MVD Success

Hello fellow TNers, I had MVD on Tuesday, July 12th, 2011 at UIC Hospital. I woke up 100% pain free, they found the artery that was causing compression. Nothing had showed on my MRI/CT Scans so I felt like I was taking a huge gamble. Six days after surgery I am off pain medications, I can move around, I feel so good, almost back to normal! I am still groggy and following doctor's orders of resting and doing very very little.

If anyone has any questions about the process, feel free to contact me. I was in CONSTANT, every day, every minute pain for almost four years. I had shocks and burning that cycled. I considered suicide a few times. I was maxed out on many medications, I lost my job and a lot of friends, my boyfriend as well. TN ruined a lot of parts of my life but I have a newfound hope now that I am out of pain. I am very excited to wean off the medications and put this chapter of my life behind me.

This website was the first time I ever felt hope and I hope that someone as terrified and frustrated and as in pain as I was nearly four years ago reads this and knows that there IS an answer, there is always an answer. Stay strong everyone.

Congratulations…Wonderful news…I like the pill box in front of your nose in the photos. Pain free. Wow. you must be the happiest person in the world tonight. How about another song, Ms Guitar Girl.

Hi Kara, So happy for you. Your life will soon be back to normal. I had the MVD in May 2009 and have been pain free since waking up from surgery. I will have to say that the fear of the pain coming back will be there for awhile. I don't think about it alot now, but the first year after surgery, it was on my mind alot. Now I just feel blessed. I read alot of stories on these sights, and it saddens me to see people that don't get pain relief after having the MVD. So congrats again and just enjoy being pain free.

Connie

I am so happy for your success. This is the kind of encouragment that so many need to hear. There is hope. Do not stop looking until you find a doctor that will listen and truly try all options.

Thanks so much for your good news, Kara. It's nice to hear the success stories. I hope you'll stick around the site to share your experience with others who are considering MVD. It is often a difficult decision for people to make.

Regards and best,

Red

I hope it works for you! on a long term basis my lasted 7 months and came back worse .......then I had Gamma knife it lasted almost 2 years now I am in the worse pain ever.............soryy don't mean to be Debbie downer...........but

TN is horrible and seriously I hope it works but from what I can see .............its a band aid for awhile

At a site like Living With TN, we tend to see a higher proportion of people who have severe problems following surgery, compared to results in a more general or randomly selected population. In published papers from multiple medical teams, MVD is successful in eliminating or greatly reducing pain for about 90-95% of Type I (Typical) TN patients who go through the procedure. The rate of serious side effects (including Anesthesia Dolorousa, loss of tearing reflex, impaired hearing, or CNS leak) is about 15%, even in a highly experienced surgical team. However, in this population, about 70% of all patients who receive MVD are pain-free or minimally managed by meds for periods of at least 10 to 12 years.

With Type II (Atypical) TN, the results aren't as good. Some neurosurgeons I've talked with have suggested that the "odds" of success are more like 50/50 when MVD is the first invasive procedure used. Even there, though, there are signs of changes in the thinking of the neurosurgical professionals. A paper referenced on the TN Association Knowledge Base indicates success statistics as high for ATN as for TN in a mixed group of about 100 patients operated upon using procedures to minimize handling or manipulation of the nerve.

For further information on medical and surgical treatments for TN, see the "Face Pain Info" on our top level page menus, anywhere on Living with TN.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst

I am scheduled for August 3rd and am very nervous. Is there anything you think I need to know in order to prepare?

I think Kara's advice is very good, Brandy. To it would add only that it may be a good idea to ask your doctor to summarize for you, the expectations that are reasonable concerning your pain levels and the sources of pain you may experience on waking from the procedure and in the days following. There is some variability between patients on this, of course. But it helps to vanquish fear, if you know what is happening to you and why.

There is a mantra (chant, used in Yoga meditations) that I've often shared with patients, for possible use in their meditations before and after surgery. This is derived and expanded from a mantra mentioned in one of Frank Herbert's "Dune" series novels. Use this as a centering thought, if it seems appropriate:

"I shall not fear, for fear is the little Death which denieth all understanding. Instead, I shall face my fear, allowing it to pass over and through me... to disappear into its native nothingness."

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, Living With TN