I had a successful MVD in October 2014 and fortunately have had zero pain since. I had my surgery just 9 months after my first symptoms (would have sooner but had to schedule my surgery recovery time around family life). Honestly, I could not bare the pain without meds and could not bare the side effects of the meds. I had neurosurgeons and doctors telling me to wait initially when I started asking about the surgery. A pain doctor told me literally though to "run to an MVD." I did tons of research and ended up going out-of-state to a top TN surgeon. I truly believe that having the surgery soon and a seasoned and experienced TN surgeon put better odds on my side. I am fortunate too that I had classic TN 1 symptoms and that my neurosurgeon was able to see two compressions on my MRI/MRA (the other neurosurgeons and doctors saw nothing). I know that surgery isn't the best solution for all but for my situation, it was absolutely the right thing to do. I'm praying that a permanent cure comes sooner than later for this horrible disease.
Hello Bonnie,
Did you go through with your MVD procedure? I am grateful for your post because it gives me some valuable information, especially knowing the doctor does not use Teflon or Titanium. I had a bran surgery over 12 years ago and the doctor did use titanium (supposedly a plate with screws). I had a epidermoid cyst (actually I still have it since it could not be removed as it is involved with the nerves) and that was causing TN. The TN came back again over a year and a half ago (summer 2014) and I have had a couple MRI's since. This time the TN is in the right side of my face. Over the past 1.5 years, it has come and gone. But in January it came back pretty bad. The neurologist prescribed me with Gabapentin - it helps, some. I am disappointed with the neurosurgeon who I saw (not the one who did the prior surgery - he referred me to another at the same hospital) because he was not patient with me nor did he seem to read the MRI correctly. I had to contact my original neurosurgeon and demand explanations. I am looking for a neurosurgeon who I can count on. I may have to travel to NYC, NY or some other area to get some neurosurgeon who is compassionate, takes his/her time with you, and recommends the right procedure. My neurologist says that the blood vessel is not pressing on the nerve, but the neurosurgeon says that may not be the case. It leads to me wishing to get a straight answer and not getting the run-around.
Please let me know how you are doing.
Michael
Hello Bonnie,
Did you go through with your MVD procedure? I am grateful for your post because it gives me some valuable information, especially knowing the doctor does not use Teflon or Titanium. I had a bran surgery over 12 years ago and the doctor did use titanium (supposedly a plate with screws). I had a epidermoid cyst (actually I still have it since it could not be removed as it is involved with the nerves) and that was causing TN. The TN came back again over a year and a half ago (summer 2014) and I have had a couple MRI's since. This time the TN is in the right side of my face. Over the past 1.5 years, it has come and gone. But in January it came back pretty bad. The neurologist prescribed me with Gabapentin - it helps, some. I am disappointed with the neurosurgeon who I saw (not the one who did the prior surgery - he referred me to another at the same hospital) because he was not patient with me nor did he seem to read the MRI correctly. I had to contact my original neurosurgeon and demand explanations. I am looking for a neurosurgeon who I can count on. I may have to travel to NYC, NY or some other area to get some neurosurgeon who is compassionate, takes his/her time with you, and recommends the right procedure. My neurologist says that the blood vessel is not pressing on the nerve, but the neurosurgeon says that may not be the case. It leads to me wishing to get a straight answer and not getting the run-around.
Please let me know how you are doing.
Michael
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!
Hi Michael,
First of all, I am sorry you are having this horrible pain. Now that I am completely TN free, I can not imagine EVER having to go through this disease again.
Dr. Alksne handles ONLY trigeminal neuralgia or other neuralgias. He has done over 2000 MVD surgeries in his 50 year span. Every neurologist I saw told me my MRI was "normal". He had me send him the films, and he called me within 10 minutes of receiving them to tell me that he saw a blood vessel on the nerve, and he could fix it. IF this is something that Dr. Alksne can fix, he will tell you. If it isn't, he will tell you that too. He's just too experienced to do a surgery that isn't necessary.
Please send the original films of your MRI with contrast to him. It wouldn't cost you a cent to get his opinion on whether he could help you. He's got a team of doctors that he is training to take over when he retires, but he is highly respected at UC San Diego, and Thornton Hospital is beautiful. All of his patients get the best care, and are all placed in intensive care for 3-5 days after surgery so they get the 1:2 nurse:patient attention.
My scar is completely covered by my hair at this point, and the site of the surgery isn't sore anymore. I have great hearing in both ears, no numbness in any part of my head or face, and my teeth miraculously chew perfectly again. Even though my bite was "off" and my teeth hurt incredibly bad during the time I had TN, every symptom of having a cracked tooth or osteomyelitis of the jaw... all the things I could have sworn were wrong, are now healed. Symptoms completely gone. It is crazy.
I was a TN patient that went through about 5 months of total denial that this is the disease I had. I "knew" it was a dental problem. I even had a heat scan done of my entire jaw, with a special camera that does mammograms... it showed inflammation at the place in my jaw that I had pain, so I "knew" I had a cracked tooth or an infection. I didn't. My doctor says there is a new diagnosis out there for the first year of symptoms. During the first 4 months, when I just had a constant burning pain in my jaw that waxed and waned, he says I was in the "pre-trigeminal neuralgia phase" of the disease (I had thought I just had TN type 2). When it progressed to the lightning strike hot white flashes of pain, that for me would strike over and over again for about 2 hours, and then leave me with the burning until another attack, I was in the full trigeminal type 1 phase of the disease.
TN is curable, but you have to act fast. My friend and mentor, who told me about Dr. Alksne, said her pain was so bad after 4 months, she had the surgery then. When Dr. Alkne got to her blood vessel, it had actually grown into the trigeminal nerve... it wasn't just sitting on the nerve like in my case. Can you imagine if she hadn't had surgery then? There is no amount of medication that would have helped her once the blood vessel actually grew through the nerve, and probably Dr. Alksne wouldn't have been able to move it away from the nerve and fix it. As it is, she has been completely TN free for 1.5 years, and says TN is a distant memory for her. That's what I wanted, and that's why I called Dr. Alksne.
The surgery is not fun. For about 3 days, it feels like a truck just hit you. There can be complications. If you have had the disease for a while, the nerve may be quite damaged already, and that will still take time to heal. But compared to the pain of TN, a few days of discomfort is an easy choice compared to a life of unbearable agony.
Michael said:
Hello Bonnie,
Did you go through with your MVD procedure? I am grateful for your post because it gives me some valuable information, especially knowing the doctor does not use Teflon or Titanium. I had a bran surgery over 12 years ago and the doctor did use titanium (supposedly a plate with screws). I had a epidermoid cyst (actually I still have it since it could not be removed as it is involved with the nerves) and that was causing TN. The TN came back again over a year and a half ago (summer 2014) and I have had a couple MRI's since. This time the TN is in the right side of my face. Over the past 1.5 years, it has come and gone. But in January it came back pretty bad. The neurologist prescribed me with Gabapentin - it helps, some. I am disappointed with the neurosurgeon who I saw (not the one who did the prior surgery - he referred me to another at the same hospital) because he was not patient with me nor did he seem to read the MRI correctly. I had to contact my original neurosurgeon and demand explanations. I am looking for a neurosurgeon who I can count on. I may have to travel to NYC, NY or some other area to get some neurosurgeon who is compassionate, takes his/her time with you, and recommends the right procedure. My neurologist says that the blood vessel is not pressing on the nerve, but the neurosurgeon says that may not be the case. It leads to me wishing to get a straight answer and not getting the run-around.
Please let me know how you are doing.
Michael
Some people can have an allergic or rejection response to the teflon plugs that they use to separate the vessel from the nerve. Did they use teflon, or did they use a piece of her own tentorum to move the blood vessel away from the nerve?
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 neurologist keeps putting me off about sending me to a neurosurgeon. I am going to him again tomorrow afternoon and my son is going with me. we want answers. I want relief. this is driving me crazy
Greetings!! I had MVD surgery in 2012 and I woke in pain, and it was the same pain only worse. I am still on all the meds and added a pain Dr because of chronic pain. I went to the ER within a week of coming home complaining of pain and the Dr who was treating me told me that he has seen "fair share" of failed MVD surgeries. More correctly the surgery did not correct the problem. I have spent years now trying to find a surgeon to operate again but none will redo the surgery. I am now on disability, which was a goings on. I am turning 50 in May, but I continue to try any possible avenue because I don't want the rest of my life affected by this condition. Stay positive for sure, just know that MVD surgery is not always successful in getting rid of the pain. I'm going to University of PA which is a nationally known for their brain surgery's successfully treating brain pain matters. If I could do it again I would still have done it. Just not by a local surgeon. For whatever it is worth my MRI can be used as a teaching tool because it shows the offending blood vessels. So the problem area can be seen. Really frustrating after care here. If I would have gone to a university or Pittsburgh (which I where the "Jannetta" procedure originated) which is what I am working towards now. Pick your surgeon carefully. It's a tough go to try to get it redone/corrected.
Hi Charly,
I had MVD and woke up to more pain than before the surgery. My surgeon also said they found the artery and wrapped it. My pain was worse than death. It took a doctor in Reno by the name of Dr. Hussar to bring me relief.
Tanny
I am in the same boat. I had 2 failed MVD's with complications. I now suffer with very painful involuntary movements of twisting, spinning, and pulling in my mouth, face and head. The aggressive movements is non-stop since Sept 2014. I live with chronic pain and am on very strong opiod meds plus neurontin and still does not take away the pain. I had a great career in the energy industry, but now am on disability. I've been to at least 18 doctors (neurologists, neuro surgeons, movement disorder specialists, PCP, ENT, so on and so on) and no one knows why I have this condition and just pass me on from one doctor to the next. No neurosurgeons want to take on my case. I hate living like this so much. I pray daily for a miracle cure.
Barsack529 said:
Greetings!! I had MVD surgery in 2012 and I woke in pain, and it was the same pain only worse. I am still on all the meds and added a pain Dr because of chronic pain. I went to the ER within a week of coming home complaining of pain and the Dr who was treating me told me that he has seen "fair share" of failed MVD surgeries. More correctly the surgery did not correct the problem. I have spent years now trying to find a surgeon to operate again but none will redo the surgery. I am now on disability, which was a goings on. I am turning 50 in May, but I continue to try any possible avenue because I don't want the rest of my life affected by this condition. Stay positive for sure, just know that MVD surgery is not always successful in getting rid of the pain. I'm going to University of PA which is a nationally known for their brain surgery's successfully treating brain pain matters. If I could do it again I would still have done it. Just not by a local surgeon. For whatever it is worth my MRI can be used as a teaching tool because it shows the offending blood vessels. So the problem area can be seen. Really frustrating after care here. If I would have gone to a university or Pittsburgh (which I where the "Jannetta" procedure originated) which is what I am working towards now. Pick your surgeon carefully. It's a tough go to try to get it redone/corrected.
Bonnie, so glad to hear the surgery was a success for you and you are feeling so much better. Can you tell me was the surgery super expensive?
Thanks
Stacey
How did the surgery go, or perhaps you didn’t go through with it. I am having MVD this coming Friday and am optimistic on getting rid of my pain.
There is a 90% favorable prognosis on this procedure and am hoping I am in that category. It’s so weird that I don’t have any family history of this disease yet the MRI showed differently . Let me know you are doing. BB
Hi Michael,
The problem with Neurologists and Neurosurgeons is: They hate each other. A neurologist will almost never refer you willingly to a neurosurgeon. I didn't realize this until I watched them interact in the hospital after my surgery, and asked the nurses what was going on. These sub-specialties deal with the exact same disease completely differently. Neurologists do meds and treatments on the nerve that can be done with very little invasiveness... because they aren't trained in surgery. Neurosurgeons would rather get to the problem and fix it already... but sometimes it isn't that easy. Both are appropriate sometimes. It's the patient's job to figure out which one serves them best.
Neurologists at Stanford and UCLA both told me I had no blood vessel on my nerve, even after getting my MRI results. The problem, I'm told, is that neurologists are not trained to read the actual films because it's not deemed necessary by the board of neurology. On the other hand, neurosurgeons must train to read MRI films, and do not rely on a radiologist to do it for them.
It turns out that MOST people have a blood vessel on their trigeminal nerve, so this finding, in and of itself, is not abnormal. It is ONLY when this finding is combined with lightning bolt pain along the nerve path, AND the pain subsides when the patient takes gabapentin, oxcarbazepine, or other anti-TN drugs, that the diagnosis of TN can be made. At this point, surgery to separate the nerve from the blood vessel is the only real cure... as long as you can guarantee that they will not touch again. The problem with the teflon plugs used in the Janetta procedure is that they can irritate the nerve, and actually create scar tissue that causes TN to re-occur months to years later when the body rejects those foreign bodies in the brain. At this point, the TN can become even worse because the teflon plugs get hard and bodily materials build up on them.
Dr. Alksne described his procedure in the way a contractor would: He takes a piece of the tentorum, cuts it into a strip, and gently loops it around the blood vessel. He then lifts the blood vessel, with the sling he has made, away from the nerve and "clamps it up to the rafters" so that it can never fall down or reach the nerve again.
This procedure was first developed by a South African doctor, and Dr. Alksne started using it in his MVD surgeries two years ago with great success. I am currently 3 1/2 months post surgery, and TN pain free. Completely pain free. I can eat crunchy snacks, and I don't even think about it. I do have some jaw pain from grinding that is controlled with my mouth splint at night, but the crazy horrible TN pain is completely gone. Fingers are crossed that it remains that way.
All in all, brain surgery was not a walk in the park. It was tough. Someone asked about the cost... I have no idea since my insurance paid for the entire thing. It can't have been cheap, as I was in the ICU for 4 days, and another 12 days with complications after. I would do it again in a heartbeat.
At this point I feel like I'm suffering from a bit of PTSD. I am terrified of any mouth pain, and had a hell of a time going to the dentist to get a check up and a cleaning. But I went in, and it went just fine. I was particularly afraid of getting numb again... but it went fine and resolved like it always did before the TN. No problem at all. I think I'm on my way to a complete recovery. My scar is pretty much healed, and my hair is grown back over the area. Phew.
-Bonnie
Bonnie said:
Hi Michael,
First of all, I am sorry you are having this horrible pain. Now that I am completely TN free, I can not imagine EVER having to go through this disease again.
Dr. Alksne handles ONLY trigeminal neuralgia or other neuralgias. He has done over 2000 MVD surgeries in his 50 year span. Every neurologist I saw told me my MRI was "normal". He had me send him the films, and he called me within 10 minutes of receiving them to tell me that he saw a blood vessel on the nerve, and he could fix it. IF this is something that Dr. Alksne can fix, he will tell you. If it isn't, he will tell you that too. He's just too experienced to do a surgery that isn't necessary.
Please send the original films of your MRI with contrast to him. It wouldn't cost you a cent to get his opinion on whether he could help you. He's got a team of doctors that he is training to take over when he retires, but he is highly respected at UC San Diego, and Thornton Hospital is beautiful. All of his patients get the best care, and are all placed in intensive care for 3-5 days after surgery so they get the 1:2 nurse:patient attention.
My scar is completely covered by my hair at this point, and the site of the surgery isn't sore anymore. I have great hearing in both ears, no numbness in any part of my head or face, and my teeth miraculously chew perfectly again. Even though my bite was "off" and my teeth hurt incredibly bad during the time I had TN, every symptom of having a cracked tooth or osteomyelitis of the jaw... all the things I could have sworn were wrong, are now healed. Symptoms completely gone. It is crazy.
I was a TN patient that went through about 5 months of total denial that this is the disease I had. I "knew" it was a dental problem. I even had a heat scan done of my entire jaw, with a special camera that does mammograms... it showed inflammation at the place in my jaw that I had pain, so I "knew" I had a cracked tooth or an infection. I didn't. My doctor says there is a new diagnosis out there for the first year of symptoms. During the first 4 months, when I just had a constant burning pain in my jaw that waxed and waned, he says I was in the "pre-trigeminal neuralgia phase" of the disease (I had thought I just had TN type 2). When it progressed to the lightning strike hot white flashes of pain, that for me would strike over and over again for about 2 hours, and then leave me with the burning until another attack, I was in the full trigeminal type 1 phase of the disease.
TN is curable, but you have to act fast. My friend and mentor, who told me about Dr. Alksne, said her pain was so bad after 4 months, she had the surgery then. When Dr. Alkne got to her blood vessel, it had actually grown into the trigeminal nerve... it wasn't just sitting on the nerve like in my case. Can you imagine if she hadn't had surgery then? There is no amount of medication that would have helped her once the blood vessel actually grew through the nerve, and probably Dr. Alksne wouldn't have been able to move it away from the nerve and fix it. As it is, she has been completely TN free for 1.5 years, and says TN is a distant memory for her. That's what I wanted, and that's why I called Dr. Alksne.
The surgery is not fun. For about 3 days, it feels like a truck just hit you. There can be complications. If you have had the disease for a while, the nerve may be quite damaged already, and that will still take time to heal. But compared to the pain of TN, a few days of discomfort is an easy choice compared to a life of unbearable agony.
Michael said:Hello Bonnie,
Did you go through with your MVD procedure? I am grateful for your post because it gives me some valuable information, especially knowing the doctor does not use Teflon or Titanium. I had a bran surgery over 12 years ago and the doctor did use titanium (supposedly a plate with screws). I had a epidermoid cyst (actually I still have it since it could not be removed as it is involved with the nerves) and that was causing TN. The TN came back again over a year and a half ago (summer 2014) and I have had a couple MRI's since. This time the TN is in the right side of my face. Over the past 1.5 years, it has come and gone. But in January it came back pretty bad. The neurologist prescribed me with Gabapentin - it helps, some. I am disappointed with the neurosurgeon who I saw (not the one who did the prior surgery - he referred me to another at the same hospital) because he was not patient with me nor did he seem to read the MRI correctly. I had to contact my original neurosurgeon and demand explanations. I am looking for a neurosurgeon who I can count on. I may have to travel to NYC, NY or some other area to get some neurosurgeon who is compassionate, takes his/her time with you, and recommends the right procedure. My neurologist says that the blood vessel is not pressing on the nerve, but the neurosurgeon says that may not be the case. It leads to me wishing to get a straight answer and not getting the run-around.
Please let me know how you are doing.
Michael