Hi. I am 22 and I’ve had trigeminal neuralgia for two years. I have type one and two in all three branches. Today the pain just started in my tongue:(. I had MVD a year and a half ago and it was successful but then the pain came back three months later. I have tried every type of medication and never responded to it. I live in Oklahoma and I am just out of options here. No one knows what to do so I’m going to have to see someone out of state. I just want to know if anyone has had 2 MVD’s and was the second one successful or not? A doctor brought up possibly having a ganglion block done. Has anyone had this and did it work? I am so tired of being in pain and it would really help if anyone had some advice on this. Whether you experienced 2 MVD’s, had the ganglion block, just have a recommendation for a doctor/surgeon, or just have some advice on what helps your pain. Thanks!
Hello. I am so sorry for your pain. I have had 2 MVD and 2 Cyberknifes. I had relief for one week after my first MVD then completely came back. It might be different for you since you had full relief for three months. I think it is worth the try. I tried everything I could to get rid of it quickly. Everyone is different. I would advise everyone not to have 2 cyberknifes. AFter my second one, my symptoms got so much worse and will never go away. That permanently damaged my trigeminal nerve. Doctors tell me that there is nothing else they can do for me except meds. I wish you the best of luck with whatever you decide to do. Don’t give up. I am still fighting and not taking the doctors answers for me having to live with this for the rest of my life. I am only 47 and have a wonderful family that I want to enjoy everythng that comes our way. Keep fighting and you will find the help you deserve to get!!!
Hello
I have had a MVD that was initially successful as well, ut then started to have pain about 6 months after. My Dr. was incredible in everyway. My neurosurgeon was Dr Levesque in Beverly Hills CA . I received my surgery at Cedars Sinai . The experience was incredible in spite of some difficulty post op due to my cerebellum swelling, and a seizure. These complications were unavoidable.
At this time I am dealing with pain that is manageable by Tegrital, Baclefin,and Efexor . I am in a similar situation so please hang in there. Because the MVD was so hard om and my wife I cant think of doing it again...my next possible step would be the least invasive balloon compression (the shot).
I think over all my surgery was marginally effective and I would do it again. Just not now due to my age and mental health challenges
Please feel free to contact Dr Lesveque, I don't mind you using my name (Eddie Olivas) : however, at the end of the day do your homework and study who are the leaders in the field so you can be comfortable with your decision
The MVD I had on my right side took away the shocks, but not the burning boring pain. Eight months later, at my neurosurgeons suggestion, I had a peripheral nerve stimulator implanted , and it completely manages my pain. I no longer take any meds! Please ask me any questions you may have.
Christine
Thank you for replying. It means a lot and is very helpful. I really appreciate it.
DonnaS: Did your second MVD help at all? I wish you the best as well. TN is awful but we have to keep searching for answers and hope we find a solution. Cyberknife has been brought up by a few doctors but they have all advised me not to seek that treatment because I’m 22 and they don’t think I should get it at this age. They also said they do not believe it would help me any. Since my medicine didn’t help and my MVD wasn’t successful it’s difficult to find another option, as well as a doctor who will treat this with something other than medication.
Edster: Thank you so much for your reply. I am searching for different options and doctors. I definitely will keep Dr. Lesveque in mind. If you do the balloon compression please tell me how that works out for you. I hope you find relief soon.
Christine: I have never heard of the peripheral nerve stimulator. I looked it up and I am very interested in it. I think it would be great to try that and see if it helps. Was it difficult to find a surgeon to do this? Also is this something that the insurance company covers? Thank you for telling me about this.
I have had two MVDs, and due to the nature of what caused my TN is was thought nothing would be found, and nothing was. I had bone compressing against the nerve due to thicker than normal skull plates, and needless to say it was not going to grow back enough in five years to be a problem. After rechecking for compressions, the neurosurgeon combed the nerve to break up any adhesions. The combing of the nerve has helped with the nerve pain, but did not totally take it away. Fact, is to totally numb the pain to the eye would also put my vision in my left eye at risk, so the surgeon, and I both agreed the goal was just to make the pain manageable.
If you were ever able to make it to Oregon, I would highly recommend Dr Raslan at Oregon Health and Science University. He is the only surgeon I will allow to operate on me.
P.S. Dr Raslan told me he would never recommend Cyber Knife for TN due to the fact radiation near the brain could put the patient at risk for other complications, and that the only time it should be used is for brain tumors. I have great respect for his medical knowledge, and believe him when he says this.
Kayli
While many doctors use nerve stimulators to treat chronic back pain, and certain types of migraines, there are not many that use them for TN. My doctor, Jeffrey Brown in NY, is working very closely with the manufacturer of my stimulator, St.Judes Medical Supply, to raise awareness of the success of this device in pain control for TN. As far as insurance goes, my insurance covered it, but not all will. As the use of stimulators for TN pain is considered off label by the FDA, it may be difficult to get your insurance to cover it without havung to go through an appeal process.
You may want to go to the St. Jude’s Medical website and see if you can find a doctor in your area that uses their devices. Although I live in Georgia, I traveled to NY to see my neurosurgeon.
Hello Kayli,
I did not have any relief from my second MVD but I do not regret my decision for trying. I would of always wondered!! I had about a 30% decrease in pain after my first Cyberknife for a few months but I wish I wouldn’t of never had the second one. My neurosurgeon recommended for me to try again. BIG REGRET! Should of not ever tried that but we should be able to trust our doctos! Wish you the best of luck!! Donna
Most instances we have to trust our doctors in operations that are non elective surgeries. You have a heart attack and go to the emergency room, then you pretty much have to trust the doctors. Get run over by a car and lose your leg, you basically have to trust the any emergency help you can get.
For elective surgery, never simply trust the advice of your doctor. You need to understand the risks of what you are getting into and you need to look deeply into the qualifications of your doctor. It's on you to do this. The doctor has monetary incentive to convince as many patients he can to undergo surgery.
If a doctor is known to be a "leader in his field", this may mean he is doing experimental surgery or procedures that have not become proven to work yet.
My first MVD lasted a full year - it was amazing - but it came back with a vengeance! I then had a glycerol rhizotomy, which made me worse. They then opted for a 2nd MVD and found another area of compression that wasn’t present during the first MVD. It has helped with the shocks, but not the stabbing pain in my temple. My surgeon suggested a nerve resection of the sensory nerve of my temple. It sounded like the perfect answer, but it just made me numb in a tiny area on my temple. The pain continues to get worse in that area. I do think the MVD helped with the shocks. They aren’t gone, but are better. I’ve been considering the sphenopalatine block, but I’ve heard there is little success for ATN. My doc would not let me do gamma knife because he spends so much time trying to help people who had complications from it. I live in CO, but travel to PA to see Dr Sekula. He trained under Janetta, who created MVD. It’s been worth the 5 trips out there to see him. After trying every med under the sun, I was able to manage my pain with methadone for a year, but now that’s not working anymore and I just quit my part time job bc I was in too much pain to work.
Hello Kayli,
I had one MVD 4 years ago for Type 1 TN and have been pain free since then. No more terrible shocks. Depending on where you are in OK, my surgeon is where I live....Shreveport LA. If you are interested, his information is here.
http://www.lsuhscshreveport.edu/Hospital/PhysicianSearch/09f611ad-d...
He stated after surgery that I had multiple blood vessels "tangled' with the nerve and a 2 hour surgery ended up being 6 hours. He also did a bone fusion in my neck some years ago so I was familiar with him. From what I understand, he has done hundreds of MVD's. Great Neurosurgeon.
Ken
P.S. You will probably need a referral....but it wouldn't hurt to call and ask.
Don said:
Most instances we have to trust our doctors in operations that are non elective surgeries. You have a heart attack and go to the emergency room, then you pretty much have to trust the doctors. Get run over by a car and lose your leg, you basically have to trust the any emergency help you can get.
For elective surgery, never simply trust the advice of your doctor. You need to understand the risks of what you are getting into and you need to look deeply into the qualifications of your doctor. It's on you to do this. The doctor has monetary incentive to convince as many patients he can to undergo surgery.
If a doctor is known to be a "leader in his field", this may mean he is doing experimental surgery or procedures that have not become proven to work yet.
I have had a experimental surgery done by my neurosurgeon who works under a "leader in his field" neurosurgeon, and it helped tremendously! I know way too many people who were hurt by MVDs that were not done right. I have also seen many neurosurgeons rush people into MVD surgery due to the monetary incentive. The leader in TN surgery where I live often rushes people into surgery just for that reason, and even if he did take my insurance, I would not go to him. Don't trust him. Thing is my neurosurgeon works under this leader, but does not rush me. Takes the time to explain everything, and also respects I do my homework, and will come into his office ready to have a back and forth discussion about options. Only once has he disagreed with me.