Well now it is 2016...one year and 2 months after my last radiofrequency rhizotomy. On my birthday, October 7th, TN came back... I could not believe it. My birthday??? Eh, well, This is how this disease works... so, initially the neurologist increased my medicine, trileptal, by one additional pill per day. This brought me to 1500 mg per day of trileptal to control TN. And it worked!...for a week and a half ugh!
So, mid-October, the pain started climbing... I saw the neuro-pain specialist in Chalfont and he recommended that we add a second anti-seizure med of Dilantin. However, this time it did not work. In previous recurrences of TN, Dilantin was the secret weapon. This left me feeling quite disappointed to say the least. Each day, the pain seemed to come in more frequent episodes, of increasing intensity.
Finally, after fighting the increasing pain for weeks, I called my neurosurgeon in NYC. He initially thought of recommending Gamma Knife surgery for TN. However, after more consideration, we agreed that another RadioFrequency rhizotomy was the better plan due to the high degree of pain that I am currently experiencing.
So, we scheduled a third RF Rhizotomy (also known as RF) for November 30th, 2016. In the meantime, the severe episodes are coming almost every 10 minutes. Triggers are: moving my tongue, touching my face, chewing, drinking, and talking. On 11/17, I asked the neurosurgeon if there is ANYTHING that I can do until surgery. He recommended that we try Neurontin.
So, today, 11/19, after two days of neurontin, I actually have some improvement! It's a small amount of improvement but just enough to help me feel some hope. I am talking a little more without severe episodes most hours of the day and I am getting some liquids down. I still can't eat, but I will take ANY improvement over none.
When I have my RF surgery on 11/30, I will update the blog with more information for anyone who might be interested in learning about this procedure and about the results.
Love and hope to all TN warriors... more to come!
2 comments:
Hello,
I'm so sorry to hear about your pain. I too suffered from trigeminal neuralgia. I just had the MVD surgery 11/4/16. I was looking at your page for recovery stories. Dr John Lee at Pennsylvania Hospital performed a miracle on my brain. I hope you get the relief you deserve. I too was on trileptal but it eventually lost its effectiveness.
Best,
Maureen
Hi Maureen!
He performed my mvd too! He's incredibly kind and compassionate, and also very skilled.
Prayers to you for recovery and full and permanent healing!
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