It’s a kind of headache. I think when we get one kind of ongoing miserable pain going we can trigger others as well, and one bleeds into the next. And then everything needs to be evaluated and reevaluated. Just a thought. So sorry this has been going on so long for you. Heartbreaking to go through those big surgeries then have pain come back ith a vengeance.
You can’t see the leads on my face at all. The main connection from the battery in my chest is slightly noticeable, but my chest is pretty bony. It just looks like a vein. I can feel the leads in my face if I run my fingers over them.
No one would know I have them.
Thanks for the information. Where did you go to get this? Neurosurgeon?
Christine said:
You can't see the leads on my face at all. The main connection from the battery in my chest is slightly noticeable, but my chest is pretty bony. It just looks like a vein. I can feel the leads in my face if I run my fingers over them. No one would know I have them.
Just now seeing this post. I looked up SUNCT syndrome and don't really fit the symptom profile. I did watch some of the videos, esp. the one with Dr. Ken Casey. I may look into the nerve stimulator, because I have falied all the usual meds. The side effects are so intolerable for me I can never even get to a therapeutic dose. I am currently trying pregabalin once a day, and after 3 weeks I still feel drunk and lose my balance all the time, so I am reluctant to increase to twice a day. I'm 66 and don't want to fall and break my hip. Plus I don't feel steady enough to drive, which makes me housebound again.
Bellalarke said:
Last week I was watching some of the videos from the TNA conference in Oct. they are posted to their support site. What I remember is one expert saying that a second MVD is not really an MVD but is ALWAYS a destructive procedure because they have to pry away the padding that was put there and that is destructive to the nerve. Very interesting when you think about it. So with that in mind I would think a third might be even more destructive.
Since you have runny nose and tearing with that awful eye pain I wonder if you have developed SUNCT. That would require a different treatment. Anyway, maybe worthwhile talking to a headache expert.
Personally I would go for the peripheral stimulator.
My MVD has been good for some of my mouth issues but the incision has played hell with my ON and if it doesn't clear up I'm going to see about the stimulator.
Check out the latest from the TNA conference, you might find some good leads there.
So sorry you have having such bad pain. This has been a long run for you. Keep Heart Bellalarke
To say a 2nd MVD is a destructive operation is a statement that does not always hold true. I had bone compressing the nerve, that was drilled away, no padding of any kind was used. I still went ahead with a 2nd MVD, and nothing was found, and due to the nature of what was found during the first MVD, I was told chances were nothing would be. I then had a internal neurolysis.
If the MVD did not work twice, I question why it would be thought it would work a third time? I am also concerned the more the nerve is moved, the higher the risk of one getting AD. At this point I would encourage one to look at a nerve stimulator.
The TN attacks to my eye were helped by the Internal Neurolyis, but to totally take away the pain would have numbed the eye, and the tear ducts putting my vision in my left eye at great risk. The attacks I get now, while painful do not come nearly as often as before.
Hi Christine & everyone else-
Just rereading some old posts and wondering how you are doing with the PNS. I’ve had some other medical problems since this old post…and so my TN treatment investigation has just been on hold. The pain (especially eye pain) has not gotten any better over all this time. so I am once again wondering about the PNS option. Can you tell me where you went/who did the surgery and was it covered by insurance. I am now 68 and on Medicare with a Kaiser supplemental plan. I live in the Portland, OR area and don’t believe our Kaiser neurosurgeons do this procedure. Thanks.
I had 4 MVDs in less than 3 years (2 in 2012, 1 in 2013, and 1 in 2015). All 4 were by incredible and well known international neurosurgeons and at great hospitals in NC and Pittsburgh). I am now back to square one as to pain, but off of all opiates as I am now a case study at the Brain Institute in FL and with the facial pain research foundation to help find a cure. While my case is extremely complex and severe, I always thought that I would get relief from one of the MVDs, but to no avail. I wish you the best, and if you ever have any questions, please dn hesitate to ask.
Did you get any relief from any of the MVDs? I had relief for almost 9 years after my first, but only about 9 months after the 2nd. What is your TN type? What are you doing now for pain?
Thanks.
How was your internal neurolysis performed…like an MVD? I just went to the neurosurgeon thinking he would recommend a PNS for me, but he says he doesn’t do them for TN, just other facial conditions. One of the options I have is another MVD-like procedure but with internal neurolysis of the nerve by “combing” it. He said there would definitely be numbness after and that scares the heck out of me. Did you have any numbness? Where? How severe and did it resolve. Any info is appreciated.