Does anyone know anyone who had facial pain in the trigeminal distribution but never had TN1 with the classic lightning bolt short burst of pain symptoms? THat is someone who has had TN2 pains exclusively. And has this person had an MVD? And was it successful? I am curious to know what the rate of success of these MVDs are because there is a serious divide in opinion between the surgeons I have seen regarding this issue.
I have never had the classic lightning bolt short burst of pain symptoms. I have TN2. No MVD. Mine is a constant pain around the ear area, headache starts first, the the whole roof of my mouth hurts, and the pushing pain in my face. Right now I have just torn my rotor cuff and am on Vicoden and that is taking care of the face pain too. I'm also on another med for the inflammation in my shoulder and arm.
I have atypical TN and have had an MRI which shows compression on the nerve, will be having MVD on Tuesday, will post again after Op re: success!
Quickie, Great! It should be a success because you have had TN1 pains before, and you have MRI imaging of a compression. I wish you a “Quickie” recovery! Please post at some point as someone just like you will visit the site to look for stories like yours through surgery. Take care.
Hi Don
I can't really answer your quetion - sorry, but it does strike me as interesting,
I do have Atypical with the TN jolts of pain also (2002)....I am not a canidate for surgery, although I wish I was.
I am assuming your surgeon has seen a compressed nerve on you from an MRI scan.
From the ones I have known to have had the MVD procedure they were very sucessful in removing the pressure off the nerve..and releiving the TN pain along with it.
It seems there are several going through ths procedure currently...I hope they get the relief they need and do well after.
Hopefully you will get some good information from some that have had the MVD, that is the best source!
Always so many questions with TN...such a confusing disorder and a frustrating one! I can imagine your confusion if you don't even get the same conclusion from 2 surgeons.
Not to mention painful ;(
Good luck with it all Don...
I had an MVD last year and it did not provide any relief.
Oh, that is really too bad Don. Sorry to hear that it didn't work for you.
Having these pains....I wish there was a magic button we could all push to turn it all off.
I would be very curious in your case about the sucess of MVD.
Regards,
beachwalkmm
Don said:
I had an MVD last year and it did not provide any relief.
Hi Don,
I have pain ALL over the the trigeminal distribution - mostly V2, V3 - plus back of scalp and often, when the whole thing gets really blaring, it runs down into the neck, along my arm, under my scapula, and across some ribs, but I’ve never had the classic lightening bolt in the face. When it is really screaming, I will often feel like an echo of it on the other side too in my ear and scalp. I can’t lay my head down or touch anything. I go to sleep with sleeping pills.
It started with a piercing/ pulsing pain that woke me up in the middle of the night. These attacks came at fairly regular intervals for about 24 hours. Two days later a smashing headache that lasted for about two days. Nothing for six weeks then it came back with sinus and nostril pain. I was diagnosed with sinus/ear infection and had more than five rounds of antibiotics until I refused to take more. Each time it would feel better for a few days and then rebound even worse.
So the pain kept morphing to include: mastoid area, tip of eyebrow, volleys of electrical pain that felt like it was deep within my head, scalp, teeth, gums, throat, tongue, lips, but never the classic lightening bolts in the face. I now have hemi-facial spasms too.
I do have a vascular loop but the big question still remains: why all this crazy pain. Some people are good after MVD but others not. Something like 17% of people have compression or vessel contact and never get TN.
If I am a good candidate for the MVD I will go for it but I am not holding out that it will be a cure- all. There is still too much unknown. Glial cell research and chronic pain might hold some answers.
The meds don’t do a whole lot for me. This TN 2 or Mixed TN or Tic Convulsive and GPN or whatever the hell it is could swallow up my whole life. I resist that with all my power. Which I have to admit, some days, is no power at all.
I hope the future hold some promise for you Don. sounds like its been a long time with a lot of setbacks.
May you find peace and happiness in some measure.
Bellalarke