Advocating for people with rare diseases like tn

I had my first MVD (and last I think), surgery for types 1 & 2 TN, with type 2 being the major issue. Although I still have pain and side effects from the surgery itself, I am still fairly functional. I would like to find out more about the organization of Ben’s Friends so that I can advocate for sufferers with more debilitating TN than mine. I’m not sure where to start, but I think that, perhaps, more funding for more and better research, especially into the treatment for TN2, would be great. Any ideas on how and where to start my research?
thank you so much

Camia, a warm welcome to Ben’s Friends!

We’re glad to hear from you, and thank you for your question. is part of the Bens Friends network of 40+ communities. The answer to your question lies in the fundamental mission of our network: peer-to-peer support for people whose lives have been touched by a rare disease or condition.

Research isn’t really our “thing” although we acknowledge that our network might, under some circumstances, be useful to researchers. I’m attaching a brochure that we give to researchers express an interest in Ben’s Friends.

With your experience, the best thing that you can do on Ben’s Friends is provide the emotional support that people here so desperately need. You’ve been there, you know how the people here are suffering, you finally found treatment that has worked for you, and you are now well enough to listen, encourage and give hope to others. That’s the beauty of Ben’s Friends.

If you also wish to be politically active, there are several organizations whose mission it is to press for better research and funding for it. I’m guessing that Google would point the way.

It’s so good to hear about someone who is now fairly functional, thanks to some good treatment. Please share your hope and energy with your fellow members: goodness knows, they need it!

All the best to you, and thanks for your questions and enthusiasm

Seenie from ModSupport

THank you for your reply. Just to be clear, the MVD surgery was not successful, and has left me with not only continued types 1 & 2 TN, but has also resulted in additional issues which significantly impact the quality of my life. I am functional because my TN is not always as debilitating as is often written about on this site. So, I am one of those for whom any treatment has been met with limited to no success. I want to support people like myself (I also struggle with chronic migraine, same side as the tn) who have difficulty accessing treatments that are successful and cannot take any medications due to adverse side effects. Research is the way to go, I believe, and getting adequate funding is paramount. As a rare and most rare disease, funding is not sufficient for better and more in-depth reseasrch. I have been on Ben’s friends since 2013, and am very familiar with the support provided here. In fact, in the darkest times I have found comfort in knowing that others know how I feel. Now, presented with this affliction lasting the rest of my life, and worsening over time, i want to do more on a more global scale. I will take your advice and ask Google, again.
thanks for listening


This is personal from meCamia, but I would HOPE you share your MVD experience. It is anecdotal but that being said there are a lot of folks pushing this surgery so another view is helpful. The other thing is that there is very poor record keeping in regards to this sort of thing so "statistics are meaningless in many cases. The FDA however is now requiring in many instances the collection of “natural History” your experience fits right in. We are participating in that effort.


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Some you might try:

All of these organizations have as part of their mandate advocacy, political action and/or research.

Hope this helps.


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Thank you so much!

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The Facial Pain Association does really great work working with grants for research on issues with Trigeminal Neuralgia. In Chicago there is an annual comedy show known as 'Laugh your Face Off". They have collected over $650,000.00 which has been ear marked for various research grants. Two great places to start.

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I am very sorry you are dealing with such pain and have been unable to find full relief. I too struggle with TN Type 2 and have for many years.
There is an organization, the Facial Pain Research Foundation at that does work to fund primary medical research for TN and other rare facial pain disorders. I am involved in the organization and it gives me hope to see actual research seeking cures being funded. I believe it is worthwhile, as are forums like this and the other organizations mentioned here. Patients like us need all the help we can get.

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Hi! Camis,

I believe that identifying why you have facial pain is the key to finding the correct treatment. For me it has been a long journey from the day when my facial pain started at the dental office.

After several unpleasant dental treatments I was told my pain was all in my head because I was divorced…I was diagnosed with MS, atypical facial pain and put on years of medication trial with no relief…I was at the end of the pain I could deal with 6 years in.,…at my first pain management appointment the doctor asked me “Do you have extra spit in your mouth?” I said I did not know what normal was…he said that this is in left field but have you had a ct scan? I said no …he ordered one for my neck…as it looks now the Theory is I went to the dentist and he injected my Trigeminal nerve several times…he also had my head turned way to long…and I had a ligament in my neck that elongated and turned into a bone that damaged my Trigeminal nerve…it is called Eagle Syndrome. When the bone was removed my pain went from a 15 to 10. I now treat my pain with steroids and spasm medication using trigger point massage weekly and with limitations I can now enjoy life.

I believe we are lumped into a category but with out knowing the source of the pain we are just blindly throwing darts at treatments to see if one would work. My new pain management doctor wants me to restart all of the medications I already tried because now the source of the pain has been rectified. For me those trials of medications had too many side effects and since each year I see some progress though ever so slow I tend not wanting to rock the boat…I fear facial injections, or more surgery because it might chip away at my progress…I fear a set back.

So, for me if treatments you are offered don’t feel right for you to do it…try to be a detective and find the source of your pain to find the correct treatment.

thank you so much for your information. I have gone onto the Facial Pain Association website and have been so impressed with the work they do. It was surprising to see that my neurosurgeon is a signature member. I was especially interested in reading about Toni Saunders, founder of TNnME. I will continue to pursue my research to help not only myself, but others suffering with this rare disorder. Thank you again for your kind response.

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Hello Ann4
Thank you for your kind support.
My long journey seemed to start in 2007, after my third sinus surgery. Since then, the TN- both types 1 and 2 (after doing lots of research, I believe it actually started earlier than that, but was considered cluster headaches at the time, not surprising given the chronic migraines I’ve suffered with since childhood). I’d been to several neurosurgeons and a compression was seen on an MRI on the trigeminal nerve, left side. Was it caused by the surgery? I don’t know. I’d had shocks once in awhile in my forehead and eye since my 20’s. So, the jury is still out on the exact cause or starting point.

I’ve seen 6 neurosurgeons, four of them agreed that I have TN, both classic and atypical with TN2 being the more severe problem. One said that it was not TN, no compressions were seen on the MRI, it was neuropathy and advised a nerve stimulator. And one said that it is TN, but only classic type despite the constant burning and numbness…so confusing!

Three years ago, the pain was getting so bad and more continuous that I knew I had to do something. There were times where I could not move my mouth for fear of the pain that would ensue if the air touched my lip or teeth. No good for a speech pathologist!

In 2016, I had gamma knife surgery. By then, my left eye was watering all the time, itchy and droopy. I looked like I was crying all the time, and had to reassure people that I wasn’t sad, my eye was just tearing. My eye was so irritated from the tears and my constant dabbing at it with tissues. My new neurosurgeon, said that this was part of the TN. This doctor agreed that both types were present with type 2 being the bigger issue.

The gamma knife did help the eye, and the pain on the side of my nose improved most of the time, except when I have a severe migraine. Then, I started having pain in my left front tooth. The pain was dazzling. After the initial stab, the hard palate behind the tooth and almost all the way to the back of my throat began to burn and be very numb.

The pain, that affected my teeth increased in frequency and duration of the pain almost weekly. There was no way I could live with this tooth pain. The TN was definitely getting worse. I would have to stop working again. I’d retired early due to the TN and migraines. I’m so grateful to have found Aimovig for the migraines. Down from 12 to two a month along with botox injections. Too bad I can’t enjoy finally being pain free from the migraines because of the pain and discomfort from the TN.

I decided to take the chance of some relief, no matter how much or how little, with the MVD surgery. I had the surgery this past March. I am now not quite 8 months post surgery.

The tooth pain remains, and now includes several more teeth, both upper and lower. Although I was told that the MVD would not make the TN worse, I believe it has worsened on its own, irrespective of the surgery. I have additional issues due to the surgery itself, double vision in the left eye, hyperacusis in my left ear (increased sensitivity to certain sound frequencies and volume with poor tolerance to environmental sounds) necessitating a special ear plug (musician’s plug) to reduce the noise so I can tolerate being public places like restaurants or shopping malls, etc., and a paralyzed vocal cord (left), none of which appear to be resolving very much if at all. These issues were not present prior to the surgery. I am trying to be patient and wait the 12-15 months I was told it would take to know the full results of the surgery. Meanwhile, the side effects of the surgery are adding to my discomfort and further diminished my quality of life. they do not appear to be resolving. Time will tell.

Sometimes I get fairly down. And, I often question if I have the right to complain as although my pain can sometimes be fairly intense at times, it seems to be mild to moderate on the average all the time. But, I’m not lying on the floor or the bed unable to get up or eat or talk (usually, although it’s more tolerable to not talk), so maybe it’s not that bad.

I hear that this is silly thinking, but nevertheless, it’s where my mind goes. It’s soooo distracting! Am I sorry I had the surgery? Sometimes. But I had to do something, I couldn’t let it continue to get worse and not try anything. So, I can’t say I do or don’t recommend surgery. MVD has been the main recommendation by 5 out 6 neurosurgeons in several states. I"m not so upset if it didn’t work. I’m upset with the side effects of the surgery, and hope each day that they get better. Not everyone has these side effects. It could be just me and how my body dealt with the surgery. Apparently, there was much work that needed to be done with a lot of moving around of different nerves, so there’s that.

Having said all that, I still work part time, go out to eat, sometimes-with my ear plug or i sit with my ear to a wall if possible, play with my granddaughter, and try very hard to not be a victim.

I love being asleep and hate waking up. I try to trick myself into not being awake by just laying still in bed, for just a minute longer, to not feel the pain or discomfort. I am doing further research. I can’t do nothing. This is why I want to see what more I can do for not just myself, but for all TN sufferers. One day at a time for me…
Thank you for your time reading this. This site has been so helpful for me.
Take care

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Dear Camia
You are in my prayers tonight.
bringing public awareness to our condition(TN) may help to bring sympathy, funding, and hopefully some breakthroughs.

My city of 1/2 a million had its main building lighted up teal for Oct. 7th, International TN Awareness Day. I am happy about this! However, mine was the only TN shirt I saw. Most people have no idea what it is.

I do not begrudge any of the other disorders the awareness they have achieved in the public eye, but I wish that we could do the same thing.

Hello Kudasai
Thank you for your reply. I can understand your disappointment in being the only one wearing a TN t-shirt. I went onto the rare disorders site and found only Ben from Ben’s Friends on there. No one else listed on there was involved at all with trigeminal neuralgia. I spent a lot of time with some friends today, who are only just coming to realize that I actually struggle with tn. I explained it to them, and tried to describe how it feels. They asked me to send them my story from this site, and they will pass that on to their friends and acquaintances to create more awareness. So, one small step toward creating more awareness of TN out there in the world.

I didn’t get the sense that you begrudge anyone their rare disorder, just wish there was more awareness of TN.

Which county lit up teal? I saw a photo of several countries with teal lights. I lived in Australia for 7 years and was excited to see lights there. The county where I live has no teal lights or tn support groups. Maybe in time…
Take care

Dear Camia
Thank you for your kind reply.
My city is on the Gulf Coast of the United States. Mobile, AL.
I am fortunate in that I am a music teacher here at school. Lots of people saw me in my shirt, and a few asked about it.
Little by little, step by step, perhaps we can make progress. Maybe this disorder will teach me patience.
There is a famous actor here in the states, Tony Shaloub, who did an “infomercial” on TN. Check it out on line.
Wishing you pain-free days!

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I’ll definitely look at that! I’m in southern California. I’ll definitely have a t-shirt made!!
I hope you have a pain-free day.

Dear Carnia,
I am so sorry to hear of your pain. Mine is constant too. I have had many procedures, none of which helped. The last one was a balloon compression rizotomy which has left me in more pain than what I was previously experiencing. I have it on the right sie of my face and it covers pretty much the whole side including the inside of my mouth, teeth, pallet and lips. My eye is always in pain and nothing really takes the pain away.

In the middle of July I started to see double in my right eye. They have diagnosed me with Palsy of the Sixth Cranial Nerve, which I was told by the neuro-ophthalmologist, would resolve itself in two months. Needless to say I sit here today with my eye in the same condition that it presented itself, I have to keep my bad eye covered in order to function at all, I will see another doctor on the 4th of November but I don’t think there are a whole lot of options. Although I have sight in both eyes, the bad eye is stuck in the middle and moving toward my nose resulting in two distinct images. I have no depth perception and can no longer drive or climb stairs, etc. I have attributed my problem to the Balloon Rizotomy, however the doctors want to discount that opinion. I was taken with how you acquired double vision after a procedure. It lends creditably to how I feel. (My ear is troubled similar to yours, only It feels plugged.)

Thank you for sharing,

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Hi Nancy
It is concerning that we have both developed issues post surgery. according to the ophthalmologist, my eye doesn’t move far enough to the left. Makes waiting to make a right turn a challenge and I feel as though I have to become an owl to swivel my head around enough to see clearly. Being from near L.A. I absolutely have to drive, so I’m hoping the glasses help…if not, I’ve never heard of a neuro-ophthalmologist, so I might try to find one here. thank you for that info. I was trying to figure out which nerve controls the eye. Good to know it’s the 6th. By the time we are done learning so much about neuro anatomy, we’ll be experts. My ear felt plugged for a few weeks after surgery and then came the pain and discomfort, intermittent at first and then any time I talked and there was any kind of loud noise or a certain pitch. Now, it’s just with others. My significant other has a soft speaking voice, but can have a loud, sharp laugh that never bothered me before.
Now, he has to sit on my right side or in front of me…crazy! I’m glad you are seeing someone else. I also had two bouts of severe vertigo, one sent me to the hospital, and both were mercifully helped with a wonderful vestibular/balance physical therapist.
I hope your pain lessens or better yet, disappears.

Hamboy! Nice to see you back. And thanks for the great tip.