Microvascular Decompression Surgery for Trigeminal Neuralgia

I am a 24 year old woman who has been dealing with trigeminal neuralgia since my junior year of college - it's been about 4 years.

Life with Trigeminal Neuralgia has been one of, if not the most, difficult journey of my life. If you have TN, know that you are SO incredibly strong and my heart is with you.

When I experienced my first TN symptom, I was showering in my college dorm & while I was washing my face I felt an odd pain by my cheeck/nose area. It wasn't painful, just weird. I shook it off. Then when I'd eat, I'd notice little tingles/shocks in my teeth area that would happen occasionally. From there, the severity of it progressed. I pretty much self-diagnosed myself since my symptons were so specific & clearly lined up with TN symptoms.

I immediately got in with a neurologist & we started trying EVERYTHING - injections, meds, therapy, acupuncture, cbd oil (I knew this wouldn't help), etc.

I finally found a medication that prevented, or muted/blocked out the pain & it was a real lifesaver. I was taking Oxcarbazepine (which I think is associated with Trileptal) 600mg twice a day. It obviously wasn't a cure, but it provided so much relief. The sucky thing about this meds are the side effects (drowsy, dizzy, vision changes, etc).

After taking this medication on and off for 3 years, my TN progressed and the meds were not helping. I also decided I didn't want to rely on medication any longer.

I finally decided to move forward with Microvascular Decompression surgery. This was a long overdue surgery, but I was always afraid to do it. I always looked up stories on the internet of other TN patients who got the surgery and didn't have a good outcome. I worried about to long term affects and risks, etc.

I had to ask myself "Am I more afraid of continuing to live my life in this unbarring pain or getting the surgery?" The answer was easy. No one should live with TN.

I got my surgery April 28th 2021, so I'm writing this post about 3 weeks post-op.

The surgery itself went well. As soon as I woke up I did expereince two TN shocks and I was immediately discouraged, but it's not uncommon to continue having some pain immediately post-op, so I tried to encourage myself.

Then I was COMPLETELY pain free for 2 full weeks.

I did feel my TN pain come back for two days during my 3rd week (this week), but they it isn't uncommon as that's when swelling can occur. Since Monday, (5 days ago) I've been completely pain free again. Praying it stays this way.

In terms of the recovery of MVD surgery, as well as risks and affects I experienced, I had a bumpy road.

When you wake up, you're probably going to feel like you were hit by 10 buses. That's normal. Both my ears were completely plugged (I could still hear, but I felt like I was underwater), and my ears were ringing.

My left ear unplugged after 2 days and my right ear (where my surgery was) unplugged around week 2 post op.

Expect to have a VERY stiff neck. They have your neck locked in one position for 3-4 hrs during surgery so this is expected. When I say stiff, I mean STIFF. This lasted for 2 weeks for me.

I went home on the day after my surgery & was home for 5 days until I started experiencing worsening and new symptoms.

Unfortunately, I had a CSF leak, which is a risk of the surgery, and it was causing worsening neck pain. I went back to the hospital to be monitored (csf can cause meningitis, but thank God this did not happen).

Fortunately, the CSF leak healed and drained up on its own, so I did not need any further surgery.

So all of this to say, while I am only 3 weeks out of my surgery, I am feeling hopeful it was a success. I am 70% recovered from surgery - no csf fluid, no neck pain, no ear or hearing issues, no numbness and no TN pain yet. I am building my energy and strength up every day little by little.

As I mentioned, I always saw horrible and sad stories from other TN patients who received the MVD surgery, and I was always discouraged.

But, I am blessed and grateful that I decided to take a leap and get the surgery. My recovery was definitely bumpy, but I am still thankful and very hopeful that I will no longer feel the pain of TN, or at least have a good amount of relief from it.

If you have TN, know that you are a warrior! My heart is with you all.

0 likes, 0 replies