Severed nerve update three years later

General General TN & GPN (Old Site)
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Hello Everyone...It has been a long time since I have visited Living with TN website, about three years...Here is my story.... After discovering I had TN I elected to go the "non invasive route" and had Gamma Knife surgery in an attempt to tame the TN beast. It was worthless and did not help ease pain at all. Then, over a period of a few years, I have three Glycerol surgery injections into the offending nerve area of my brain.....None of the above worked very well.....By 2010 I was desperate and elected to have MVD surgery performed at USC in Los Angeles....After surgery I was pain free for just six months but the TN came roaring back full force...I was so depressed and in so much pain I wanted to die..USC doctors told me they could not help me as the MVD had failed..They suggested that I have electric pulse wires placed into my face. These wires would be connected to some sort of battery that when an attack came I would press a button and it would reduce the pain attack..I am not joking..I declined of course...On November 29th 2012 I had another surgery, this time at Scripps in San Diego..."Cut the Nerve" surgery I call it...They dug into my brain and severed the bad nerve, they also discovered deeper down another damaged nerve and cut that one too. Lots of the damage may have been caused by the Gamma Knife surgery Im told....I had much advice before I decided to have the nerve actually severed, most of it totally negative and against doing such a terrible thing. But pain has no friends and I was desperate and knew I had nothing to lose....

So I had the surgery anyway and guess what ? I have my life back....It has been over THREE YEARS now and I have been totally pain free, with side affects, yes, but they are much easier to live with then TN.

Since surgery my life is in full speed ahead mode and I am pain free baby.....I also now enjoy four new grand kids, a wonderful wife who bought me a brand new diesel pickup truck that I can drive cause I have no more TN attacks...If you have any questions please feel free to ask me as I have traveled a long long TN road.

Vic Maidhof

February 23, 2016

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Hi Vic,

Wow! So great to see a success story! Can I ask what side effects you do have from having the nerve cut? Numbness? I am so glad that you are enjoying your life. It sounds like you went through a lot with TN and pain.

Jane

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Hi Jane, Sorry I have taken three years to answer your post…but I have been busy living my life free of TN. On Nov 28, 2012, after 6 different procedures, gamma knife, glycerol injections, and mvd surgery, the doctors considered me a lost cause. Dr. Alksne of San Diego, a semi retired neuro surgeon, open my skull up and severed the trigeminal nerve…the “old fashioned method”. I have been pain free ever since. Side affects are the left side of my face feels very little as do my mouth and teeth on that side. I only chew on the right. The left side of my face feels much like, when your foot is asleep, tingly and prickly at all times…but I have grown used to it. Dr Alksne gave me my life back. It was the worst case of TN he had ever seen. I am close to 70 years old now and I consider the last several years bonus years added to my life.

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Hi Vic

It is so nice to hear stories like yours. Sooo happy for you.
What the surgery called? I’ll check in to it in Seattle to see who does it.

Si