So yesterday I met for the first time with a neurosurgeon to discuss whether or not I would be a candidate for MVD in his opinion.
I should say going in we weren’t sure as I have bilateral TN.
My TN starts on right side classic sx with triggers, then after high dose meds, my breakthrough pain presents on left side but more constant, boring pain,with icepick in ear, teeth and lower gums. Atypical I guess.
NS was very well informed of TN, and appreciated that I was as well.
He had a very good bedside manner and took almost an hour with my husband and I answering questions. He was also vey honest. I got a good vibe.
After taking medical history as well as TN history we discussed surgical options. I informed him I was only interested in the possibility of MVD.
So we skipped the other options and went right to what he thought…
He said although he’s normally conservative, and my pain presentation and bilateral aspect would normally make him say no.
He said because I have true TN based on my response to Tegretol initially, he WOULD do mvd surgery on my LEFT side.
( I should say I piped in and said with “no disrespect once you have TN, you KNOW you have it whether you respond to Tegretol or not” but I also had to concur that I did respond immediately to Tegretol both times my TN presented. I also realize this is a diagnostic tool for the doctors…
In any event, he said although he would perform the surgery, there were NO guarantees.
He actually very honestly explained the whole MRI thing to me here in Canada. Because I flat out said " how come no one will do a fiesta style MRI or one with angiography etc. it makes no sense to me, if there is a way to see clearer if there is an artery or blood vessel lying on the nerve?“
His response was " because it is very hard even with fiesta mris ( and he pulled up a fiesta MRI of a woman with a tumor and showed us the trigeminal nerve as well as an artery right near it.) I have to say it is really difficult to see actual compression unless it is very very pronounced.
The radiologists consider mris
"normal” because veins and arteries are present by the trigeminal nerve.
He showed us my MRI , my Trigeminal nerve as well as an artery right by it, hard to see if it touched the nerve or if there were any veins involved.
It just isn’t clear enough to see.
Still makes me wonder how and what other doctors see of those of you who have been told your compression was visible!?
Or this NS is not familiar with MRI technology? I don’t know, hard to believe as he is supposedly the best in my province.
Whatever!
In any event, he was very knowledgeable about the surgery has done many but never on someone with bilateral tn. He explained the procedure in depth as well as all the risks etc
I was just pleased to walk away with some HOPE, hope that I could have the surgery if I choose and meds for life isn’t my only option.
No guarantees, but at least I have options.
I will now email a 2nd neurosurgeon in Winnipeg for a second opinion. Which this NS reccomended.
So, although there are no guarantees, at least I have options…which is huge for me as I really started feeling like " this is it ".
Who knows…