I have been undergoing a trail procedure of radio frequency pulsing to help w/ my TN and ON at Stanford University, the first try was unsuccessful; the IV sedation and nerve block were ineffective, therefor the Dr. could not continue. It was very painful and caused severe after affects. I am questioning now if this is the way to go for me. I would like to hear from other members that have undergone this procedure. Was there a large reduction in pain? I'd like to hear opinions and observations. Thanks!
Hi Cleo, I'm glad you contacted me! I read your discussion a few days ago regarding dental trauma and TN. I was very sorry to hear that you have lost friends to suicide! I was also interested in your opinion regarding dental trauma TN and traditional TN not having similar results in treatment/surgery. They call it "pulsing" now instead of ablation at Stanford University!? I have discontinued treatment at Stanford due to the trial procedure. The Dr. told me directly after the procedure that the IV sedation and lidocain injection did not take affect because I was having a panic attack!??? If that were true ( and it is NOT) why would you do a procedure involving inserting needles into someone's cheek to access nerves near the jaw if they were indeed having a panic attack? Mind you, there were 2 fellows, 1 specialist overseeing the Dr. who performed the procedure and a visiting Dr.from Shanghai along with 2 nurses in the surgical suite with me. I was very disappointed that they "punked out" this way and blamed me for their failed procedure. My journey starting 7 years ago with excruciating face and teeth pain. I went to the dentist who said if it hurts that bad you must need a root canal. well he did six of them before I sought a second opinion. Each tooth still hurt after each root canal! even worse, in fact. The "second opinion" sent me to an Endodontist who informed me that the six root canals were sub-standard and would need to be redone correctly. The "second opinion" dentist recommended that I contact the California Dental Board regarding the sub-standard root canals. I did submit a "complaint" form to the board, who reviewed the case and found that my complaint was filed "with cause". (The complaint also included extractions and general dental work). It took two years for the determination. I have since been working with an Expert Dentist/Maxillofacial surgeon to correct the initial damage. While each procedure inflames the TN, I am trying to save the teeth I have left. 10 have been extracted. I grind and clench because of the TN pain which in turn has worn and broken many teeth over the years. As far as the TN goes I have tried nerve blocks, steroid injections, many medications, botox and finally the Radio Frequency Pulsing. I found your history to be quite intriguing! None of the Dr.'s I've seen have said that there is a difference between dental trauma TN and traditional TN. Although many patients on this site have expressed a different opinion. It has given me a lot to think about. I understand what u mean about chasing a cure and the disappointment of it not working can wear on a person. On the flip side, thinking that there is nothing to do to help is also hard to come to terms with. I felt your input on the discussion board was helpful, but honestly it made me cry to think I would just have to deal with this for the rest of my life. This condition is so debilitating I am in bed most days. I would like to hear more of your story or any input you would care to offer!! The fact that your case was heavily studied for the ADA journal caught my eye and interest but I did not want to reach out because I thought you had said you were going to delete your account...thank you for contacting me! Please, feel free to write back and share any advice and input you may have. I appreciate the information and being able to hear from people who have been there!
-russ
Yes, I did sign my life away... not one of my finer moments, I must admit! So, how do u cope? What treatments or meds helped u? Have you heard of Dr. Linskey at UC Irvine? I also have Occipital Neuralgia (which came first) thought to be caused by a couple of concussions I had 14 years ago. For years the neurologist told me I had Cervical Dystonia! I had so many mis-diagnosis' and neurologist that said conflicting things...So when Stanford said they could "help" me I literally jumped at the chance without really doing my homework. Trust me, I learned my lesson. However, I don't want to give up hope that this could be helped. Is doing nothing really the only answer? thanks for your input, I really appreciate being able to discuss this with others who are also living it.....
russ
Russ,
I'm confused over your original post. I was the one who posted about the friend who committed suicide (or OD, don't know for sure). I never said anything about the ADA. My case was entered into the two leading endodontic textbooks used in this country. My case was a botched root canal where my nerve was burned by a formaldehyde based product mostly known as Sargenti Paste. It is bad news.
If your pain is nerve related and from a dental injury, I'd be real careful about what I did to it. I have been told by all but on doctor, to leave it alone and I heeded their warnings. I had the "advantage" of decades of past cases where people were injured by this material and never got better so I never really got my hopes up. I did have a neuro surgeon offer to do MVD on me and it made no sense whatsoever. I asked him what a chemically burned nerve had to do with a blood vessel pressing on my nerve and he abruptly changed the subject. I almost plowed him over getting out of that office. I have heard story after story about how he has caused more harm to people who listened to his screwball logic. If 40% of the people have blood vessels pressing on their nerve without any problem, why would going to the dentist all of a sudden make it become a problem? That blood vessel was no where near where my root canal was.
I have had some recent email exchanges with a Rhode Island doctor who uses a non-invasive therapy called Calmare. It is the only thing that I am willing to try and after talking with the nurse who trains on the unit, he is the only doctor who I will let use it on me. It claims to have no negative side effects, is not a TENS unit. It is more frequently called Scrambler Therapy and involves sending electrical signals to the brain to attempt to scramble the pain signal either going into it or out of it, I don't know exactly which.
I would go to his website and contact him and see if he thinks he can help you. I am sure that he would be more knowledgeable about all that you have been thru. He will only care about what has actually been done to you. According to the nurse I spoke with, facial pain is an off label use of this machine and this man has the longest and most success with it. He is the one that the hard cases are sent to. The military apparently uses this probably to help solders who have been severely injured risking their lives for us. He told me that a lot of his facial pain success is with dental injuries.
Contact him and let me know what he says..PM me, don't post it.. I understand not wanting to accept that you need to live with what you have. I will say that the stress of trying to find the next thing to do and then being let down or further injured by it creates more stress and then more pain. When I accepted that I have no other choice than to throw meds at it, I was "more able to deal with it". It isn't easy, it is debilitating and it really sucks but I'm not willing to risk making it worse. I cant take it like it is now, I sure can't take worse.
I have no connection to this doctor other than what I have told you. He replied quickly to me and truly seems to be a caring person. He understands what living with chronic pain can do to a person.
And BTW, even though this is approved by the FDA (for non-facial pain), it is likely not covered by insurance. I was told by other doctors I spoke to that a single treatment is about $250. If it doesn't work within the first 2 treatments, it isn't going to. If it does work, the protocol is for 10 - 30 minute treatments. I have no idea if this is even in the ball park to which this man charges or thinks....but if he can help me, it will be the best money I've ever spent.
BTW, I was the one who said I was going to delete my account. Every time this issue coms up, it turns into an argument and Red gets involved. I don't care what any doctor says, if you didn't have pain before you went to the dentist and you do after you leave, you don't have Classic TN and procedures like Gamma Knife, Rhizo..???, MVD are not going to help but are likely going to make you worse. There are stories after stories on the web about this thing happening.
I was told to not even do nerve blocks...even if I need dental treatment on that side of my mouth (eeeek!). I was told by a neuro who I greatly respect to not even try to put an implant in where I lost the tooth because just manipulating things in that area could agitate the nerve. I was told that these nerve blocks into the ganglion of nerves behind the nose and the back of the neck (cant remember the name) won't work and according to patient after patient that my attorney has dealt with, they don't. They just make doctor's car payments.
Don't worry about your missing teeth at the moment. Getting the pain more tolerable should be your first priority. I have found that those prednisone steroid packs where you taper down the dosage each day does help but you can't stay on them for a long time. They helped a whole lot more in the beginning than they do now after 9 years. It isn't the inflammation aspect that helps....I've tried all the anti-inflammatory meds. I saw a post by someone else who had the same experience and was told by her doctor that they have no idea why it helps but it seems that only prednisone does. Maybe you can try it.
I assume you are on meds? Which ones have you taken? I've been thru the gamut and each one only seems to take off the edge. I "joke" that this pain has more edges than any geometric figure known to man. My daily pain fluctuates between a 6-8 out of 10 depending upon how close I am to the next dose. I sleep a lot. I'm unpredictable in making plans....people don't understand, I don't look like I'm in pain. I just don't worry about it anymore. I have had a couple of times many many years ago where I got my pain level down to a 3...don't know how, can't repeat it but I can all but guarantee that the reason it didn't stay there was stress related.
And more of my 2 cents....that same neurosurgeon who offered to do MVD on me was selling a neuro stimulator that had electrodes implanted in the brain with the battery and programming device in the shoulder or stomach area...Motor Cortex Stimulator. I actually went to see him about it but there were 2 other ladies who were signing up for it and I was going to see if it worked for them. It didn't but even if it had, that doctor would not have touched my dog. It sounds like that procedure/device you are talking about is the same or similar to that MCS. There were people who said that it worked but I don't think it lasted for long. I don't know for sure. The thought of having that in me just wasn't too inviting even before I knew it didn't work for them. Given the choice, I guess I'd prefer to put drugs in my body and hope I still have a liver one day.
Hi Cleo, To be truthful I don't know what my main issue is since I had ON years before the dental trauma....The MRI showed no compressions. But I have seen on this site people say that there MRI showed nothing and the surgeon found some. It was suggested to me to see the Dr. at UCIrvine since I live in California. I did talk with his office and told them about my dental trauma and the Stanford experience and they wanted to see me, of course. They also suggested that I get a "cranial nerve protocol/fine cut " MRI. I contacted my hometown neuro and he wants to talk about on my next appt nov 18. I really like this neuro as he seems to actually care, however, he has not expressed a difference in traditional TN and dental trauma TN and now that i'm wiser, it concerns me. UCIrvine wants to schedule me for Nov 24. with or without the new MRI. In the meantime I am still seeing a Maxillofacial surgeon/expert dentist to correct the problems created by the substandard dentist' grimey paws. It's been a slow process, mainly because of the cost involved. So, in conclusion my goal is to define my type of TN and treatments available, if any...it's just hard because I don't know who to trust.
Cleo said:
In my case it is 100% dental related. I didn't sway away from the dentist for one day after this happened to me. The only treatment I had done during the first year was an oral external neurolysis (by an oral & maxillofacial jaw surgeon) on the lingual nerve which involved the removal of a large adhesive neuroma.. neuroma aka scar tissue. Yes I have heard of Linskey but I know he isn't treating oral nerve injury IF that is your main issue at hand.