Such a wonderful story. Very well written and I loved the thoughtful illustrations.
I can’t explain how exactly I felt after reading your blog. It was like words in my head being read on this page! It’s amazing to know that a total stranger can know exactly how you feel when not even your closest loved one can understand. Mybell I’m also considering MVD as I am currently failing medical conservative treatment but I am so very scared of going that route as well. However I too research extensively before making a definitive decision. Your thought processes were well-documented and I fully appreciate you revealing your doctor. I don’t live in the US so getting an appointment with such celebrated doctors may prove a challenge, especially as it is not covered by my insurance however reading stories like yours reminds me that I need to fight and never give up and surrender to this atrocious disease. One day I too hope to be a survivor of TN and I pray for us all that there will one day be a cure.
Strength and courage to us all in our darkest days and always just keep swimming 
I had a friend who had this surgery and it only lasted 3 years and she states it can not be repeated is this correct?Also alot of possible complications?Glad for you that yours helped.
FANTASTIC!!!!! So glad you also had a successful MVD. It's a huge decision but one I'm so thankful for every day, Congrats!!
I applaud your bravery in sharing your TN story. For me, I'm not there yet. This is the first thing I have read in years since my MVD surgery. I'm afraid to jinx my results. I'm afraid the pain will come back if I talk about it. Crazy, I know, but I have complete anxiety regarding this. So, my congratulations to you for soldiering through and telling your story. I know you will help many people by sharing it. Maybe I'll be ready some day.
Don't let not seeing a compression on an MRI be a reason for not doing an MVD. I live in Michigan where Dr. Casey is and I know even he will tell you that they don't always show up on these tests, in fact many times don't. As you said keep looking for another neurosurgeon that is willing to go further! Dr. Casey was not my surgeon, but I havehad an MVD without seeing a compression. It was not obvious until my dr. opened me up. I have been pain free for 2 years now.
Awesome so glad you did this thank you.
Mybell, congratulations!!
You did a fabulous write up, very well written!
I remember we had our MVDs within months of each other. There was quite a group of us at that time remember? It was so nice to be able to go through the decision making process and all the emotions etc together here at LwTN.
I continue to be so pleased when I read of your success and and well being! Thank you for investing the time to write up an informative piece that includes your personal story and all the emotions that go along with that. You’re willingness to share your positive experience and continuing to support others who suffer is much appreciated!!
Your a sweetheart, and I think of you often Mybell, thank you,
Big ((((( hugs )))))), Mimi
I loved it!
I could literally change a few sentences and it fits how my journey went.
Dr. Casey, and this site
Gave me my life back in just over a year from
Diagnosis to operating table!
Here is to keeping this in remission for our remaining days !
4 years and counting!
Kimberly
Your extremely well written piece certainly brought a flood of emotions and tears for me. My story was similar, with no apparent cause, although mine included the dental detours for extractions and a variety of physicians unfamiliar with TN and finally a diagnosis after 14 months of hell. My first neurologist explained after a couple of medication failures that "suicide is the logical conclusion to this disease" and refused to discuss MVD, for which she was abruptly fired by me. I immersed myself in research also, and found "Striking Back" which opened me to the possibility that I wasn't the only person suffering from this horrible disease. My MRIs were not conclusive. One neurologist suggested a possible brain tumor, but the location in Meckle's Cave was impossible to access. Another said he couldn't identify a problem, but could try exploratory brain surgery. Finally, my research found Dr. Hyayr Shahinian in California. I sent him my box of records and he called me to say he thought he could help me. He had performed thousands of MVDs and had pioneered both equipment and techniques that were vastly improving lives. He scheduled my surgery within 2 weeks, and I flew to California with the feeling that I had no other options and little hope. After surgery, I had some stroke-like symptoms on my left side, but NO PAIN. 4 days in the hospital, a week in a hotel and I flew home to begin PT and OT to overcome my MVD complications. Still no pain and I went back to work within a month of my surgery. Unfortunately, I was fired for being unable to work the 70 hours a week I had previously worked. My insurance refused to cover more than $1200 for the surgery, hospitalization, etc which was incredible stressful. But no pain. It took nearly a year to recover from the complications, and now I'm close to paying off the loan I had to take to pay my medical bills, but I wouldn't trade a bit of my MVD experience. On November 9, I will be pain free for 5 years. The post traumatic stress worrying about TN returning will likely always be there, but I am grateful every single day for the gift of my pain free life. I know this may not be a permanent cure for me, but I am blessed for now. I ache for all of you on this TN journey and hope that through better physician education, research and our support of each other, each and every one of you will find a path out of the pain and toward peace in your own lives.
What an awful journey you've had, Oldwater. Kudos for retaining your priceless sense of humour. I agree with you that the Zoster virus/es play a bigger part than the docs might realise. I had severe chicken pox as a child. Recently my partner, who is 59 and has never had chickenpox, came down with shingles. I know, medical miracle. The doc says he must have had a mild case and not known it; me, personally, I think he's caught it from me. I've tried to research it to see if it is feasible, but no joy so far....
Oldwader said:
As an old--very old now--newspaper editor and sometime journalism teacher and book writer, let me say first I bow to the excellence of this piece. Brava!
However, I cannot bow to its unintended optimism about Microvascular Decompression. After years of screaming and hollering when TN seized my body and raggedity remaining soul, I dumped all the potions prescribed for me and opted for MVD with the lead brain surgeon at the University of Washington School of Medicine. I went through all the nasty pre-ops procedures, said good-bye to my wife and son, wheeled away to the operating theater. Eight hours later I awoke with nurses peering at me. I hollered and twisted. TGN was still with me. The operating team was disappointed. And so was I.
Three days after being let out of the hospital, I came back, in a special ambulance, with two nurses in moon suits with me, caring for my swollen face. I had a little leakage from my brain, about a quart dragging my cheek down to my Adam's Apple. And I had a little infection from bugs that thanks to computer transmissions puzzled all the bug docs in western Washington state--hence the moon suits.
I spent the next three weeks back in University Hospital getting a kind visit from the Medical Schools chief bug specialist congratulating me on having a microbe that no one in the U.S. could identify. So for the next three weeks I was plugged into a super cocktail of bug and virus killers. It, alas, did not contain gin. And to get rid of the juice pouring past the bad plug in my skull, I enjoyed three spinal taps. A wonderful way to stay awake, believe me. I did, however, become pals with a daily parade of Medical School students of all sorts. The only thing I did not do for them was die. At last, my surgeon had me wheeled off again for another operation, this one to cement over that hole in my skull. All during this time I had my daily parade of TN attacks, despite my diet of anti-TN pills.
At last I went home to enjoy TN in familiar surroundings. The TN pills did soften the attacks. They also made me giddy, dopepy, dozy and dumb.
So two years latter, I signed up for Radiosurgery, for having the TN nerve zapped by radiation. That only took a day's prep, no brain cutting, lots of jokes with the nurses, and once over, I got up, wished everybody good-bye, and with my wife headed for a good jazz bar. The next morning we drove home. Halfway there, I damn drove off the freeway at 75 mph. Old TGN whacked me again. Predictably, the docs said. It will go away. I believed them. It did, a couple of weeks later. A month later, I was fly fishing in the Skagit River, butt deep, when whap! The TGN attack dropped me into the river. I still brag about being the only person in the world who was drowning and enjoying a tic attack at the same time.
I reverted to pills. Two years later, disgusted with them, I enjoyed Radiofrequency Lesioning, doctor talk and name for running a hot needle up the nerve while he or she asks, "do you feel that?" It is not for nothing you are wrapped in a tight straight jacket strapped to the table while you answer. The jacket keeps you from punching the doc, or jumping from the operating table, or both. After an hour of that, I could honestly answer I could not feel anything on the left side of my face. A bit tired, I trudge d off to the jazz bar again with my wife and ordered a double martini, with two olives and a lime twist. On my second such I had a TGN attack second to none.
That was in 2011. In 2012 I ferried my zapping face to a head-pain specialist in Anacortes, WA. He said he would work with me to find the right combination of drugs that might keep the pain away. After six months, we did, for me. It is Gabapentin 800-mg and Lacosamide 150-mg and Acyclovir 400-mg. (I am a big guy.) Lacosamide in this country is known only and sold only as Vimpat. Depending, it sells here for $600 to $800 for a months supply. I buy my supply in India, where, with postage, it costs a buck a pill. Acyclovirt keeps down the Herpes virus. I am convinced thatthe Herpes virus causes TGN far more often than doctors say or think about. I've had Chicken Pox, Shingles and lip blisters, nice things Herpes causes.
I add my history as a cautionary footnote to the essay we're all responding to. And to say, don't give up; and find the physician who knows something about TGN and will work with you over and over to put TGN asleep, whether with the knife or the radioactive buzz or with needle or with the right chemistry. It's better than suffering this goddamned pain.
Good advice Mimi2 and thank you. Dr. Casey is awesome!
Yes, Mimi, I do remember going through our surgeries at about the same time along with others on here. Hugs right back!
Thank you all for the kind comments! Feel free to share this article on social media to get some more awareness out there :).
You are a brave woman, Shelly! You went through a huge storm to get to where you are now. You could certainly write your own story. I know you would do it all over again too to be where you are now, 5 years without pain. So happy the pain is gone and you have your life back. It warms my heart that there are still many of us on here that are on the other side (hopefully for good) and come back here to support where we can.
Shelly Michell said:
Your extremely well written piece certainly brought a flood of emotions and tears for me. My story was similar, with no apparent cause, although mine included the dental detours for extractions and a variety of physicians unfamiliar with TN and finally a diagnosis after 14 months of hell. My first neurologist explained after a couple of medication failures that "suicide is the logical conclusion to this disease" and refused to discuss MVD, for which she was abruptly fired by me. I immersed myself in research also, and found "Striking Back" which opened me to the possibility that I wasn't the only person suffering from this horrible disease. My MRIs were not conclusive. One neurologist suggested a possible brain tumor, but the location in Meckle's Cave was impossible to access. Another said he couldn't identify a problem, but could try exploratory brain surgery. Finally, my research found Dr. Hyayr Shahinian in California. I sent him my box of records and he called me to say he thought he could help me. He had performed thousands of MVDs and had pioneered both equipment and techniques that were vastly improving lives. He scheduled my surgery within 2 weeks, and I flew to California with the feeling that I had no other options and little hope. After surgery, I had some stroke-like symptoms on my left side, but NO PAIN. 4 days in the hospital, a week in a hotel and I flew home to begin PT and OT to overcome my MVD complications. Still no pain and I went back to work within a month of my surgery. Unfortunately, I was fired for being unable to work the 70 hours a week I had previously worked. My insurance refused to cover more than $1200 for the surgery, hospitalization, etc which was incredible stressful. But no pain. It took nearly a year to recover from the complications, and now I'm close to paying off the loan I had to take to pay my medical bills, but I wouldn't trade a bit of my MVD experience. On November 9, I will be pain free for 5 years. The post traumatic stress worrying about TN returning will likely always be there, but I am grateful every single day for the gift of my pain free life. I know this may not be a permanent cure for me, but I am blessed for now. I ache for all of you on this TN journey and hope that through better physician education, research and our support of each other, each and every one of you will find a path out of the pain and toward peace in your own lives.
I had my MVD three years ago and even with multiple MRIs my neurosurgeon couldn't definitively say there were compressions until he was in my brain where he found two of them. I have been mercifully pain free on my right side since then, unfortunately my left side has decided it wants to join the party but I'll deal with that when the pain is worse. Just because it's not on the MRI doesn't mean it isn't there or that an MVD won't help. Sometimes just massaging the nerve will help. Granted, yes, it's a lot to go through just for a massage but if it stops the pain then hell, it's worth it!!!
I am so thankful things have turned out so well for you, what a blessing!! I have been suffering from typical and atypical TN for almost 6 years now. I have been on all,the meds you mentioned and then some. I had MVD surgery about one and a half years ago. Unfortunately, I didn’t have such wonderful results. They nerve was bound up by the expected blood vessel as well as a network of little veins wearing the myelin away reaching to the center of the nerve. Interestingly, my MRI was also “normal”. I did get significant relief in the occipital region, a minor amount of relief in the maxillary region, but now suffer great pain along the side of my tongue and mandibular region. My entire left side was painfully numb for almost a year post operativly, thankfully that has subsided. I still have to take the mountain of meds, battle the side affects and have some level of pain daily. I have been told it can take up to two years for an injured nerve to heal and I am putting great faith in that. Three days ago, I started having one of the worst flare ups I have had in a long time. They lightening bolts and cattle prods have put me in the bed as the pain is much worse if I am upright. If I could, I would pull every tooth on the left side of my face, thankfully I have a great dentist, he actually put me on the TN trail. When I do a big flare up, he is glad to help me rule out any possible dental problem. I am still on a journey but trust that some day I will experience healing! Thanks again for sharing your success story, I pray you continue to be pain free!
I read your story and shared it on FB requiring everyone to read it. Thank you for taking the time. I am happy for you results. I have been suffering for over three years. As a single dad with two teenage sons I have lost everything. I have been waiting three years for my Disability trial. I haven’t worked in four years, my medical expenses are about $40,000 a year out-of-pocket. The ACA allowed me insurance but I need Medicare. I have had over 200 Doctor appointments, 10 procedures and surgeries and take 4000 pills a year. I have complications and other issues all as a result. My mouth is a ticking itinerary bomb that no one will touch. The system has turned me into a hermit. I don’t ever leave my home, I have zero quality of life. The more I share with people stories like yours, the more support I feel. Good luck and what a great article.
I just want to thank you for writing your story and getting it out "there", as so many people have no idea what Trigeminal Neuralgia even is, much less how much it can impact a persons life. Your writing put everything in clear, easy to understand language, making it easier to understand for the average person. I feel blessed to have read it.
I have TN2 and always hear that MVD is not a good option for me but I am thrilled for you and anyone that is relieved of this pain. Right now, Hopkins is doing a Phase I study for patients like me, so there is hope!
Good Day,
I would like the person in MD with TN2 to contact me, please. I live in MD also and I am very interested in the Phase I project going on at Hopkins for TN2 patients, such as myself. Please message me!
Thank you.
Mybell, I am so impressed that you were able to get a timely diagnosis and that you braved brain surgery merely a year into your struggle. Some of the top TN surgeons are recommending that patients go the surgery route sooner, rather than later. I understand that that is more easily said than done. It is brain surgery, after all.
I found so much of the embedded video by Dr. Neil Martin to be questionable. MVD does not cure TN, as you noted. It was an overstatement to say that TN is not bilateral but affects only one side of the face; 5% of cases are bilateral. According to Jason Rosenberg, M.D., director of the Headache Clinic at Johns Hopkins, the mechanism for the spreading of TN from one side to the other follows the sympathetic nervous system. My daughter's TN became bilateral after 5+ years of having TN, but a mere 2 years after a diagnosis that she actually received. (The first diagnosis was from a neuro-ophthalmologist at the University of Virginia Hospital in Charlottesville. His letter was buried in Emily's surgical file.)
TN is thought to be inherited in 5% of cases. One of the major avenues of research now underway at the Facial Pain Research Foundation is in the genetics behind the disease. They are finding amazing results that could suggest treatments for TN and other pain disorders and that may ultimately lead to a cure. The other broad area of research investigations involves Schwann cells, the glial cells that produce the fatty/proteinaceous insulating substance known as myelin. Although many doctors still attribute TN to arterial or venous compression, researchers now believe that the real cause is an abrasion, or wearing away, of the myelin sheathing. While examining the glial production of myelin, the Foundation's researchers made a stunning discovery that, when a patient is in pain, the thalamus sends a signal to the glial cells (the brain's white matter) to stop producing serotonin and norepinephrine (two of the so-called "feel-good" neurotransmitters. We now know what pain patients have felt for years: there is a neuro-chemical connection between pain, depression and anxiety. The glial cell researchers may very well be on the path to discovering treatments for chronic pain, depression and anxiety. Not bad, considering that the Foundation started out by researching a rare disease. Their research findings will have broad implications for multiple diseases and treatments, including (it is hoped) a cure for TN.
Congratulations, again, for facing the Beast with courage and for having the grace to share your story. May your days remain pain-free and filled with satisfaction.
Thank you for that information, Janet. Much as I deeply value the TN forum, I often find it very depressing reading because most patients are (very understandably) generally obsessed with pain relief. However, personally, the causes (and therefore a cure) is of much more interest to me because I want to be free of the condition, not looking forward to a lifetime of medication and worsening symptoms. I read so little on research of cause and effect that any little crumb is always greatly appreciated by me. Thanks again for sharing that.
Janet McGee said:
Mybell, I am so impressed that you were able to get a timely diagnosis and that you braved brain surgery merely a year into your struggle. Some of the top TN surgeons are recommending that patients go the surgery route sooner, rather than later. I understand that that is more easily said than done. It is brain surgery, after all.
I found so much of the embedded video by Dr. Neil Martin to be questionable. MVD does not cure TN, as you noted. It was an overstatement to say that TN is not bilateral but affects only one side of the face; 5% of cases are bilateral. According to Jason Rosenberg, M.D., director of the Headache Clinic at Johns Hopkins, the mechanism for the spreading of TN from one side to the other follows the sympathetic nervous system. My daughter's TN became bilateral after 5+ years of having TN, but a mere 2 years after a diagnosis that she actually received. (The first diagnosis was from a neuro-ophthalmologist at the University of Virginia Hospital in Charlottesville. His letter was buried in Emily's surgical file.)
TN is thought to be inherited in 5% of cases. One of the major avenues of research now underway at the Facial Pain Research Foundation is in the genetics behind the disease. They are finding amazing results that could suggest treatments for TN and other pain disorders and that may ultimately lead to a cure. The other broad area of research investigations involves Schwann cells, the glial cells that produce the fatty/proteinaceous insulating substance known as myelin. Although many doctors still attribute TN to arterial or venous compression, researchers now believe that the real cause is an abrasion, or wearing away, of the myelin sheathing. While examining the glial production of myelin, the Foundation's researchers made a stunning discovery that, when a patient is in pain, the thalamus sends a signal to the glial cells (the brain's white matter) to stop producing serotonin and norepinephrine (two of the so-called "feel-good" neurotransmitters. We now know what pain patients have felt for years: there is a neuro-chemical connection between pain, depression and anxiety. The glial cell researchers may very well be on the path to discovering treatments for chronic pain, depression and anxiety. Not bad, considering that the Foundation started out by researching a rare disease. Their research findings will have broad implications for multiple diseases and treatments, including (it is hoped) a cure for TN.
Congratulations, again, for facing the Beast with courage and for having the grace to share your story. May your days remain pain-free and filled with satisfaction.