I hope someone sees this this time… it has been 10 months since failed MVD. Was never able to ween off meds as the pains never stopped. Now I’m wondering. 10 months post op should it still hurt to touch surgery area? And should I feel what feels like two large screws protruding and just under skin? Any advice would be appreciated. Neurologist doesn’t want to do an MRI until 1 year post op. I voiced my concerns once. And that’s what he said. I have not seen surgeon since 1 month post op.
Hi Nanooo
I am hoping someone comes on and tells you how it was for them.I am so sorry for your pain and stupid surgery and now thinking that something is wrong.
I hope you have the MRI scheduled already.
It might be a good idea to touch base with the surgeon to let him or her know about the ongoing issues.Even messages on their answering machine until they call you back.
I hate dealing with doctors,but what choice have we?
I had my surgery back in January 2009 and I do remember my head still hurting where the surgery was I was able to get off my medication for six weeks and then the pain came back full force I also lost my hearing in my right ear from the surgery which 1% can lose their hearing and I got lucky and lost my hearing I also had a balance problem called Vistatibular disorder. This was partly because of my hearing loss and partly because they touched something in my brain that caused my balance problem I had to do therapy for 3 to 4 months to finally be halfway decent I still get that problem also where I had my surgery I’m not able to sleep on my right side because that causes my facial pain it is very sensitive in that area and I have a little dip in my skull so it is pretty normal to still have pain over there and be very sensitive. Maybe somebody did not have the problems that I have had hopefully they respond to you and let you know what their experience was I hope you get better you get better I’m not sure if the pain will go away but I’ll pray that it does
Hi , I also had failed M V D surgery. 1 year 4 months ago the nerve was deeply compressed on 3 sides . I woke up from surgery with same pain plus pain from surgery . No relief at all. Surgeon kept telling me it’s to early to say if it will get better, well it hasn’t. The pain from surgery area just started feeling better a couple months ago and I had bad pressure after surgery and that’s beginning to feel better too. So I hope iwith time the surgery area will heal for you a little more and feel better too! As far as the TN pain it’s all about pain management for me now . I won’t have any more surgery as that was worst experience I have ever had. At this time I get Botox injections and nerve blocks I take gabapentin baclofen and morphine . I hope you feel better soon!! I realized surgeons are bad at admitting that there surgery has faile and I got ver little sympathy or help from mine. So I deal with my neurologist at this point and he’s been helpful to me as much as he can be . Hang in there maybe talk to your primary or your neuorolagist if you can’t get help from neurosurgeon. Good luck stay strong.
Nanooo: Sorry to hear of your problems. All patients are, of course, different and react that way. I had my MVD years ago (1995) and awoke from anesthesia totally pain free. I had two compressions from the cerebellar artery. I had only the expected pain from the surgery which was minor and only took a week or two to fully retreat… I was home in 3 days, off medications before I left the hospital and back to work in 10 days. However, my pain returned in 4 years and I was back on meds until around 2004-2005 when I suddenly went into remission. I am still there with only a few breakthoughs in those years. I take 5000mcg of Vitamin B-12, sublingually, daily which, I believe, is helping to keep me in remission. Although not completely proven V B-12 is though to help rebuild myelin. Also. at a TN Conference I asked the neurosurgeon’s conference why my pain returned after 4 years? both Drs. Casey and the late Janetta said if the pain returns soon after surgery it is probably a missed compression while after time (like mine) it is probably a new compression. The srews you feel might be real. Some surgeons use a titanium plate to cover the hole in the skull and screw are used to fasten that to the skull. I agree with Ellen to contact your surgeon and good luck.
My surgery was 3 years ago and my scar line and even above still hurts significantly when I touch or rub it. However, to feel screws is not right. you must go to another neurosurgeon and be examined. And you miggt need a medical malpractice attorney depending on tge appointment outcome. Do not wait. Best wishes.
Thanks for your kind reply. I spoke to my neuro Friday and he said it’s time to call the surgeon so I did. Waiting on a call back I guess. But now I’ll be out of state for two weeks. Hopefully not thinking about any of it besides the meds lol.
Hey there. Thank you for your reply. I too have a dip in my skull. And that’s where the screws protrude from and then something above it that moves. Ugh so weird and disturbing. I’m sorry your pain too did not go away. It’s just such a discouraging feeling after braving a surgery like that. I am hoping to have answers soon. As for my pain ever going away I thank you for the prayers. I really truly do.
Yea… neuro surgeon seriously couldn’t admit it was a failed surgery and wouldn’t even accept me saying it at all. I learned just Friday his amazing np whom I trusted so much and who stayed with me during surgery left him. I knew she would I could see it in her eyes. Seems we both have the same amount of faith in him… my neurologist has been great for years with quite a few scary experiences and other neurological problems I’ve had in the past and I trust him with my life. He told me to call surgeon so we shall see what happens I guess. Thank you for your reply…
PS I so sorry you are suffering still… it’s such an unfair disorder or whatever the heck it is. It’s awful… and I’m truly sorry. You are strong as heck. Remember it.
Hello there. Thank you for your reply. Is it possible to get a new compression? I thought I was just born that way? I wonder. I have contacted surgeon. Waiting to hear back now. I hope I go into remission!
I wasn’t taken off my medication immediately. But I wonder, I had a fall in the shower yes at 33 years old 2 weeks post op. My lower back just locked up and my knees buckled. I remember protecting my head but I went down hard. I’ve never been scanned since surgery and did notify them of the fall and went to urgent care for my back mostly cuz I couldn’t even walk. I just wonder so much if that made the surgery not work some how. Grr.
Hi Nanoo
I hope you have a nice two weeks away.I know what you mean about the meds.I
have stashes everywhere-so if I run out here I have some there.Pharmacist’s
don’t seem to get it when I show up for renewal early.It is not that I used
them all-just stashed like a little squirrel.
Nanooo48: In response to your e-mail to me: Yes, a new compression is always a possibility. Several years ago when I attended the former TNA International Conference, I asked the neurosurgeon’s panel why my TN had come back post MVD of 4 years? Responses from only Drs. Casey and Jannetta (two of the best and, unfortunately, the late Dr. Jannetta and most experienced neurosurgeons) said that if the pain comes back soon after surgery the neurosurgeon missed a compression. If it comes back after years, like mine, it is a new compression. Unfortunately, as we age the brain sags some and the blood vessels move around. Have you had a MRI to look for compressions? The radiologist needs to use a protocol that allows viewing of the area looking for a compression. If one is not found that doesn’t mean there isn’t one. You are very young but TN occurs in many ages including some babies. I kind of doubt that your fall in the shower has anything to do with your return of pain but anything is possible. I wih you good luck in finding relief from this horrible affliction.
I did not know that a radiologist could look for the compression so that leaves me to wonder if my compression did work because I was pain-free for 4 to 6 weeks and then it came back so maybe it moved or it just wasn’t quite in the right spot. I’m in pain always and at a two and then when it gets bad of course he goes up to that ten and beyond so I will check into that with my neurosurgeon and see if that something that can be done for me and maybe I can finally be pain-free after over 10 years of pain and being prodded.
My surgeon still hasn’t called me back and it’s been over a week now smh. Thinking about getting a second opinion but not sure if I should have him actually contact me first. @cadworks50 I’m sorry to hear you are also suffer. Not cool. I didn’t know any of this either. But it seems pointless to even ask my surgeon since he seems to think he is perfect. Grrrr
Update. There is in fact a loose screw in my head and a plate that is buckling. All which is the source of the pain going on. Minor surgery next month to remove loose screw and one of 2 plates. Always trust your GUT.
Not sure there is any conclusive evidence that vascular compression even causes TN, no I’m pretty sure there is none ( willing to stand corrected TJ, though I think it was you who confirmed)
Yet it is still being performed, are they telling the patient this? Are they still telling patients vascular compression is demylinating the trigeminal nerve due to compression, when some 30% of the TN nerve has no mylination.
Even if it was the case, whose asking the why? Surgery isn’t addressing it.
Who is propagating this procedure without the causation set in stone, when medicine in this day and age is supposed to be evidence based. Might be behind the times.
Everyone sold this procedure, bearing in mind it’s invasive nature is sold it as a solution. Transparency/ honesty is needed.
