I have been misdiagnosed for 10 yrs with TMJ, cluster headaches and other things and finally TN. My MRI shows vessels compressing the 5th cranial nerve and I am scheduled for an MVD in early 2014. MVDs have better results when done before 7 yrs of onset of TN. I am not expecting a complete reversals of symptoms but hope for some improvement. Who else has had TN for a 10 or so yrs? What are your experiences with the various treatments? Thanks for your feedback.
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wow!! It is about time they figured it out!! While I am a new sufferer-- I have read alot about TN and plenty of ppl have success with mvd after many years!! I am sure you will too!! I guess people say just be sure to go to a very experienced surgeon who has done a lot of them!!
I’ve had bilateral TN since 2002… However my TN went into remission for the bulk of those years… 8 years for my right side, 10 years for my left.
My left side, went it came out of remission was refractory ( med resistant) I had an MVD this past April. The MVD didn’t take away all my pain BUT it made it MUCH better!!!
We’re all so different in how we react to different procedures and there are so many factors involved…I had 3 compressions found during MVD.
The improvement from MVD was well worth the procedure for me.
I hope you feel the same and wish you all the best!!
(( hugs )) Mimi
I have had ATN , the burning , boring pain , intermittently , for ten years. It became constant about two years ago, and then the shocks started. I had MVD in January 2013, and while it died take care of the shocks, the boring pain remained. My surgeon felt it was because I had ATN for more than 8 years, and the nerve was so damaged it would not recover. In August of this year, at his suggestion, I had a peripheral nerve stimulator implanted. This has been working very well on my pain.
I wish you well with your surgery!
Christone
I hope
Diagnosed fall of 1995, so all total 18 years. I did not have a problem getting diagnosed, as I was getting my primary care at the Internal Medicine Resident training clinic at one of the country's leading hospitals for TN treatment. What I was not told was that the worsening dental pain I was getting was a sign the TN was getting worse.
It was not until late 2006 did I have the MRI done. It was thought I had a blood vessel compressing the nerve. When I had my first MVD, it was found I had bone, not a vessel compressing the bone.
It took over five years, the following, but I can say I am now pain free for the first time in 18 years.
MVD jan, 2009
RfR Aug 1012
MVD repeat and intenal neurolyis Nov 2013
I still take 600mg of oxcarbazepine, but I find that really easy to deal with.
I’ve had TN for 10 yrs+ but didn’t know.I was dealing with a dx of MS.It was a boring deep pain LU jaw intermittent episodes of 2+ days .I kept thinking it was dental.Finally my new neurologist gave it validity & just in time as it got severe. At this point I’m following less invasive, I’d be curious the MS patients who showed vessel compression & did surgeries with relief.
Christine said:
I have had ATN , the burning , boring pain , intermittently , for ten years. It became constant about two years ago, and then the shocks started. I had MVD in January 2013, and while it died take care of the shocks, the boring pain remained. My surgeon felt it was because I had ATN for more than 8 years, and the nerve was so damaged it would not recover. In August of this year, at his suggestion, I had a peripheral nerve stimulator implanted. This has been working very well on my pain.
I wish you well with your surgery!
Christone
I hope all continues well for you. It gives me hope.
Thanks. That sounds promising. I haven't heard from anyone with a nerve stimulator but I am really glad it works for you.