Nervous about my upcoming MVD surgery

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I have had TN for about 5 years and Im very familiar with many aspects of TN. I have been on a few different meds and have tried orthospinology upper cervical treatments. I have finally decided to have MVD surgery (suposely an 85-90% success rate). I have researched and read a lot about the experience of others and I am getting nervous. So many people have had complications after the surgery and some with no TN relief. Im told that I would be recovering for about a month (scary in itself). Reading the pre-surgery info provided to me explains all the possible side effects, reading the blogs of other, tells me that there are even more possible effects and that I could be recovering even longer. Im having last minute second thoughts about this. I have searched as much as possible for successful experiences from MVD, but keep finding more people talking about complications. My surgery is scheduled for Monday Aug. 26th. Im having the surgery in Miami, Im also wondering should I have gone to a hospital like John Hopkins or some other hospital that is considered one of the tops in neurosurgery. Im very nervous about memory lost and decreased hearing, this would make it very difficult for me at work when I return. I know nothing is one hundred percent, but I hoping through surgery I can get off the meds so that I wont be so drowsy at work along wih the sustained breaktrough pain. By the way, in 5 years I have never met or heard of a black american male with this condition, which makes me feel really lost with this. Any comments would be appreciated?

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GregB

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Greg,...From someone who had MVD surgery 30 years ago let me tell you it was a life changing decision for me. I dont have statistics but I would assure you that the odds of a successful surgery, waking up pain free with minimal to no side affects are on your side. In my case that is exactly what happened and it certainly can happen for you. I had one side effect, a spinal fluid leak, that caused me to reenter the hospital for 4-5 days after I was home a week but no big deal Other then that I was ready to go back to work in a couple of weeks and feeling absolutely fine with no more meds. Its totally normal to be anxious and nervous its major surgery. The one thing I would strongly urge is to have it done by a neurologist who is experienced with this surgery and makes you feel comfortable. My surgeon sat down with my wife and myself and laid out all the odds but in the end said "I will take good care of you and you will be fine". I went into that surgery as relaxed and confident as could be and I think that helped my recovery. Good luck and keep us posted but make sure you have a competent, experienced surgeon who you have full faith and trust in.

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Hi Greg,
What you are going through ( anxiety, 2nd thoughts) right now pre-surgery is perfectly normal. I was a nervous wreck in the weeks leading up to my MVD.
The truth of the matter is there are absolutely no guarantees.
And that sucks!
It’s a true leap of faith.
I had no choice, because my pain became resistant to meds, and was increasing everyday despite many medications and alternative therapies, MVD was my best chance for some relief.

Ultimately it is extremely important to have a very experienced neurosurgeon who performs many MVDs and is highly knowledgeable of TN. You should consult with more than one to make a firm decision and have a comparison.
If you are not completely sure about your current NS, find another to consult just for a comparison and reassurance of your initial choice.
I know this could delay your actual MVD date, but I think as long as your managing your pain “well” and not in desperation yet, it’s worth it to take the time to find a NS you are absolutely confident in.

I also want to point out that many stories of failed mvds or mvds with complications are easy to find, as these people continue to be part of the online support groups, whereas those that are successful tend to stop coming to the online support groups and move on with their lives… We are lucky here in that we have numerous members who continue to post after having successful procedures.

Also important to note that your expectations going into a procedure for TN need to be as realistic as possible, meaning there is no cure at this time, all the procedures offer us hope of reduction or elimination of pain for variable time periods.

We would all like to have the outcome that Ed below has had!!! And that’s what we should aim and hope for, because it is possible! I’m so grateful that ED recently joined our group to share his story of success! It gives us hope and something to aspire too.

I consider my MVD a success to date, I’m 5 months post op. I’ve reduced my meds from 3-1, I have bilateral TN so staying on the one med is a reality for me. My pain on my MVD side is pretty much non existent but I can’t get lower than 1200mg tegretol CR. before April 9 th my MVD day, my pain was out of control all day everyday.
I had to go on long term disability through work, couldn’t drive, could barely function.
I am now driving short distances, regaining my energy and have NO pain.
Despite not having complete pain reduction on my MVD side, I would do MVD again in a heartbeat.
My quality of life has improved 100%.
I know this pain could return at any moment, but I choose to focus on having a long term relief of pain just like ED! We have to have hope!

I had no complications with surgery. My incision healed well, only 8 staples, my recovery has been way slower than most but that is due to the sedentary lifestyle for the year prior to my surgery due to the horrendous pain and cocktail of high dose meds. I’m slowly regaining energy and am hopeful that I can return to my job at the airline I work for by Xmas.

Thinking of you…feel free to message me if you’d like.
Trust your gut and have hope.
(( hugs ))Mimi

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greg, im hoping all went well with teh surgery. my worked on the tn/pain, but i had a horrible recovery.LOL im better now that it got figured out.