Trigeminal Neuralgia Community
12 years after microvascular decompression
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12 years after microvascular decompression

Twelve years ago I had microvascular decompression of the left trigeminal nerve. I was 26 years old. I had mostly sharp shooting pain episodes, and an underlying constant burning pain. The surgery got rid of the pain. This year, the pain came back, only this time, the constant burning episodes were more distressing than the sharp shooting pain. Neurontin seems to have dealt with a lot of the stinging, shooting pain and bug crawling sensations, but I still get days of burning pain. My questions-
Can trigeminal nerve pain feel like it is behind or around the eyeball?
Is it unusual for trigeminal nerve pain to change from being mostly sharp and shooting to constant burning along the path of the nerve? Also new is when I do get sharp shooting pain episodes I often get them in my teeth.
I was later diagnosed with bipolar disorder disorder and was on anti-seizure medications for many years. Could it have been masking the return of pain after the MVD? Because I changed to lithium and the nerve pain started showing up.
Can the weather trigger pain? My burning pain episodes, which are very uncomfortable, come on days or the day before stormy weather. Perhaps the pressure does something to the sinuses that then trigger the pain? Because I did trigger an episode once when I sneezed and felt sinus pressure. I am certain it isn't sinus pain, though.
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17 Comments Post a Comment
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467070_tn?1224628977
I know this doesnt answer your qustion , but how did you develop Trigeminal nerve pain ?
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605458_tn?1265086851
I am not sure of your question. When I had surgery they found two blood vessels wrapped around my trigeminal nerve. They put padding between the blood vessels and the nerve. So, the theory goes that the over the years the blood vessels rubbing against the nerve wore down the covering of the nerve that keeps it from going off improperly, such as telling my brain that a breeze from a ceiling fan is actually a painful event.

Now, how it arrived for me the first time was one evening when I was in my mid twenties. I was outside a theater, it was winter so it was cold, and when I looked up at the marquee I squinted to read. I suddenly had a sharp shooting pain in my temple and moving on the my cheekbone area. It was excruciating and repeated over and over, second after second. I grabbed my head and went to my knees. It kind of freaky for the strangers around me. It freaked me out too. It lasted for a long time, that first one. Hours, but the intensity decreased. That was how it all started. This time around it is actually the constant burning pain that is my biggest pain. I read that it was thought that over time it often changed from sharp shooting primarily to the burning type.
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467070_tn?1224628977
I have the burning all day long in my right side gums, it hurts like hell, and my teeth , I can feel  a " tapping " sensation underneath my fillings ., as if the nerve is going to explode . Cold air blowing on my teeth ......forget it, its now fall in New York, and I dont know what Im going to do. This is a nightmare that I cant wake from.  Any kind of vibration on my teeth will set it off worse . I have a butcher dentist to thank for this one . The nerve is so inflammed / injured ? damaged ? that since March my glands have been swollen also .........Nice Right ?
It feels as if I have suffered a first degree burn in my mouth . Explaining this to people ....they'll never get it . ( unless they get it )
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605458_tn?1265086851
No, unfortunately, they won't get it, they CAN'T get it. In my case, I basically explain FIRST, no, it's isn't a headache, a migraine, or something a narcotic will relieve. Second, I give them the quickie version-

"Where the nerve that feeds my face comes out of my brain, well, I have two blood vessels wrapped around it and after years of those blood vessels rubbing, they wore the protective barrier that covers the nerve so that now, it is hypersensitive and sometimes interprets messages wrongly, such as interpreting a breeze as something more serious. It sends out a message to my brain that it's something warranting a pain signal. I take a medication to help suppress and slow down those pain messages."

In your case, it would be "When I had a dental procedure my nerve became irritated and it now misinterprets some things as painful, such as a cold drink."

If you haven't read 'Striking Back', I recommend it. It will go over just about every kind of facial pain- including what you describe, and their treatments in detail. It is put out by the Trigeminal Neuralgia Association.

From what I recall, damaged nerves can take their time healing. The nerve might never heal completely, or heal but still give you problems. I don't think there is any way even a doctor can give you time frame, just help you get through what you are experiencing at the time and hope the nerve does heal eventually.
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Avatar_f_tn
HI I've had facial pain now for 4years from a dental extraction/infection/retained root/infection/surgery to close the hole.  I've tried meds, acupunture, botox, nerve blocks, cold turkey and chronic pain rehab and now my last resort is a neurosurgeon consult in Oct.  I hate how I feel on these meds and I try to take the least so I can continue to work so i'm in pain all the time at various degrees.  My hope is that someone can tell me where or what can be done.
dina
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605458_tn?1265086851
I hope you get that. A neurosurgeon is probably who will be able to give you the most information.
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467070_tn?1224628977
I have actually received some literature from the TN association in Florida . I dont know..........it's hard for me to beleive what's happened still. I have the chronic type of TN.   You know , for me I think , " damn, it's been six months already, when is this going to stop , when am I going to heal , AM I going to heal ?'
I suffer from depression, and this has made it so much worse. And like our discussion before , people just dont get it. They just say, "so , your in pain , that's all you focus on "
That's when I really want to go off . Being in this Type of pain is like you said, and I strongly agree , CANNOT be controlled by the highest dose Percocet, Vicodin, NOTHING !!!   I do not like the side effects of the Tegretol I take . The Lyrica ***** . My neurologist wanted to keep going up , and up on the doses !! I ONLY WEIGH 105 pounds !!! MY face has broken out bad , my hair has been falling out , the nausea from those meds, and stomach upset ....
To Dina902 ,
   Deff. go see the surgeon, and hang in there .
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Avatar_f_tn
Thank you for your support both of you.  I am taking Lyrica too and the side effects from all of these drugs are just too much for me now.  I live in Maine and I think I'm the only one in this state that has heard of TN.  I dont have much confidence in Docs anymore, they all said the nerves would regenerate within a year or so.  Its been 4 and its getting worse.  The winter is hell.  I'm seriously thinking about moving south even thou that means moving away from family.
Raquel-Cymbalta has helped with the depression side of this illness for me.
Take Care
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Avatar_n_tn
I have had so many diagnosis!  Finally, the pain management I see, said, "I think you have peripheral neuropathy ." I asked my neurologist about that, and he said "yes."  I keep telling doctors of my miagraines,
pain around my right eye, pain in my right temple. Oh, I also am depressed and have taken "100's" of antidepressives, including Lyrica, which caused me gain also 50 pounds before I stopped taking it since it was not working; and then there was my "deadly" attempt at taking Cambalta, which caused me to be suicidal and try twice to jump out of out car going down the interstate at 70 miles an hour!  I also have fibromyalgia. At this time, I have taken seriod injections in different locations in my spine with very little help.  I have just found that I have two bone spures on my cervical vertebra numbers 3 and 4.  I have  problems at lumbar number 5 and sacral 1.  I have so many problems, I can't get the doctors to listen to me, and I think I have TN also. I am taking Hdrocodone 500mg and 1500mg of Neurontin, 25mg of Prozac,
and 0.5mg of Clonazepam, plus various other meds. It does help some, but that is a lot of pain medicine. I hope you find help soon; and all the others too.
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605458_tn?1265086851
Thanks. I am doing well on a pretty low dose of Neurontin. I'm hoping it stays that way and I won't have to resort to another surgery. When I went through this first time around, I was diagnosed with sinus infections that didn't exist and then it was blamed on my history of depression at a time when the only that was depressing me was pain, but this was all Humana's doing. They were avoiding the expense of a procedure that would have ended my pain.
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467070_tn?1224628977
I am actually on 50 mg. Zoloft , and that really doesn't help. The doctor claimed that  it " helps " with nerve pain too. ******** .
All of the doctors ( neurologist ) are drug pushers anyway . It's not them feeling the pain . I really think , and feel like my doctor does not care . Does he think I'm ecxagerating the pain ? I wonder.....because this pain , is worse than my sciatica that I have from time to time. And back pain is a *****.  This pain can really  drive someone to the unthinkable . There seems to be quite a bit of people on Medhelp with TN ....?  It puzzles me why there arent more choices as  far as pain management goes . AND , if all dentist are taught about TN, why arent people warned about it ? Even if it's " not common " ????? Has the A.D.A been hiding a nasty secret ?
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605458_tn?1265086851
From what I understand, the antidepressants that are used for pain control are the tricyclics, not the SSRIs. My neurologists haven't been drug pushers at all, neither was my neurosurgeon.

When I was first experiencing the nerve pain of trigeminal neuralgia, the pain was bad enough, but the jerk dr from Humana was the one that put me in a state of contemplating suicide. Made me feel like it was ME.

No, I don't think the ADA is hiding anything. Doctors and dentists learn about the disorder and then rarely ever see it in practice.
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467070_tn?1224628977
Your lucky your neurologist have not been pushing the drugs on you . I was given Neurontin by my first neurologist , but it made me very ill .

I may need to go up on the Zoloft , but, I dont know . It does not enhance the effects of the Lyrica , nor the Tegretol that I am on , at all . My neurologist had said that he thinks that I will heal from this .......How can I beleive that ? Everybody , from what I read suffer for years and years , and have to rely on meds ...?

Even if the A.D.A is not hiding this , I truly believe that anybody having dental work done , should be warned , that this could happen . " although rare "

I used to have Humana ......what happened ?
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605458_tn?1265086851
When a nerve is damaged by something like dental work, it is true that it can heal, but nerve healing can take a lot of time. Some people have it and have to stay on treatment for always, some people don't.

Humana gives their physicians monetary bonuses for using less money. If they keep expenses below a certain point, Humana gives them money, so they will avoid sending you for tests, consults, and procedures you need to get better. They will insist on the cheapest treatment, like medications, even if they aren't working and/or one procedure will stop the pain. I suffered needlessly for a year while Humana physicians treated me for sinus infections I didn't have, and finally telling me the pain was caused by depression, not anything physical. Because I am a nurse, I knew better but began to doubt my own judgment. I did insist on a consult to a neurologist. The Humana doctor tried to talk me out of it, a consult to a specialist costs money and so will the MRI he will order that I should have already had. The neurologist told me I had Atypical Facial Pain- a classification of trigeminal neuralgia. When I returned to the Humana doctor feeling triumphant, he tried to lie to my face. He tried to say the neurologist agreed with his diagnosis that it was related to depression. I called him out on that lie. The very second I could change insurances, I did. Within the week I was in a doctor's office that wasn't getting kick backs for avoiding necessary treatments. She immediately diagnosis trigeminal neuralgia and within two weeks I am in a neurosurgeons office, THE man to see for this problem. I had microvascular decompression of the left trigeminal nerve. There are two blood vessels wrapped around the nerve that have been rubbing and compressing for years until the protective layer wore away. They put to teeny tiny cushions between the nerves and the blood vessels. The pain is immediately gone. I should have sued Humana for pain and suffering, but instead, I waited a bit until my anger was down some and I wrote that Humana doctor a letter about the suffering he caused me.
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467070_tn?1224628977
That's horrible that you had to suffer in pain for that long , just so the creep doctor you were seeing could reep benefits , what a dirt bag .
Dont feel bad , when this pain was inflicted upon me by the dentist , my therapist of almost ten years had told me I was psycho somatic . That the pain was in my head too . It was only then , that I had gone to the neurologist , and found my diagnoses , that my pain issue became " real " .

Lets just say I am seeking therapy else ware .

Now , with my current neurologist , I had to pretty much beg for a nerve block because he wanted me to keep taking meds for about four more months . To me , it seemed very sadistic of him untill I did my research. I found that doctors do this to see when " remission " sets in .........I did not know this. None the less , my pain is so severe , I feel I cannot wait four months to see if remission sets........I have severe pain in my teeth just on the right side . Im not looking foward to the holidays . Im scared about the nerve block . Lately , I've been taking vitamin c , and soon I will buy some b-12 to take as well. I dont smoke, drink, etc......I eat ( what I can eat ) is I would say healthy , I only eat one meal a day, the rest is Ensure drinks , but everything must be soft, and vegetables , I have to cut up very small to avoid chewing . My jaw is so sore . All chewing is done on the left .

I keep thinking of how nice it would be to take my son for a walk , but the thought of the cold air blowing on my face/ teeth sends me into a panic .

How long ago did this horrible situation happen w/ Humana, maybe you can still sue ? You suffered , and they need to pay for the mental / physical trauma they caused you  !
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Avatar_n_tn
A related discussion, Questions About TNA was started.
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Avatar_f_tn
trigeminal neuralgia is a anomaly within your head from birth or whats called a congenital anomaly or birth defect. in tends to run in families I and my sister both have this and 2 years ago I too had a vascular decompression. it can occur because a vein or an artery grew over or under the trigeminal nerve bundle during development of your body hence (congenital) as your heart beat the vibration or pulsating movement against the nerve was constant and resulted in the wearing down of the myelin sheath or covering over the nerve once this has worn enough the nerve can no longer tolerate the vibration and begins to seize. this is why anti seizure meds are given, to stop the pain and if you are able to take the medication it will work well until the state becomes so severe that that too will fail. nerves are so sensitive they can't even tolerate a soft whisper of a wind touching them. unfortunately these meds can have serious side effects and as with me were beginning to cause neurological damage such as loss of balance and slurred speech and stuttering. I had a 2yr. success with my MVD or (nerve decompression) but mine is back and unfortunately for me that was the most successful treatment that is available outside of burning the nerve, which is what I am now facing. I am putting it off at the present time with pain meds that only reduce the pain and are highly addictive. I know that at some point I will have to have the nerve burned and am not looking forward to the permanent side effects but, I also know how horrible a lightening flash of pain so severe that you involuntarily let out a scream and gasp every 60 to 90 seconds and last for hours is and I now know why this is called the suicide disease. people in the old days committed suicide because the pain is historically recorded as some of the most excruciating pain there is! as for those who are experiencing pain after treatment my advice is to go back to the neurosurgeon and see what he or she has to offer you and decide from there.
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Avatar_f_tn
Just to clarify, TN is not only genetic.  TN can be caused by an underlying disease, such as MS or a tumor.  TN can be caused by an injury.  TN can be caused by a vein or blood vessel compression.

But don't lose hope.  Just like there are many causes, there are many possible solutions to your pain.

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