I have a surgery date set up, which is December 2, 2015. I'm scared to death right now but mostly I just try not to think about it. The main thing I'm extremely worried about is that I don't want to get worse after the surgery. I don't know if I could handle it.
I chose to have the surgery because of the 65% success rate that Dr. Casey quoted in his video as well as what I found from the University of Pittsburgh which stated that "patients who respond favorably to anticonvulsant medication may still benefit from an operation". I have been taking Gabapentin nearly exclusively for 4 years until recently and it has been the main drug that kept me from losing my mind.
One of the last reasons that I decided to have the surgery is because I recently had an MRI of the brain which showed compression of an artery. The radiologist stated that the artery abutted the nerve but the neurosurgeon said that it was "digging in to" the nerve.
I know that everybody is different and not all outcomes are the same, especially considering the skill of each surgeon, however, it would be comforting to know that other people who are similar to me have enjoyed some success or didn't have any increase in pain.
I also want to have surgery in the hopes that my family and friends can get the old me back. And is it wrong that I want to have it done because I want to show the family members close to me who may not truly believe me regarding my pain and my bad days that yes, I AM suffering. I'm suffering so much that I am willing to get a hole put in my head to fix it.
I had the surgery nearly 2yrs ago, and also had an artery compressing the nerve. Just thought I would try to reassure you, after my surgery my pain disappeared. Only now do I very rarely get a slight tingly feeling on my cheek when I am stressed but it doesn't even hurt.
Also my advice after the surgery is to find a physiotherapist to help rehabilitate you. (with exercise and your neck muscles)
Hope everything goes well
Thanks so much. I really do appreciate it. My doctor seems certain that it will benefit me but that just isn't enough for me. I've waited for a while but once I saw Dr. Casey's video I felt good about moving ahead with it and giving it a shot. Now, with a person with has actually had the surgery say they had a successful outcome makes me optimistic.
Thank you very much and here's to hoping you remain pain free.
I see that your MVD surgery date is fast approaching. Good for you for making that decision. It is certainly a leap of faith but one that you know offers you a very good chance of getting back the "old you" as you said. I had a successful MVD just over two years ago and Dr. Casey was my neurosurgeon. I had two artery compressions. I haven't had any pain since the surgery. I published my story a few weeks ago if you would like to read it. It might help you in these weeks leading up to your big day. It's a very personal story where I share my experience from day one, all the doctors I saw, the meds, and how I made my MVD decision. Best wishes to you and please keep us updated after your surgery.
Trigeminal Neuralgia: How I Survived the Worst Pain Ever
Matt,of course you are going to be terrified …who wouldn’t be…entirely normal ! Just hang in there,surround yourself with positive people,read success stories on here and leave the unsuccessful ones alone,do breathing exercises etc and accept your fear of the operation.Good on you for deciding to go ahead !All the best and let us know how you get on.
Hope that your surgery goes well, best wishes!
All the best for today Matt! I’m sure we are all with you on here…
My hope is that you have had successful surgery and are doing great. Can you share how it has gone for you - I am contemplating surgery with Dr. Casey for my TN2 and any info you can share would be much appreciated. Like you I am desperately trying to find a way to get my life back…
Hey DD. I’m sorry to report that my surgery was unsuccessful. My surgeon found 3 arteries that were compressing a nerve and he decompressed each. He was sure that I was going to have a positive outcome. My wife and my parents were so relieved and they all were crying tears of joy. I can remember the look of disappointment on their faces when I told them that the pain was still there. It’s been just over a year and it remains the same.
Since the surgery, I have increased my dosage of Tegretol to 600mg per day along with 60mg of Cymbalta and 2400mg of Gabapentin. It keeps the pain at bay for the most part. Don’t get me wrong, I still feel it all the time but typically the pain is like background music. You know it’s there, you hear it, but you can’t really make out the words. When it is bad, I’ve got the lead singer of a death metal group screaming right in my ear drum.
Don’t be discouraged by my lack of results though. The surgery was a breeze and I mean that. I was in the hospital for 3 nights and I enjoyed it!! I’m not joking. I was able to watch football all day, I had people tending to me, and the drugs kept me 100% pain free. If I thought it would might work for me I would get right back on that table and let the doctor do their thing!!
My doctor is telling me that I should just increase my Tegretol for now and try to wait as long as I can before having another surgical procedure done. He said the next step would be motor cortex stimulation. I’ve watched that surgery and it looks pretty brutal.
I’m only 38 years old. I keep hoping for some medical advancement that will help people like us. Until then, we just gotta keep plugging along.