I may be wrong on this, Jerry, but I believe MedicAlert bracelets can accomplish that. I also advice anyone who can do so, to print up a short "Emergency Medical Card" for wallet or purse, that can be folded into a small place and presented if you must get treatment or examination at a time when pain makes it impossible to communicate clearly.
Regards and best,
Red
I have been told by a bunch of people to get a medic alert bracelet. Too bad they cost a fortune.
Hello, I am new to this forum and have had symptoms of ATN & TN since 12/2009. I just stumbled across these post regarding the EMG/NCV (nerve conduction study). I had both of these test performed on my trigeminal nerve along with a jaw jerk test and, yes they were painful, especially the EMG. I haven't gotten the full detailed report of each individual test but when the nurse called to give me the results she said they came back abnormal indicating damage to the trigeminal nerve, I assumed that it was typical to have an abnormal result if you have ATN and/or TN but after reading the post above it seems that it is not typical to have an abnormal EMG/NCV with ATN/TN, is that correct? I am curious because I have not read about many others with abnormal results who have ATN/TN but then again I also have not come across many others who have even had the test. I am confused now and a bit concerned. I am supposed to go back for an MRA soon and a follow up with my neuro to go over all results. Any info would be appreciated.
Dawn :o)
From what I've read, it would be unusual to administer the EMG/NCV test for pain suspected to be trigeminal neuralgia of either primary type. This category of testing is not conclusive for diagnosis of TN. It is more often applied in investigations of systemic vasculitis or neuritis, both of them inflammation conditions.
Go in Peace and Power
Red
wow sounds like your visit was as good as mine! She told me she doesn’t even usually see people till they have been in pain for 6 years and wanted me to up my meds. I am now taking 300mg day and night. She also told me that my face should not have a constant ache through the day only shocks. Do ya think maybe the meds work and simply knumb the pain a little? Sorry you are going through this too!
Sandra, et. al.,
One reservation on the Medical Laser Center at Myrtle Beach, if I may. This outfit is very expensive and its procedure is not covered by medical insurance. Nor has this particular laser illumination technique been subjected to double-blind trials that establish its effectiveness. The FDA certification for this technique is very limited: it won't harm you, but there is no statement made with regard to whether or not it will help you.
Regards and best,
Red
Thank you for your input. I appreciate all I can learn about the Institute and the laser. I’ve had cold lasers that don’t work but do produce inflammation which in turn cause more pain in my case. My research brought up their site (it’s been awhile) and I quickly read the information and discarded it from my mind until recently. I’ve been told personal stories where this warm, powerful laser worked for them. I’m waiting for the facility to get back with me concerning costs. Can you add any information on the endoscopic procedure performed at the skull base institute in Los Angeles?
If the endoscopic procedure you are referring to is micro-vascular decompression, then yes, I can add quite a bit of information. An endoscope is basically a microscope integrated into the end of a flexible light-fiber tube. It provides somewhat more thorough examination of the vicinity of the trigeminal nerve (or other structures) than an exterior microscope that doesn't enter the skull.
Feel free to add further specific questions.
Regards and best,
Red
I am new to this site but not new to TN. I have had it for 10 years and in that time I have been thru so many doctors that have absolutely NO idea about TN that it is a crime that they even have a license to practice medicine. I would like to tell you I leave their office’s thinking oh they just don’t know but I still to this day leave crying my eyes out, which in my case makes my TN worse. The last Doc I saw diagnosed me with CFIDS and a pinched nerve in my neck after speaking to me for 10 minutes. No exam, no blood work NOTHING! I am looking for a good Doc that specializes in TN in the Sacramento California area. Anyone have any recommendations? Thank you for listening to me. Hope you find a good doc Barb!
Many pain MGMT Docs like their patients to keep pain journal so they can monitor how effective the pain meds are working.
Jerry Parker said:
Pain journal? What is the purpose of a journal? I never heard of a pain journal.
Neuros are looking to solve problems with tests and MRIs. They are not taught to read a journals in med school.
Laurie,
My recommendation in the Sacramento area would be University of California San Francisco Medical Center. At one time, one of the members of the the Trigeminal Neuralgia Association Medical Advisory Board was in practice there. I'm not sure he still is, but such people very frequently establish a circle of medical students and interns who remain affiliated even after a master teacher retires. If there is no neurosurgeon or neurologist presently on staff who has specialized training and deep experience in TN, then the department of neurosurgery is very likely to know of other area resources.
For Jerry Parker, a point of clarification. While MDs are not routinely taught to read and analyze a patient's pain journal, this is not universally true. The value of such a journal is becoming known. By detecting patterns in the pain responses of patients, insights may be provided which influence more consistently effective treatment. At the present time there is no single diagnostic test which unambiguously establishes that a pattern of facial pain is TN, some other form of facial neuropathy, TMJ, Eagle Syndrome,Fibromyalgia or Arachnoiditis. Thus the basis of diagnosis is initially patient history and pattern of pain, reinforced by short-term response to treatments known to be effective for patients with each of these disorders. A pain journal is very useful in establishing both the near term patient history, and the circumstances under which pain occurs or is moderated.
Go in Peace and Power
Red
Gosh Red thank you so much for the recommendation . I dont know how I found your response but I am very glad I did. Laurie
Feel free to come back at me with these or or other questions, Laurie. My wife is the TN patient in our family and has been since 1996. I've been writing websites, doing online research and patient advocacy for chronic facial pain patients, families, and physicians, for over 16 years.
Go in Peace and Power
Red
Laurie Barnes Keil said:
Gosh Red thank you so much for the recommendation . I dont know how I found your response but I am very glad I did. Laurie
Barb, I'm sorry you had to endure that awful nerve conduction test and even more awful doctor! I had that test done on my right leg, so I can only imagine how bad it must have been to have that done to your face! It's unfortunate ... ridiculous, really that most of us here have met with at least one ignorant and heartless doctor. I was also told I was too young by the first neurologist I saw, and I was 43 years old! The most knowledgeable doctor I found turned out to be my primary care physician. I was "lucky" enough to have a really bad attack while in her office. Y'all know the kind... where the tears stream from one eye and you're making hideous, involuntary noises like a wounded bull. She referred me to the neurosurgeon after that, even though I'd been told many times that surgery wouldn't work in my case since the MRI didn't reveal anything unusual. I had the MVD surgery which took the pain away for about two months. I still get attacks, but they are fewer and not severe anymore. The surgeons did find an artery compressing the nerve, and arachnoid scar tissue also. I felt vindicated finally knowing I wasn't crazy and there was a cause for this pain! I think what annoys me the most is when someone treats us like we should just buck up and learn to live with this. I mean, "it's only pain... not like we could die from it!"
Good luck, I hope you find the relief you need and deserve!
saw a neurosurgeon yesterday and I am being scheduled for surgery, I am waiting for the call. But I am having surgery MVD , she even let me choose 
Suzanne Marriott said:
Barb, I'm sorry you had to endure that awful nerve conduction test and even more awful doctor! I had that test done on my right leg, so I can only imagine how bad it must have been to have that done to your face! It's unfortunate ... ridiculous, really that most of us here have met with at least one ignorant and heartless doctor. I was also told I was too young by the first neurologist I saw, and I was 43 years old! The most knowledgeable doctor I found turned out to be my primary care physician. I was "lucky" enough to have a really bad attack while in her office. Y'all know the kind... where the tears stream from one eye and you're making hideous, involuntary noises like a wounded bull. She referred me to the neurosurgeon after that, even though I'd been told many times that surgery wouldn't work in my case since the MRI didn't reveal anything unusual. I had the MVD surgery which took the pain away for about two months. I still get attacks, but they are fewer and not severe anymore. The surgeons did find an artery compressing the nerve, and arachnoid scar tissue also. I felt vindicated finally knowing I wasn't crazy and there was a cause for this pain! I think what annoys me the most is when someone treats us like we should just buck up and learn to live with this. I mean, "it's only pain... not like we could die from it!"
Good luck, I hope you find the relief you need and deserve!
Red,
I have found Dr. Samual Cirricillo who is a neurosurgeon who specializes in this are. He is from the University of SFO. He has trained many new docs there and spends quite a bit of time there. He has an office about 17 miles from my house and I have an sppoiontment with him on May 10th st see about the Gamma Knife or severing the nerve. I dont know which way to go so I will ask if you have any insight to either of the procedures? I have just lost another doc who has thrown his hands up in the air and doesnt want to treat me any longer. This has happen to me twice now. I am tired of pain mgmnt docs deciding if I am gonna be in pain all month or if they can see it in there heart to help me. I have a particular troubling case. I have atypical post herpetic trigeminal neuralgia. v1 v2 sections. it all started with a case of shingles on my face and in my mouth 10 years ago. I have never been the same since. Thus I am so utterly wore down from constant pain I feel like and I look like i HAVE BEEN RUN OVER BY A TRAIN. oops caps.
Thank you for your time
laurie
to
Richard A. "Red" Lawhern said:
Laurie,
My recommendation in the Sacramento area would be University of California San Francisco Medical Center. At one time, one of the members of the the Trigeminal Neuralgia Association Medical Advisory Board was in practice there. I'm not sure he still is, but such people very frequently establish a circle of medical students and interns who remain affiliated even after a master teacher retires. If there is no neurosurgeon or neurologist presently on staff who has specialized training and deep experience in TN, then the department of neurosurgery is very likely to know of other area resources.
For Jerry Parker, a point of clarification. While MDs are not routinely taught to read and analyze a patient's pain journal, this is not universally true. The value of such a journal is becoming known. By detecting patterns in the pain responses of patients, insights may be provided which influence more consistently effective treatment. At the present time there is no single diagnostic test which unambiguously establishes that a pattern of facial pain is TN, some other form of facial neuropathy, TMJ, Eagle Syndrome,Fibromyalgia or Arachnoiditis. Thus the basis of diagnosis is initially patient history and pattern of pain, reinforced by short-term response to treatments known to be effective for patients with each of these disorders. A pain journal is very useful in establishing both the near term patient history, and the circumstances under which pain occurs or is moderated.
Go in Peace and Power
Red
Good Morning, Laurie,
Good to learn that you've found someone to talk to via UCSF.
I don't know Dr Cirricillo personally. However, I would caution you that the success statistics for all forms of surgery against post-herpetic neuralgia are generally crummy. And no less an expert than Peter Janetta has told me that Gamma Knife is sometimes associated with wide-spread lesions and adhesions outside the immediate target area of the procedure, leading to recurrences or later worsening of pain.
If the Shingles virus is no longer active (which can be determined from blood tests) then it is likely you are dealing with atypical TN or some variant on generalized neuropathic facial pain. Surgical success statistics for atypical TN also aren't great, though they are above "zero". With pain as long as you've had it, you'll likely be in the "high risk /low return" end of that bell curve, unfortunately.
Intuitively, I would think you probably need to let this doctor tell you his recommended course of action FIRST. If he recommends Gamma Knife, ask him for outcome statistics in his practice, based on long-term followup surveys administered to all former patients, and the important factors in your specific presentation of symptoms. Likewise, ask if he or members of his team do "partial nerve section" and its variations, and what those outcomes have been.
Go in Peace and Power,
Red
The shingles virus is still ACTIVE! I am told by some docs its HSV-1 others say VZV (shingles) in any case when I have the breakouts in my mouth, nose, lips, gums eye, the pain is SEARING, unbelievable PAIN. I am beat up and wore down. Red, I absolutely can’t live like this anymore. I get one breakout after another while on 4 grams of Valtrex per day. My pain mgmt Doc that I have been seeing for the last year is starting to loose trust in me with my drug regiment. He wants to put me on Suboxone(?) I think that’s the name. He came at me out of the blue and hit me with it last Wednesday. I had a day with no pain and it happened to be during my last visit with him so I told him my pain level was zero. He immediatley lowered my Methadone from 150 mgs per day to 90 and took away my Dilaudid. Throwing me into withdrawals causing yet another breakout. So I faxed his office to ask for help on what to do because I now had a breakout, pain and withdrawals. No one ever returned my calls or fax. So during this months visit he hit me up with the Suboxone idea and taking away all my pain meds. He also said something about people who are on long term Opiate therapy their bodies start to react differently to pain, its like your brain registers pain at an exaggerated level (cant remember the name of this ) He wouldnt even look at me. I have no idea what this Suboxone is, when I asked him his reply “It will rock your world”. very professional. I really didnt ask many questions I just cried the whole time. I am so tired and beat up from this disease I honestly dont feel I can go on any longer. I need a change thus I contacted Dr Ciricillo. I just can not take having some Dr who is in a bad mood that day control whether I am gonna be in pain or have some relieve from month to month. Why did he screw with my meds when I was at a good level and out of pain. Do you know anything about this drug Suboxone? I cant tell from looking at it on line whether it is a pain med or an addict med. An addict I am not, I hate taking all these meds, all I wanna do is sleep. Physically yes my body is accustomed to having Methadone in it because I have been on it so long. So in short yes I still have Active hsv-1 or vzv both show up in my blood work. I cant find an internal med doc or an infectious disease doc who can help me control the breakouts. I get at least 3 per month. Just as soon as I heal I breakout again. Got any ideas on how to help me? I have read all your post and you are the Bomb! I would love your feedback.
Yikes! I do not know with certainty where your doctor is coming from, but it would appear that he may have concluded you have become dependent upon opioids to such a level that you may be abusing them. Authoritative data at http://www.rxlist.com identify Suboxone as a Class III controlled substance, prescribed to patients who have become drug dependent. I urge you to go to rxlist and read their material on Suboxone. Like Methadone, this med is used primarily in treatment of opioid addiction.
Prominently featured in the information at RxList is the following:
---Begin Extract----
"SUBOXONE sublingual film is indicated for maintenance treatment of opioid dependence and should be used as part of a complete treatment plan to include counseling and psychosocial support."
...
Treatment should be initiated with supervised administration, progressing to unsupervised administration as the patient's clinical stability permits. SUBOXONE sublingual film is subject to diversion and abuse. When determining the prescription quantity for unsupervised administration, consider the patient's level of stability, the security of his or her home situation, and other factors likely to affect the ability to manage supplies of take-home medication.
Ideally patients should be seen at reasonable intervals (e.g., at least weekly during the first month of treatment) based upon the individual circumstances of the patient. Medication should be prescribed in consideration of the frequency of visits. Provision of multiple refills is not advised early in treatment or without appropriate patient follow-up visits. Periodic assessment is necessary to determine compliance with the dosing regimen, effectiveness of the treatment plan, and overall patient progress.
Once a stable dosage has been achieved and patient assessment (e.g., urine drug screening) does not indicate illicit drug use, less frequent follow-up visits may be appropriate. A once-monthly visit schedule may be reasonable for patients on a stable dosage of medication who are making progress toward their treatment objectives. Continuation or modification of pharmacotherapy should be based on the physician's evaluation of treatment outcomes and objectives such as:
If treatment goals are not being achieved, the physician should re-evaluate the appropriateness of continuing the current treatment.
Physicians will need to decide when they cannot appropriately provide further management for particular patients. For example, some patients may be abusing or dependent on various drugs, or unresponsive to psychosocial intervention such that the physician does not feel that he/she has the expertise to manage the patient. In such cases, the physician may want to assess whether to refer the patient to a specialist or more intensive behavioral treatment environment. Decisions should be based on a treatment plan established and agreed upon with the patient at the beginning of treatment.
Patients who continue to misuse, abuse, or divert buprenorphine products or other opioids should be provided with, or referred to, more intensive and structured treatment.
======End Extract==========
If your doctor has not set up a monitoring plan for you, then he may be in violation of medical ethics as well as accepted best practice standards. In candor, I can neither conclusively contradict nor confirm his assertion that long-term use of opioids causes pain hypersensitivity in patients. However, from talking with a number of patients on long term opioid "cocktails" for chronic pain, I can say that I have not heard reports to this effect. I'll try to do some online research to clarify my knowledge in this area.
The medical science behind anti-viral agents is really still in its infancy. In addition to your consult with Dr. Ciricillo, I think you probably need to be worked up by a major regional medical center such as Mayo, Cedar Sinai, or Johns Hopkins.
I wish there was more i could do for you immediately, Laurie. But this is what I know now...
Go in Peace and Power,
Red
I have been told there is a big shake up going on here is Sacramento CA cause a pain mgmt doc lost her license for over prescribing. He mentioned her name and said he was not gonna end up like that. I have never been short pills, filled early nor misused my medications. I am bewildered. My family is furious. I have done tons of research on anti-virals and when I spoke to him about it he laughed at me. I think there is a miscommunicati0n going on because he intimidates me so I never say much when I am in his office. He is mad at me because of my fax I sent. I was pissed he put me into withdrawals and then I couldnt get a call back so I faxed his office and I was mad. I dunno I may need to switch pain mgmnt docs. This is the last thing I needed, now I have been down in pain since last Wednesday fron getting so upset I got a breakout and had bad pain again.
I want to thank you for your time. Plus the info on the gamma knife surgery.
laurie