I've posted before, but it's been ages. Been through the ringer getting a diagnosis, as I'm sure a lot of you have. A new (to me) general physician diagnosed me on symptoms only about a year and a half ago, after 7 years of "suck it up it's TMJ." Anyway, tried all different meds but only Lortab has helped. So she referred me to a pain management doc. He is changing my meds a bit, but the point I'm slowly getting at is he couldn't believe I hadn't had an MRI yet. So I had one last week. They called today to say no masses, etc, but I do have an abnormal blood vessel and he's referring me to a neurosurgeon. He told me in my original visit that's what he would do if it showed TN on the MRI. But I freaked out initially of course, because anything saying "abnormal" and MRI at the same time will do that to me. LOL. But I then remembered during my research before my diagnosis, I read that abnormal blood vessels are the leading cause of TN.
But I called the neuro myself to make the appointment because I didn't want to wait. I guess I sounded slightly panicked because the sweet nurse told me if it had been anything alarming they would have sent me to the ER. As you can see, my stress levels are thru the roof, which doesn't help matters.
So I see him next Thursday. I guess my biggest concern though is that it isn't TN, but the vessel is something else. Were any of you told an abnormal vessel caused your TN?
If he confirms TN, I am very leery of surgery, even though I have several "attacks" a day. I need to do more research and look around this site more, but I wanted to see if anyone was told the same thing.
The neurosurgeon I was referred to said the same thing, that I had abnormal blood vessels. Before I scheduled for the MRI he stated that’s a good (yes he said it) sign of TN and that for some people that’s how it’s really diagnosed and for some people you can’t see it on an MRI. My MRI he looked at it and went wow, I can see why you have so much pain. I am 6 weeks out of surgery and not to scare you but I have never regretted a surgery so much than this one. But this is my experience with it and it may help for you. He told me just a few stitches on the side of my head and it wouldn’t be that bad, oh and that I would feel instant pain relief. The liar. I woke up to 18 staples and almost half my head shaved. I have extremely long hair, almost down to my butt so it’s noticeable. I have worse pain now than before. Before I had breaks between the episodes and now it’s constant. I was scared I wouldn’t make it in life with the pain and now I fear that the pain will cause me succumb to the deadly statistics. I couldn’t take it before and that’s why I begged for the surgery and now that it’s worse I am really scared. I think my surgeon was a complete idiot tho. He sold me on the miracle surgery and in the hospital he was a completely different person. We had two major arguments. He took me off my original pain meds, I also have major back problems too, and gave me Vicodin. I’ve been on oxy and methadone for over 4 years. And when I told him I still had bad pain he told me I was lying and that I was better. So hopefully ur surgeon is better and explains things a lot better to you. Please remember every persons results are different, what works for one doesn’t work for someone else. Hopefully things go better with you. Good luck
I have suffered TN for a few years on and off the pain got so bad I did not want to live anymore ,after visiting the doctor everyday and seeing a Neuro Doc I finally had a MRI scan cutting a long story short they put me on tablets 100 gm every day to slowly increase to 300 a day I was like a Zombie I couldnt work and my TN got worse every day ,
I thought this is not a life if im like this on 100 whats it going to be like on 300 and i want to work as my financial side was not good being on sick for 6 months
One day after taking my meds and having an attack i decided i did not want a life like this
My sister and i started to see a pattern with my TN it was certain words which caused me stress and vibration stress being the main factor so i decided a life with no stress would stop the attacks
So i started meditating every day without fail avoiding anything that would normally cause me stress ,i covered up my face when i went out (tied my hair back ) as one hair blown on my face triggered attacks
Stopped all medication and started leading a peaceful life if anyone wanted to argue i would walk away i started speaking
in a Quiet manner .Acupuncture as a alternative medicine and hay 6 months later im completely TN FREE my life is back to normal :) i still keep up my meditation and keep stress out of my life im not saying this would suit everyone as TN can vary but i had strong faith i could cure myself and my belief was so strong as i wanted to have my normal life back and kiss my husband which has been impossible .I was only able to do this with the help of my family as it is a very difficult disease to live with .As for you please dont stress over your MRI as this will without you realising make your tn worse ,start keeping a diary of what triggers attacks and times fod etc as this helped me GOOD LUCK
I am sorry you are going through this, many of us with TN have similar stories.
I had MRIs that didn’t show anything but when I had my MVDs (one on the left and one on the right) and the neurosurgeon found multiple compressions on each side, but note I had multiple dr visits in Chicago with no help, I flew to the east coast for help. My neurosurgeon said that MRIs didn’t often show compressions because the blood vessels (arteries and veins) are so tiny.
I can’t quite remember the name but there is a special type of MRI that they used, I think it was a fiesta MRI, not all hospitals had the machines that could do this kind of MRI.
Hi Dokie, I’m sorry you’re having such a bad pain. My “abnormal” blood vessel meant that it was pressing on the trigeminal nerve. I had MVD surgery June of last year. My surgeon told me it may not be the miracle I wanted. It did help the massive attacks, but I still have pain and am in the process of adjusting my meds. My surgeon was amazing and I had absolutely no bad side effects after. The main thing is to find a surgeon you trust. Good luck!!!
Hi i hope this finds u well…i’ve had tn for 15 yrs now. I’ve had the mvd on both sides. First side was a blood vessel like urs and the second was an artery. I started out on meds first…tegretol and gabapentin. When i got immune to the higher doses we went to surgery. It was the best thing i ever did for myself. I am pain free now and live a normal life again. If u get the chance to do the mvd u jump on it honey cuz it may be a while before the chance comes around again. The pain after surgery is nothing compared to what ur going thru now i promise u. I pray God leads u in the right direction friend and to the right doctors as well. Have a Blessed day.
My MRI was a MRIF or MRI Fiesta. Mine showed the same thing, the blood vessels. I had the surgery done at Johns Hopkins in Baltimore. I also have numerous other problems and am 63 years old. My surgery was 18 months ago. It was the MVD. I had about 50 percent relief and feel I continue to improve. Since then I have had surgery–depression of spine, lots of PT for that and other problems. I also have hemifacial neuralgia which is not painful but extremely annoying twitching of eye area. I also have a disease called Salzmanns Nodular Disorder which affects my eyes. All these things plus others add to my problems. I also have difficulty tolerating most meds as they make me a Zombie.
Each of us are different and what works for one may not work for another. I think it’s great you are seeing a neurologist, but make sure he/she has experience working with individuals with TN.
Right now I’m the best I’ve been since my diagnosis. Here’s why. I have had 6 Botox shots in the eye in the past month to help my hemifacial spasms. For some reason this also helped the Salzmanns on that side. I quit working two years ago, and it’s been nearly a year since my last surgery so I’m feeling stronger after having had two back to back surgeries. The meds I take are topamax 100 mg, zanaflex 4mg up to four times per day as needed. I have only needed two doses recently. I have had 6 pain blocks in my neck which helped about 50%. I also agreed to try a Butran pain patch which is a very low dosage of morphine. I could not tolerate it when I worked. While it makes me a little “unclear” at times, and sometimes I hallucinate, it has made a world of difference in all my pain levels. People are even saying that I’m like my old self again.
Now Botox has to be given every three months and my next dose is
January. The neurologist is going to try either in January or April to try the Botox on my trigeminal spasms, but he says it does not work as well there. I learned yesterday that something drastically through off my thyroid levels. My last reading was 1.7 which is a good place for me. I am now 14.3. We are now adjusting that starting today.
It’s all so hard. I have and am continuing to learn to take a day at a time. I have lists of activities and hobbies I can do, but for shorter periods. This can be frustrating. There are things I simply cannot do. I try to eat right and do stretching and walk everyday, although on some days I am walking like an old lady. Oh I am an old lady lol. I’m also a little paranoid because I’m sure it will change.
Remember, what works for one will not work for another. Please keep trying, however, I know it’s hard.
Dokie, my neurosurgeon opted for the Gamma Knife. At the time, I knew little about any treatments but from what I had read about MVD and GK, I was leaning that way myself. Not till years later did I ask about the MRI. I was told nothing showed up on the MRI as abnormal. Yet the gargantual pain was there. I "think" he leaned forward the GK for two reasons: 1. Nothing showed up on MRI so why open the skull. 2. There can be significant problems from MVD. From what I have read the majority don't have that negative experience, but some do. So...the GK is what I had. I slowly progressed, just like he said I should. I had very little TN pain afterwards (still on Tegretol). After 8 months he scaled me down to test the results. After 12 months I was off Tegretol completely. No surgery, no more meds. I went that way for 9 years then TN came back with a territying torture-like vengeance. He scheduled me for the newer CyberKnife, which is similar to the GK. I stayed on meds afterwards. The TN pain was better but the CK left one side of my face "mostly" numb. I still take 2 Lyricas/day (75 mg each) and one 25mg Elavil at night. So....for me the GK and CK worked as it should. Am I perfect? No. BUT....I take a small amount of meds daily. I function normally, I still go fishing weekly, go to church, work in the yard, blah blah. You get the picture. GK or CK doesn't work this well for everybody, I'm told. But neither does MVD work for everybody. If you're familiar with Dr. Ben Carson running for president you may have heard that some are trying to let it be known he got sued for malpractice 6 times out of about 15,000 surgeries. Big deal, so what? Its medicine....its not God. So nothing is perfect. Point is, one of those surgeries he got sued on was MVD. It did not work and he said there was nothing that could be done about it. Bottom line: MVD works for many many people. In some it doesn't and the results are horrible. Same goes with GK and CK. Seems a lot has to do with the knowledge of the neurosurgeon.
My neurologist explained that sometimes TN is caused but a blood vessel that bulges (not an aneurysm) and wraps itself around the nerve causing TN. He uses a brain scan (angiography) where they inject a contrasting dye into the blood vessels and they look at them. I am actually having this test done Thursday. It is only the cause in some cases and not typical in those where the TN comes and goes. Mine went away for 6 years and came back 2 months ago but he wants to do the test anyway to rule it out.
Be thankful that your MRI showed the abnormal vessel. My MRI showed normal and my neurologist said sometimes they 'docs' can't see the abnormality until they are inside (scary). Biggest advice is to research and be informed and comfortable with your treatment decision. It is your body and you are in charge of it. Stay strong and remember we cannot control everything.
This is a stressful situation, no doubt, please try and dial down your stress, you won’t be able to think straight, and it will aggravate TN.
Seeing a culprit in the MRI is actually quite a relief! Shows a reason, and that leads the way to a solution.
I have type 1 TN for 7 years or so. Caused by a compression. I had a MVD on 6/12 /13. It was immediately successful, and I had 14 months of no pain, no pills. I am currently fighting a reoccurrence. And I would happily jump on the OR table again.
Here’s what I have learned: in the right hands, if you are a good candidate, an MVD is the best option that we have. It is the most invasive surgery, however it is the most healthy surgery for the nerve. Protecting it from the offending compression. All other procedures seem less invasive, however they damage the nerve further, and if the procedure is not 100%effective, then you have a more severely damaged nerve that is now firing off more pain signals than before.
Each TN case is unique, and we cannot really compare ourselves too much.
It is imperative that you seek out the most experienced surgeon for opinions that you can. I flew from FL to MI. There were surgeons in FL who would have done the MVD, but I was only willing to put myself in the hands of someone who did this on a weekly basis, and had spent a lot of years troubleshooting this beast!
His forum is amazing! It’s how I found my “TN approved” Doctor.
Keep in touch!
TN is often caused by a blood vessel which “droops” and is rubbing against a nerve causing the pain. If you haven’t read the book, “Striking Back, the Trigominal Neuralgia and Face Pain Handbook” by George Weigel and Kenneth Casey , I strongly suggest you order it. It will answer a lot of questions for you and talk about treatment and surgical options. I’ve suffered with tn for many years and had several different surgeries. Unfortunately they have failed for me. However they are very successful for some patients. I’ve recently had a Neurostimulater implanted near my collarbone, and it seems to be helping. I’m encouraged. Good luck with your surgery. I wish you the best of results.
I was diagnosed with TN by a dentist when I was there insisting he pull that tooth that was causing that awful pain. Several visits to the Neuro surgeon I went right to the surgery. Was pain free, sorta, for about 3 years. Then it came back with a vengeance. The hell with this crap and went for the Gamma Knife. The good part is I am pain free again for how long I can't tell you that. The bad part is I have it on the other side also and getting worst by the week. I will not hesitate to Gamma Knife that side when the time comes. Good Luck. Do what it takes. I recommend Gamma Knife over surgery. In and out the same morning vs in the hospital for a couple days.
My MRI didn't show a thing and that was normal according to my neurosurgeon. He wanted it so he would know exactly where to drill the 1/2" hole for the MVD. Been pain free for over 7 years. I suffered for 12 years. The last 6 months I suffered it was so intense that there was absolutely no fear of the surgery. I almost told my son to get the guns out of the house. Only fear was that the 5% chance it wouldn't work. My surgeon is so good that he was that confident. The chance of dying (statistically) is very low, but it's also an invasive procedure, so the healing takes time, and at first isn't fun, but gets better day by day. If you can endure TN pain, then recovery pain is nothing at all in comparison! As for successful vs failed MVD's, you, and I mean YOU have to research your neurosurgeon (NS), and see if he/she is VERY well educated on MVD's as well as have TONS of MVD surgeries that they have already performed. My opinion is that a failed MVD is usually because the NS failed at locating, and properly removing the compression on the nerve or you shouldn't have had an MVD in the first place because there was another problem like the deterioration of the myelin sheath. There are very experienced, very successful NS's that do MVD's. Do your homework on who you pick. Don't be afraid to ask questions and get recommendations. I do hope that you think about it, I personally can't imagine continuing with the TN pain, when there's a probable solution to removing it from your life.
I had TN pretty bad for over 3 yrs. I refused to have the surgeries or to take any of the meds. I noticed alcohol helped a lot. My pain periods started to decrease from months to weeks and remissions gradually got longer. It got to where the trigger point was only on my one temple. After the attacks stopped I had to be very careful for 6 mths when washing/drying my hair not to trigger it again. Finally It got to where I can't trigger it anymore. U will say alcohol is bad, well no where near as bad as all these drugs U all take and some of u several drugs and the terrible side effects. I studied every one of them as my cousin who runs a hospital emailed me their whole data base on TN, all the treatments, the operations, all the side affects. I was not prepared to try any of them. I did try Acupuncture and it made it worse. That was when I thought of jumping out the window. Alcohol did it for me along with patience and persistence. U have to try and erase the memory of it from ur brain. It is a false pain signal being sent out. There really is no pain in ur face etc. The brain just signals that there is. The best way to understand it is what happens when a person has a stroke. They get pain in their arm. Why, there is nothing wrong with their arm. The pain receptor for the heart and arm are next to each other in the brain. A person may go 60 + yrs and never have pain in their heart so the brain is a little confused as it has never had to respond to this before unlike say hurting one finger which has happened since infancy and that receptor path is well established. So when heart hurts for first time msg goes out to arm as well because receptor is adjacent. The University in Manitoba Canada is a good resource with tutorials & video for Doctors. U have to know as much as them. I would say U have to know more than them. They have to know so much about so many things they can't know it all.U just have to know everything about TN to know if the are smart enough to treat U. I decided to treat myself. I tried my friends homemade electromagnetic pulser built from a camera flash gun. It gave me some relief during bad times. I also used pressure points to interrupt pain as I know a little reflexology.. If pain is on LHS with ur RH thumb and forefinger press the tendon between ur LH thumb and index finger. This is a spot used to interrupt headaches. There are spots like this all over ur body. The other one that worked for me is on ur breastbone. Just feel around till U find a spot that when rubbed hurts a little and sends a tingly feeling down ur arm to ur fingers. Another good one is in ur wrist and it will relieve all stress in ur whole arm. To find it, turn ur wrist over and with the thumb from ur other hand press tendon on inside of wrist about 4'' from base of ur hand. A few seconds rubbing there and U will feel all ur fingers tingling & some pain relief on that side of ur body. Good luck to U all.
HI-As many others can say, this is not a "one size fits all" kind of problem. I've had gamma knife 2x' s -1st successful 2nd made it worse. Then surgery - which was unsuccessful. If I had a do over I would opt for surgery first, after meds were not effective. I used gabapentin until it no longer worked at high doses. Now on trileptal, baclafen and norco. Still functioning though not at my sharpest which is frustrating! However - its managed and I can work. I've tried homeopathic, upper chiropractic, acupunture, etc. I've had it 14 years and wonder if I had just done the surgery first without creating scar tissue if mvd would have been successful. btw - 1st gamma knife worked for 2yrs. Also - find good drs that know what it is, other than what they've read about! Wishing the best for you...
My experience was that I had multiple MRIs. The first few did not really show anything, but they were used to rule out MS and brain tumors as reasons for my symptoms. Eventually, I had one that showed a tiny spot that my (then) neurologist was certain was a Schwanoma tumor. I was actually very excited and relieved with that diagnosis as it meant it was fixable! However, the location was in the middle of an nearly impossible place to reach and several neuro surgeons balked and one offered exploratory brain surgery as his best option. One said he didn't think the spot was even anything troubling because it was tiny and couldn't be causing any problems. As my TN worsened and I continued to fail medications and suffer with horrible side effects, I eventually found the dr who examined all of my records and my multiple MRIs and felt that the tiny blob was more likely a nerve compression than a Schwanoma. At that point, I really didn't care what it was, I just desperately needed help. I was told by another physician that with my over 30 lb weight loss from being unable to eat, inability to drink fluids, I was unlikely to survive more than another week. With very little hope left, and still unsure what the spot was on the MRI, I had the MVD. Afterwards, the dr said it was not a Schwanoma, but a very angry nerve compression that was now wrapped with Teflon. I have been pain free ever since, a few weeks shy of 5 years. I guess part of my takeaway understanding is that the MRI can certainly help to determine that there is a problem, but it can't always give you a clear explanation of what the problem really is. I had 5 of them before anything was determined, I believe the Fiesta MRI finally showed the problem. Many drs have little experience with TN, keep searching until you find one that has the experience to give you the best treatment options on this path, get multiple MRIs if needed, read "Striking Back" and do everything you can to research and educate yourself to be your best advocate. I certainly don't know what my future holds, but the gift I received of 5 pain free years is priceless.
I had an MRI less that a year ago, although I have been dealing with this for many years. Anyway, the
MRI was normal so I'm unsure what to do next. So far I have being depending on pain killers, but I may
it's getting more difficult as time goes by and I'm considering some other medicine or surgery?
I'm also considering going to the Mayo Clinic, most of the doctors I've seen no little or nothing about this condition.
Good luck-this is a difficult one for all of us. But we have to keep trying.
Please give Gamma Knife a try, The physicians intimately involved with TN are on the staff of these
treatment centers. I am essentially pain free with 200mg of Tegretol as a prophylaxis. I have only one
attack in the past 5 years. I increased my Tegretol to 400mg. for 2 weeks and then returned to my
current dose. All is well. As far as your abnormal blood vessel issue is concerned. This issue will be explained
to you vs the Gamma Knife procedure by the TN specialist at these centers. You need a warn welcoming
group to make you feel that there is an answer. If you live anywhere near a large city, simply place Gamma Knife
in your computer browser and you will easily find a hospital specializing in Gamma Knife.
I have seen a large push to MVD, while in current research in regrowth of the myelin sheath of the trigeminal nerve
is under study., an interesting dichotomy between MVD and viral or other damage of the nerve.
Best to you,
I have bilateral tn and I have had both the brain surgery (three time) and the Gama knife once. The brain surgery is rough to get through but it fixes the problem. If the doctor does it right, it’s really rare for it to come back. The Gama knife on the other hand masks the problem, it generally only works for 3 to 5 years and it’s what is called paliative care in other words end of life care. The only reason I got it is that it was the last chance at being able to have a bit of a life for me, but I am hoping and praying that there will be a new fix out there when this one wears off. The surgery fixed my left side, the gamma knife masks my right. I still have swelling in my face and my whole body gets this exhausted felling when I should be in pain on the right. The surgery is worth the risk. Find a good suregion and take the chance on mvd