Numbness after several surgeries & now more pain. Will more surgery stop the pain?
There’s no way to answer that question.
First, what surgeries have you had? How long ago? For what reason? What outcomes were you originally advised could happen both good and bad?
Second, what meds are you on? How long? What meds have failed?
Third, in my opinion, always remember the quote " insanity is doing the same thing over and over again yet expecting a different result."
Hello Azurelle,
Surgeries were unsuccessful MVD (5/2012), successful rhyzotomy (10/2012), then successful radiofrequency (10/2014), the last which caused numbness in my entire left face including the cornea. Trigeminal trophic syndrome has damaged my left nostril.
An MRI in 5/2017 showed blood vessels wrapped around the trigeminal nerve on both sides.
New pain on my left & right side regurned 4/2017 & I began 50mg Lyrica 3/day. That helped a lot. Recently the doc increased one dose to 75mg since I complained of more pain.
That quote was Abe Lincoln I think. It’s a good one. I guess my real question is, if the nerve was destroyed, hence the continued numbness, what is it that is causing this pain & what will more surgery destroy?
I realize these are questions for the neurosurgeon, but maybe there are some people here who’ve had the same experience & can tell me what Was their result.
Thank you for responding.
Oddly enough I like the fact that they can see where something is wrapped around the nerve, at least that gives you ground zero so to speak. I guess at this point the big question is if this is what out looked like prior to the other procedures? Or is this new? Maybe even the way your body healed? I would think that would at least help guide your next steps. If this is how your body healed I would think doing it again would risk it healing the sane way again, if not worse. If it’s new I would think that keeps more options open.
I’m not 100% sure but isn’t it very difficult, if not impossible to destroy an entire nerve? Don’t you always run the risks of sections healing? Hence the failure rate?
The last MRI was called a thin section sub millimeter axial 3-D space T2 image. MRIs from previous years did not show the nerves abutting the blood vessels because they were not thin section images: Skipped right over the T1 & T2 sections. What a waste of money.
I agree with you about the nerves regenerating. Otherwise why would I feel this pain? It just seems wrong that I still have the numbness.
You may have anesthesia dolorosa, if your numbness is on the entire left side. Do you also have a new pain in the trigeminal (facial) area?
Hi Leah: I have been reading about ‘the dreaded AD’ on the Internet. The entire left side of my face is numb. My pain seems to be centered inside my mouth, mainly teeth & roof. Have seen dentist, endodontist, & oral surgeon. All confirm teeth are fine, so… don’t want to face it. 
Mr.CHayes
I have had my 2nd & 3rd Branch of Trigeminal nerve cut at ganglion (root ) the 1st division was spared therefore I have sensation left on the upper eyelid & head. I have complete numbness on rightt side of face where the pain was.
I have no pain at all since operation. I think in your case the surgeon must have crushed the nerves instead of cutting it. In such cases the nerve regenerate after some time & pain returns with annoying AD. Ask the surgeon what type of surgery you have had.
I will def ask. I was pain free after the last surgery 3 years ago. Pain returned last May. This week my doc increased the Lyrica medication to 100mg 3X/day. I think that’s the maximum recommended. Crossing my fingers. I don’t want anymore surgery.
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Are you having bilateral TN?
Right now the pain is on the left side, which had surgery resulting in numbness. I began the Lyrica last May when pain started on the right side. Medication did help the right side.
this is probably a dumb question, but is numbness a bad thing? I mean, certainly it’s not good, but since I put lidocaine on my face to numb it, and of late, I’ve been putting capsazin on it, which stings but at least helps distract from the underlying pain, and I also get botox treatments which also help numb my face, I am not understanding what’s so terrible about facial numbness if it at least decreases the pain.
is it because MVD is supposed to make everything better if it works?
The main problem is that people get pain, that can sometimes be worse than the original pain, along with the numbness. This is called anesthesia dolorosa and is also referred to as deafferentation pain, much like the phantom limb pain patients post-amputation experience. It occurs because the brain still recognizes that part of the body (the face) even though the nerves are no longer intact (as they are damaged or cut in every surgical procedure with the exception of MVD) so this creates mixed signals and is confusing for the brain and the result is often pain along with the numbness.
It’s something you risk with any of the surgical procedures that treat TN.
And to add to the idea of numb…numbing with meds is temporary and topical, it can always be undone. Numb via cutting a nerve can’t be undone and often creates other problems because the nerve us no longer intact.
The max is 600mg. I take 225mg breakfast and supper, and 150mg lunch time, on top of Gabapentin. But that’s another story…
Hi St Paul: The neurosurgeon wants me to take gabapentin in addition to Lyrica. But already I sleep 12 hours a day. How do these drugs affect you?z
Gabapentin can cause drowsiness so start low and slow and maybe at night. It can also make other meds work better so you might end up lowering your lyrics amount but get the same relief.
Hi Azurelle: I saw an ENT doc yesterday in hopes of blaming my facial pain on Silent Sinus Syndrome. The left maxillary sinus is completely blocked, so it is a possibility. Unfortunately the doc is not keen on draining the sinus given my facial numbness & continued pain triggers. He prescribed antibiotics & cortisone, nose spray & nasal irrigation. Return in 6 weeks. 
I value your comments in this group as you seem to have experience in many areas. Do you know any ENT cases in trigeminal neuralgia?
I forgot to thank you for the advice on gabapentin. As soon as the neuro docs get their heads together & agree, I hope to try it.
Funny that I’ve never been offered Gabapentin until now (8 years later) but it seems that for most TN patients, it’s one of the first prescribed medications. Hmm.
I don’t know about sinus infections impacting the TN but it makes sense that it could, when you look at a diagram of the TN branches it could be considered logical that pressure from swollen sinuses impacts it. Your sinuses are actually all through your upper face and forehead. I have heard of sinus infections masquerading as migraine and I’ve heard of upper sinus infections impacting eyes. Since TN is rare I’m a big believer in ruling out all the obvious, more routine, stuff first. I really do hope it’s just an out of control sinus infection and clearing that up will clear up your facial pain! Have you had a CT scan for a sinus cyst?
Thanks for your comments about valuing my comments (I always have an opinion!). I was raised by a very smart woman who taught me to research everything, all the time. You should always find out information for yourself, especially when it’s concerning your own body. No one knows you better than you. Also, if I didn’t have Dyscalculia, a learning disability concerning math comprehension, I would have become a pharm. As it is I can’t do the math required for a pharm degree but I can and have learned all about the medications themselves.