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Living With Facial Pain

Surgical options for "pure" TN type 2 (i.e. TN type 2 that never had type 1 symptoms)?

#1

Dear all,

I have a special form of TN type 2 - namely the one that was type 2 “from the start” - i.e., I never had type 1, and therefore I never ever transitioned from type 1 (as would be the more typical scenario). Let’s call it for now “pure TN type 2”. I am not exactly sure what people here normally call this, but in the “fighting back” book this sub-category is mentioned briefly (though, sadly, not treated in depth).

While I am grateful that I never experience(d) type 1 pain, this “pure” subytpe has the disadvantage that it takes a loooong time to diagnose (nearly ten years, in my case). Anyways, I was wondering if there are members here with the same special (“pure”) subform of TN (please only answer if you do) - and if any of these have tried any form of surgery? Could you please answer here, also with information on what led you to choose that particular surgery and also, of course, how and if it helped you. Many many thanks!

P.S.: Note that, before I opened this topic, I looked and saw that there was a thread that looked superfically similar, called " Any Hope for Surgical Success for Atypical TN or Type 2?" but that thread is A) old and B) is not quite the thread that I have opened here - it would seem to include the more usual form of TN type 2 - namely the one that transitioned to type 2 via type 1. Again, I myself ave “pure” type 2: I never transitioned (since the beginning of my pain, I was always type 2).

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#2

No free lunch. Surgery is destructive, no guarantee, side effects, and potential for worse to follow. In my case, i wish that I had immediately started tricylic antidepressants and put up with the side effects for the promise of no pain within a few months vs a life time of pain management.

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#3

Thank you. Indeed, the same here. Ironically, one of the first medication given to me was amitriptyline. But because it was amitriptyline (the cheapest stuff they could give) it sedated me so bad that I never reached the required levels to get relief. So I quit. And because I did not know at the time what condition I have, I did not insist on another tricyclic med. That is now many years ago.

But note also please that I asked specifically for experiences with surgery given this subcondition of TN. Any information is useful. The “fighting back” book is great, but a) now a bit old and b) they lump all TN type 2 together - thus it is very unclear how the “pure” TN type 2 case reacts to surgery. Hence this thread.

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#4

I’ve had trigeminal neuralgia type 2 for 14 years, which by the way is the official name, never heard it call “pure” TN. I was diagnosed right away and had gamma knife within eight months of my diagnosis, it didn’t help at all. Had MRI/MRA’s every year hoping they would find a cause, none of my local doctors could find any cause. I was part of a Facebook TN group that kept talking about a neurosurgeon, Dr. Mark Linksey located in Irvin, California. He was successfully relieving different types of TN/facial pain and for all ages. I contacted Dr. Linksey’s office and there were many emails back and forth including my MRI/MRA. After a few weeks it was determined I would benefit from an appointment with him. Many of his patients travel long distance to see him so his office tries very hard to ensure no ones time or money will be wasted. Long story short, in 2015 he did my mvd and found six compressions. Unfortunately my pain persists…I’m lucky the MVD didn’t cause further pain, I ended up exactly like I was prior to the MVD.

My neurologist says I’m one of her most difficult TN cases. After trying practically every medication and only able to tolerate a few, I finally found one that works extremely well, Gralise. I did a successful two month trial with samples from my doctor. My insurance denied my prescription, but my doctor didn’t give up, he went back and forth, denial after denial and finally got it approved. I’ve been taking it for two years now and it provides about 13 hours of complete pain relief without any side effects. While on Gralise most of my triggers don’t bother me either. I still take other TN meds and two low-dose opioids, which I’ve been able to cut back since being on Gralise. Good luck!

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#5

I too, have only had TN2 or ATN. I have tried every pain procedure / treatment with almost no relief. (Also failed every medicine typically given for TN) The only relief I ever received is after having Ketamine infusion treatments and the daily use of KRATOM. I have put off seeing another neurosurgeon for fear that there is nothing to be done or I am a candidate for experimental brain surgery. I am frustrated, scared and exhausted from TN. Sounds like you are in the same boat. I am sorry that you are suffering but I am glad that you asked this question.
My TN2 is now mostly pain centered in my corneas and made worse when I read and affected by artificial light. Sending gentle hugs-

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#6

Hi,

I question your research a bit as most people that I have come across with ATN or Type 2 have never had TN1 symptoms. And if anything TN1 is largely regarded as “pure” Trigeminal Neuralgia. It is Type 2 that is a modge-podge of symptoms, diagnoses and treatments.

I also have ATN or Type 2. I am a rarity as it is hereditary in my family. I am the fifth known member with this wretched pain. The thing with ATN is that there is no clear known cause and it does not follow “typical” symptoms of Trigeminal Neuralgia. We are the atypical, which in my experience Drs label everyone that experiences any type of lasting pain or any pain less then a bolt of lightening. Many of us will get multiple diagnoses as well…ATN, Type 2, Facial Pain, Facial Neuropathy. I have seen more Drs then I care to count and I will tell you that every single one of them gave different diagnoses, offered different treatment and basically just don’t know what to do with us other then throw pills at us.

Surgery is offered as a “relative success” for Type 1 because of the belief that it is due to a compression. But even with that, MVD is not always successful for those with Type 1, or the pain returns after a time. The “compression” theory is one that is constantly being reviewed as well. There is actually a large part of the “normal” population that have a compression of the Trigeminal Nerve but do not have any symptoms of TN and then there are people with TN1 that do not have compressions. So even for those with TN1 surgery is quite the gamble.

I have been at this for a very long time and surgeons will not touch us for a very good reason. First of all because they do not know the cause and secondly because the chance of success with any invasive treatment is very low. That has been more then enough to convince me not to do a thing. There is research being done but unfortunately we are the pioneers of that research.

Tricyclics have helped me greatly. Have you tried Nortriptyline? I will also say with each one of us are very different with our symptoms and with treatments that work. Part of my effective treatment has been recognizing triggers and making lifestyle changes, including constantly weeding sources of stress out of my life.

Some people do end up trying different surgeries and invasive treatments, but I guess you have to weigh the odds and look at all possible outcomes. I am sorry that you are dealing with this monster and I know so well the frustration and heartache of trying to find pain relief and understanding.

Ask anything here. We hold a wealth of knowledge and understanding.

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