I’ve had 2 failed nerve blocks for trigeminal neuralgia for the pain behind my right eye what should be the next nerve block my pain doctor should do please someone respond I just want to enjoy life and actually not hate myself again
I’m not sure what you should try next . Could it be possible that it isn’t TN ? It could be one of the other atypical neralgias? I say this because they thought I had occipital neuralgia, I got nerve blocks for it and it did nothing. I was later told I had geniculate neuralgia and that’s why the injection didn’t work . I hope you get some relief soon
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Thanks for atleast trying to awnser my question I appreciate it I think what’s really discouraging about my situation is nobody can diagnose me I don’t think they’ll ever be able to I’m just not as optimistic as I was i don’t think it’s tn because I’ve seen people with tn and my pain isn t sudden it’s chronic it never goes away and nothing triggers it do you know if you can do a nerve block for the optic nerve because that’s what nerve i think it is i don’t have any vision loss just stabbing pain behind my eye that never goes away
Hey, you and I sound like we have a really similar case. There’s nothing physically wrong, every test comes back ‘normal’ but I’ve had pain behind my eyes for 4 years and it’s beyond pain…so I get why you’re where you’re at right now.
I’ve done all the failed nerve blocks, it sucks every damn time.
They did a Lidocaine IV and it helped a bit. But there’s a Ketamine IV they can do too. It’s supposed to reset the central nervous system and lower the pain signals.
But if all else fails there is a surgery where they use a laser to sort of damage a branch of your trigeminal nerve, the V1 branch that feeds the nerve that goes to your eyes so the pain stops.
Nothing else has worked for me so I’m heading there, and I wonder if it would work for you too? It’s called a…trigeminal rhizotomy I think. They do it at St.Paul’s Hospital in Vancouver.
We’re all thinking of you man. Hang in there. Go to the ER for IV pain meds if you need them, I have to sometimes, just get through this intense flare…
Thinking of you
I juuuuuuiist now, after four years of hell got diagnosed. It’s going to happen for you but you have tonight. Demand to be seen and taken care of. don’t give up.
You deserve to have your life back.
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Thanks orchidninja for probably the best and most helpful awnser yet I will look into the trigeminal rhizotomy I will probably bring this up at my next appt with my pain doctor as well I’m so ready for surgery and to finally end this miserable pain thanks for everything
Not Familiar with St Pauls, but both Mayfield and Johns Hopkins do the procedure, it was developed at Johns as I recall. You really want to do your homework on this one. Its mother was alcohol or glycerol injection given to the affected nerve.You can read horror stories all over the forum about that procedure. Local ablation of the peripheral nerve and wide sectioning of the sensory roots have largely been abandoned (nerve blocks) by the academic centers and larger medical centers. but persist in some private pain management clinics. they are fast profitable and largely ineffective I wouldn’t recommend them to anyone. @Justus If you read through the forums you will find many negative experiences with this procedure, which is why no one is jumping up to recommend it BUT they also understand the any port in a storm theory.
The primary complications of Stereotactic Rhizotomy procedure include troublesome sensory loss over the face or the dysesthetic syndrome of anesthesia dolorosa. Anesthesia dolorosa can be disabling, occasionally is worse than the original TN, and is difficult to treat. It happens a lot. Often it resolve in a few months when the nerves grow back.
In a lot of medical center this type treatment is becoming routine for the interventional radiologist for a number of conditions. I believe strongly this is a huge mistake especially with the facial/cranial nerves. At this point the U.S. Department of Health and Human Services has withdrawn the guidelines from the from NGC (never a good thing.) The treatment is temporary at best and crippling at worst. Most insurance companies won’t cover it anymore. It is however used with patients over 70 who can’t tolerate general anesthetic as treatment of last resort.
TJ
Then what treatment do you suggest I try TJ because he’s really the only one who’s suggested anything
I agree with that absolutely and that’s what I mean by ‘I’m headed there’…that’s my last ditch resort. I DO NOT want that surgery. You can trade one hell for another.
Justus, what I suggest is this…always have a plan, like find out what your next step is, we’ll try and help you. Get your doc on board, and plan the next few steps in diagnostics or pain management…so you always have your next few ‘things to try’ lined up.
This is what has kept me going and out of the hopeless zone, which I’ve definitely been in several times.
If I don’t have something coming up ‘next’, or something to try…I go into a full blown panic. I can’t not have a plan of pain management, or diagnostic steps…I’ve only juuuust for the diagnosis for Atypical Trigeminal Neuralgia but they thought it was all kinds of other things.
There’s aaaaaall kinds of amazing nerve blocks they can do way before surgery. Sphenopalatine Nerve Block (SPG), they stick a giant Q-tip up your nose with lidocaine on it, or, they do this with a needle through the side of your face/cheek using an ultrasound. This didn’t work for me, neither did the shnoz Q-tip.
Currently, I’m doing the X-ray guided SPG block next, and have a second lidocaine IV booked.
But, my friend, I did have to fight my way into an amazing pain clinic. Be your best advocate. Do not leave your specialists office without a plan. That’s what leads to that hopeless feeling, for me anyways.
Just for info, if my X-ray SPG block doesn’t work, and the second lidocaine IV doesn’t work they’ll try a ketamine IV.
If that doesn’t work they want to do the surgery, but I’ll need to make that decision. It sounds like relief, but it’s actually a hard one from all the risks.
Have you seen a specialist yet? Sorry, can’t remember…
Yea I’ve seen many specialist from optometrist to opthalmologist optoneruologist and the only 2 neurologist in the tricitities one said it was all in my head the other told me to make friends with it my pain doc has already tried the sphenopalatine block the one up the nose and the one through the check the gasserian ganglion block what’s the nerve block called that u r getting next and let me know if it works because I really need to get rid of this pain
IMO, excellent advice, OrchidNinja. I might even suggest having two plans:
- Plan A: like you have, a progression or list of procedures with the goal of stopping the pain
- Plan B: how you are going to cope with this hellish pain day-to-day
I’ve been looking through old discussions for things that people do to get through today with the pain they have.
Why not start a new discussion like that, Justus, and see what others do?
Seenie from Moderator Support
They said whatnow?? You’ve got to be kidding me…
It just blows my mind when I hear these stories.
I am so sorry that happened to you, that someone actually said that to you. You must deal with your pain very well for them not to see it.
That’s the thing, is we get so good at being in pain that people don’t understand it, or see when we’re ‘off’…
People, even doctors, who’ve never experienced this kind of pain just won’t understand it. They won’t.
Do you get any ‘good’ days? Or has it been a pretty steady buildup for a while?
I’m not only on Topirimate, but also Vimovo which is a huge anti-inflammatory, twice a day, Cymbalta (60mg), and I wear two pain patches which have saaaaaved me. Their each 5 units and depending on my pain I’ll always wear the least amount I can…they each last a week.
Be super careful if you get these meds, I actually taper off them regularly, every 4 mos. so my body doesn’t adapt to them and need more over time…that’s a whole other nightmare you won’t want to deal with. But I could not deal wth this level of pain without pain management, it was getting worse…
Ok, sorry, I keep thinking of more to tell you.
Ok, think that’s it for now 
Hi Justus,
Cool name. Don’t get more of what does not work. You need a really good work up by a TN expert neurologist. Johns Hopkins, Cleveland Clinic, Mayo Clinic in Rochester, MN, Oregon State Medical School, UC at San Francisco, UCLA, Baylor medical in Texas, u of Miami or In England.
Where do you live?
I agree, I’ve had all the junk things, cyber knife, gama knife, pnr, mvd, and I still have a lot of problems. I have lost the feeling in the TN side can not hold the food in my mouth any more, nose runs all the time, I can’t feel it so I don’t know and so it’s very embarrassing to have to be told to wipe your nose, I lost the hearing in my TN side ear and I do get eye pain. So yes by all means get as much input as you can before you do any more. I am called Wheels4legs because I had a machine fall on my and was crushed form the waist down so I have had a lot of input to pain junk so get all the info you can get FIRST. Very vest to you.