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Living With Facial Pain

MVD, x2

So I went to the VA and saw a wonderful Neurologist who recommended a second MVD surgery. I am just so so on the idea but the pain is driving me nuts. I am a police officer and I cannot take most of the pain meds that others do and continue to work so I am really just living with the pain, and that’s becoming difficult. I was just wondering what you all thought about doing a 2nd MVD. Thanks

What is he seeing that is making him recommend a second MVD? If there is something clearly impinging on a nerve, and he is a good surgeon with great reputation, I would say go for it! If he just wants to open up your head and look around, I would be a lot more hesitant.

Well, is only recommending it, but it is based on the pain I’ve been having for the last year-and-a-half now. After the first operation I was paying free for almost 3 years, but now it’s returned and there’s a little bit different than it used to be. Before it was like being stabbed in the brain with an ice pick but now it’s like somebody is got my head in a vice and just won’t let go on the left side. I have two MRIs coming up in September so the operation is still a ways off, and trust me I don’t just leap into things.

Hi. I have had x2 MVD operations. My neurosurgeon did further extensive work around the nerve the 2nd time and also replaced the teflon padding. Have a fascinating video of the procedure. I’m sure that he wouldn’t reccomend it for you if he didn’t think that there was a good chance of relief

That is typical pain. My Neurosurgeon told me that the stabbing might be lessened but the pain might not. I get that feeling that something is pressing my skull too, but for me it is as if I am wearing an ‘Alice band’ that is constantly putting pressure. What medication are you using?
I have brought my work hours down and it also helps to not get stressed, which in both our jobs, me a teacher and you a police officer, is difficult ti avoid :blush:
An operation may or may not work and personally I do not think it is healthy.
Look at all your options first.
Greetings from the Outback. Riana :koala:

I use lidocaine ointment and an anti-inflammatory medicine. I also have something for breakthrough pain I just can’t remember the name of it at the moment but it’s nothing too strong. I have refused to get back on any kind of anti-seizure meds or narcotic pain medicines because of my job. When I was on gabapentin I almost lost my job. I had to get the doctor to write a letter saying that I could continue working and then I slowly worked myself off the Gabapentin until I wasn’t taking it anymore. I told the doctor after I was completely off and he wasn’t happy but I told him I wasn’t going to take it again. So you can see it has not been easy but as long as I’m working I have to be careful because I carry a gun for a living. Oh and greetings from the state of Texas I would sure love to visit Australia one-day.

First of all, thank you for your service. I have 3 kids who are police officers here in so cal.

Lived in Australia for 7 years, back in the '90s. An amazing experience! recommend it for everyone. I had a gamma knife surgery a year and a half ago, then first MVD in March. Still healing. I have both types 1 and 2. Left side.

I’d suggest waiting for the results of the MRIs before making the decision. Your neuro might be able to see a compression, which might be a more decisive call for the second surgery for you.

I understand your not wanting to take the pain meds for your occupation. I can’t take pain meds due to severe sensitivity to their side effects. So tough to work in pain, though. I did it for twelve years. I’m a speech pathologist, and since the pain and numbness ended up in my nose, lips tongue and teeth, side, positioning my mouth for sounds for the kids to imitate became really tough. I wish you the best of luck, and stay safe out there.
Camia

Loved Australia! My neurosurgeon told me I have a 50% chance of a 50% recovery, no cure, with the MVD. time will tell. Just had surgery mid march. Still recovering. No real change so far. Take care
Camia

Hi Camia, did you have the pain and numbness from the gamma knife or your surgery? I am thinking about having the gamma knife but am afraid of getting anesthesia Delarosa ( not sure of the spelling). I am also thinking about a Botox injection but do not know how to find someone experienced in doing it.
Hope you find a way to ease your pain.
Gizmo

Hi Gizmo

I had some very mild numbness at the side of my face. No pain from the gamma knife. I had the gamma knife at two places on the nerve as the tn irritated the eye and made it itch and tear profusely all the time. The gamma knife helped that and also reduced the severe burning pain at the side of my nose. However it didn’t address the other pain, especially the tooth. My tn seems to move around somewhat.

I was told that gamma knife will not cause more pain. The worse that would happen is that it might not work. Keep in mind, though, that everyone is different and everyone’s experience will also be different. That’s important for me to remember. Hope whatever you choose to do helps you.

Camia

Try Cyberknife, painless treatment, no drilling or puncturing, see my blog on my Mom’s treatment…she is still pain free since 2015…best of luck

Thank you for your service as a police officer. When you describe the pain not being stabbing electric shock type pain but rather constant vice like pressure it immediately raises the possibility it is evolved into TN2 or even atypical facial pain. I went to one of the most renowned surgeons in the world who specializes in MVD and all the other TN procedures. When he asked me to describe my pain and I said “constant pressure like a vice on one side” he politely ended the consultation and said he would not do it. After a lot of research on my own I found overwhelming opinions from many teaching hospitals and practices that said MVD or rhizotimy etc procedures for TN2 or atypical facial pain can make it worse. There are some pain management centers with neurosurgeons who will operate and do the various procedures on atypical facial pain and TN2 patients, but the GREAT majority of opinions I’ve read from UCSF, Columbia, etc all warn against it. Constant non intermittent vice like pressure is not classic TN1.

Wow I never considered that. I just figured maybe it was attacking a different part of the nerve and that’s why the pain was different. I see the doc again in another week or so I’ll talk to her about that and see what she has to say. And I just like to thank everybody for all their responses we’ve all been extremely helpful. This disease that we share in common it’s not very friendly to us it’s nice to know that there are people out there that care when so many others just don’t understand what we’re going through.

I would get a second opinion.

Thank you so much everyone, it is so nice knowing that I have such a close community willing to share and help. I am seeing another doc at the end of the month and will see what he has to say

A functional neurologist believed that my TN was a result of a virus living in the nerve that goes dormant for periods. It seemed to flare up when I was having another illness I was fighting off, so it made sense to me. I followed precisely the regimen created by George. I did this beginning in January this year during a flare up. Several days in, the pain subsided. I have been pain free these past 8 months. This probably would not work if the cause is due to injury to the nerve. Hope this helps somebody else. So thankful to George for all his research and posting it. Here is his thread: Viral infection in the nervous system cause of Trigeminal Neuralgia and MS?