I have TN2 or atypical trigeminal neuralgia or atypical facial pain. I had an MVD operation that was not successful. I seriously question the statistics on the success rate for those with TN2 who had a MVD. I would like to hear from everyone who have TN2 and underwent an MVD that turned out not to be successful. (Only respond if you have TN2, DO NOT RESPOND IF YOU HAVE CLASSIC TN) You can email me privately or post here. Its okay just to say whether it worked or not.
It just seems to me that surgeons have an incentive to overstate the statistics.
I have type 2 and had a MVD Sept 2010. It was NOT successful:( this was the most disappointing thing I have ever gone through. I went into the surgery with highest hope!! The surgeon had given me statistics that MVD is successful for 90% of people with TN. I woke up with the worst pain I have ever experienced in my life!! It was a big black hole that took me months to climb out of!! I currently have a PNS and it has been very helpful lowering my pain level by at least 50%. I sure wish I had gone this route a few years ago but, nobody told me it was a possibility. I had to research my options and keep fighting for pain relief!! It has been an uphill battle!! Best of Luck to you!! Stay strong!!
I have type 2 and had a MVD Sept 2010. It was NOT successful:( this was the most disappointing thing I have ever gone through. I went into the surgery with highest hope!! The surgeon had given me statistics that MVD is successful for 90% of people with TN. I woke up with the worst pain I have ever experienced in my life!! It was a big black hole that took me months to climb out of!! I currently have a PNS and it has been very helpful lowering my pain level by at least 50%. I sure wish I had gone this route a few years ago but, nobody told me it was a possibility. I had to research my options and keep fighting for pain relief!! It has been an uphill battle!! Best of Luck to you!! Stay strong!!
It's my daughter, age 32. (She's not a member here but she does have the book). She had an MVD August 1. The Dr. was not sure he saw something but still felt MVD would be worthwhile. He did not find a compressing nerve in surgery but wrapped it anyway to protect it from a vessel behind the nerve. Also clipped a vein. Seems it has been good so far...no icepick stabs. But Type II coming back as she's trying to go off Lyrica. After getting off Lyrica she'll start getting off Lamictal. But of course that remains to be seen how bad the pain is. She feels very stupid on the meds, has gained 20 lbs etc. But she's had some very good days following MVD, once recovered from the surgery.
all I can say is I hope like hell it works, I have an MVD scheduled for October 3rd. I have a compression on the nerve, but if you ask me to explain where, well, no idea..just saw it on my MRI, dont know technical term. I was told by the neurosurgeon that he believes at least 90% of the pain will go away, if not more. I have mostly a-typical symptoms, boring in ear, teeth hurt and wish that someone would get the ice pick out of my ear. My meds are keeping it under control right now, but I have lousy side effects to every drug I take and cant work right now. I would also like to hear more success stories, oct is right around the corner and my nerves are starting to fray.
What was your TN2 pain like before the surgery? I am asking because it has been suggested to me that I consider an MVD. I have never had shooting pains, etc.
Thanks,
JanetM
Lisa26 said:
I have type 2 and had a MVD Sept 2010. It was NOT successful:( this was the most disappointing thing I have ever gone through. I went into the surgery with highest hope!! The surgeon had given me statistics that MVD is successful for 90% of people with TN. I woke up with the worst pain I have ever experienced in my life!! It was a big black hole that took me months to climb out of!! I currently have a PNS and it has been very helpful lowering my pain level by at least 50%. I sure wish I had gone this route a few years ago but, nobody told me it was a possibility. I had to research my options and keep fighting for pain relief!! It has been an uphill battle!! Best of Luck to you!! Stay strong!!
I had my MVD for my TN2 on November 2nd 2012. Three months laters the pain was back. I just returned from my Surgeons office where we discussed other options. Since I did not have a good response to meds, he went over the other surgical and non invasive procedures. Since i have pain off two branches of the nerve areas he feels that the radiotherapy would be quite intensive but maybe more effective than the balloon or gamma knife.
Every case is different. Please let us know the results.
Also, let us know how the doctor decided an MVD was in order. I really think that doctors who treat TN2 have too much of a financial incentive to advise an MVD be done. They also have a financial incentive to overstate the rate of success of MVD for TN2.
I believe if a patient has had TN1 or classic TN symptoms of an electrical shock sensation at some point, then an MVD might work. Also, if on an MRI, there is clear evidence of a blood vessel impinging on the base of the trigeminal nerve, then an MVD is in order. Otherwise, the patient is taking a big risk (in my opinion). Just because someone has excruciating pain in the trigeminal distribution on one side of their face does not mean they have trigeminal neuralgia or warrant an MVD.
I hope you are treated better than I believe I was. My MVD did not work for me. It hurt like hell from the moment I woke up from surgery. The surgeon said to give it some time. Then as a bonus I got a CSF leak from a tiny hole in the sealant the surgeon used to cover the hole he made in my skull. This was not detected by the surgical or post-operative team. The MVD was done at a very busy and overcrowded hospital on Long Island, and I felt lost in the shuffle there. I did not feel well after the surgery but everyone insisted that "it was normal to feel horrible." So I left the hospital a few days later only to go to an emergency room about 2 days after that, then had surgery to correct the CSF leak and "air on the head." Going through that second surgery was hell. A few months later, my TN2 pain went back down to where it was before the surgery.
shindig said:
I have type 2 and am having an MVD in 4 weeks. If it doesn't work I don't know what I'll do.
After my failed MVD, the surgeon recommended PNS. Another TN2 surgeon recommended glycerol rhizotomy. Both were against gamma knife. Meds do not really work on me. I am not confident in a rhizotomy or gamma knife or PNS at this time for me.
lmquags said:
I had my MVD for my TN2 on November 2nd 2012. Three months laters the pain was back. I just returned from my Surgeons office where we discussed other options. Since I did not have a good response to meds, he went over the other surgical and non invasive procedures. Since i have pain off two branches of the nerve areas he feels that the radiotherapy would be quite intensive but maybe more effective than the balloon or gamma knife.
Sounds like you were in a similar position I was in. You simply have to do something proactive about this. Sounds like there is something on the MRI that may be indicative of something compressing the nerve, but is far from being the conclusive cause of your pain. An MVD has the potential of completely ridding you of the pain so how can you not pass up this opportunity? Just be cognizant there is a chance of being worse off after the operation.
Have you had a sphenopalatine ganglion block? Your throat and sinus pain seem to indicate this is needed before the MVD. If the block works, then you may be a candidate for a sphenopalatine ganglion ablation which is a simple outpatient procedure.
You say that you don't know what you will do if the MVD does not work. I think you should look into Peripheral Nerve Stimulation as an option post-MVD. If you realize soon after the MVD that it did not work, you need something to look forward to.
In my opinion as a patient, I believe there is no good research out there that TN2 pain without first having TN1 pain can be helped by an MVD. There is a lot of anecdotal hearsay evidence, but no hard research. If a surgeon tells you there is such research, ask him for a copy of the published research report. The John Hopkins Trigeminal Neuralgia Center does not treat patients with TN2. That should tell you something. They will not perform an MVD on a TN2 patient. Johns Hopkins is the highest rated hospital in the country. Dr. Ben Carson, who was the head of the Center when I visited there is considered one of the top brain surgeons in the country. They refer TN2 patients to other outside doctors. This should tell all TN2(without ever having TN1) patients something. The surgeon who did my MVD said he had a 70% success rate but he had no published research to show me and said he was in the process of doing research himself in order to publish a report.
I saw your comment about Johns Hopkins and how they send out the TN2 patients. I had a very long conversation with Carol James, Ben Carsons PA, and she said that they send to Dr. Brown, because Dr. Carson and Dr. Lim are really just doing this as a part time type thing, that thier real specialties are what they do more of, so when its ATN they send them to Dr. Brown. I did have my MVD with Dr. Brown on October 3rd of last year and it was a huge success!! My pain was 100% gone for quite some time, I have some pain in my teeth now, but there is some underlying autoimmune disorder that I have that is causing that. I am currently back at hopkins getting tests to find out exactly what is going on, but they believe once they treat whatever it is, the TN will go away again. It seems that for whatever reason, the steriods I am taking make the TN flare, if I am off them I am 100% pain free.,
One thing that I will never forget that Carol said to me (she has been helping with this other issue) is that Dr. Carson felt that when it came to ATN that Dr. Brown was the best in the country.
Feel free to message me if you have any questions, but I would go to Dr. Brown in a heartbeat again if I had to
Don, sorry to hijack your question, but I have a similar issue.....
Has anyone out there ever started as TN1 with classic lightning bolt sxs and then over time the pain grew to include the TN2 pain profile (boring, searing, constant electrical feeling pain- primarily in the teeth, gums, jaw)? And, then received MVD with or without success?
And, any comments on whether in the scenario above, conclusive compression of TN via an MRI was necessary to justify MVD?
You are hijacking the question most definitely. I really need information about people with TN2 symptoms exclusively. I had a little typo in the original post that perhaps may have confused things. I am trying to remove the confusion on this particular issue. It is of primary concern to me. I will try to figure out how to start a new discussion.
I have run across one TN surgeon who does not rely on the MRI to justify the MVD. He will do the MVD if the symptoms match his criteria. He looked at the MRI and said he saw a compression.
Another surgeon I saw said he saw a compression and along with my TN2 symptoms recommended, and performed, the MVD surgery, but it did not relieve my TN2 symptoms at all.
I have run across a few doctors who looked at my MRI and said there was not conclusive proof of a compression on the MRI and recommended against MVD, while at the same time another doctor said there was enough proof on the MRI to perform an MVD. The radiologist report that came with the MVD did not see a compression.
I saw another surgeon who would not even look at the MRI because since I never had TN1 with classic lighting bolt symptoms, he would not do an MVD, He said it was just too risky an operation for TN2 exclusive people.
The two surgeons who recommended an MVD hold themselves out as TN2 specialists while the other surgeons did not.
Wow, your case interests me in that it rings a lot of bells. 3 MRIs and a Tolossa-Hunt diagnosis. We have some similarities in that it took some determination to come to a diagnosis and plan of action. Some differences also apply.
I am not surprised that the radiologist may not have looked for the vessels. I think that the doctor's instructions to the MRI people should be to look for the vessels. That was the whole point of my getting the MRIs, but there is a lot of miscommunication in modern medicine.
I had 2 previous MRIs that used different machines. On the second, the surgeon (who also did the MRI which was located in his office) saw a fuzzy line that warranted getting a third better "T3" MRI. He was then convinced from the clearer image of the T3 MRI that I had an impingement.
I wanted confirmation so I went to a vascular neurologist/surgeon in New York (A professor at Cornell, Columbia) who deals with blood vessels in the brain all day. He and his cohort came up with a diagnosis of Tolossa-Hunt syndrome. I was put on steroids to test his theory, but it did not help at all so that idea was scrapped. No spinal tap was taken. He also told me he did not think I should get an MVD, that he did not see a what the TN surgeon saw as being an impingement.
The next TN surgeon I saw did not do surgery for TN2 patients but did see the compression on the MRI.
The next TN surgeon I saw was against MVD for TN2 patients with pain in the upper branch of the TN. He refused to even look at the MRI because it would not change his stance on not operating on patients with my symptoms.
THe next TN surgeon I saw was against MVD on me after looking at the T3 MRI. While he was an expert, he only did a small number of MVDs a year. So he seemed conservative to me.
The next TN surgeon I saw thought I should get an MVD after hearing my symptoms and looking at the T3 MRI.
Our cases differ in that I did better on gabapentin than on tegretol or oxcarbazapine. I had been told by a doctor that clinical observation showed getting relief from tegretol/oxcabazapine was an indicator that MVD would help. I also had the pain for almost 20 years before having surgery. There have been published reports that waiting that long lowers the success rate of MVD.
I wish you and your surgeon well on the MVD!!! You look young and healthy in the photo, so a speedy recuperation is in order.
I don't have classic TN1 symptoms, I have the shocks on top of low/ high grade non stop pain, even 1000mg paracetamol, 90mg codeine, 100mg naproxen and 50mg morphine doesn't touch the pain, it used to be 4 days on, 3 days off with background shock pain,I couldn't eat for days at a time but luckily I got a 3 week break apart from pins and needles and the odd electric shock pain. I have a Mri which shows clearly that I have 2 cerebellar arteries pressing on the trigeminal nerve on both sides, the left more that the right, which is the side I have more pain on, yet the right has given pain in 2 branches too. I also have a 14mm chiari malformation which has given my neurologist maybe as many headaches as I get, his opinion is that he hasn't a clue, but it is definately not standard TN so he has referred me on to his boss, the man in charge of my regions skull based surgery and the guy in charge of the UK skull base foundation, so hopefully he will have an answer. The consultant I did see was however adamant that any surgical procedures like an MVD could not be guaranteed to have the standard success rate given the pain pathway, despite it being limited to the trigeminal nerve and his best advice was to hope to god that I find a med that works because I don't seem to have many options, such a joyous and morale boosting (not) day that was . He was lucky I was not in a 120% pain day as was the week before or I may just have given him a long lasting pain in the trigeminal to research for himself .:(
Shindig, I had not heard of checking the Thalamas for lesions. I will look into it at some point as the left side of my entire body has issues that I don't know whether are caused by the same thing as my facial pain.
Louise, The consultant you saw does not sound like a charmer. Did he rule out the MVD or just lower the chances of success? I hope that the doctor you have been referred to will be able to sort out the best care options for you and give you explanations that you understand fully. The chiari malfomation is a term that is new to me. I suppose that is in a separate area from where the 2 arteries are pressing on the trigeminal nerve? I will look into it more to see if it has any relationship to my symptoms. Thanks and good luck!
I have TN2 and I have been bounced around the Kaiser system for years-I finally found someone in Bev Hills that specializes in TN 2- He mentioned surgery after the MRI The good news is I am off work and have been placed on Disability
I am at 5 weeks post MVD (TN2 of course) and so far, complete success. We knew going in that there wasn't an artery to blame, but found a large vein that was removed. The nerve was also cut. As for the Neurosurgeon's incentive, I am at Kaiser and was rejected by my first neurosurgeon, probably because he doesn't get paid per surgery. My 2nd, who is younger, more aggressive (his words, not mine) who trained under a national leader of TN neurosurgery, said that he had done this surgery in which he would just be cutting the nerve in hopes and just "looking around for a possible reason" that it would be enough to make the difference, even though I didn't have the artery to remove. He said that TN patients are usually some of the most desperate in his field because of the pain and lack of hope and relief and that if I was with a outside surgeon, many will offer or agree to do procedure or surgeries that aren't the best, partly because of the money factor. I think that is probably true. I am grateful that I have relief, but I am aware that type 2 success from MVD is not always permanent, so I feel blessed each day that I am pain free. I have stupid horrible balance issues since that surgery from the cranial fluid that is still settled behind my eardrum, but I am told that it will be gone within 2-3 months after the surgery. Then, I will be a whole new woman, ready to start a new life! BTW, how much does reading all of this piss you off sometimes?!? I am like, come on drs, just help fix us, stop arguing over MRIs or this pain and that pain, or too much time or too little time. UUUUUGGGGGGGHHHHHH!!!