Has anyone with both type 1 and type 2 tn had a mvd surgery and have been pain free or does it only help type 1?
what makes you not a candidate for mvd??????
I am not sure which type I had, my pain was on my right side of the face. My pain was triggered by wind, brushing teeth, putting makeup on talking, eating, etc.
The pain I felt was electrical shock like pain, which lasted about 30 seconds to a minute.
Some times it lasted longer with a tingly numb feeling.
I just had mvd surgery 4 1/2 weeks ago, my meds were cut in half, I feel absolutely no pain at all. The next time I see the doctor they will cut my meds again. It apparently what you have to do is go off slowly while the nerve heals. I am hoping that
I will feel no pain at all, being off all meds. But as of right now I feel like a new
Person.
After sugery, in my case, I have a 1/4 of my skull that is numb,
But the doctors tell me it could take up to a year for that to a year to go away. It
Also, in my case, I woke up dizzy, and when I look to the left I saw double
Vision. The double vision took over 2 weeks to slowly go away. But I am still somewhat
Dizzy. Not a spinning dizzy, but a feeling like I had one too many drinks. I was told to go to a special visual therapy. I am told this will go away.
Good luck to you.
Ayre,
I have bilateral TN.
I just recently had mvd on my left side which was predominantly Type 2 TN, as it worsened I had Type 1 TN electric shocks as well.
( my right side is Type 1 controlled by meds)
My Neurosurgeon agreed to perform mvd based on my Neuros notes, medical history, but mainly because I initially responded well to Tegretol and my left side became resistant to all meds alone and in combination.
Day before surgery he made sure I knew that there were no guarantees, he had never seen a presentation of TN like mine. He has performed over 700 MVDs and is well versed in TN. In his opinion, he didn’t think he would find anything, but reassured me that if there was a compression he would find it. We both agreed it was worth it for me to have the mvd just to be sure, as my pain levels were out of control, toxic levels of meds and my only other option in his opinion would be opiates. He strongly advised no destructive procedures.
If nothing was found at least I could say we tried, and check the box. I was very well informed and made the decision to have the mvd with no guarantees…
In the end he found 3 blood vessels, 2 on top and 1 large one underneath my nerve all compressing the nerve. ( none of these were seen on basic mris)
I am going into my 6th week post op and have NO TN pain.
Each of us is unique in our TN presentation but what I encourage everyone to do is research, be informed, advocate for yourself and find a medical professional to listen and support you.
My neurologist didn’t even think a neurosurgeon would meet with me as my Uncontrolled side was TN 2. BUT he referred me to a neurosurgeon anyway…
Sorry this has gotten so long…didn’t mean to ramble lol,
(( hugs )) Mimi
I had both TN and ATN on the left side. I was told the chances of MVD helping my ATN were a lot lower than for TN. I had my MVD done 6 months ago. The neurosurgeon found 3 cranial nerves (one of them the Trigeminal Nerve) compressed by 2 arteries. Fortunately, my ATN is completely gone. My TN is almost completely gone. The little bit of pain I get every now and then is so little that I am fine without any medication. (I am off of Tegretol.) I hear this isn't the case for everyone, but I guess it does happen since it happened to me.
Hope this helps.
I had TN and ATN, mostly ATN, and I had and MVD in Oct 2012, I am 90% pain free. I still have some boring ear pain but that is due to another auto-immune disorder I have which I will be starting treatment for soon. I was told once I start that treatment the ear pain will be gone as well. Currently I take 10mg of Celexia (anti-depressant) per day and that keeps the pain away, but if I skip a dose it comes back..its no where near as severe as it was.
I had two compressions and I also had a blood vessel that was strangling my Cartoid artery and that was removed as well, and now I no longer have migraines, so I got a bonus out of the surgery.
If I had to do it again I would in a heartbeat, but you need to see someone who specializes in MVD;s for ATN like I did.
Wendy "crashgirl"
I had both types and woke up totally pain-free after my MVD.
Thanks for the replies!!!!!