Conference Report - TNA 6th National Conference

[JeanC]

Hey, everyone,

Oh, gosh, where to start? I guess first I'd like to say it was great to meet Katie and Kim and Susan/Mt. Girl and Jillie (TNA-UK and Tracy's friend) and Irene (TNA-Aus who helped out someone I met in the chatroom - or was it on the forum - one night last winter) and to see Susan/Swanee again - we met at the last conference in Orlando - as well as others who have become old friends already. Kim and Katie did a great job presenting on stimulators and then I found an empty seat at their table for lunch so we got acquainted a little - as I ate up all the rejected chocolate!

It was a great conference again. Lots of good stuff. The highlight was watching a LIVE MVD operation! Yes, LIVE! Kim Burchiel of OHSU (Oregon Health & Sciences Univ. in Portland), who was hosting the conference, did an MVD on Friday afternoon and they had a live feed to the conference, which was being held at the Doubletree in town (thank goodness the electronics all worked - another session wasn't so lucky). There was a camera in the overhead light in the OR as well as in the microscope and we got to see from the beginning to - I assume the end, as I left when they started to close to catch another session. It took about 45 minutes to do the craniotomy (open up the skull to where they could see between the parts of the brain down to the base of the nerve. They monitored the facial muscles and hearing to reduce the risk of hearing loss and/or facial paralysis, as those cranial nerves (VII and VIII) are closest to the Trigeminal Nerve (V) when you get in there. In fact, when you see them altogether in there, you wonder how they know which is which at all! You sure do want an experienced surgeon with a really good success rate.

He found a vein running across the base of the nerve and coagulated it - or "buzzed it" as the narrator kept saying. The vein was just as it appeared on the MRI, which they showed us on the screen as well. He looked around the nerve root but didn't find anything else (we could see other vessels, but the narrator explained that these were arteries that feed the nerve). This part only took about 10-15 minutes - the actual decompression part. I don't know how long it took to close - sorry. I should because I came back and Dr. Burchiel was answering questions, but I don't remember.

We heard that the patient was fine in recovery but never did hear whether the surgery was successful - i.e. whether her pain was reduced or gone when she woke up. I asked the next day but Dr. Burchiel was dashing back to the hospital to check on the patient - literally. He said he'd try to get word back, but I never heard anything. I hope no news was good news. I was hoping they'd post it on the TNA or OHSU website but I can't find anything.

More soon...

Jean :)

[koober1]

Was Dr. Graff-Radford there? He's my doctor and I LOVE HIM!!!!!! He's such a wonderful man.

[JeanC]

Sorry, Kim, he wasn't in Portland, nor in Orlando two years ago. Sorry I've missed him. I know he's presented at previous conference(s) (he's on the TNA Medical Advisory Board so he's invited each year) and I've read enough to know you're in good hands! See if you can talk him into going to Detroit in 2008. :)

Glad you're doing so well - take care and keep us posted!

Jean

[Swanee]

Hi Jean,

Yes, it was great to see you again! Sorry it took so long to sign in again. For all those that have never been to a TN Conference - I strongly encourage you to do so! I don't log in here as much as I used to but it is amazing to me when I go to a Conference how much comraderie there is.

Jean and I have established a rapport, and Jilly and I reconnected after 2 years. Plus I met a few other memorable folks (Hey there India, if you ever log on here). There is nothing quite like socializing with others that know what you are going through. Plus the opportunities to interact with the medical community.

So - everyone keep Detroit in mind in 2008! It is an experience that you will never forget.

[JeanC]

Since meds seem to be a hot subject among us at the moment, I thought I'd give a rundown on a presentation by Dr. Joseph Vaughn on Medical Management of Trigeminal Neuralgia. In 25 minutes he covered more than 20 different meds!

He recommends patients keep a pain diary, and he acknowledges seasonal variations in pain. He'll use adjunctive narcotics until pain is under control and then avoids them unless necessary again. He'll adjust to test for remissions and taper to the lowest effective dose to reduce side effects if unable to discontinue them completely. Prefers monotherapy (one drug at a time) but will go to polytherapy, esp. with Baclofen (as adjunct).

Meds he discussed and my notes (which are very incomplete - for more info check your favorite drug website, or the one at the top of the page (above the flowers) Drug Info (http://www.nlm.nih.gov/medlineplus/druginformation.html)) -

Carbamazepine/Trileptal/Tegretol-XR/Carbatrol - felt to work in 70-80% of TN patients, with 90% experiencing significant relief within 48 hours (!). Note: this was where he said he rarely uses generic meds due to the variation in strength - which he said can be +/- 40%! (Could explain why some people don't get relief until they get to higher doses...just me conjecturing.)

Dilantin (phenytoin) - can be effective if Carbamazepine doesn't help (but not if there's a rash in reaction to CBZ).

Neurontin (gabapentin) - very effective, well tolerated, can titrate rapidly, take 3-6 times/day and up to 2400 mg./dose.

Lyrica (pregabalin) - New, longer-lasting than Neurontin and as easily tolerated. Good results for TN and ATN.

Baclofen (lioresal) - good booster, 2nd line med. Can be used at >300 mg./day.

Keppra (levetiracetam)- not usually front line, yet. No drug interaction so good in combination. Well tolerated.

Lamictal (lamotrigine) - slower titration. Easy to tolerate. Good if nothing else works. Don't use with Depakote --> rash!

Zanaflex (tizanadine) - good for sleep; adjunctive.

Orap (pimozide) - more effective than Tegretol, but more s/es - adjunctive?

Depakote (valproic acid) - sodium blocker, weight gain, drug interactions.

Topamax (topiramate) - good for migraines and so for TN.

Zonegran (zonisamide) - "remains to be seen" - watch for rash.

Gabitril (tiagabine) - good for 6 mos.; adjunctive.

Klonopin (clonazepam) - sedating, addictive, difficult to taper.

Clonodine - adjunctive, lowers BP, patch? Polytherapy.

Tricyclic Antidepressants (Elavil, Pamelor, Desyrel, trazodone) - sedating - use at bedtime. Adjunctive.

Selective Serotonin Reuptake Inhibitors (SSRI antidepressants) - Prozac, Lexapro and Celexa are rarely effective in treating pain and could make worse. Cymbalta, he said was disappointing in his practice except for some for severe, lancinating pain. Zoloft and Paxil sedating - good at bedtime.

Namenda (memantine) - Calcium Blocker. New one - very exciting, he says, but remains to be seen how good for TN.

Campral - New and untried, but exciting.

Cytotec (misoprostol) - no serious side effects, easy to use.

Topical Capsaicin - can be effective and used with oral meds but messy - requires gloves.

There were other talks on medications - will pick out any that aren't covered here in a later post. Also talks on Compounded Transdermal Delivery (custom formulated creams) and Botox injections. So there are more and more things to try, folks. Do your research and if something looks good, bring it up with your doctor. :)

[JeanC]

We heard that the patient was fine in recovery but never did hear whether the surgery was successful - i.e. whether her pain was reduced or gone when she woke up. I asked the next day but Dr. Burchiel was dashing back to the hospital to check on the patient - literally. He said he'd try to get word back, but I never heard anything. I hope no news was good news. I was hoping they'd post it on the TNA or OHSU website but I can't find anything.
Hi, all!

I've just come from the Nashville Regional TNA Conference - which was great, as always - and will write up a quick report soon. I just wanted to update you on the patient who underwent the live MVD at the National Conference in Portland, described in the first post above. I was talking with Shelly Wilson, TNA Conference Chair, last week and asked if she knew how the MVD turned out and she said it was successful! YAY! I know Dr. Burchiel said as he coagulated the vein he wasn't convinced that was the cause of the problem, but apparently it was as I gather the patient has been painfree since.

Just thought you'd like to know - I know it's been bothering me since September!

Best to you all - be back soon! (Promises, promises... :o )

Jean :)

[ella138]

Hi Jean
That list of meds is an excellent quick reference guide. How about adding it to the stickys? I don't remember ever seeing this (but I dont remember much anyway :o) but it is a great resource, especially for people just starting out on these medley of drugs. I didn't know that about the generic drugs either? :eek:

[JeanC]

Hi, Ella,

I've referenced it many times and put a link in the Useful Websites sticky ... but I always look for it in the Newcomers' sticky, so guess I'll copy it all in there. (Then maybe even I can find it! :o ).

Take care.

Jean

[SwTPeA]

Dr.Birch is my neuro and he has bad bedside mannor but he did a great job on my MVD!! I would trust him with my life again anyday!!

Laura

[JeanC]

Dr.Birch is my neuro ...

Do you mean Dr. Kim Burchiel, Laura? Yes, I know what you mean ... He does know his stuff, though. Here's a link to his bio for others who might be interested -

http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11090

I'm sorry I never got back and added to this thread. It was my second national conference and I wasn't as focused as the first time so didn't retain as much. It was during the big crash of the forum, too, so I couldn't come back and report during the conference. I did have an offer from one of the neurosurgeons to start a blog for us, though! Then the current forum came back up so I didn't take him up on it.

Take care, all!

Jean

[saraiderin2]

I found that watching Dr Burchiel do the MVD really did put my mind at ease when it came to MVD surgery. It showed me it is not brain surgery but a craniectomy and compared to other things I could have had to go through it could have been a lot worse.

The narrator's name is Dr Slavin. Dr. Slavin did his surgery fellowship under Dr.Burchiel then went back to the University of Chicago. While doing their fellowships Dr. Slavin and my neurosurgeon Dr Eller did a lot of the early research on the 7 point facial pain classification system. Dr Slavin went back to Chicago and Dr Eller stayed to take over the neurosurgery department at the Portland, Oregon VA hospital.

Dr. Eller did my MVD surgery this past January 14th. I was doubly blessed. Had a neurosurgeon who is excellent at what he does and very compassionate too.

Sarah

[SwTPeA]

Sorry about my typo...Thanks for correcting it!

Laura

[facehurts]

When is the next conference? Would love to attend.

[JeanC]

Hi,

The last (7th) national conference was last September in Dearborn, MI. I didn't go to that one (this report is from the 6th conf. in 2006) but I know someone who did and if I remember correctly there was no announcement about the date/location of the next one, which they usually make at the end of the conference. They have been held every two years so hopefully someone will step up and offer to host one for the fall of 2010.

There have also been regional conferences, but none scheduled at the moment. You can keep checking the TNA conference page for news of upcoming conferences -

http://www.fpa-support.org/events/index.html

They also have videos/DVDs of most all of the presentations given at the last several conferences. I haven't actually viewed any to know the quality of the filming, but I do know the Support Groups can (or could) get a limited number for free so if you can find a nearby support group, you may be able to borrow or view some to see if you want to order some. Look under
http://www.fpa-support.org/images/top_nav_on_02.gif (http://www.fpa-support.org/support/TNAStore.html) on the home page to see the list of DVDs from the last conference.

Jean

[Mountain_girl]

I was at the Dearborn conference, and Jean is correct - there was no announcement regarding another conference. My neurosurgeon is a member of the TNA medical advisory board, and in talking with him, he mentioned that no one had volunteered to host the next national conference. This was as of September, so that may have changed by now. Also, Shelley Wilson, who was the driving force behind all of the TNA conferences and meetings, left TNA sometime between the San Diego regional conference (Jan, 2008) and the Dearborn conference. I don't know if she has been replaced...

Susan

[facehurts]

I am actually a professional conference organizer and if the TNA is interested I can put them in touch with two top conference organizers (companies of course).

[JeanC]

I just got the latest "TNA Headline News" email and it announces the TNA's 8th National Conference:

SAVE THE DATE
Aug. 28 - 29, 2010
TNA's 8th National Conference

Sponsored by:
The Mayo Clinic
Rochester, MN

There's also an article, "Radiographic evaluation of trigeminal neurovascular compression in patients with and without trigeminal neuralgia," from the Journal of Neurosurgery, April 2009, that is very interesting.

Neither of the above has made it to the TNA Web site as I write this, but keep checking - should be there soon - www.fpa-support.org (http://www.fpa-support.org/)

Take care, all!

Jean

P.S. The article now appears on the TNA Web site - or rather a link to download a pdf file does. There probably won't be much about the conference, other than the above announcement, until next year.

[facehurts]

Thank you. I hope to be able to attend, all depends when the MVD will take place.

[JeanC]

Hi, all,

I just noticed this posted on the TNA/FPA Web site - the January TNAlert newsletter that has some highlights of the 7th National Conference that was held in Dearborn, Mich. last September (2008). As I read, there were some write-ups of presentations that have been topics of discussion here recently - eye pain, acupuncture, and managing pain (all after the letter from the chairman, so read past that). It also has lots of comments from attendees for those interested. Here's a direct link -

http://app.streamsend.com/private/X1jX/_/UUPnqZH/browse/2194652

I couldn't get any of the pictures to load properly - don't know if it's my browser or problems at their end ... but thought you all might be interested. Enjoy and hope some may learn something helpful!

Jean