I was wondering if anyone has had the endoscopic MVD done and what complications arose from this procedure? As it is touted as being much better than normal MVD, I am considering the procedure. However, since it is still invasive, would like to know if anyone has had any of the same complications that can happen with regular MVD, i.e. fluid leakage, recovery time etc. It is also my understanding that if the Dr's find more compressions on more nerves, they end up having to drill a larger hole in the skull and basically, you end up with regular MVD anyway.
I really like the idea of it, as it requires a smaller incision, which means a smaller break in the blood/brain barrier (which is the riskiest part of the surgery). A girl on here was supposed to have one in December, but she hasn't logged on in a while. I wrote her a few days ago to see how it went. I'll post if she responds.
My diagnosis is TN1. After confirmation that medication was going to kill me, the dime became a quarter.
I had no complications from my failed, two weeks to the day MVD.
Most of area around the 7 inch incision is numb to the touch, though the quarter plays like a snare drum.
Plagiarism;) "Finding the humor - what I have experienced with Trigeminal." bob
Bob, so you started out with the endoscopic that turned into regular MVD and it failed to work? What do you mean by 7 in incision? It that the amount they cut to get to the skull area before drilling the quarter size hole in the skull? Did they shave your hair? Also, what did they use to replace the hole in the skull? This surgery just scares the you know what out of me and I am so curious as to everyone's "real" story - not the BS that doctors give me to get me to have the surgery.
D,
I started out with:
http://www.livingwithtn.org/photo/albums/some-documents
Medication failure, pause for about 8 months while doing this, on and off:
http://www.livingwithtn.org/photo/albums/toxic-epidermal-necrolysis
I was "haloed" for radiosurgery until the last minutes-that-seemed-like-hours, when whatever number MRI/CAT was read; and only THEN, the neurosurgeon(s) decided to do an MVD.
Hair-styling results vary-;) Half of my head was shaved, in the 7 pad, 23 staple MVD.
*Adult Content Warning* Above the incision, I have had that large raised mole all of my life!
http://www.livingwithtn.org/photo/2413731:Photo:177?context=user
Since then, the 2 radiosurgeries, and other medication reactions have been a hoot!
My healthcare professionals have done the best they can, considering a unique situation.
Some of my healthcare professionals have learned from me, no BS! bob
Bob, What can I say, At least they did not remove your sense of humour!
Yes, I had this done in May in Seattle Washington.
Unfortunately, not the best health care orginization. They released me less than 24 hours after I ENTERED the operating room. Most people I tell have never heard of such a thing. Make sure you get good care while you are in recovery.
My MVD failed on day 12. I always felt the pain coming back, and I just knew it didn't work. But on day 12 it was there, full force.
The surgery was not bad. The first two days, since I was at home, were pretty awful. After that, the first week was okay. My mom was in town from Indiana and on day 4 we went to the Ocean and walked the beach. You get about 2 hours a day to be up, and the rest for me was laying down and resting.
I went back to work on day 11, just to grade some papers and check on my TA, who had taken over. It was good to be out of the house by that point.
Everyone is different. For some people MVD works miracles. Just not for me.
My head is still sore. And I have migraines when I lean forward, but my dr. thinks that is because my ateries are twisted at the base of my brain stem and pressing on the nerve. (Shouldn' t MVD have fixed that? That's my next question)
If you have any questions please feel free to email me.
I also have a tumblr page where I blogged my recovery and posted photos. "tammielynn"
Take Care,
Tammie
Tammy - don't know what a "tumblr" page is. Can you give me a direct link. I'm not too savvy on web stuff. I failed cell phones 101 too. I'm getting desperate so want to know all I can before I make the decision to do endoscopic procedure. Do you have TN1 or ATN? Thank you so much for your reply.
misstammie said:
Yes, I had this done in May in Seattle Washington.
Unfortunately, not the best health care orginization. They released me less than 24 hours after I ENTERED the operating room. Most people I tell have never heard of such a thing. Make sure you get good care while you are in recovery.
My MVD failed on day 12. I always felt the pain coming back, and I just knew it didn't work. But on day 12 it was there, full force.
The surgery was not bad. The first two days, since I was at home, were pretty awful. After that, the first week was okay. My mom was in town from Indiana and on day 4 we went to the Ocean and walked the beach. You get about 2 hours a day to be up, and the rest for me was laying down and resting.
I went back to work on day 11, just to grade some papers and check on my TA, who had taken over. It was good to be out of the house by that point.
Everyone is different. For some people MVD works miracles. Just not for me.
My head is still sore. And I have migraines when I lean forward, but my dr. thinks that is because my ateries are twisted at the base of my brain stem and pressing on the nerve. (Shouldn' t MVD have fixed that? That's my next question)
If you have any questions please feel free to email me.
I also have a tumblr page where I blogged my recovery and posted photos. "tammielynn"
Take Care,
Tammie
Tammie, what you were saying about twisted arteries is of interest to me, as my arteries are inflamed due to an autoimmune condition and my neuro thinks this may have caused my TN. You have had such a rough ride, I wish you well my friend.
I have ATN and had MVD on 9-9-2010. It was a failed procedure. I had a whole the size of a half dollar drilled into my skull. I have a 6 inch incision which I now have incisional (or surgical) neuralgia in. It swells, turns red, gets hot, and hurts like hell. It will actually stir up my ATN. I also developed Occipital Neuralgia post MVD as well as Central Region Vertigo. I get a numbness and tingly sensation in my left lower jaw (lip too) and cheek at times.
Even after all of these complications developed, I would still do it all again for those 2 glorious pain free monthsI had after surgery. I had no ATN pain just post surgical pain as with any surgery. It subsided, I got off my Tegretol and felt like a new woman.
You have to decide what is best for you and what your are willing to risk for a chance at being pain free.
LaLa
LaLa - Were you scheduled for an endoscopic MVD that changed to the regular MVD? Did they use an endoscope to find all the blood vessels that were touching the nerve? Or was this the procedure where they move the brain aside, put a pad on the offending nerve and that's it? Some surgeons are really touting this endoscopic thing and I don't know if it is worth considering since everyone seems to end up with the large hole and the regular MVD surgery anyway. Thanks for your feedback and I think I will exhaust "all" meds first at this point.
Truthfully I cannot recall if it was supposed to be endoscopic or not. My incision is 4 inches not 6.
Can anyone tell me if Endoscopic is a better procedure than normal mvd?
Im very sorry but I dont understand what bob wrote.... I was totally confused
and I can understand bob being in terrible pain.... My heart goes out to bob
and all those who still suffer after doing a procedure... johnr