Hi Everyone - I’m new here and was hoping to get some advice/opinions. I had MVD 4 years ago this February. Immediately after surgery I was pain-free, went off the Tegretol the day before surgery and have not had a single hint that it might come back until recently. In July this year I got a minor head cold. Along with it came a couple of minor twitches in my face, on the same side as before surgery. But they were only bad enough for me to think “uh, oh.” When the cold was gone, I never felt another twitch. This weekend I got a nasty cold, this time it is really bad, tons of sinus congestion. The twitches are back, but this time they are worse. Today I’m getting them frequently, along my nose and under my eye on the same side. They are not of the same intensity that they were pre-surgery, but definitley sending me into a complete state of panic that I’m headed back to pain again. I can’t help but think that it’s not coincidental that the only two times I’ve expereinced these feelings is while I’m ill with sinus pressure. But since it’s much worse this time around, I’m fearful that maybe the two are not related. Has anyone had any experience with this? I had my surgery with Dr. Shahinian at the Skull Base Institute and was told that most likely I would never feel pain again, as I had two vessels cotorized and one padded with teflon…
Hey Jordan,
Not that it will help you but, if nothing else I can assure you, you are not alone. I am 5 months post MVD and have tingling and little tiny "pains" in my eye tooth...similar to before MVD but much less intense. I had not really had any pain for the first 4 months after surgery. I am fearful it will get worse. Trying to stay as positive and stress free as posibble. I will let you know if I find any explaination or information on this alarming reoccuance.
Good luck!
Hi Erin,
Thanks for sharing. I know that MVD is not a guaranteed cure, but I was told that the success rate is 95% and I truly didn't expect to ever have a reoccurrance. I'm not sure what your situation is, but I had two vessels cotorized and one separated from the nerve with a teflon pad. I'm wondering if maybe the pad had moved, because the TN seems to be back :( I don't think it is sinus-related at this point. I felt awful yesterday and started on neurontin last night. I have a consult with a new neurologist in December. I hope that what you are feeling is just nerve damage or something totally unrelated! Anyway, try to stay positive and with any luck it will pass.
Welcome " new here"
Our Tn experience is so varied. Different meds work for different people.So many different stories. Hang in here. Lots of advice and helpfulness here The U,S, med system is deplorable but not unconquerable One day, I was bummed out.Started tapping on the computer and found this site. It cranked me up so that my next visit to the doctor, the doctor learned from me about the variations of the TN experience. It made him a better doctor.
SFBill
Hi Jordan,
I was just wondering if your pain ever came back. I am alot like you I had my MVD 4 1/2 years ago and after about 2 years I would start have twitches but nothing that I could not handle. But a few weeks ago I started having pain again. It still isn't as bad as it was before but it is definitely pain. My family doctor put me back on Neurontin until I can see a Neurologist. The doctor who did my surgery has moved to another state.
But when my pain came back it is in the back side of my head near the opening that they went through. But the trigger spots are alot of the same . My biggest trigger spot before is my lower corner of my lip and it still is also. I was just wondering what happened with you. I am hoping you are fine because this is a horrible disease and nobody should ever have to go through this.
Hi Rita,
My pain came back in full force totally out of the blue almost 4 years after MVD. It came on with a sinus infection and when I saw a neurologist, she said that it was common for TN patients who have had MVD to get pain with swollen sinuses because the nerve is so sensitive. I went on 900mg of Neurontin and after about two weeks, the pain was totally gone. I wasn't sure if it was the drugs or it was just going away as the infection died out. I had an MRI and they think they can see another compression on the nerve on the other side of the nerve from where the teflon is placed, but it seems odd to me because unless a blood vessel that was cotorized during surgery grew back (can that even happen??), there's nothing left around the nerve. I sent the neuro the images of my pre-MVD MRIs for comparison. I go back to see the neuro on Feb. 15th, so I'm hoping to hear what they have to say about my results then. I sort of thought that the pain had gone away on it's own until two days ago when I started having very mild twitches in the same place again. I have had only 1 per day, and they don't hurt, but they scare me. My fear is that there actually might be another compression causing it.
In response to how your pain came back, I too had the same trigger points (one big one is also the corner of my lip) as before. No pain for me around the site of the surgery. I also can't contact my surgeon, he is in LA and insurance ended up not covering 90% of the surgery, and I owe them several thousand dollars which I can't pay, so I highly doubt they want to hear from me again! There are a few surgeons in Boston where I live, so I may try to get a consult with one of them to get a second opinion.
I'm so sorry that you are going through this again. I'm sure that you, like me, thought that MVD was the cure, and the pain coming back was a total shock. Hang in there, I hope the Neurontin is helping!
Rita Kennison Reese said:
Hi Jordan,
I was just wondering if your pain ever came back. I am alot like you I had my MVD 4 1/2 years ago and after about 2 years I would start have twitches but nothing that I could not handle. But a few weeks ago I started having pain again. It still isn't as bad as it was before but it is definitely pain. My family doctor put me back on Neurontin until I can see a Neurologist. The doctor who did my surgery has moved to another state.
But when my pain came back it is in the back side of my head near the opening that they went through. But the trigger spots are alot of the same . My biggest trigger spot before is my lower corner of my lip and it still is also. I was just wondering what happened with you. I am hoping you are fine because this is a horrible disease and nobody should ever have to go through this.
Jordan,
Thanks for getting back to me . I would love to keep in touch and hear how things work out with you. I am also seeing a Neurologist on Feb. 15th. Hang in there yourself.
JordanC said:
Hi Rita,
My pain came back in full force totally out of the blue almost 4 years after MVD. It came on with a sinus infection and when I saw a neurologist, she said that it was common for TN patients who have had MVD to get pain with swollen sinuses because the nerve is so sensitive. I went on 900mg of Neurontin and after about two weeks, the pain was totally gone. I wasn't sure if it was the drugs or it was just going away as the infection died out. I had an MRI and they think they can see another compression on the nerve on the other side of the nerve from where the teflon is placed, but it seems odd to me because unless a blood vessel that was cotorized during surgery grew back (can that even happen??), there's nothing left around the nerve. I sent the neuro the images of my pre-MVD MRIs for comparison. I go back to see the neuro on Feb. 15th, so I'm hoping to hear what they have to say about my results then. I sort of thought that the pain had gone away on it's own until two days ago when I started having very mild twitches in the same place again. I have had only 1 per day, and they don't hurt, but they scare me. My fear is that there actually might be another compression causing it.
In response to how your pain came back, I too had the same trigger points (one big one is also the corner of my lip) as before. No pain for me around the site of the surgery. I also can't contact my surgeon, he is in LA and insurance ended up not covering 90% of the surgery, and I owe them several thousand dollars which I can't pay, so I highly doubt they want to hear from me again! There are a few surgeons in Boston where I live, so I may try to get a consult with one of them to get a second opinion.
I'm so sorry that you are going through this again. I'm sure that you, like me, thought that MVD was the cure, and the pain coming back was a total shock. Hang in there, I hope the Neurontin is helping!
Rita Kennison Reese said:Hi Jordan,
I was just wondering if your pain ever came back. I am alot like you I had my MVD 4 1/2 years ago and after about 2 years I would start have twitches but nothing that I could not handle. But a few weeks ago I started having pain again. It still isn't as bad as it was before but it is definitely pain. My family doctor put me back on Neurontin until I can see a Neurologist. The doctor who did my surgery has moved to another state.
But when my pain came back it is in the back side of my head near the opening that they went through. But the trigger spots are alot of the same . My biggest trigger spot before is my lower corner of my lip and it still is also. I was just wondering what happened with you. I am hoping you are fine because this is a horrible disease and nobody should ever have to go through this.
Rita - I'd love to stay in touch and hear what your neuro has to say since we seem to have similar stories. Would you be interested in swapping personal email addresses? I'm not on this site very often and communicating by email is easier. If not, no big deal, just thought I'd ask!
Rita Kennison Reese said:
Jordan,
Thanks for getting back to me . I would love to keep in touch and hear how things work out with you. I am also seeing a Neurologist on Feb. 15th. Hang in there yourself.
JordanC said:Hi Rita,
My pain came back in full force totally out of the blue almost 4 years after MVD. It came on with a sinus infection and when I saw a neurologist, she said that it was common for TN patients who have had MVD to get pain with swollen sinuses because the nerve is so sensitive. I went on 900mg of Neurontin and after about two weeks, the pain was totally gone. I wasn't sure if it was the drugs or it was just going away as the infection died out. I had an MRI and they think they can see another compression on the nerve on the other side of the nerve from where the teflon is placed, but it seems odd to me because unless a blood vessel that was cotorized during surgery grew back (can that even happen??), there's nothing left around the nerve. I sent the neuro the images of my pre-MVD MRIs for comparison. I go back to see the neuro on Feb. 15th, so I'm hoping to hear what they have to say about my results then. I sort of thought that the pain had gone away on it's own until two days ago when I started having very mild twitches in the same place again. I have had only 1 per day, and they don't hurt, but they scare me. My fear is that there actually might be another compression causing it.
In response to how your pain came back, I too had the same trigger points (one big one is also the corner of my lip) as before. No pain for me around the site of the surgery. I also can't contact my surgeon, he is in LA and insurance ended up not covering 90% of the surgery, and I owe them several thousand dollars which I can't pay, so I highly doubt they want to hear from me again! There are a few surgeons in Boston where I live, so I may try to get a consult with one of them to get a second opinion.
I'm so sorry that you are going through this again. I'm sure that you, like me, thought that MVD was the cure, and the pain coming back was a total shock. Hang in there, I hope the Neurontin is helping!
Rita Kennison Reese said:Hi Jordan,
I was just wondering if your pain ever came back. I am alot like you I had my MVD 4 1/2 years ago and after about 2 years I would start have twitches but nothing that I could not handle. But a few weeks ago I started having pain again. It still isn't as bad as it was before but it is definitely pain. My family doctor put me back on Neurontin until I can see a Neurologist. The doctor who did my surgery has moved to another state.
But when my pain came back it is in the back side of my head near the opening that they went through. But the trigger spots are alot of the same . My biggest trigger spot before is my lower corner of my lip and it still is also. I was just wondering what happened with you. I am hoping you are fine because this is a horrible disease and nobody should ever have to go through this.