Sara, my impression is that the FDA Compassionate Use program is limited to patients who are assessed to be terminal with other established drug protocols. I don't believe TN qualifies under the laws which govern the FDA in this matter. And I agree with you that it is maddening...
Go in Peace and Power
Can’t wait to have this drug cleared for use in Canada. I need another option. Please keep us posted. Thanks for all the work you are doing in researching our options.
Glad to help out, Patty. I do what I can. I'm also looking into some recent work on the use of basic genetic testing to assess which of the available narcotic pain relievers is most likely to be effective in individual patients. If real, the claims I've seen might make for better treatment when opioids need to be used.
Regards, Red
Hello Red, I have not been in the forum for awhile because Britt had a good summer; I guess it is what they call remission. However right before she went back to school they flared back up. They have been bad and we added gabapentin to her tegretol. She has already missed so much school that we are going to home school. I have convinced the neurologist to do another MRI. The neurologist insist that if she can't see anything that nothing is there. I have requested a copy of her previous MRI and I am waiting for it to send to a specialist in California, Mark Linksey. Some other TN Moms have had great success with him and their children. They too had MRI's that showed nothing but upon having a MVD found multiple compressions of trigeminal nerve and cranial nerves. This is so confusing to me. How can 2 neurologist here tell me my daughter's MRI has nothing but yet I here of many sufferers that have been told the same thing and later found that they did indeed have compressions.
I am glad to here that the possibility of a drug that will target TGN is on the rise. However the thought of my baby 12 year old taking these serious drugs for a long period of time is terrifying. I feel that with our case there must be something else, natural meds, diet change, chiropractor, something. What are these drugs doing to my baby's brain? It can't be good, but suffering in pain most of the day when she isn't sleeping because of the gabapentin, that isn't good either. So frustrated. I will not give up this fight.
Sincerely frustrated,
Dana
A couple of basic realities, Dana:
(1) Not all MRI is created equal. The standard of excellence in searching for trigeminal compressions is high-resolution thin-slice (0.66 mm) FIESTA MRI with special magnet weightings to emphasize the brain stem region, done both with and without contrast agent, and processed post-procedure for 3D presentation of imagery. It's expensive and not all MRI centers do it.
(2) Even with the best resolution in the world, MRI can miss compressions. Dr. Peter Janetta once told me that he expected to find compressions in about 10-15% of patients during the exploration phase of MVD, that hadn't been found previously with any type of imagery. This reality was his reason for diagnosing TN (typical or atypical) strictly from the patient's reported pain patterns and response to medication. If you'll carefully list for me, the types, locations, and duration of pain that Britt deals with, I may be able to at least confirm what I've heard from thousands of other patients.
(3) I know of no reliable evidence that chiropractic helps more than a relative few people who have stabbing electric-shock facial pain volleys, and even fewer who deal with the throbbing, burning pain of atypical TN. TNA advocates for the use of low-inflamation diet similar to that offered by the American Heart Association, but I've never seen evidence in controlled trials that such a diet is effective in limiting TN attacks.
(4) If Tegretol and Neurontin have generated excessive side effects, Dana can be tried on Trileptal or Amitriptyline, or the two in combination.
(5) I've corresponded with Mark Linskey and he seems to be a very grounded human being and well qualified in neurosurgery. As you note, he is developing a good reputation with pediatric patients.
Come back to me by site email with Dana's precise symptom patterns. And read the NINDS TN Fact Sheet linked from our main page before you do, to see how or whether her symptoms line up with one of the recognized types of chronic face pain. Fair disclosure: I wrote and coordinated the most recent version of the fact sheet for NINDS, so I might be more disposed to regard it as accurate.
Regards and best,
Red
Red, do you have any latest suggestions for ATN treatment? My wife's pain doctor said he might try a SPG block if I bring him some documentation where the procedure is done for ATN. He already does it for headaches. I think I may have found something I can give him.
Do you know of any hospitals in the Southeast that do PNS? Emory in Atlanta does them, I think, but they won't call me back
Do you have any good research on the use of Ketaomine? My wife's doctor might try it if I bring him documentation.
I think anyone with ATN should try PNS before MVD. Maybe not try MVD at all for type 2.
Our dentist, the one who can put the nerve to sleep for 8 hours, is refering us to an endodontist that probably won't find anything he can do but will probably refer us to Augusta, Ga. where there is a dental research college. I guess we will pursue the dental end of TN while we search for a place to get PNS done. Thanks again for all you do..
Red, have you heard anymore about Convergence Pharmaceuticals trial with the new sodium channel blocker? CNV101480?
It looks like it has been a year since we first heard.. Thanks again...
Grecio:
I've heard from Convergence but they are playing their cards very close to the chest. They suggested that I periodically check the NIH Trials database for further Stage 2 trials on their new exploratory drug. In any event, it will be years before the drug is certified for general use as safe and effective.
As for ATN treatment, I've heard of nothing new in some years. If the anti-seizure meds don't reduce pain, then the next line of exploration is tri-cyclic antidepressants like Amitriptyline and Nortriptyline, sometimes in combination with a muscle relaxant or mild tranquilizer. I can't recall having seen statistics on effectiveness for Sphenopalatine Ganglion block, but I'll see what I can find in the National Library of Medicine. Ping me at ■■■■■■■■■■■■■■■■■■■ if you haven't heard from me by Monday.
Peripheral Nerve Stimulation implantation procedures vary with the particular devices used. I suspect you'll need to find a doctor who does them regularly and let him guide you to a hospital where he has admission privileges. One way to do that would be to contact Dr Ken Casey, president of the Medical Advisory Board at the US TN Association, and ask for referral to a physician nearer to your location. I'll send him a note and see if he's around.
I don't see good research on Ketamine for ATN. What I do see is that administration of Ketamine can't be done safely outside of a hospital setting, due to the pronounced and disturbing hallucinations it produces in some people. It is generally used in a last-ditch effort to control break-through pain when literally nothing else is successful. I advise profound caution before your wife is subjected to that option.
Sorry I can't send you better news.
Regards, Red