This may seem like an odd question due to our focus group on TN, But does anyone know of a good detoxiication doctor? I'm not talking drug rehab or detox, I'm talking about foreign body detox like trying to get my body to accept the foreign metals that make up this TMJ prosthesis (i.e. titanium, cobalt, chromium, nickel, molybdenum, polyethelene plastic, molybdenum) etc. I've had one allergy test to these metals in last year using the same way one tests for food allergies or environmental substances the subcutaneous way where the nurse injects a small amount of the food (i.e. peaches) under the skin on my forearm and if I get a wheal develops larger than a certain size, that means I was allergic to that food, metal of whatever the nurse injected into me
Based on my test results, I have to first not be around that food for 3 days and not eat it any more frequently than once every for days. They finally let me sign a paper and I'd give myself my own allergy shots.
I took allergy shots for at least 7 monthis to all of the metals in my TMJ prosthesis to see of I could detoxify myself. It did not work. My pain is just as bad now as it was seven months ago.
I thought about trying to search immune disorder physicians who do detoxification for the metals mentioned above, not "heavy metals." It could be under detox physicians, infectious disease (?), Immunologists, (?), pathologists (?), etc. I'm not sure where to start? Ideas? THANKS!
Tink, one place to find doctors is through the support group contacts on the TN Association website. Another on the same site is to search their knowledge base for the names of a few larger cities in your area. Among the hits you'll get in such a search are doctor profiles for docs who have bothered to register with the TNA doctor registry. Here, for instance is a representative example for a search on "Dallas": see http://www.fpa-support.org/?s=Dallas
You may need to log onto the site in order to use the knowledge base, but the search window is on a lot of their pages.
Regarding heavy metal allergies, I'm out of my areas of expertise, I'm afraid. My instinct is that an immunologist might be a place to start. Such a professional should at least know where to send you.
A basic question Tommy: if you're already working with a respected specialist, then why would you need referral?
Likewise, be advised: repeated rhizotomies of any kind will cumulatively build up scar tissue on the nerve. That's what a rhizotomy does: creates a lesion. This buildup can reduce the effectiveness of later procedures or even add to your pain over time.
Tommy, you said you have "trigeminal neuralgia of the left tn2 and right tn3 and tn2." Where exactly is your pain in these areas, and is it constant or intermittent? Tinkerbell has constant pain in every single tooth, her palate, all of her gums, her lower lip, and chin. She has had several radiofrequency ablations on the right side (but not on the left, where the titanium TMJ prosthesis is) and they only gave some pain relief to her two back molars (top and bottom) on that side without affecting the rest of her teeth or anything else. It sounds like you are receiving the block or rhizotomy in the same area (somewhere not far from your ear) where Tinkerbell has already received hers. Is that right?
Tommy, I'm sorry you have to go through that. I try to understand, but I know I really can't. Do the treatments (blocks or rhizotomies) give you relief in all the areas you are describing?
i dont see what the choice is if you can have surgery. i will start with lidocaine. one dr wants to start with diagnostic while the other is ready to reduce the pain. there is nothing that clearly an absolute. i dont want surgery. i need to have reconstructive. i dont see another way to go. everyone reacts differently so how can you know unless you do it.
red whats your opinion and now i have a dr issue. sternberg is more experienced and hes not doing diagnostic. the younger dr. in adventura is less experienced but more conservative.
red, it really is not clearly a win. you just dont know. my dr wants to do the same procdures as tommy.
"Burning of the nerve" might be another name for RF Rhizotomy. It's an option, but one that may not have good long term results for patients in whom the origin of the facial pain is a discrete injury rather than a nerve compression or spontaneous emergence of pain without dental work or facial surgery.
I don't think either diagnostic or exploratory nerve blocks with Lidocaine or Xylocaine will cause you lasting harm, Elaine. As for the two doctors, I can't tell you who is "right" or even if either one is. A lot of contemporary practice is grounded on he training that docs get from mentors in med school. Thus some physicians are more conservative and others more aggressive in their attempts to treat pain. The deciding factor in either case, ought to be a traceable record of successful outcomes.
Thus I'd suggest you ask three questions of each of the candidate doctors: (a) on how many patients have you performed the procedure you propose for me? (b) how do you define a successful outcome? and (c) in what fraction of your patients was the outcome of the proposed procedure successful, and for how long?
Be guided in your selection of a physician, by what you hear. And don't hesitate to ask the two doctors to phone each other and discuss their recommendations and reasons before coming back JOINTLY to you with a consensus recommendation. That's a legitimate form of peer review, though one that few doctors enthusiastically support.
There are rarely clear "win's" in facial pain, Elaine. We really aren't able to go after root causes at the neuroscience level yet. So every surgeon or pain specialist is reduced to half-way measures that use some form of mechanical nerve destruction (or in the case of meds, a form of chemical suppression of nerve function) to compensate for another and deeper but unknown mechanism that causes the pain.
I called gonzalez who said he has had 100 successful rhiz. procedures. I wrote sternberg about his proposal. havent heard from anyone yet. Gomzalez has heis US training listed but was trained in south america. We couldnt figure it out. Sternberg is her in the US, but he does not understand all the facial problems. he didnt understand why epidural didnt work. andwer-its not coming from the spine. How many of hos rhiz procedures were on atypical candidates. ill call them back again and email sternberg.
I've never had a block last longer than 24 hours. How are your blocks lasting for so long? What do they consist of? Yes, numbness is a weird feeling. I have several sensations in my face ranging from numbness with tingling upon touch with freezing cold/burning sensation like dry ice, escalating pain upon touch of the areas (every tooth, lips, gums, palate, chin). Please let me know what helps. I'm like you. I rarely have a 6 day and usually hover around 7-9. No pain meds alleviate the pain. No neuroleptics alleviate the pain. No radio frequency ablations alleviate the pain. I feel stuck in pain purgatory. Any ideas out there???? What has helped you??? What was in your blocks to make them last so long??? Thanks.
None of my blocks lasted for longer than 4-24 hours. How does a doctor get a block to last for weeks to months at a time?
Tink
elaine48 said:
i dont see what the choice is if you can have surgery. i will start with lidocaine. one dr wants to start with diagnostic while the other is ready to reduce the pain. there is nothing that clearly an absolute. i dont want surgery. i need to have reconstructive. i dont see another way to go. everyone reacts differently so how can you know unless you do it.
red whats your opinion and now i have a dr issue. sternberg is more experienced and hes not doing diagnostic. the younger dr. in adventura is less experienced but more conservative.
red, it really is not clearly a win. you just dont know. my dr wants to do the same procdures as tommy.
Dr. Boulis is highly thought of in his field. For some reason looking at the misspelled words in the supposed October 17 posting by me looks suspect. The basic information is right but it's all goofed up. OK, who wrote this...Terrell...are you playing a trick on me?
Tommy, the ON Rhizotomy you refer to would have to have been administered through the back of your neck, I think? The objective was to create a scar on the nerve (lesion) without totally severing it, thereby cutting down on the efficiency of the nerve in transmitting pain, but trying to avoid fully severing it and raising risk of deafferentiation pain. Numbness is a frequent side effect in Rhizotomy, for either trigeminal or occipital nerve.
i am totally confused by a lot of tommys wording and procedures. i have just started to look into blocks and its hard for me to believe that i cant find the level of expertise you seem to have. this makes no sense. apparently youve been doing this a long time but blocks usually last no more than weeks and i am aiming for more than that. i cant imagine that new orleans should have all the experts. there must be others around in the south. im also in the middle of reconstructive surgery which would come first. I cant even compare the different situations. I find it hard to believe that New orleans is the center of facial nerve experts. im lost in your wording tommy and im having the same problems as tink in finding help.
Yep, I've been looking for only 3 years and it sounds like Elaine has been looking longer for facial pain (mine is definitely trigeminal related). New Orleans has some good doctors but I had the feeling that places like Mt. Sinai in NYC was a mecca for pain mgmt docs. Please explain your blocks, Tommie. What is in that stuff? Some new concoction from Bourbon Street from Marde Gras? Sounds good! More details please, Tommie. Thanks.
Tommy, sounds like your have occipital nerve pain and what other type of pain. I finally got what ON meant. I was wondering if the word OFF was going to be in the next sentence. Just kidding. What type of pain do you have? Are these trigger point injections? If so, I understand why they last a little while. I used to get those a long time ago after a wreck. Tell us more about your diagnosis, specifically the type of pain you have and exactly what your doc puts in these injections. Where does he inject them? Just base of the skull? Near Occipital nerve? We're trying to clarify what you are trying to tell us so we can be helped, hopefully, by the benefits of what you are getting.
Thanks, Tink
Tommy R said:
I failed to respond to earlier comments about nerve blocks. It takes a cumulative effect and it does not happen overnight. I missed one appointment and it was about 6 weeks past my nerve blocks. I had to start over because I lost the advantage of the cumulative effect. You just need to hang in there and let the effects cumulate. Tommy
hello tink. hello tommy. he has connected, but we will. i have occipital neuralgia. my neck was fine untill the july 2002 revisional facelift. i wrote about the premier plan- private drs . im much more newly diagnosed and its still not clear. Red has helped and I must track down why my records went to spinal. I still feel better since the lidocaine in the TN nerve. Is that possible? Im not in much pain 4-5 or less. Im getting support with the plan, some other pain drs that may do facial. I really thought NY had it all. WE do in a very stressed out atmosphere.
Im a candidate, but im not sure every 2-3 weeks is great. I would like more if its possible. I had one diagnostic block and it was correct.
Tinkerbell said:
Elaine, I would have no idea if you are a candidate for a nerve block. Most people are but there are exceptions. Maybe Red, Tommie or some of the others can guide you better. None of my blocks had steroids in them which makes the blocks last longer. Using no steroids, makes my blocks very short-lived and my blocks were only diagnostic to find out which nerves were involved in causing the facial pain. Tommie's nerve block was obviously for to treat his occipital nerve problems. His doctor was stephen rynick near New Orleans ( a suburb called Marrero, LA). He sounded like he's given Tommie some good nerve blocks. I had to call around to pain management clinics, neurologists and neurosurgeons to find who actually does facial nerve blocks. They are not prevalent. Most just do necks, backs, etc. Good luck.