Thank you Doodle bug7!

There is so much that is still unknown about Trigeminal Neuralgia. One thing that is known is that it is a progressive affliction…it gets worse over the years. The research use to say that they believe a MVD surgery was likely to be more successful if done within the first 7 years of being diagnosed; however at the TNA conference held in Dearborn, MI, in 2008, new research was presented that changed that 7 years to 3 years.

My MVD was 15 days ago in Pittsburgh after having typical TN with shocks for three years. Since surgery, I have not had any shocks and have been off all TN meds since 5 days following surgery. Today, as I’m still resting & recovering from the MVD surgery I have to ask myself….Why did I wait 3 years to have this surgery???? Nobody wants to ever have to have this surgery…I think deep down inside we continue to hope that the TN will go away, but it’s very highly likely that it’s not going anywhere. I believe my biggest hurdle was that I was terrified to have this done. Instead I continued on Trileptal that kept going up and up in dosage until for the last six months before surgery, I was a walking zombie…I could no longer drive…I had no quality of life left at 52 years young!!

My hope is that somebody else might learn from all my mistakes with TN. Yes, MVD surgery is rough, but each day following MVD surgery will get better. It’s a small bump in your life that you have to cross in order to get that artery or blood vessel padded away from your Trigeminal Nerve. In the end, it will be so worth it if it is successful.

Each person is different with how TN is affecting their life. In my opinion, I don’t think there has been enough research done yet on how long it takes the Trigeminal Nerve to become PERMANENTLY damaged. It is also thought that over time that typical TN becomes atypical TN. Time can count with this affliction.

Study the research, Educate yourself…you are your best advocate when it comes to making important medical decisions. My neurologist wanted me to have Gamma Knife done as my first procedure…thank goodness my knowledge I had gained made me cancel the surgery at the very last moment. I knew from day one of being diagnosed with TN that my journey would lead me to having MVD surgery. It’s the only nondestructive procedure.

My biggest regret is that I put off having MVD surgery for 3 years. I read so much over the three years on MVD surgery, and it seems to be what everybody thinks after it’s over. I wasted a couple of years of my life that I can never get back, and it is looking like I am one lucky girl that I didn’t have any permanent damage done to the nerve. My advice to anybody with typical TN…get the MVD surgery done as soon as you can with a top notch neurosurgeon. I didn’t listen to the people that said they wish they would have done it years earlier although 3 years is a lot sooner than a lot of people that I have read. I’ve progressed enough in my recovery now that I can finally say that “if” I would have to go through another MVD, I would do it if the chances were high that it could fix me again.

Hoping today finds my TN family as pain free as possible,
Judy