So, I have type II TN and have been referred to Cleveland Clinic because my neuro doesn't know what to do with me besides the gabapentin and tegretol. But, the Doc they referred me to is Dr. Stewart Tepper. It appears, through my research, that he is an awesome specialist in migraine and everything pertaining to migraines, but it says nothing about TN. He is published in many...and I mean many journals on the subject of migraines. This leaves me wondering if I should be seeking a different doctor, I really want someone who understands and has an interest in TN. I live in Michigan and would be willing to go anywhere in the midwest to find a doctor who can help me.
In a city really close to me there is a hospital, Borgess Medical Center, that claims to be a neuro specialty hospital, but cannot find anything about their experience with TN.
So, should I cancel this appt in Sept for Dr Tepper and find another specialist either at Cleveland Clinic or elsewhere??
Has anyone ever found a neurologist with a specialty in TN?
Cleveland Clinic has neurologists on staff who are conversant with TN and its issues. My wife's records were reviewed by one of them some years ago, though I do not at present recall his name. You may do better in finding a qualified specialist by calling Dr. Tepper's office and speaking to his Triage nurse. While Migraine is often co-morbid with TN, its treatments are really not effective against a lot of TN pain.
Since I don't have classic TN, I've had better luck with seeing an orofacial pain specialist. Since all he does is see people with mouth, teeth, or facial pain, he has more experience than any of the other doctors I've seen. He's a DDS (but doesn't practice dentistry) and that will turn off some people, but he knows more about my pain than anyone -- it's all he does.
If you have 24/7 constant aching pain, you should talk to your doctor about taking 100mg/day Amitritpyline or Nortriptyline. That's the first thing any orofacial specialist will try, it's likely to work, and you can save the money and emotions of seeing a new doctor.
Having said all that, if Dr. Tepper is an expert in migraines, it's likely that he has some experience with other types of facial pain. He can probably help you more than your current doctor.
I am on the same page as Crystalv- after seeing many neurologists and neurosurgeons, I too just see a facial pain specialist now. He also is a DDS that no longer practices dentistry and specializes in facial pain. He has been the only doctor that has prescribed the right mix to control my pain - or at least, get it to a tolerable level. All the other doctors changed my meds or tried other "non-approved" methods to get me out of pain - that didn't work! None of them wanted to monitor my medications and try various "cocktails" until we found the right one. Only the facial pain doc seemed truely empathetic and willing to help me with medication to control the pain. I have constant Type II TN and have had it for over a year now.
Hello, Stewart Tepper was a doctor of mine when he was in CT. He is a kind, sweet and caring doctor. I found him to be empathatic. He was an MD at the New England Center for Headache. I have his book about headaches. I know that he was a professor at Yale. He may a good MD to see. He did not diag my TN2 but his tx of me was aggressive. I would have gone back to him but he left for Clevland. If he can not help, he would know where you should be. He is an MD who will listen...half the battle I always find. Good luck, Anne
I feel better about going to see him now..I go in September. Jody Anne Thomas said:
iHello, Stewart Tepper was a doctor of mine when he was in CT. He is a kind, sweet and caring doctor. I found him to be empathatic. He was an MD at the New England Center for Headache. I have his book about headaches. I know that he was a professor at Yale. He may a good MD to see. He did not diag my TN2 but his tx of me was aggressive. I would have gone back to him but he left for Clevland. If he can not help, he would know where you should be. He is an MD who will listen...half the battle I always find. Good luck, Anne
I was hoping to not have to take medications for this...I would prefer something that will block the nerve, burn the nerve or cut the nerve. I am having a rough go of the medications so far. There has to be a procedure that can alleviate some of this pain. I will keep looking for it.
Thank you for your help, I may consider seeing an orofacial pain specialist in the near future.
Jody
crystalv said:
Since I don't have classic TN, I've had better luck with seeing an orofacial pain specialist. Since all he does is see people with mouth, teeth, or facial pain, he has more experience than any of the other doctors I've seen. He's a DDS (but doesn't practice dentistry) and that will turn off some people, but he knows more about my pain than anyone -- it's all he does.
If you have 24/7 constant aching pain, you should talk to your doctor about taking 100mg/day Amitritpyline or Nortriptyline. That's the first thing any orofacial specialist will try, it's likely to work, and you can save the money and emotions of seeing a new doctor.
Having said all that, if Dr. Tepper is an expert in migraines, it's likely that he has some experience with other types of facial pain. He can probably help you more than your current doctor.
I too have constant TN2 pain. What combination of meds are you on?
D McGinnis said:
I am on the same page as Crystalv- after seeing many neurologists and neurosurgeons, I too just see a facial pain specialist now. He also is a DDS that no longer practices dentistry and specializes in facial pain. He has been the only doctor that has prescribed the right mix to control my pain - or at least, get it to a tolerable level. All the other doctors changed my meds or tried other "non-approved" methods to get me out of pain - that didn't work! None of them wanted to monitor my medications and try various "cocktails" until we found the right one. Only the facial pain doc seemed truely empathetic and willing to help me with medication to control the pain. I have constant Type II TN and have had it for over a year now.
Anne - I am on Lyrica - 3 times per day - 75mg each and 10mg Doxepin at bedtime as well as .5mg Xanax at bed. I have tried to cut back on any of these at one time to see what would happen and I end up in pain the next day, so guess this is the combo that works for me. Yes, the Lyrica has its side effects, but they are controlled with lots of water and food. I do still have some breakout pains - just enough to let me know I still have active ATN, not constant though. If I should have a bad flare-up, my doctor increases the Lyrica to 4 for 3-5 days and then titrates me back to the 3 again. It just all works and knowing how to handle a bad day gives me alot of security. Hope this helps.
Hi, I went to the Cleveland Clinic but before they'd do anything about my pain, they had to do alot of tests because the surgery that I had (jaw prosthesis), left me with many other post op problems besides pain and they wanted to be sure of my overall health. Well, unfortunately, I stayed there an entire week before it was time for me to see someone in pain mgmt. By that point, I had to go home. I will return or go to the Mayo. It sounds like the Mayo might not be so great afterall. I have an appointment coming up there at the Mayo but I'm not sure if I'm going to keep it or not.
Now, if you don't think Dr. Tepper is "your man", after your in-take, they will put you with another doctor who does more with TN. But, you don't want to waste time with an in-take only to switch docs if you can do this in advance, right? I'd just call back and ask to speak to his nurse or his administrative assistant. Each doc has one of each. Dig and dig until you find out if he's the right person for your issues. Be very specific. That's what I learned there so you won't be going from building to building, appt to appt. I was so aggrevated with them by the end of the week. Now, they are thorough at CC, but I was disappointed that after a week, they would finally let me see a pain doc.
I asked the head of craniofacial/plastic surgery at CC who he or he would send his wife/sister to and he said that he'd start with Dr. Nagy Mekhail. Check into him and his background and see if he's more of what you are looking for. Like I mentioned, even if you see Dr. Tepper or Dr. Mekhail and they are not suited for you, they have the ability to get you same day appointments or next day appointments with someone else.
This information may have changed, but to reach Dr. Mekhail, he sees new patients on Thursdays. His numbers are 216-■■■■■■■■, 216-■■■■■■■■ or 216-■■■■■■■■. His secretary a few months ago was Nicole. Her number is 216-■■■■■■■■. His nurse's name was Ann. The scheduling and pain clinic's direct number is 800-■■■■■■■■ x57370. Generally he does surgeries on Tuesdays, minor procedures on wednesdays, and new patients on Thursdays.
I got the run around as you can see but I just persisted. These numbers were from several months ago. Let me know what you find out. If you get relief, myself and many others would be interested.
I'm on a duragesic patch and get to change it every 48 hours because I am a fast metabolizer. Oral meds dont work well for me. On low dose, I'm almost dying with pain on oral meds and on higher doses, I am zombified. There is no happy medium.
Has anyone found any combination that seems to work for them? I have atypical type 2 TN pain that is 24/7 constant pain in every tooth, tooth roots, gums, palate, tongue, bottom lip and chin. It's been 3 years. Oh, I tried 4 radiofrequency ablations of V2 and V3 with no improvement but did have a trigeminal nerve block which gave me 24 hour relief for the diagnostic block and I felt normal for a day. But can't have those every day.
Has anyone had a nerve block that works beyond 1 day? If so, what was the combination of meds in the injection and how long did it last? Any meds that have worked for anyone? Procedures worked for anyone? Please be specific. Appreciate it!
Thanks...just been looking for relief in all the wrong places...want to look in the right place! Thanks.
Wow, you have really been through a lot. It shouldn't be this hard for the docs. I know it is V2 and V3 that is causing my problems also. I don't understand why you think Mayo might not be useful either. I am going in August and am pretty excited about it. They told me in advance that I may be there for five days for testing and procedures.
I am a nurse and I know that it shouldn't take them a week to determine if someone is healthy-lab tests, EKG, pulmonary function tests etc can determine that in a day. So, it sounds like they were stringing you along or didn't have their stuff together. It does seem that you do ask all of the right questions and are very on top of it.
I didn't think pain meds worked on this type of pain...I had tried dilaudid for it in the beginning but it didn't touch the pain and made me very dopey.
Pookie, for some TN patients, the opioids are nearly the only thing that DOES work. For others, that class of meds is completely unhelpful. I don't think anybody knows entirely why an individual can fall into one group or the other. So medication becomes a trial and observation process.
Red, do you think I should go on to the Mayo? I went to the Cleveland Clinic a year ago and stayed 7 business days. They sent me to every department practically except psych and cardiology to be sure I was healthy enough after that complex TMJ surgery...they sent me to rheumatology, immunology, infectious disease, craniofacial, reconstructive plastic surgery, hematology/oncology, internal medicine, i had a colonoscopy, ct scan of face, endocrinology, etc. They deemed that in spite of everything, I was pretty healthy but still had concerns about me being on immunoglobulin therapy indefinitely to help my bone marow fight infections, my jaws still need realignment which means breaking and setting them again,etc. I have so many various issues that I was told that going to a "facility" so they could work as a team is probably better than running around to various private practice docs who don't really talk to each other. they do not have a department at this Mayo in rochester that deals with total TMJ joint prosthesis patients. I need a good orthognathic department that can work on my jaw bones and align them right. Do they have a good neurosurgery department? Thanks so much! Just trying to make educated decisions without running too much all over unnecessarily.
Tink, I'm afraid that I am not as deep as I'd like to be concerning services available at specific medical centers. But I would agree that it seems advisable for you to be seen at a place like Mayo or Columbia or Johns Hopkins, where you can be jointly evaluated by a team rather than referred at a distance to doctors in sequence. Plan B in that process might be to find an MVD surgeon who also works closely with an Orthognathic surgeon -- a bit like hunting for a needle in a haystack, unless you can get referral from a large regional medical center to both physicians.
Yes, maybe some of these doctors know oral maxillofacial surgeons that work on jaws and jaw deformities. Craniofacial surgeons can do some orthonagthics, too. I've had alot of advice from don't do anything to you better do something because you can't be too much worse off than you are right now and your teeth and jaws are moving daily, structures and pressing against structures in your face. I'm getting more and more asymmetric looking every month. My lower jaw is shifting left and I only hit on two teeth now. the back of my jaws are open and no teeth touch each other back there either. I was recently told by a Dr. Mark Glyman that [name edited - R.A.L.] put me back together crooked and that's the main problem. If I'm to get better, we basically have to undo what he did and redo the surgery right. He's the one who sent me to Oregon for a 2nd opinion of his plan. The one in Oregon is a MD, DMD also and does alot of jaws but none as bad as mine. He wants to get that Hydroxyapatite bone graft (HA made of sea coral to mimic bone) out of my face before it causes more infection to live in there and my Vegas doc wants to get them out too. They are too large and prone to infection living in them. But to take them out, we'd have to replace them with a smaller piece of my own bone preferably like from my hip. I talked to a girl who was a wolford patient too and she let Dr. Glyman fix her and he did a good job. She's not pain free, but she's got less pain and she's got a bite again and feels and looks like more of her old self. She's glad she did it. So, some of these centers probably have oral maxillofacial surgeons, even some reconstructive plastic surgeons do this kind of work, and craniofacial surgeons work on jaw bones, too. It's just alot of research and I' m so beat up for 3 years of this with virtually no one to help me on a consistent basis, I need your help . I realize you have things of your own to do so I am grateful for what you are doing to help me.