Has anyone experienced new facial sensations that started at least several months after MVD surgery? I have just recently started feeling crawly, tingly sensations on the upper part of my cheek/under my eye. It is not painful at this point - just odd and annoying. Over the last few weeks, these intermittent sensations have become more frequent. I did not have pain or unusual sensations on my face before the surgery.
I was pain free for 1 week following MVD surgery. I am back on various meds to treat the original pain. I am still hopeful that I am going to get better. I am wondering if these new symptoms are just part of the recovery from surgery. I know it takes time to heal.
My TN centers on trigger points in my gum area. Like so many of us, my journey for a solution began in the dentist's office in 2006. ..
Help us out here, please: if you didn't have pain before MVD, then why did you have one?
The creepy-crawly feeling in your face is often called "parasthesia". It is a fairly common side effect of MVD and other surgical interventions in Trigeminal Neuralgia. It might pass. And it might not. There's really no telling in advance. Likewise, some meds can produce parasthesia as a side effect. Which meds are you on and in what doses?
Hi Red, Thank you for the reply. My post must have been a little confusing. My pain began in 2006 a month following oral surgery (apioectomy following infected tooth). Infected bone was removed too. Trigger point is in gum where tooth was removed. Subsequently had two root canals in 2nd tooth and two more oral surgeries. Finally had the 2nd tooth removed as I thought that would relieve my pain. Dentist finally told me I had to see a neurologist. I had flare-ups about 4x a year but over time, flare-ups became more frequent, more intense, and longer in duration. Sometimes just eating or talking would start a flare. After trying out roughly 10 different medications, found that Lamictal worked best for me. Unfortunately, about every three months, dose had to be increased. Finally, at a dosage of 450 mg, I began having double vision. In addition, I still had pain, becoming more severe and frequent than ever. Saw neurosurgeon in April 2011. He recommended MVD. The diagnosis over time went from atypical facial Pain, to TNII, to TN1. Had MVD surgery June 2011. He decompressed the nerve in several places. I was pain free for 1 week.
I am currently taking Effexor and Baclufen. For breakthrough severe pain, I use opoids as a last resort.
One last side note. My uncle suffered from TN. He passed away at 88 last year. He had many procedures that didn't work but never got to try the MVD surgery. My doctors do not think there is any family connection, though.
There is fragmentary data to suggest that TN may be somewhat more common in families than in the general population. But as you indicate, the links are weak.
You are fortunate that somebody recognized "Atypical Facial Pain" for what it is: an imprecise label that really has no legitimacy as a medical entity. Given the precipitating events of your onset of pain, possibly the most accurate diagnostic label would be iatrogenic trigeminal neuropathy. I note that the medications you are on are consistent with that diagnosis. Many neurosurgeons would have reservations about using MVD against pain that emerged in the manner yours did.
I suspect that the next step in medication for you if this pain continues to develop and strengthen may be Methadone. Such a medication is worth discussing with your doctor as it is frequently effective against neuropathic pain such as you have.
Hi! I had MVD surgery in October 2009 and experienced similar sensations for a few months after the procedure. They did eventually go away, but like you, I am back on medication for my TN. While it is a very low dose of Tegretol, my pain is nothing like it was before my surgery.
There is an issue after MVD surgery that usually occurs about one year after the procedure. For some reason, the TN pain will return and then go away again. When I first posted on this site, that is the pain I was dealing with. When I saw my surgeon for my one year follow-up, he had just returned from a TN conference and said that they just cannot figure out why it happens. Even in completely successful MVD surgeries (no pain, no medication) this reoccurence often happens.
Hi Stefanie, Although total pain relief would be ideal, it is good that your pain is not as bad as before the surgery. I hadn't heard about the one year phenomenon you describe. I am at 5 months post mvd and am still trying to get a handle on the pain I still have. I am hoping that these new sensations are just part of the overall healing process from the surgery, though. Time will tell.
Thank you for your feedback. It makes sense. I have only been on this medication combo for less than a month. Hopefully things will improve.
Richard A. "Red" Lawhern said:
There is fragmentary data to suggest that TN may be somewhat more common in families than in the general population. But as you indicate, the links are weak.
You are fortunate that somebody recognized "Atypical Facial Pain" for what it is: an imprecise label that really has no legitimacy as a medical entity. Given the precipitating events of your onset of pain, possibly the most accurate diagnostic label would be iatrogenic trigeminal neuropathy. I note that the medications you are on are consistent with that diagnosis. Many neurosurgeons would have reservations about using MVD against pain that emerged in the manner yours did.
I suspect that the next step in medication for you if this pain continues to develop and strengthen may be Methadone. Such a medication is worth discussing with your doctor as it is frequently effective against neuropathic pain such as you have.
Gabapentin 600mg 4 to 5 times a day, also use .5 to 1mg clonazepam only for sleep
Richard A. “Red” Lawhern said:
Help us out here, please: if you didn’t have pain before MVD, then why did you have one?
The creepy-crawly feeling in your face is often called “parasthesia”. It is a fairly common side effect of MVD and other surgical interventions in Trigeminal Neuralgia. It might pass. And it might not. There’s really no telling in advance. Likewise, some meds can produce parasthesia as a side effect. Which meds are you on and in what doses?
You're on a fairly high dose of gabapentin, Cindy. I'd be inclined to guess that the creepy-crawly sensation is an ongoing breakthrough symptom of the underlying problem that MVD was intended to relieve. It might indeed pass with time, but the course of development (so far as I know) is impossible to predict in advance.
Sorry I can't be more definite. As crazy making as that might seem, it's common in this class of disorders for patients not to be able to see in advance what they'll be dealing with in a month or a year downstream.
Thanks for replying. I have had this since surgery dating back to 10/10 not pain just creepy/crawly. Crazy as it also sounds is that the sensation is worse in the afternoons after usually 2. Somedays are controlled well with the med dose and others not. I kinda think that some of it is stress related. I am a nurse of 30 years and hate having to take so much. Before I had MVD pain was unbearable without 3600mg of gabapentin and tegretal. Tegretal made may liver enzymes elevate and truly that was what was relieving the pain. Please pass on any information about the creepy/crawly stuff if you have updates etc. I am going to research it myself. It is as if the pads placed during MVD caused the nerve to produce a different kind of stimulus. I do believe that when I leave off taking clonazepam the next day my face tingles more.