Hello all,
I am hoping that you wonderful people may be able to give me some advice. I have bilateral TN1 and TN2. I had MVD on my right side with one of the leading experts on January 25, 2013. Like many others, I had immediate relief upon waking up , but gradually, the pain has returned(. I have been taking 2400 mg of Gabapentin per day all along, due the TN on my left side). Right now, I have constant burning and boring in my scalp on the right, and it is as bad as before surgey at times. I also have been experiencing some milder shocks if I touch my face. I am at a bit of a loss as to what to do. I am at the maximum dosage of Gabapentin, and had tried adding Lyrica in the but it did not help at all.At my last appointment before surgery, my neurologist felt I had run out of medication options.
I have read that the nerve takes up to a year to heal. I was planning on having surgery on my left side this year, but now am really unsure. I am going to call my surgeon, but since you all are experts too, I would love to hear some feedback.
Thanks
Christine
Hi Christine,
I am sorry to learn that you are still experiencing pain post MVD, I have only recently had my MVD and would definitely recommend that you speak ASAP to your surgeon as my NS did tell me what type of pain I would experience afterwards as he has seen the Trigeminal Nerve first hand and was able to compare it to other MVD performed previously and their success.
Hope pain does subside.
Aw Christine, I’m so sorry to hear you’re having such high levels of pain post mvd. I understand how discouraging that is, but I agree with Quickie, call your NS’s office and speak with them ASAP. Perhaps there’s still compression going on? Did you ever get a copy of your surgical report? He/she might have better insight…you’re right it can take up to a year for full recovery from mvd. I’ve read many different people’s mvd recovery stories and they are ALL different.
My neurosurgeon told me prior to mvd that if this didn’t work ( I have bilateral too) my next step would be opiate therapy. He strongly discouraged any nerve destructive procedures.
Thinking of you and wishing you relief soon. Positive thoughts, Mimi xx
Thanks, ladies. I will call my surgeon ASAP, I was just hopeful that this pain would be gone by now. I do remember my surgeon saying if this didn’t work there were other options, such as motor cortex stimulation . I agree with you Mimi, I would not have any nerve damaging procedures.
I so appreciate your thoughts, and thanks for taking the time to share them!
Christine
Ask if any tricyclic antidepressant would help you with the pain when you call??? I know Effexor helps me with burning pain, but it's not for everyone. Just a thought. Goood luck to you!!! Min
Hi Christine,
Sorry for your pain returning after MVD. We are only folks suffering with same tyle of pain. I personally am no medical expert. I too habe gone thru the same as you only my surfery was on the left side. It was great for 6 months or so but the pain has returned full throtle. I also recently diagnosed with right sided TN in Jan 2013. I also having difficulty proceeding ahead on that side until left side is addressed. I wish I had an answer for you but still searching for one myself. Good Luck to you if you uncover anything let me know. All the best!
Joanne
Well I put a call in to my NS office.I have sent an email to his secretary describing what is going on, now waiting to hear back. Thanks to all that responded!