Initially I had an MVD. Several months later after continuing pain in the trigeminal nerve the neuro surgeons referred me to a neurologist who specializes in post MVD type 2 TN. He has adjusted my medicines and is introducing Lamictal which he says takes time to build up but is often effective with less side effects. I still have a couple of weeks to go until I reach a level that should be impactful. He has also chatted our nerve blocks of he occipital nerves as he senses that there is some damage from the MVD incision. He thinks that some of the pain in he Trigeminal nerve may actually be referred pain from occipital nerves. Depending on the outcome of the diagnostic nerve blocks, we may try a RF ablation of the occipital nerves.
I hope that is helpful.
Keep me posted about your progress.
Jon
bhamilton320 said:
Sure! I was just curious what others are experiencing, or have experienced. I am somewhat new to this type of pain condition, though I have had other coniditions for some years now. I am still trying to get a proper read of my recent MRI regarding the anatomical label that doesn't seem right, but I am sure Mayo will go over it with me when I get there. If you don't mind me asking, what approach(es) has JH taken so far? I am not able ot tolerate most meds, so I'd like to look at any options.
Take Care :)
MDjon said:
Hi Emily,
My type of pain changed following a Rhyzotomy. Added to my electric shock pains was an intense migraine type headache on the left hand side. Following an MVD, the electric pain has eased but am left with residual pain in v2 and the same intense migraine headaches. I am undergoing treatment at Johns Hopkins to try and relieve the symptoms.
OMG! That is exactly what has happened to me! It was ice pick down my head, now it's ice pick in my ear! I live in a windy high dessert now. How much higher can my meds go? Is this the rest of my life? Bummer...
Hello Tia, I have had TN since 2007 and I often have the ice pick in the ear and the needles in the tongue! I feel crazy and don't want to even talk...
I was in first at age 19 for wisdome teeth removal I think that was the start of it all.
recently its been MVD, Hernia, Torwald Cyst, Micodiscectomy, Removal of my zifoid process (sternum bone)
and most recently facet joint injections and now the next proccedure (next Friday that I cant recall the name of)
Really the TN puts it all into perspective. The back pain is bad and uncomfortable, the medical profesionals dont understand when I say yes I rate it a 9 out of ten but thats really no bother.. "what do you mean No Bother???" well the TN is a 27 and 1/2 out of ten so 9 is easy!!! :-)
bhamilton320 said:
SimonL: Wow, a journey for you! I am curious too what the new treatment will be... hhmmm... Have you been in the hospital before for TN? Is that what you meant? Hugs...
Tara Cain- My cheek and eyelid itches much liek your scalp! Drives me bananas! Very rarely my hairline will also itch. Hugs
SimonL said:
I was diagnosed in 2005 with Atypical TN.
The pain was all over the place left right scalp jaw teeth.
But the MRIs showed I could have a MVD and I did in 2006. with some success
In 2010 I had a almost total loss of feeling in half of my toung and my left cheek started to droop.
They diagnosed a Tornwald Cyst that was in my synus and across a branch of the Trigeminal nerve.
Once this was removed I am back to just plain old Typical TN. left side only very predictable.
Very painful VERY TN.
I say this because everyone is different I suppose and quite often as I found the TN can be affected by other issues and this can make it very hard to pin down (aside from the normal difficulties of diagnosis)
My pain specialist did advise me that a "Great Deal" of new work is going into "new Treatment" for TN.
Great I wonder when this "Great Deal" will equal a "New Treatment" that works!!! Yes call me a sceptic.
(I am seeing the pain specailist for my back which I have stuffed as IT just seemed that I had not seen the inside of a hospital nearly enough recently)