain free was such a gift.

Pre MVD my pain was 24/7 Intense.



I’m still unable to work, unable to drive ( due to meds) still on ever changing meds and high doses to try and find the magic that might control this monster a little…



Research and understand that there are a lot of mixed messages in the literature for TN, sort through it and make a decision and seek out a doctor / neurosurgeon who is willing to support your choices for your quality of life.



Justjane, my MVD was performed by Dr. Kaufmann in Winnipeg, I flew there from Alberta.



Best wishes, Mimi

8

Hey Justjane37, I read both the above links provided as answers to you. If you read them as I do - it’s even MORE CONFUSING! The one where actual people who underwent the MVD scares the pants off me! Lots more cases of worse quality of life/increased pain. But then the research study done by medical professionals contradicts what the actual patients are saying! I believe the Dr’s thoroughness in his/her DIAGNOSING the exact type of pain one has and the likely outcome, along with, of course Dr’s experience and skill are key. But for ATN sufferers, it gets iffy no matter what. One research study, that’s in opposition to all the others that say MVD makes ATN worse, seems to be contradicted by the actual ATN patients who are sorry they tried it. As an ATN sufferer, and believe me I SUFFER DAILY, I KNOW I’d NEVER take the chance that the MVD could make me even worse. But that’s me. Each person gets to decide what risks they are willing to take.

9

Thanks Mimi,

You have been through so much and are such a positive person. The reasons you talk about are precisely the reason that I am asking this question and trying to find proper specialists that will help me. I think your neurosurgeon would be next on my list to contact if things get worse. I am in Ontario but would go to the moon if I had to.

Right now my medication is working (still have break through pain and flare ups but only a 1-3 pain wise). I have had a taste of how things can get worse. My left side has been constant for a year and a half now. And then it suddenly went bilateral about three months ago despite being on medication. I increased and that is helping. At the beginning of this 25mgs of Amitriptyline worked and now I am at 60mgs and not 100% pain free.

I have also started getting lightening bolts across the bottom two branches where I already have ATN. They are not really painful but so fast out of nowhere. They totally catch me off guard and scare the beans out of me! And I am also getting some symptoms in the top branch now.

I am meeting with a neurologist that apparently specializes in facial pain so we will see how that goes. It feels like one step forward and two steps back. But I will keep looking and pushing for help. And, of course, knowledge is power. I am becoming my own specialist.

And everyone on this site is amazing. I learn so much from all of you.

Thank you

Mimi said:

Justjane, it also depends on your medical history with TN. What meds you've tried, what's worked what's not, how the pain presents, symptoms, triggers, remissions, everything. But yes some will only agree if there are compressions....

My MVD a year ago was for my left side (I have bilateral with classic TN1 on my right) which always presented as TN2/ATN but as it worsened and became resistant to meds I also developed TN1 classic shocks.
No compressions ever showed on mris throughout my years with TN.

Doctors opinions vary.
Statistics vary on outcomes.

I chose MVD as my pain was through the roof, worsening and not responding to any meds.
Both neurosurgeons who agreed to perform MVD for me could not make any guarantees as to my outcome. I spent many months researching, I cannot stress enough how it is a personal decision and one must be realistic as to the outcomes and research is essential.
MVD is not proclaimed a cure. It is shown as a procedure that can relieve the pain for many for a number of years and minimize the pain for some.
Until a true cause for idiopathic TN is found there is no sure fire cure.
Surgeons are concerned about MVD or other procedures worsening an individuals TN because it has happened for both TN1 and TN2 patients.

In my case, I HAD to try MVD it was the only procedure that didnt cause permanent damage to the nerve as long as the nerve itself is not overmanipulated, cut, etc
I made my surgeon promise not to do anything to the nerve especially if no compressions were found.

He found 3 compressions ( two major arteries and a large vein).
I was a pain free NOT TN free for 4-5 months, had reduced my meds from 3 to 1 and had blessed relief at last on only one med. by months 5-6 post op the TN pain worsened again...the med dance began again.

A year post op and in my case my TN is still not controlled by meds BUT it is definitely better than pre-MVD , if only slightly better. I now have more times where my pain is minimal, lower than 6 on a pain scale and only minimal times where it's intense 6 and over. But that's even hard to say because it changes all the time. I can just assure you that for me MVD made a small difference, and those 4-5 months pain free was such a gift.
Pre MVD my pain was 24/7 Intense.

I'm still unable to work, unable to drive ( due to meds) still on ever changing meds and high doses to try and find the magic that might control this monster a little....

Research and understand that there are a lot of mixed messages in the literature for TN, sort through it and make a decision and seek out a doctor / neurosurgeon who is willing to support your choices for your quality of life.

Justjane, my MVD was performed by Dr. Kaufmann in Winnipeg, I flew there from Alberta.

Best wishes, Mimi
10

It is so confusing! I am more confused now than when I asked this question. Lol. I am always reading and talking to other people with TN. There is so many things about this that are frightening.

Everything about this entire experience is confusing. It is a huge guessing game. I just want someone to fix it!

ZeldasSis said:

Hey Justjane37, I read both the above links provided as answers to you. If you read them as I do - it's even MORE CONFUSING! The one where actual people who underwent the MVD scares the pants off me! Lots more cases of worse quality of life/increased pain. But then the research study done by medical professionals contradicts what the actual patients are saying! I believe the Dr's thoroughness in his/her DIAGNOSING the exact type of pain one has and the likely outcome, along with, of course Dr's experience and skill are key. But for ATN sufferers, it gets iffy no matter what. One research study, that's in opposition to all the others that say MVD makes ATN worse, seems to be contradicted by the actual ATN patients who are sorry they tried it. As an ATN sufferer, and believe me I SUFFER DAILY, I KNOW I'd NEVER take the chance that the MVD could make me even worse. But that's me. Each person gets to decide what risks they are willing to take.
11

Agreed, justjane. We all would initially want to jump at anything to relieve our pain especially when it’s active and severe. That’s exactly what I did. Stress had made monthly minor pain into severe daily pain. Nerve block was the “no risk” option offered by this prestigious & experienced Dr. A no-brainer for me. NEVER did he say anything WORSE could happen. Well, how wrong he was. And there are postings all over this site about bad effects of nerve blocks by others as well. Just be careful not to let your pain “push” you into anything that has the potential to make that awful pain even worse. I pray God leads you in your decisions. It’s a “minefield” out there! Lol.



justjane37 said:

Thanks for this ZeldasSis. I am sorry that you have gone through so much and are in so much pain. You bring up many valid points.

I know that when I am in pain I would do anything to rid myself of it. It is so much more difficult when there is such conflicting information about what will help and what works for one doesn’t always work for others.

ZeldasSis said:

Hi justjane37. You are so right that the 65% number for ATN patients’ success with MVD given by Dr. Casey, arguably the best surgeon in this field, isn’t too promising, especially if you’re one of the 35% IT MAKES WORSE!! I agree with Jamie that all I’ve researched says ANY surgical- type procedure on an ATN patient would make pain worse. And we don’t know how many of the 65% got LASTING relief from pain or improvement of quality of life. Could some have gotten better initially and then gotten worse? As an ATN sufferer, who had a horrific experience with a minimally invasive, “no risk” nerve block injection treatment - WORSE X 1,000,000!!! - I’ll stay away from any procedures. Not worth the risk even when there’s supposed to be “no risk”!

justjane37 said:

Thanks for your replies! Yeah 65% isn’t too great KC.

And Jamie what you went through sounds really horrible :frowning: I hope you are able to find some relief. That is my fear with any invasive procedure–that it will make it worse. I know how difficult it is to try to function with this pain. I have a five year old girl and work three jobs. I am getting to know my pain levels pretty well!!

There is so much conflicting information out there. The more questions I have, the fewer answers I get!

I am very, very lucky that my medication is working very well right now so I do not intend to rock the boat! I have had this long enough now to know that it can get way worse and things can flip over night. What started in one tooth is now bilateral in the bottom two branches.

12

I had an MVD for ATN. It helped 100% but only for 8 weeks....

I had 4 MRI's with contrast prior to having it. On the last MRI they noted numerous vessels in the area of the TN nerve on both sides, and an obvious compression on the side with the pain that ended up being an artery and 2 veins strangling the nerve.

Since there was an obvious compression they said the next step was to relieve it.

Now I'm seeing a new neurosurgeon who does the PNS units for ATN, but he said the pain I have in jaw can't get a PNS unit electrode because of all the movement with opening/closing your mouth.

He is leaning towards another MVD. I'm waiting on the insurance to approve another MRI since I haven't had one post MVD, and the surgeon has a feeling things may have shifted and could be relieved from another MVD.

If I don't qualify for an MVD then he said the same as everyone else, the only options are gamma knife or rhizotomy.....

13

After hearing some of your stories in this thread I have absolutely nothing to complain about. You have all been through so much. And again you are so positive about it. Any pain free time with TN is a gift but to have major surgery and it only work for eight weeks is disheartening. But I guess to be 100% pain free is so promising. The surgery obviously corrected something that was happening. Everything is such a mystery with this.

I'm glad that pain free time gave you the opportunity to ground yourself and find a great job.

From the sounds of it you are hopeful that you will qualify for another MVD. That is very brave to face that again. I hope that you find relief soon.

shindig said:

I had an MVD for ATN. It helped 100% but only for 8 weeks....

I had 4 MRI's with contrast prior to having it. On the last MRI they noted numerous vessels in the area of the TN nerve on both sides, and an obvious compression on the side with the pain that ended up being an artery and 2 veins strangling the nerve.

Since there was an obvious compression they said the next step was to relieve it.

Now I'm seeing a new neurosurgeon who does the PNS units for ATN, but he said the pain I have in jaw can't get a PNS unit electrode because of all the movement with opening/closing your mouth.

He is leaning towards another MVD. I'm waiting on the insurance to approve another MRI since I haven't had one post MVD, and the surgeon has a feeling things may have shifted and could be relieved from another MVD.

If I don't qualify for an MVD then he said the same as everyone else, the only options are gamma knife or rhizotomy.....

14

I think my ideal situation would be getting a PNS unit, but after more than 2.5 years I'm no closer to knowing what exactly is wrong. Everyone I see has a different opinion.

The first neurologist did an MRI with contrast that showed a lesion, after spinal tap(worst experience) and every blood test, he diagnosed it as "Tolosa-hunt syndrome" because of the lesion in the "cavernous sinus" and my eye was so extremely painful if I move it. EXTREME. I took a large quantity of prednisone for a few months but the pain didn't get better.

I went to new neurologist for second opinion on "tolosa-hunt syndrome" who gave me nortriptyline and oxcarbazapine and the eye pain improved instantly. Eventually he referred for MVD. After MVD and pain returned he referred me to the pain Clinic which was a completely worthless experience.

When I went to the ENT after describing the pain in the back roof of my throat, injecting lidocaine, getting a CT, he scheduled me for surgery for "Eagle's Syndrome". I told my neurologist about it, he talked to the ENT and the ENT canceled the surgery and told me to go back to the neurosurgeon who did my MVD for face pain matters.

I'm scheduled to get my wisdom teeth out on Aug. 1st, hoping that does something positive.

I'm gathering all my imaging to give to the new neurosurgeon to see what his take on it is. If a PNS would help my eye pain I'd definitely do it. He schedule me to do an EMG on my arm (which also has nerve pain/numbness) which is a nerve conduction study. Sounds terrible though.

MVD was a piece of cake for me. From the time I woke up in ICU I was super talkative and pain free. The only real pain was muscle pain from where they pealed the muscle off my skull (rather than cut like most MVDs), which is why I had such an awesome scar:

lol the "shark bite". But I started my job 9 days after surgery (drove hour commute), felt like a million bucks. I stopped by the pharmacy and then the dispensary on the way home from the hospital and left quite the impression. I was showing everyone lol, at the grocery store, wherever, just "hey check this out".... the dispensary gave me $150 of free concentrates.

I'd do it again if they find a good reason to in a heartbeat. Now they can just pop the cap. I just turned 30 and don't want to do the gamma or rhizotomy, so hoping for anything that can get me off these meds and pain free.

15

You are a very strong person and you have been through a lot. It is always a run around and no one seems to know how to help. I am only a year and a half in and still searching for someone to help me. I am the only one that has helped me so far--I first had ATN when I was 29 and it went away until last year when I was 37. I wish that would happen again! So when it started back up last year I went through the whole dental horror show convinced (and hoping like hell) that it was the tooth. Well, a root canal and a lot of money later I left in more pain. I asked my family Dr. for Amitriptyline because it worked for me the first time and I am so thankful that it continues to work pretty well.

I still don't really have a proper diagnosis. Nothing showed on my MRIs. The neurosurgeon I met with called it "neuropathy" and has sent me along to another specialist that I am waiting to see. I am the fourth person in my family to have this. Both my mom and my aunt have had Type 1 and they know so little about it! It is amazing what the internet has done because even a few years ago if you had this you were completely in the dark.

You are a really good advocate for yourself which you have to be with this. I hope that you are able to find some answers and receive some help.

When you said you are having your wisdom teeth out that made me cringe. I am petrified of the dentist! Make sure you research that and talk to people on here, maybe Cleo, about anything you should be careful of. I have just heard so many horror stories on here about dentists and so many people have had their nerves injured or their pain has worsened after dental procedures.

16

Hi Cleo, I only have 2 wisdom teeth on the top, one on each side, which I'm scheduled to have removed. The oral surgeon says it has nothing to do with the face pain but I have a knot of pain above and deeper than the tooth so want to rule it out. Ever heard of getting the top one's out causing problems with someone already having TN?

17

A word of caution here shindig. TN pain can really imitate a tooth ache. I'm sure you already know this. I have ATN in my teeth on both sides--top and bottom. I still swear sometimes that it has to be a tooth! But I know better. The pain is on the tooth, under or above the tooth, under my nose, along my jaw, my cheek, jaw and up to my ear.

My ATN was NOT caused by dental work. But I did have a filling, a medicated filling, antibiotics, pain meds and an unnecessary root canal trying to rid myself of the pain. At one point I begged the dentist to pull my tooth--thankfully he didn't.

I'm sure Cleo will chime in again.

18

Hi shindig. I’ve had ATN for 8 years. I had dentist, endodontist, periodontist, maxillofacial Dr, orofacial Dr, ophthalmologist, ENT,…& others I don’t even remember do ALL kinds of tests to determine the cause of my cheek pain before going to a neurologist & getting the diagnosis of ATN. I thought a tooth root was hitting a nerve for sure. But ALL dental & other tests were negative, including MRIs & MRAs of brain. SO SO of many of us ATN & TN sufferers do this & some have teeth removed anyway. And the pain remains or gets worse. My Pain Mgt Dr made me promise NEVER to get dental work done - even a filling - without the dentist consulting him, and to NEVER let anyone put needles anywhere near any area of the Trigemimal Nerve branches. He said they could irritate or damage nerve & worsen pain. I already had this happen with a Nerve Block injection in my pain-free temple. He hit/damaged the nerve. Now my temple is the WORST PAIN AREA! So please be careful! Get some other opinions if you can. I’d hate to see you come out of the wisdom tooth extraction with worse pain. You’ve been thru enough!



shindig said:

Hi Cleo, I only have 2 wisdom teeth on the top, one on each side, which I’m scheduled to have removed. The oral surgeon says it has nothing to do with the face pain but I have a knot of pain above and deeper than the tooth so want to rule it out. Ever heard of getting the top one’s out causing problems with someone already having TN?