My mum had the microvascular decompresson operation 2 days ago - the surgeon said it was a success and that he had found an artery compressing on the nerve and moved it. When my mum woke up however she was in as much pain if not more as before. She also keeps being sick however apparently this is normal.
So many people say they wake up pain free which is what we were hoping for but it hasnt happened - has anyone woken up in a lot of pain and then it has subsided over the next few weeks? Just want to give her some hope that the operaton wasnt in vain.
It can take up to a year to be pain free or near it. Many wake up with pain. I did not, but I had some pain from the three month mark to the five month mark - then gone!
Charly, I can understand your worry. Some people do wake up pain free and that always baffles the experts as nerves should in fact take time to settle down after some trauma (MVD). However others are different as Kimberly says. Everybody has their own MVD story and the end result for your mother is still unknown and we hope a good one. It's still very early days. keep faith all may be well and all the best.
Hi Charlie, I had the surgery on the 8th of August, a week ago today, and had all kinds of pains from wanting to varf due to anestesia to feeling like my head was going to explode eveytime I ryied to open one eye. It was so bad I kept a towel over my eyes and my eyes closed until the next morning when the Dr. asistant came to see me at 4 am. Making this story short, the Dr. had told me he was going to take me off the medication right away, but the next day, when I was able to see what they were giving me for pain, I noticed a Trileptal pill in my hand and I told the nurse right then, what the Dr. had said, but she insisted I take it, so I did. I knew something was wrong, because the headache was moving up and down my skull and it felt just like it was the nerve shooting pain inside. That night I insisted the night nurse call my Neuro. to confirm with the him that I was NOT and did NOT want to take it. He came back and told me ok, the Neurosurgeon, said to stop it. Went home the next day. Eversince then, my headache was a normal headache, not moving up and down and I PRAISE GOD, no TN pain whatsoever!!!! Of course headache, no appetite, sleeples ect. is all I'm getting right now. I am so glad I went ahead with the surgery.
I had the MVD surgery done in 2012 and woke up in the same pain I had when I went in for surgery. The answer was to keep me "high" on enough drugs (Percocet and Valium) and telling me that everything went well. After the pain meds and Valium ended reality checked back in and the procedure DID NOT have the desired outcome. In other words, it didn't work. It is only 90% effective and I fell into the 10% I guess. It was at one of my many ER visits that a Dr said he has seen patients post op to MVD to know that it is no 100% and for the 10% it is worse. I've had several strokes, developed a seizure disorder which caused me to lose my license for a year because I lost consciousness, and basically I'm disabled now on SSD. Every Dr. I see agrees that I made the right decision though. Just didn't work. I have been seen by several neurosurgeons at this point and am waiting on getting in to see a specialist at Jefferson University Hospital (Philadelphia, PA) to see if they will take the case and go back in. I am ready and willing to undergo the procedure again because I have a very POOR quality of life right now. I'm 49 and not ready to stay suffering for the next 40 (may God grant) years. BTW, I have developed TN on the left side of my head now (was on the right and that is the side that I had the surgery on). I am seen by a pain Dr monthly for narcotic pain relief. Oh, I forgot to mention that when the catheter was in my back after surgery it tore into my spine causing me pain in my legs. Just another gift of this disease, lol. All things being equal I would still have the original procedure done but probably would have waited a little longer for a more experienced surgeon to have taken the case. I went with whoever was available the fastest because I couldn't take the pain anymore. It started with the "zaps" here and there, then went to more often until it settled into all the time. Reading my "operative report" it does read that the offending blood vessels were lifted and the felt was put in place so the problem was found. The surgery just didn't fix it.
Moral of the story...if your mum can hold on take your time and search for the right surgeon and ask specific questions, especially how many of these procedures have they done of these. It is not a common procedure so the numbers aren't going to be large but I would want more than 10 knowing what I know now.
Hope you mum is in the 90%!!! and hope this helps.
Hi! My mom just had her MVD 10 days ago and she is in the same boat as your mum. Just wondering if she is feeling any better and if the pain has gone away?
I had it in December it made it worse now its in both sides of my face found a new neurologist and he told me there’s no cure for it and the doctors just want to tell you that
It can only be managed by medicine and relaxation he also told me its an autoimmune disease which I have researched it a lot and I’ve never found any of that information online or from other doctors what makes it so bad is I have allergic reactions to the medicines they make me feel horrible
I had MVD surgery in 2010. I am so glad I did. My surgeon had me to slowly come off of the carabamazpine , the generic to tegretol, because you do not want to stop taking a medication, such as for this instantly. Also, he said it usually takes some time for the nerve to ill from the irritation of the blood vessel rubbing against it. I never completely stopped the medication because of the slight stings I would get and feelings of "it was going to strike", but it never did, although I was taking a very, very low dosage. I was doing great and TN came back to me in my lower jaw, due to the loss of a family member and all the stress I was under. "But", it has not come back in the area I had surgery for, which is the middle section above the upper right lip. I would give it some time. Having a good neurosurgeon means a lot in this type of procedure, one who has performed them before and understands TN well. I also have numbness, from time to time in my tongue, but that is nothing compared to the relief the surgery has given me. I will consider it again are another procedure in time if my lower jaw gets to the point the medication does not work. Good luck to your Mother and tell her to give it sometime.
Waking up after they cut my scull open hurt like ---------. The bone had been cut then they played around in my head before they put the lid back on. Of course it hurt. But that was in2007, I am bilateral and that was the left side. Was it a sucess. I still have pain when the wind blows on my face. Am I glad I had the MVD done--YES. Had Gamma Knife on right side in 2009. Had a good deal of relief and it was an out patient surgery. Am I glad I had it done, YES
Am I still in pain-yes, but not as severe and often. Sucess- not total, but the last years are better than before.
Is the pain coming back-Yes-slowly increasing over the years. I have been fighting this monster sfor almost 20yrs. Any relief is better than none, still take low dose of meds--but I have my life back. I can drive, work in the garden, come and go as I please. The pain is an old friend of mine and we get along just fine. I am 67. Love to all of you as we travel this very rocky road together. Having someone whe knows how it feels helps. I am so sick of:" Hope you feel better soon". This is a progressive condition. I am not going to get better. Neither are our soldiers who come home in pieces. But if they can try so hard. It makes me look like a pansy. YES IT HURTS, so do they.Thank God it is not our entire body shot to hell.
Give thanks that help is available to us. We still have arms and legs, and our intire head left. I will take 70% or 50% or 30% it is some relief and new meds and treatments are on the way. Keep your chin up- unless that hurts your neck- or smile, unless that triggers pain. Chill out and think happy thoughts- that does not hurt, and may help. Love...c.
Yes I woke up in severe pain. Dr. Corrodina kept me in recovery 3 hours longer because of the pain. My pain was behind my head at the bottom of my mastoid. Now I have a huge bump there that is painful. I still have TN, its been a year and a half since my surgery. I hope she gets well.
I am having MVD surgery with Dr. John Alksne at UC San Diego in 3 days… This Monday. He did the surgery for a friend of mine, and does it differently than most. He will go in and use a strip of my own tissue to gently lift the blood vessel off of the nerve, and then stitch it back out of the way where it was when I was born. He doesn’t believe in using Teflon or any kind of foreign body in the brain because he says people can have adverse reactions to it after the surgery. He also uses a more expensive bone compound to completely fill back in the hole in my skull instead of putting titanium mesh across it. He says the titanium doesn’t always hold in all of the spinal fluid, and leaking can cause complications. He has been doing this surgery since the 1970’s, but he is still one of the foremost experts on trigeminal neuralgia. The hospital looks more like a 5 star resort than a hospital… Yet, even though I know all of this, I’m still nervous to have surgery. My TN was crazy from July-Dec this year, and then unexpectedly stopped completely after taking Oxcarbazepine and baclofen. I’m worried that maybe I’m better, and don’t need the surgery, but my doctor and husband keep telling me it’s a progressive disease. It sounds crazy but I kind of wish I would have another small attack so I know for sure I need the surgery. Is that crazy or what? The pain, when I had it last month, was so intense I was suicidal, and yet now that it’s in remission, I doubt that I have TN. I think I’m just so terrified of surgery, I am thinking of every way to call it off!
My wife had MVD last March. The procedure went well, with the neurosurgeon finding both an artery and vein compressing the nerve. Post ops took several weeks of recovery, including strong headaches that gradually reduced. For 8 months she was completely pain free. However two months ago her TN returned, very quickly, and quite possibly worse than before. We did notice that as the nerve healed and feeling returned, the pain came back with it. She remains glad to have done the procedure, as it brought her 8 months of relief. We now spend a great deal of time and energy exploring other remedies. We have found a number of things that help, but over time it seems they all lose there effectiveness...but we continue looking.
We do question the "vein/artery compression" theory. Many sufferers
I'm glad you do and wish many other sufferer's of such an ugly affliction did, before they went down the invasive root, though it does 'work', MVD that is, so after 30 odd years why is it still considered a theory/ hypothesis? Somebody is still asking/ ignoring questions/ answers. Lets have the medical profession look at the other end of the trigeminal complex, it would certainly let a lot of dentists off the hook.
Sean said:
My wife had MVD last March. The procedure went well, with the neurosurgeon finding both an artery and vein compressing the nerve. Post ops took several weeks of recovery, including strong headaches that gradually reduced. For 8 months she was completely pain free. However two months ago her TN returned, very quickly, and quite possibly worse than before. We did notice that as the nerve healed and feeling returned, the pain came back with it. She remains glad to have done the procedure, as it brought her 8 months of relief. We now spend a great deal of time and energy exploring other remedies. We have found a number of things that help, but over time it seems they all lose there effectiveness...but we continue looking.
We do question the "vein/artery compression" theory. Many sufferers
I hear so often 'it is a progressive disease', says who the folks who don't know what causes it? This irritates me in the extreme, what about remission, which is common, how do they explain it? Why the reason if you don't have surgery sooner the outcome is worse, bearing in mind remission is common. $$$ talking who can guess, but I would be wary of any pushing invasive procedures when the cause is undefinable. Sean said:
My wife had MVD last March. The procedure went well, with the neurosurgeon finding both an artery and vein compressing the nerve. Post ops took several weeks of recovery, including strong headaches that gradually reduced. For 8 months she was completely pain free. However two months ago her TN returned, very quickly, and quite possibly worse than before. We did notice that as the nerve healed and feeling returned, the pain came back with it. She remains glad to have done the procedure, as it brought her 8 months of relief. We now spend a great deal of time and energy exploring other remedies. We have found a number of things that help, but over time it seems they all lose there effectiveness...but we continue looking.
We do question the "vein/artery compression" theory. Many sufferers
My theory is that my TN was cause by a wrong head movement and I think its pinched somewhere else other than where the surgery took place because the weird pain came back after 3 and a halve years behind the ear right above the scar. It feels like somebody is pulling my hair and mostly starts at night if I have a busy day. But it’s not so bad, so I take some Tylenol and go to bed. Sometimes I still feel it in the am, other times I wake up fine.
Would love to know how you're doing... Bonnie said:
I am having MVD surgery with Dr. John Alksne at UC San Diego in 3 days... This Monday. He did the surgery for a friend of mine, and does it differently than most. He will go in and use a strip of my own tissue to gently lift the blood vessel off of the nerve, and then stitch it back out of the way where it was when I was born. He doesn't believe in using Teflon or any kind of foreign body in the brain because he says people can have adverse reactions to it after the surgery. He also uses a more expensive bone compound to completely fill back in the hole in my skull instead of putting titanium mesh across it. He says the titanium doesn't always hold in all of the spinal fluid, and leaking can cause complications. He has been doing this surgery since the 1970's, but he is still one of the foremost experts on trigeminal neuralgia. The hospital looks more like a 5 star resort than a hospital... Yet, even though I know all of this, I'm still nervous to have surgery. My TN was crazy from July-Dec this year, and then unexpectedly stopped completely after taking Oxcarbazepine and baclofen. I'm worried that maybe I'm better, and don't need the surgery, but my doctor and husband keep telling me it's a progressive disease. It sounds crazy but I kind of wish I would have another small attack so I know for sure I need the surgery. Is that crazy or what? The pain, when I had it last month, was so intense I was suicidal, and yet now that it's in remission, I doubt that I have TN. I think I'm just so terrified of surgery, I am thinking of every way to call it off!
I had mine done almost 4 weeks ago. the pain from the surgery has subsided but I am still having pain. the dr. told me that the nerve was compressed for so long (8) years that it will take time for the nerve to stop firing. I hope he is right because I'm worn out with this problem. Hope your loved one feels better soon.