Having a hard time deciding next route to take

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1

I have been a long time lurker on these boards and only recently decided to join.

I have had TN type 2 or atypical facial pain since September 14, 2011. After the diagnosis, I tried multiple medications, but none of them seemed to work. I was finally put on Neurontin and my pain was mostly contained. On most days, it stayed at a 1 or 2 out of 10 on the pain scale. About once a month, it would get worse but I was always able to manage it by resting or taking additional medication.

In the last couple weeks, my pain has really increased. I am almost maxing out on Neurontin (3600 mg/ day) and I'm also on Lamictal which really doesn't do anything.

I decided to get back on Cymbalta which was the only drug I have ever taken that eliminated my pain but left me multiple extremely unpleasant side effects. I decided yesterday that I had to get back on Cymbalta because I felt like I was going to lose my mind. I went to my general practitioner who has no clue what to do for me so he just wrote a prescription for whatever I asked for and he also gave me a shot of Toradol just for the heck of it.

I am going for an MRI of my brain today which I think makes about the 5th or 6th MRI that I've had. (It's funny how every neurosurgeon or neurologist I've been to says that the the clarity of other places MRIs is no good. They all want an MRI done at their place.) Anyways, the neurosurgeon that I'm going to wants to do an MVD or possibly a DREZ procedure after looking at the MRI. He is only the 2nd neurosurgeon that I've been to that says I should do have a surgery done to correct this problem. The first doctor who recommended MVD for this was Dr. Jeffrey Brown in Long Island, NY. After reading posts on this site and then visiting a neurosurgeon in Nashville, TN, I came to the conclusion that MVD shouldn't be done on people who have atypical facial pain.

But now, the doctor that I'm seeing (Dr. Amr El-Naggar in Somerset, KY) is a friend of the family. He is tight with my parents and is friends with many of my friends. I don't see him offering this surgery to me if he didn't think it would work. However, through other research, I keep seeing that MVD shouldn't be done on Type 2 trigeminal neuralgia.

I don't want to be in pain anymore and want to believe that it can be fixed by having this surgery done BUT I also don't want to be worse off after the surgery. I keep thinking that there has to be a medication out there that I haven't tried that can eliminate the pain without debilitating side effects.

What do you all think? If the MVD doesn't work, is it nearly guaranteed that I will be in more pain?? I am so worried about having surgery because I feel like it's a road that once you get on, you can't get off. I have two little kids, a 4 year old and a two year old. I want to be the best Dad that I can be and am terrified that this surgery may rob me of precious time with them.

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Dr Ken Casey of the US TN Association referred me to what might be the largest case review ever done for MVD patients whose pain was dominated by Atypical TN symptoms. Success rates are significantly lower than with MVD for typical TN (volleys of lightning strike electric shock pain). About a third of ATN patients got initial pain relief or major improvement. Of these, pain recurred for about half in three years.

I believe your perception is correct that many neurosurgeons are increasingly trying to avoid both MVD and RF rhizotomy in patients whose pain is dominated by atypical TN symptoms. I suggest that you talk with your neurosurgeon about implanting electrodes for a brain-surface or perhaps gray-matter electro-stimulator that can be custom tailored to suppress your specific pain pattern. The research literature doesn't have a lot of high quality studies on this subject, but I'm seeing a lot more mention of such protocols in patient reports and some newer papers.

REgards and best,

Red Lawhern, PH.D.

Resident Research Analyst and Moderator

Living With TN

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Have you tried any topical medications? That might be an option if side effects are a problem. I'm using a compounded topical right now and I've been able to cut down my Tegretol dose from 600mg a day to 200mg a day. I have no side effects and the pain is at a 0-1. Feel free to message me if you want more info about topicals. There's also massage, physiotherapy, acupuncture, and chiropractic. The evidence for these is sparse but they are non-invasive and generally well-tolerated, but they can be costly and time-consuming. Botox is also promising - it works in about 50% of people and has very few side effects if performed correctly.

Neurosurgeons tend to be biased towards recommending surgery. I don't believe this is necessarily financially motivated, although of course they need to perform surgeries to maintain their livelihood. There is a saying that "if all you have is a hammer, everything looks like a nail." If the MVD is performed correctly, it should cause no destruction to the trigeminal nerve and the risk of anaesthesia dolorsa is very low. It might be worth trying.

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I had type 1 and atypical. I had a MVD done 5 years ago, my surgeon said it would help with the shocking pain, but not the other, and he was right. I'm now at the same dose of Gabapentin (Neurontin) as you, and also take Tegretol, added in this last year for ear pain, geniculate neuralgia, for which it has helped. But geez, it is an un-ending rollercoaster of pain in my face (eye, cheek bone, molars etc.). I've had Botox before for face pain with some success and also had it for ear pain three times with no success. A friend of a friend has spoken highly of gamma knife, but I am too afraid of destructive treatments. (I know MVD is potentially destructive, but sure not in the same basket as gamma knife). Acupuncture helped for a day, I think just because it was so relaxing and I felt cared for, I did it 3x a week for 9 months pre surgery and after until I just couldn't afford it and had to accept that it wasn't helping me in the long run. I've been having a lot more pain and have been thinking about Botox again, which helped relax the muscles, thus helping with spasms and decreased the pain . Of course pain still comes, but helps somewhat.

I've come to a point of acceptance that I'll have this forever, but doggone some days are bad!

I'm sure you've read the MVD group. Good luck in whatever you try.

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Red,

So the study basically says expect success rates of approximately 16.5% for more than 3 years?

I'm not sure it's worth all the pain and hassle for one of the better scenarios, much less no relief. I just had an MRI today and my friend, who is the radiologist, called to tell me that he did see a particular artery pushing on the trigeminal nerve.

I'm not sure if that is the case prior to every MVD being performed but it does seem significant and gives me a glimmer of hope that something good could come of it.

Does anybody know the likelihood that my pain would increase after an MVD?

Thanks so much.

Matt

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It's next to impossible to predict outcome likelihood for an individual, Matt. If you've seen a compression in imagery, the odds are better. But the patterns of the pain itself are the strongest indicators. If you have "some" typical TN, you could get "some" improvement from decompressing the nerve. If your pain is dominated by atypical TN, then it's less likely that you'll see success with MVD or any other type of surgery. I would also consider any doctor who recommends gamma knife for ATN to be ill-trained. That procedure has a much lower likelihood of persistent relief even in typical TN patients.

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Matt, have you asked your neurologist about amitriptyline or Nortriptyline? It has helped quite a few of us TN2 patients. For nearly a year I would read about TN2 members finding relief with one of these two meds added in their mix and I finally asked my dr. to let me try Nortriptyline. I had been having to increase my gabapentin and hated the side effects. A very low dose has helped tremendously.

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I second, shadow2!Iam having good effect of Tegretol for the 1 and amitryptiline for the 2. However, I do have to keep increasing the ami, still finding my dosage. I will speak to my dr. about adding on baclofen, as I have read on here that those three in combination is a very good mix for us. Make sure you get to try some of the standard meds before you get on to surgery! I, personally, look in great hope towards PNS. People on this site are consequently reporting good results.

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I am in accord with Shadow2 and Tineline. I have found relief using a combo of drugs: Amitriptyline and Gabapentin together in smaller doses work for me.

Everything I have read here, on PubMed, in the book, Striking Back, and from Red seems to indicate that surgery is not the go-to choice for TN2. I will avoid brain surgery and first try any drug or drug combo that has shown results.

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I have bilateral ATN, both the shocks and burning boring pain. My right side was affected for close to ten years , and my left just one year prior to surgery. Dr. Brown performed MVDS on both sides. While the shocking pain was resolved through surgery on the right side, the burning boring pain remained. Dr. Brown attributed this to the length of time that the nerve had been compressed. Seven months after surgery he implanted a PNS, peripheral nerve stimulator, on that side to control the pain. It works extremely well !
Three months later, I had MVDS on my left side, and BOTH the shocking and burning boring pain of TN2 was resolved. I no longer take any medication and my pain on the right is completely controlled by the PNS.
I know everyone’s situation is different, but did want to share what I think is my success story with you.
Please feel free to ask me any questions you might have.
Best
Christine

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Christine, if you haven't done so already, please send me a note at lawhern@hotmail.com with the model of the PNS that Dr Brown implanted. I'm trying to acquire an experience base for a short paper in support of our membership and others who are considering this general class of techniques.

Regards, Red

Christine said:

I have bilateral ATN, both the shocks and burning boring pain. My right side was affected for close to ten years , and my left just one year prior to surgery. Dr. Brown performed MVDS on both sides. While the shocking pain was resolved through surgery on the right side, the burning boring pain remained. Dr. Brown attributed this to the length of time that the nerve had been compressed. Seven months after surgery he implanted a PNS, peripheral nerve stimulator, on that side to control the pain. It works extremely well !
Three months later, I had MVDS on my left side, and BOTH the shocking and burning boring pain of TN2 was resolved. I no longer take any medication and my pain on the right is completely controlled by the PNS.
I know everyone's situation is different, but did want to share what I think is my success story with you.
Please feel free to ask me any questions you might have.
Best
Christine
12

Also look at dr caseys video…the tides of neuropathic pains

ATN patients can get improved lives by 65% for MVD ,maybe less meds
BUT not full remissions for most

Do what is best for you!

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Dancer, if you can find he video link, I'd appreciate your forwarding it. I've not seen the 65% figure, and I correspond with Ken from time to time.

Regards, Red

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Thanks so much KcDancer and Red. https://vimeo.com/10284243

I will check it out. I found the video and will watch it later tonight as my appointment with my neurosurgeon is tomorrow. I am going to ask him if he can provide me with any literature that suggests MVD is successful in Type 2 patients bc I can't seem to find it anywhere. In fact, everywhere that I've looked has said that surgery is not recommended for Type 2 patients.

My neurosurgeon is Dr. Amr El-Naggar and is in Somerset, KY. He is a facial pain specialist and apparently created one of the tools used in the DREZ procedure while he was at Duke University. He is a family friend and I trust him and know he wouldn't recommend something that he didn't think would work but man, it's difficult to blindly trust somebody to do a surgery on you when all the evidence suggests the end result will not be of benefit.

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If you fast forward to 39:55, Dr. Casey discusses MVD with type 2 people and their results, which he does say is 65% effective. Well, this makes things a bit more complicated for me. I had my mind made up that MVD was out of the question unless I was shown some sort of documentation and I was pretty sure there wasn't going to be any proof. Now, I need to think about it again.

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Thanks for tracking down the 65% number. It's the highest rate of success I've heard quoted. I will also do some further digging on the papers quoted in the video.

Regards, Red

Richard A. "Red" Lawhern said:

Dancer, if you can find he video link, I'd appreciate your forwarding it. I've not seen the 65% figure, and I correspond with Ken from time to time.

Regards, Red

17

Red,

Do you think the 65% success rate quoted by Dr. Casey might be skewed because he is a Janetta disciple and Janetta is so pro MVD, not only for facial pain but for so many other things as well??

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I think Ken is a well trained neuro-scientist and MD who wouldn't quote a figure that high if he didn't have pretty strong evidence. I've sent him correspondence asking for a list of references that apply to the video polylog. I also want to sit down and do a text summary of key points that he offers in the video, to be posted somewhere here on the site.

Regards, Red

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Red,

Any response from Dr. Casey on this topic? I am waiting with bated breath.

Thanks.

Matthew

Richard A. "Red" Lawhern said:

I think Ken is a well trained neuro-scientist and MD who wouldn't quote a figure that high if he didn't have pretty strong evidence. I've sent him correspondence asking for a list of references that apply to the video polylog. I also want to sit down and do a text summary of key points that he offers in the video, to be posted somewhere here on the site.

Regards, Red

20

I have a neurostimulator that helps a lot with my ATN. Pain reduction is about 75-80%.