More "Red Sense" - A Post I Didn't Want to Lose from Awhile Back - Priceless. Thanks, Red

I wanted to keep this post of great info available to all of the NEW MEMBERS. Thanks for caring, Red.

Comment by Richard A. "Red" Lawhern on January 30, 2011 at 5:10pm

One additional thought for Stef, in answer to your original question. I've talked to many patients over the past 15 years who have received opioids or Methadone as elements of a pain management "cocktail" administered by pain specialist. Oxycodone and other NSAIDS do not work for everyone. But it would be a basic malpractice to claim that they work for nobody.

Likewise, be aware that although MVD probability of success is low-ER with atypical TN than with classical TN, "lower" is not zero. No less an expert than Peter Janetta once told me in a personal conversation that if a patient has ever had a "component" of typical TN pain (volleys of lightning-strike electric shock stabs), then they should be considered candidates for MVD, even if the character of their pain is no longer that of classic TN. The probabilities of successful outcome are more limited in ATN, because other pain mechanisms (or perhaps additional mechanisms) than direct nerve compression are probably operating in ATN patients. But for some patients some of the time, even a 50-50 crap shoot is an acceptable chance,

A key consideration in choosing MVD with ATN is the care that the neurosurgeon has exercised in doing follow-up surveys of long term patient outcomes. If it were up to me, such follow-ups would be legally required of all neuro-surgeries by all doctors ALL THE TIME. But it is obviously not up to me. For the patient who is concerned about making a decision, reliable measures of past success are highly important. It is never out of order to ask "how many patients have you treated who have presented as I do, and what has been your record of documented successful outcomes? How do you know?"

Just my two Red cents, for whatever they're worth...

Good evening...

Red

Hi Red, I just read your post from April 14 2011. I have an appointment with a neurosurgeon on May 10th to discuss my surgerical options. My TN is a little less typical than others. Utilizing your advise I am seeing Dr. Samuel Ciricillo he is well known in California and has an office in Sacramento although he does work out of UCSF. I have Atypical Post Herpetic Trigeminal Neuralgia that has been caused by drug resistant disseminated HSV-1. What a mouth full. so thank for the two cents you posted regarding surgical options. I will keep everyone updated.

thank you

laurie keil

Hi Red,

I just joined the TN group for support regarding my moms ATN. I have a question regarding surgeries and would appreciate your opinion, advice when you have a moment. I have tried to email you/ add as a contact but I can't seem to do so.? Still trying to learn how to navigate on this site. Thanks

i am new to the board. can you help guide me with ATM meds. I just started a small dose of tegretol. i am on narcotic based meds

is there anyone from NY or Fla. Im tring to clear up my diagnosis and see if there is anything that can be done.

pWith so many things that are physically wrong such as swallowing, pinched nerves, neuropathy, and i did have an abnormal emg. I was considering having a specialized nerve test and seeing dr. aaron filler. This would be very costly and I am not sure it would work. I am still depilitated from the spine component besides the facial pain.

Tell me please, what diagnoses you have received up to now. In what way was your EMG "abnormal"? And of what nature is your spinal pain?

Normally, the primary drug treatments for Atypical Trigeminal Neuralgia would be mixtures of an anti-seizure med like Tegretol or Oxcarbazepine, with one of the tricyclic antidepressants such as Amitriptylene. It is quite unusual for narcotic meds to be offered as the first line of defense.

For chronic face pain, the Trigeminal Neuralgia Association has members of its Medical Advisory Board in both New York City and Florida. Start with http://www.fpa-support.org and look for their "find a doctor" page.

Actually, the link at TNA is http://www.fpa-support.org/about-tna/tnas-medical-advisory-board/

Regards, Red

How do i find the article?

I find the Tna board not extremely useful because you dont know very much about the doctors. i understand the definitions,but not how to diagnose anything. dr. Brown did a stand up Mri and it was negative.My symptoms indicate branches of TN or FN.

I can send you my facial emg but I would want it private.

One shoulder is higher than the other. Nerve pain on back right shoulder. Tight shoulders.Painful extremities. Special Surgery ruled out the spine as cause.

Desperation makes me ready for surgery as well. I dont want to be worse, but pain is a big issue.

Has anyone used drips or pumps for pain?

Elaine, I regret that I do not have the training or experience to offer interpretations of your medical imagery. What I believe I know of trigeminal neuralgia and face pain is captured in the "Help With Research" tab at the top of this page, with help from Gloria E and Stef. However, it would appear that you are dealing with issues much wider than my research and study have taken me through before.

Regards, Red



Richard A. “Red” Lawhern said:

Lui, before you can send email to someone here, you need to invite them as a "friend", much as you do on Facebook.

I've looked at your profile, so I have some idea of what your Mom is up against. If you have a specific question, you can post it in this thread, or through my web gateway at ■■■■■■■■■■■■■■■■■■■.

Anticipating one question, I would say that I believe not many neurosurgeons would view MVD as an appropriate treatment for post herpetic neuralgia, particularly not after other procedures have already been performed. Increasingly, surgeons are resisting the use of surgery for Atypical TN as well.

I'll get back to you... I have guests coming in the door.

Boy or boy, did you hit the nail on the head Richard when you say that surgeons are resisting the use of surgery for ATN. I pretty much told my neuorosurgeon in may that I was done with the nerve and wanted to severe it. His response was and I quote:" If this is what you want done, you will have to go to someone else, because I will not do that".

Severing the nerve isn't a terribly good idea, Min. Neurectomy has an established record of causing what is called "deafferentiation" pain when the central nervous system tries to find ways to route "around" the interruption of sensor pathways between the brain and the distant nerve endings. Such pain can be even worse than ATN itself, as hard as that may be for some of us to believe. So your neurosurgeon had good reason for the position he took on such a procedure.

Regards and best,

Red



elaine48 said:

Has anyone used drips or pumps for pain?

elaine48, Steve McCrystal on the www.fpa-support.org web site has a blog on his pain pump that includes his results with changes in doses. He also makes frequent entries in the "Anesthesia Dolorosa/Trigeminal Deafferentiation" discussions. He is very good about answering questions. In addtion, pain pump research and articles are becoming more frequent at www.neuromodulation.org/news because they consider pain pumps as neurostimulation. Monitoring all the news stories is tedious but they don't yet have a search function for their news stories.