hiya, I've recently seen a surgeon who wants to perform mvd on me, in the coming months. I'm only 16, and from my questions and research, it sounds like a big opp, so i'm really nervous. could anyone who has been through mvd, tell me their personal experience's, what happened to them before and after in hospital etc, any help would be amazing! thanks
My first question is your surgeon one that has done hundreds of these!
It is really cranial operation, not brain surgery!
Most who have no complications…which are very low…
Will be in ICU 1 night and regular room second night. Then you go home and sleep for two weeks.
. Not sure about UK.
It is high success rate for many years of remission… ,!
Many Stories on here have had complications, or it didn’t work well…
Most with better MVD, are off here and living life!
You are still in the five year window… Which is good
You are young
You have TN 1
These are in your favor.
I am two years no pain, no meds.
Let us know how you come out!
Hi Jess, go have a look at the link I’ve posted above, it has lots of great information and personal stories shared about MVDs.
If you have any specific questions, just message me!
(( hugs )) Mimi
Take a look at my posts. My situation is a little different then yours, as I have GN.
If you have any questions or want more information feel free to contact me.
Hi Jess, I’m a fellow welsh lady, from Swansea, I
We’ve been living in Australia this last 29 years, we’ll talk more I’m sure, looking forward to hearing from you, did you have your MRI?
Hope your well, hugs Anne x
Hi Jess - I’m one of the success stories. I was first diagnosed with TN1 about ten years ago (at age 53). It was unbearable and medications had such horrible side effects. I was fortunate to have had it diagnosed rather quickly and was offered other treatment options. I chose the less invasive glycerol injection which relieved my pain almost immediately, however it came back five years later. By then we had relocated but again I was fortunate to have found an excellent surgeon. I had MVD about four years ago and am happy to say that I am pain free. The only complication was very minor numbing in my lower jaw, but even that has subsided over the years. Your situation is quite a bit different, however. You’re only 16! I’m sure you realize that this is major surgery. One person commented that it was not brain surgery. My surgeon did tell me it was brain surgery. It’s probably just a question of semantics. The way that it was explained to me was that they move the cerebellum out of the way to get to the nerve and artery area. That’s about as close to the brain as I’d want them to get. :). I’m sure that this has been recommended to you already, but I highly recommend the book Striking Back - the Trigeminal Neuralgia and Face Pain Handbook. In summary, I believe the MOST important thing is to find an excellent surgeon!