What I would ask... ( My MVD story.)

What I would ask is that you please remember that MVD surgery is major surgery. From the point of the neurosurgeon they will often talk about it like it is nothing as compared to other surgerys they do, MVD surgery is pretty simple. Fact is things can go wrong. What was suppose to be 3 days in the hospital turned into 16 days in the hospital, 6 in ICU with a lumbar drain in my back, due to a CSF leak that drained out my left nostril. In 13 years of practicing medicine my neurosurgeon told me he had never seen TN caused by what caused mine. I had bone pressing against the nerve. What was suppose to be a 3 hour surgery took 7 1/2 hours. Due to the huge amount of drilling when the CSF leak started it went inward and came out my nose. I am often not sure what to say about my MVD surgery as I know my case is rare and extreme. My goal is to never discourage people from MVD surgery as it is the best treatment for TN1, but all I would ask is that you have that discussion with your surgeon about what can happen. Most will say in rare cases you can have a stroke, ( some one posts here that did have a stroke during her MVD surgery.) CSF leaks can happen though the leak will most often come out of the incision, it is rare to have it come out the nose. I have talked to people that ended up with chemical meningitis due to reactions from the gas used to put them to sleep. I know of a couple of people that had infections cross the blood brain barrier and ended up spending weeks on PICC lines and antibotics.

Was my case extreme? Yes. Are the other situations I mentioned common? No. Thing is not knowing of the rare problem that was causing my TN, it caught everyone off guard, and it was not a comfortable feeling for me nor my medical team. Honestly, it was a very difficult 16 days for everyone. Going into surgery thinking I was going home 3 days later and then not going home until 16 days later was really unnerving! This taught me to ask the tough questions when it comes to what can go wrong common complications and rare. It also taught me that often surgeons will not know what they are dealing with until they are staring it straight in the face! I would not wish what I went through on anyone else. That is why I would ask that you ask the tough questions about MVD surgery.

Hugs <3

Sarah

Thanks Sarah! Appreciate you sharing your story, and reminding everyone considering mvd to do the research and ask the right questions.
The risks are still risks regardless of low percentages, or how most neurosurgeons do minimize the surgery in their comparisons to other Neuro Surgeries they perform.

And I agree with you, I do believe that in most cases they really don’t know what’s what until they go in …
Anyway, thanks again for writing this up!
Hope you are well…Mimi xx

I too had post Mvd cfs leaks, my five days in the hospital turned into 16 days in the hospital, all but two of them were spent in the neuro trauma unit. Then home on bed/couch rest for another five days. Would I do it again YES! With absolutely no hesitation!

I can not have anymore open skull TN surgery like MVD surgery. To do you could kill me due to the birth defect that caused the problem to begin with. Also I was told once you have a CSF leak out the nose, they will not only not stop, but get worse. So, no more MVD surgery for me.

Thank you for posting this most important information. I hope you are feeling much better.