Has anyone with Type II had MVD. What was the recovery and procedure like? Where you able to go back to work?
If there is another place I should go, please let me know.
I am not sure if I am posting this correctly since I am new. I am looking to meet anyone with Type II for more information and mutual support
Thanks, Mandie
Hi Mandie glad you joined, I have atypical and was considered neuropathic due to dental work, also did the rounds of tmj, etc ENT specialist at Loyola University top notch, and went beggin for a gamma or mvd surgery to get rid of pain was referred by a top TN specialist that neither of the two surguries are best option for burning 24/7 pain in november 2011 I had a trial of a PNS unit implanted with a final done December of 2011, by Dr. Konstantin Slavin at University of Chicago Medical Neurosurgery department, before that you are welcome to friend me and read my story tried all the drugs and even a nerve block, this has allowed me to return to work after 3 years in bed trying med after med after med, hope this helps, and wishing you low pain and hope you get the answers you are looking for.
Kathy
HI Mandie I often wonder if anyone with type 2 has had a positive outcome with an MVD. Will be interested in any replies. Another group to ask the question would be the MVD group.
I have had Type 2 for 3 years. My neurologist advised against any surgery as the result is often worse pain. As I definitely don't want to risk that, I have been on different medications trying to find one that works. I am currently taking 300mg in the morning and 450mg at night of Trileptal and 50mg Endep and bedtime. I am not feeling too bad, just nausea throughout the day but I am able to go to work. For me surgery would be a last option, but everyone is different and it would be good to hear of some good results.
Mandie, I've recently posted an abstract in the ATN group from the largest retrospective study ever conducted for MVD on both Type I and Type II patients. You should be able to find the abstract in the top couple of pages of that group discussion.
Regards, Red
Hi Mandie. I had MVD done on April 27. I still have pain but not as much. My doctor said it's should take sometime for pain to go away. Recovery is not bed. If I had to go to work I would be able to go know.
Hi Mandy, i had the the surgery in Jan. I still suffer from a little pain. Not nearly as bad as when it was full blown. If the barometric changes I have a little pressure in my ear. Not the pain i was suffering from before. I was off from work for a month and returned with no pain whatsoever. I thought some of the post op symptoms would stay forever but they were all gone before I returned to work...my doctor would not release me until i was 100 per cent better. I did feel some pain from the incision, but as i was healing i started to feel better. Would i have the surgery again? absolutely!!!!!, anything would be better then to feel like you cannot go another day feeling like a zombie everyday and not really having a life. I have 3 children 10 grandchildren and a lot of loving and living to do...so hang in there and keep your options open. God bless.
I had an MVD on 8/9/13. The surgical fellow didn't wasn't to do it. He quoted me studies that show Type II has a very poor success rate with MVD. He tried to talk me into gamma knife. Then the surgeon came in. I told him I didn't want any short term solutions and I wanted to have an MVD so I can get off meds and be "fixed". He agreed to do it. Not only did the pain not go away but now I have a new host of problems, I didn't want to believe Type II was untreated with MVD but everything suggests it might be.
Beano I am so sorry to hear that. From what I have read Gamma Knife would not have helped either. Do you think with type 2 it is a problem on the nerve path and this is why the MVD doesnt help? I understand Type 2 from dental work or trauma but Type 2 out of the blue I dont understand where it comes from?
Hi Elstep,
Pain professionals are struggling with the distinctions (or lack thereof) between Type II TN and trigeminal neuropathic pain. Both are treated in much the same way, and there appear to be multiple causes. The initiating factor is not always blunt force trauma or dental work or infection or anesthesia mis-delivered directly into the the Lingual nerve. Some cases of TN-II or neuropathic pain seem to have a character that is consistent with central nervous system processes of some sort, though these processes do not appear to have been well characterized with respect to pain of this type. Though in many cases TN-I has definite causes in microvascular compressions, even this is not universally true. Some cases are simply "spontaneous" and untraceable to a cause. Of both types of TN....
I wish I could be more definite for you.
Regards, Red
I traveled out of town to a teaching hospital and saw a neurosurgeon that specializes in treating TN. I am atypical type 2. My neuro suggested I ask for radio frequency to be done. He said absolutely no to MVD or radio frequency for type 2. He only does MVD for type 1 TN. From his experience he told me he has seen too many patients with type 2 get worse from MVD and all the invasive procedures. He simply looked at me and said "I don't want to make your worse."
I am taking medications, getting partial relief and hoping for remission as I had this in my 20's and went into remission only to have it reappear at 56. I am only interested in PNS, nerve stimulation but can't find anyone in my area that does it.
I got one more opinion and it was the same. I think it is wonderful some of you have gotten relief from MVD as MRI does not always show what is going on. Surgeons are reluctant to go in unless you have a positive MRI. Mine was only suspicious because the finding is seen in patients without symptoms.
For now I am doing nothing except a regimen of meds, low doses, 10 baclofen, amytrypiline 25 mg. bedtime, and elevated my gabapentin to 2400 mg. a day. A pain management doctor is giving me percocet 7.5 mg. 3x day. I have to admit I searched everywhere for over a year but now have stopped. I don't visit this site as often as I should. It gets me going again, should I look more. I will eventually but the stress as decreased as the anxiety of chasing a cure is not a priority for me anymore. I will not do anything invasive. My pain is 24/7 and without stabbing, if I start stabbing then I will look for help as then it would be presenting more like type 1.
Happy Thanksgiving to all and I hope today you have less pain or even some pain free hours. Sharon
To all, I have read some research that gives typ 2 folks a 65% sucess rate with the MVD. The report went to say that a majority of the remaining 35 % felt that they did achive some releif from the MVD though not total. I like those odds. I've just had my second MRI in a month last week. This one was with contrast and ordered by a neurosurgeon. He said I am a good canidate for the MVD. That's my hope, because these meds suck bad. My life has been flipped upside down. I'm still working but as a police officer its hard to get by at 75%, 80 on a good day. Happy day after Turkey Day everyone
Houston, please provide a reference for the 65% rate. The best stats I've seen on MVD for Type 2 TN were about 38%. In a mix of Type I and Type 2, MVD seems to be a bit more effective than that in moderating or removing the Type I component.
The article that I came across & posted:
http://www.touchneurology.com/system/files/private/articles/10427/pdf/monaco.pdf
Stated high percentages for MVD, I believe. Study done by Univ of Pitt.
From Nov 2011 with Barrows involvement. Don’t quote me, we know stats work. 
Hi Mandie,
I have had TN for almost nine years. It began as typical TN but evolved into ATN as the years progressed leaving me with 24/7 pain instead of sporadic episodes. I tried all sorts of drug therapies before deciding to have the MVD surgery on 5/1/13. My MRI showed a vascular loop around the trigeminal nerve but when they opened my skull they found two additional areas of compression, one by an artery and one by my actual brain stem. They attempted to separate the compressed areas and padded with teflon padding. Following the surgery my pain was intermittent, sort of like when you can't quite get good reception on a radio station but it slowly returned to it's original state and is in some ways now worse than before as the areas on my face/skull that trigger or intensify the pain have increased due to the craniotomy. I also experience complications following the surgery when I developed hydrocephalus and my spinal fluid began to leak out of my incision after the staples were removed. I had to be readmitted for another five days for a lumbar drain which was more excruciating than the surgery itself. I don't regret the MVD because I would have always wondered if it would have worked for me but unfortunately I am worse off now than before. I did not anticipate how difficult the recovery from the surgery would be. Just having your skull cavity opened and exposed to air is difficult to normalize after and with the additional complications I experienced, I was off work for about 2 months. I have a desk job and don't have any strenuous physical requirements or it would have been longer before I was able to return.
I would be happy to answer any questions I didn't cover or have raised for you. After my surgery I also went for a gamma knife consultation and was told that I was not a candidate because I had ATN and it would likely not be successful and may leave me with facial numbness which I'm starting to think is not such a bad thing. I already cannot feel the top of my ear and behind my ear where they had to cut the cranial nerves for the MVD. That took awhile to get used to but it doesn't bother me so much anymore.
I hope this information is helpful.
-Laura
Laura, I am ATN and I saw one of the neurosurgeons recommended from this site, he was the top TN specialist at a teaching hospital affiliated with USF in Tampa, FL. He looked at me and said he would not do anything invasive for me as he has seen too many ATN sufferers get worse, he just simply said "I don't want to make your worse." However, he does do MVD for TN that presents with the stabbing and electric shock like pains. My neuro thought RF might be helpful for me but this doc said no way. I certainly understand you wanting something that will make your face numb, perhaps easier to deal with than the relentless 24/7 of ATN. I think I have read many posts of sufferers that have had gamma knife and do get facial numbness as an after effect of the surgery but relieves the primary pain of TN, not sure now that your are ATN.
I am not sure but it appears you have nerve injury now from the MVD, and the constant pain may be this AD, anethesia dolorosa. There is page on neurostimulation, PNS, where many of us are discussing this treatment for failed MVD and ATN. Medtronic manufacturers this device and you can find some info on doctors doing this at this site, www.sjm.com, Patients, Neurostimulation, then a page to enter your zip code that will bring up doctors within a 100 mile radius that do neurostimulation, they are neurosurgeons and pain management doctors. Most do spinal cord stimulation but hopefully someone is doing this newer PNS for TN. Christine reports at least a 50% reduction in pain and meds help with the remaining pain.
I am sorry your MVD failed, there is a page on this site for anyone who has undergone MVD or are considering it. I will be seeing a neurosurgeon that may be doing this PNS soon. My block will most likely be my insurance not covering it since it is fairly new and I have a Medicare plan. Don't lose hope. There is failure in so many surgeries involving compression of nerves, I have failed back surgery. You get relief initially and then years later scarring and boney growth from being cut compress the same nerves a herniated disc was compressing. Sharon
Hi Sharon, thank you for the information. I went to the SJM site and requested an information kit. I have exhausted so many options that I feel i'm running low on new leads. Even though my pain evolved into 24/7 pain, the quality remained stabbing and electric and since there were positive findings on my MRI showing a vascular loop around the nerve, the surgeon felt I would benefit from the MVD. Unfortunately, that was not the case. I am worse after the surgery I believe because the craniotomy itself has created new pressure points on the nerve and they found 2 additional spots of compression that they attempted to pad as well. I have experienced such bad side effects from all the medications I have tried, which are numerous, and now i'm simply on pain medications to get me through. My last round of Cymbalta had a positive effect on the pain but made me so ill that I could barely walk across a room without falling down. Not a good trade off for me. I look forward to receiving the information from SJM and exploring that option. I hope your insurance will allow you to explore these options and I'd love to hear what your experiences are! Take care, Laura
I am glad you know there is another option. This PNS has been discussed a lot over the past month. A Christine benefited from it and told her story. I can imagine neurostimulation buzzing over my face where it hurts and helping me block the pain signals from these nerves. I have had a spinal cord stimulator for unresolved extremity pain from a herniated disc so I can imagine how it might feel. I wish you the very best and hope you find a competent doctor that is doing this in his practice. I have talked to my pain management doctor and another connected with USF teaching hospital but neither one does it yet.
I am so sorry your surgery failed. You get all pumped up with hope only to be let down and the let down is not easy to go through. And I can't imagine still having the electric-shock stabbing pain and now 24/7 pain. I had a very ambitious neurosurgeon in '05 trying to correct a spinal deformity by cutting a fractured vertabrae at an angle that would give me back a lordosis and the bone slammed down on my L4 nerve root and caused permanent damage to my right foot called dropped foot. I think about it sometimes and wonder if it was like using a hack saw and someone wasn't right there to catch the bone before it fell because I needed a fusion, more bone between both bones...........daaaaah! Woke up and could even use the foot, no feeling and the neurosurgeon on call just said everything went fine and it all looks good.
I need another decompression of my lumbar spine, can't sit, stand or walk because of sciatica so after I get this taken care of I am going to search my area for a doctor that does PNS for ATN or TN. Take care, Sharon
Red,
As you know, my wife and I just returned from seeing an expert TN neurosurgeon who has performed several thousand MVD's.. He diagnosed my wife with TN-2 (V-2 venous compression) and estimated a success rate of 70% ("no pain, no medication") if the MVD were performed today. In his book, Striking Back, he states that, "atypical and mixed cases are often helped (by MVD), but the success rates are more in the 50 to 65% range as opposed to 90% and up (for TN-1)."
You mentioned an abstract, "posted in the ATN group from the largest retrospective study ever conducted for MVD on both Type I and Type II patients. You should be able to find the abstract in the top couple of pages of that group discussion." I apologize, but I have been unable to locate the abstract. Can you provide a more direct link?
Also, the above request that you issued to "Houston" is confusing to me in light of what my wife was told and what I've read. I realize that neither you nor I have all of the facts where my wife is concerned, but she wouldn't even contemplate the purchase of another plane ticket, much less risky surgery, if all we could hope for is a 38% chance of success.
So, as we go through the agonizing process of making this decision, we want to have as much information concerning MVD for TN-2 as possible. The MVD Group discussions have been very helpful. But when I saw your Houston comment I was set back a little. Obviously the doctor sees something that we're not completely aware of with my wife's TN-2. He is certainly not rushing her to the operating table, but he is a bit more optimistic than 38% or whatever is discussed in the abstract.
Any clarification that you can provide will be much appreciated.
thanks,
Allen
Allen, I went digging for the original article where I saw the 38% stat. And it appears that the following abstract is what I was referring to. If I've misled you, then I apologize. Sometimes I can't trust my memory for numbers... However I have bolded the section that seems most pertinent.
Regards, Red
Microvascular decompression (MVD) has become one of the primary treatments for typical trigeminal neuralgia (TN). Not all patients with facial pain, however, suffer from the typical form of this disease; many patients who present for surgical intervention actually have atypical TN. The authors compare the results of MVD performed for typical and atypical TN at their institution.
The results of 2675 MVDs in 2264 patients were reviewed using information obtained from the department database. The authors examined immediate postoperative relief in 2003 patients with typical and 672 with atypical TN, and long-term follow-up results in patients for whom more than 5 years of follow-up data were available (969 with typical and 219 with atypical TN). Outcomes were divided into three categories: excellent, pain relief without medication; good, mild or intermittent pain controlled with low-dose medication; and poor, no or poor pain relief with large amounts of medication. The results for typical and atypical TN were compared and patient history and pain characteristics were evaluated for possible predictive factors.
In this study, MVD for typical TN resulted in complete postoperative pain relief in 80% of patients, compared with 47% with complete relief in those with atypical TN. Significant pain relief was achieved after 97% of MVDs in patients with typical TN and after 87% of these procedures for atypical TN. When patients were followed for more than 5 years, the long-term pain relief after MVD for those with typical TN was excellent in 73% and good in an additional 7%, for an overall significant pain relief in 80% of patients. In contrast, following MVD for atypical TN, the long-term results were excellent in only 35% of cases and good in an additional 16%, for overall significant pain relief in only 51%. Memorable onset and trigger points were predictive of better postoperative pain relief in both atypical and typical TN. Preoperative sensory loss was a negative predictor for good long-term results following MVD for atypical TN.