Newbie with many ?? NOT TN ~ Sphenoganglion nerve block??

[StacyLC]

Hi, I am new here and happy to find this treasure trove of information and experience. Thank you for sharing.

First of all I have not been diagnosed. I have been suffering for 2 years following a dental crown, and have been to every specialist in my small town. The dentists think it's not dental and the md's think it is. Anyway from one of the links on the "useful links" threads I think my problem is best described as Trigeminal Neuropathic Pain (TNP). I do not have nervy-type pains; no shooting, searing, or stabbing pain. I have a constant dull throbbing pain that escalates throughout the day, sometimes spreading to my ear or cheekbone but always starting at the original offending tooth. I do have prickly pain in my palate, gums and tongue, and facial swelling. Does anybody else have this type of issue? Is there a TNP forum?

After having all the local tests (but no MRIs) and two root canals (different teeth) I finally went down to UCLA and saw Dr. Steven Graff-Radford at Cedars Sinai. I like him, he's obviously very bright and driven, he ordered lots of tests and sent me off to another dentist for another root canal. The same original tooth and there was another necrotic root that had been missed. Unfotunately that did not change the pain at all and so now I am trying the gamut of meds. Graff-Radford thinks it is not TN but rather that the nerve has been so traumatized from the long-term infection that it just won't shut off. I agree but wonder if it's more, or less and the stupid tooth should just come out. Nobody is willing to remove the tooth since they think it won't solve the problem.

I am just finishing a 2-month trial of neurontin and about to try topamax. Assuming it fails, which they all have so far, the next step the doc has in mind is a spheno-ganglion nerve block. Has anyone had experience with that? It sounds unpleasant but non-invasive and, as nobody but people who live with pain can understand, I am willing to try anything.

Sorry for the lengthy post but one more question - I saw several references to OHSU docs being great with TN - do they do TNP? I assume they must, since people must come to them for diagnosis. It is extremely expensive and difficult for me to go to Cedars Sinai (I am in Oregon) and of course insurance doesn't cover airfare and all that. I do not have a local neurologist and my care thus far has been a lot self-directed. Frustrating and I'm sure not efficient.

Any advice would be appreciated!

Stacy

[JeanC]

Hi, Stacy, and welcome!

Your story sounds very similar to mine! I've never met Graff-Radford, but have heard great things about him especially for your/our issues. Have you asked him about someone in your area who could work with you - and him - to help you find the right treatment? He's very active with the TNA and should know the docs at OHSU or elsewhere up there. The only one I know there is Dr. Burchiel, who is a neurosurgeon and does a lot of MVDs, but if you don't have a compression causing your pain, you don't want surgery. I don't know the neurologists there, but might be able to get you a name through some contacts.

I can tell you that whatever I had (I don't think we ever did settle on a Dx, but one guess was an over-excited trigeminal nerve) it has calmed down but it took a couple of years. Like you, it just felt like the nerve had been traumatized and the pain wouldn't "turn off" even though plenty of time had passed. I too got a crown and the problems started when the tooth was first prepped and continued after the permanent crown was placed. I had a root canal that didn't help the pain. I took Baclofen and Elavil for a couple of years. It helped. I still have occlusal issues that are being addressed (finally!) and hope to have things back to where they were soon. I'm traveling to Virginia for that (from Vermont and New York). Travel for medical reasons is tax deductible if that helps.

When did you have the last root canal? If you have swelling, it sounds like there might still be something going on with that - did you get any antibiotics for the necrotic root/infection? I would assume so, but perhaps it's a resistant infection that requires something more potent. I haven't had the block and would have to go back and read up on it.

I do know how you feel - stuck between the dental and medical communities. I went to a Facial Pain Center in Florida a year after the problem started, but it's still taken several years to find someone who seems to be making real progress. The Facial Pain Center closed last year and the director is now dean of the dental school at LSU. I was about ready to go see Graff-Radford, when I got this referral (to an occlusal expert, not so much pain oriented). I'd ask Graff-Radford for a referral, if you haven't already. If he doesn't have one, let me know and I'll check my sources for you. I'd have the swelling checked out, too.

I've got to run, but will have more time in the next day or two so let me know how I can help. Take care and hang in there - you're in the right place for help and support here.

Jean

[gene1950]

First of all I will apologize if I sound angry and I want to assure you I am not angry at you or anybody else on this site. It just frustrates me to read what people have to go through to get some kind of relief.

After two years of having constant pain from the crown procedure, the trigeminal nerve HAS to be over-excited, overly sensitive, and down right angry. So what was their answer? Do another root canal and just stir things up more? Dang!!! Then there's the "good tooth" thing yet they want to keep doing root canals on it and hollow it out? I'm no doctor but wouldn't the swelling be a hint? Jean mentioned antibiotics, it's certainly worth a try.

Sorry for the rant. Anybody else having a bad day?

[JeanC]

Hey, Gene, you really must be having a bad day - or you missed the following in StacyLC's original post about her dental issues:

... sent me off to another dentist for another root canal. The same original tooth and there was another necrotic root that had been missed.

No amount of waiting will calm down the inflammation around dead tissue that's left to fester - been there done that - and that's my "good" side!

So, I don't mean to hijack Stacy's thread, but what's up, Gene? I've heard a hint of frustration in a few of your posts before, but not like this. Is your pain getting the best of you? Or was that little rant enough to get whatever it was off your chest? If not, do let us know so we can help, support or just listen. Or just be here for you if it's not something you can or want to share. Believe me, I know that frustration at the docs who just don't know enough, but Graff-Radford is probably the most knowledgeable about this type of face pain (IMHO) and did well to uncover the root that was left untreated. Honest, he's on our side.

It's not my intention to pick a fight with you or defend the uncaring docs, I'm just worried about you. Can we help? I hope it can be chalked up to just a bad day, as you say, but do let us know how you're doing. If your frustration at the uncaring docs has just come to a head, well, maybe we can figure out a way to channel that energy into something positive. I've been trying to find some way to do that since I joined this community five years ago, but am not getting very far on my own. Maybe we can brainstorm about how to get help for those of us with undiagnosed face pain, those with TN that can't be treated successfully with meds or surgery, etc. Just a thought.

Do take care and I hope you're okay. I wish I had your sense of humor to be able to say something funny to cheer you up, but I'm just not good at that - will leave that to you!

Hugs,
Jean

[gene1950]

I warned you I was going to sound angry! Yes my pain level and my frustration with the medical community has a lot to do with my comment. However, this is not about me. It's about Stacy. Two years of suffering after a crown procedure is just a tad excessive in my book.

I caught the part about the missed necrotic root. I also caught the part about it not changing the pain at all. So after seeing a neurologist and it sounds like more than one dentist, Stacey is right back where she started. I feel sorry for her.

[StacyLC]

Hi Gene and Jean, thank you so much for your posts. Thanks, Gene, for being angry for me. I am angry for me sometimes, too! :mad: Mostly I am frustrated, and although I am 99% an optimist sometimes it begins to feel hopeless. I can only imagine what people must feel who have been suffering for decades!

I have been to two regular dentists, an endodontist, an oral surgeon, an ENT, a neurologist, two different PTs for TMJ, accupuncture, regular massage, craniosacral work.... all here in podunk Oregon before I gave up and went to the big city (my local neurologist recommended Graff-Radford, btw). It makes me a little crazy to not have answers. I am a logical thinker and I want 2+2 to equal 4, not 2+2 to equal "uh, I dunno, but let's try this..." :confused:

Based mostly on what I've read here I think I will check out our new neurologist in town (youngster might have more recent ideas) to at least manage the meds. So far it has been up to me to say, "OK, that didn't work, let's try the next one." I would like someone else to read the fine print and tell me if I can take Topamax with Metformin! If Topomax does not work I will try to get back down to LA to see G-R before school starts (I have elementary school kids) in the fall.

My last root canal with the additional necrotic root was done in November, closed up in January. My face is very swollen today. It is very depressing. I feel like I am waiting for my life to start back up again, and meanwhile my little boys are growing up! (and making way too much noise for 11:30 at night...) :cool:

Thanks so much for your support.

Stacy

[saraiderin2]

Hello Stacy,

I saw you are in Grants Pass. I am north of you. I live in Portland. When my TN relapsed, I was getting my care at OHSU. I did a lot of asking around the dental school about their knowledge of TN and dental causes and must say I was not very impressed. I am interested to hear who you were recommended to. I know more about the Neurosurgery and Neurology departments. Neurology does prescribe a lot of medications. The lead TN neurosurgeon Dr. Kim Birchiel is a great neurosurgeon, but totally lacks when it comes to bedside manner. Dr Brett Stacey who leads the pain management department is wonderful. He had made treatment of TN pain one of his research specialtys. He will not prescribe pain meds on the first visit,. but will work a plan that best fits your situation.

If you would like to talk send me a private message and I will send you my phone number.

I wish you the very best,
Sarah

[saraiderin2]

I see that I may have read the posts wrong and that you were not refered to someone at OHSU. Sorry about that. Please feel free to contact me. I understand the frustrations. I talk to someone who lives in Bend and she also talks about the frustrations of getting the proper care in a small Oregon town. I get my care at the Portland, VA hospital, but all my doctors come from OHSU except for my neurosurgeon. I have had some frustrations, but overall I have been happy with the care I have gotten.

Please feel free to contact me.
Sarah

[StacyLC]

Hi Sarah,

Thanks for the support. You are right, I have not been referred to OHSU. I was just wondering if it would be better than Cedars Sinai. From what I have read since my post, both here and on OHSU's website, it sounds like OHSU is all about TN and TN surgery. Since I don't (think I have) TN, that's not really what I need. The neurologist I saw in Medford 2 yrs ago referred me to Graff-Radford, who is actually a dentist by training. He is head of the Orofacial Pain program for Cedars Sinai/UCLA. He is awesome but since it's a big deal to get down there, I have only seen him a couple of times and the rest is on my own, basically me telling my primary doc what to prescribe. We have a new neurologist here in town and I plan to see him, maybe next week, mostly just to manage my meds. If he has any knowledge of TNP that will be a bonus. If/when I need more expert treatment I will probably go back to LA.

Stacy