I am trying to find a neuro for my wife who either specializes or is very familiar with TN/ATN. She has been to two different neurologists but one specialized in strokes and the other something else that I cant remember right now. We live in South Florida.
Any suggestions are appreciated.
I am still looking for a neuro in South Florida, my wife's TN started up again yesterday and she really needs help from someone who doesn't think its psychosomatic. Any help is greatly appreciated.
Exactly where is South Florida are you located? I'm in Tampa and have a wonderful neurologist who specializes in dealing with TN/ATN. She has pretty much saved my life. And I mean that literally. She is located at USF Health at the University of South Florida. It may be worth a drive/flight to meet with her.
Also, if you're looking at the resource provided showing doctors by state that specialize in TN/facial pain, one of the doctors in Tampa, Dr. DeWeese, has retired. This leds me to believe this list is somewhat outdated and incorrect as this is not an area he has ever specialized in.
I live just outside Ft. Lauderdale. Tampa would be a trip but I will mention it to my wife, thank you. Meanwhile if anyone else can recommend someone in the Ft. Lauderdale/Miami/Palm Beach area please let me know.
Hi Steve,
I started having excrutiating throat pain in early December; I woke up one night feeling as if I had someone poking my throat from the inside with an ice pick. I knew it wasn't a regular sore throat because it only affected the left side on a very particular spot, but unfortunately I had eaten fish with little bones a day earlier, and thought that might be the cause. After a few days, I went to my Dr., then to an ENT, (c-scan came back negative for fishbone), two dentists (possible TMJ) and another ENT. Now I had pain on my left jaw, by the ear, around the neck, hoarse voice and still a sore throat, until my Dr. suggested Dr. Issy Seliger in Pembroke Pines/Hollywood to see if I have trigeminal neuralgia. He is the only neurologist she recommends. After carefully listening to my long story of Dr's visits, c-scans and MRI, along with checking the spots right where it hurts, Dr. Seliger told me he's almost sure I have glossopharyngeal neuralgia; I'm having another MRI next week. When I came home and checked the condition online, I was astonished. All the nerve terminals on the drawings are exactly where I have pain, one by one. If he's this good and nailed it in one visit, I suppose your wife could try him. He's with the Sunrise Medical Group - Neurology.
Good luck.
Steve, I understand your frustration in finding someone to manage your wife's situation. I just read your post from close to a year ago & hope you have found a good doctor by now. I, too, live in south Florida & about 1 yr. ago began my search for a physician familiar with TN. I struck out. I worked in the medical field in Miami for about 25 yrs. and still have many contacts, none of whom could recommend a good neurologist. I did see one doctor and his plan for managing me was totally unacceptable. After researching this site, I made the call to the Mayo Clinic in Jacksonville and am on the waiting list to see a neurologist. In the meantime, with Red's guidance, I am planning to arrange for a support group for any one interested. We are in the early stages of planning, but want to find interested participants. Let me know if you and your wife are interested.
are you willing to travel for an evaluation to jacksonville. would you consider injections. I have some good possibi;ities. im also trying to do a group like dixie but closer to west palm.-lake worth. please tell her she has a friend and i would love to help. My email is listed. red or dixie can give you my phone number.
wheres the sunrise medical group. i need to diagnose other neuralgias, thanks so much
MVB said:
Hi Steve,
I started having excrutiating throat pain in early December; I woke up one night feeling as if I had someone poking my throat from the inside with an ice pick. I knew it wasn't a regular sore throat because it only affected the left side on a very particular spot, but unfortunately I had eaten fish with little bones a day earlier, and thought that might be the cause. After a few days, I went to my Dr., then to an ENT, (c-scan came back negative for fishbone), two dentists (possible TMJ) and another ENT. Now I had pain on my left jaw, by the ear, around the neck, hoarse voice and still a sore throat, until my Dr. suggested Dr. Issy Seliger in Pembroke Pines/Hollywood to see if I have trigeminal neuralgia. He is the only neurologist she recommends. After carefully listening to my long story of Dr's visits, c-scans and MRI, along with checking the spots right where it hurts, Dr. Seliger told me he's almost sure I have glossopharyngeal neuralgia; I'm having another MRI next week. When I came home and checked the condition online, I was astonished. All the nerve terminals on the drawings are exactly where I have pain, one by one. If he's this good and nailed it in one visit, I suppose your wife could try him. He's with the Sunrise Medical Group - Neurology.
Good luck.
Steve, I live in Boca, Did u find a dr?
There is a lot of pain going on in Florida! I live in North Central Florida, I've gone up to Baptist Hospital in Jacksonville and now Shands in Gainesville.
Hello everyone. I am looking for a neurologist in the Tampa Bay area. I think I may have TN and want to find an understanding doctor. I am no computer whiz and do not know how to ask the lady below that said she had a doctor in Tampa. I would appreciate it if she would somehow let me know their name so I can get an appointment. Thanks so much.
Thank you for all of the responses. I have been away for a while and no I have not found a DR yet.
MVB, thank you for the help, I will pass this info over to my wife...hopefully she will go.
She also suffers from Chronic autoimmune urticaria since she is 14 (she is 29 now). Unfortunately she is so sick of going to doctors she does not want to go to any more. Most of these idiot doctors are not sympathetic towards pain as many of you know, especially pain management doctors in FL because of the drug problems we have here. Unfortunately, because of her allerges my wife cannot take NSAI's and most medications with sulfites (or sulfates cant remember which) so she cannot take most pain medications like vicodin and percocet. She can only really tolerate morphone and dilaudid well. When a pain management Dr's hear that she can only take morphone for pain they immidiately think drug abuser and do not want to help....and it doesnt help that she is young.
When her TN flares up she just sits on the couch and cries and breaks my heart that I am powerless to help. Unfortunately her allergist told her that she should not be on anti-convulsives because of her other autoimmune issues (she is also allergic to her own antibodies) so now she is in a real catch 22.
Her allergist wont prescribe morphone, neither will her neurologist and neither will pain management even though she has a letter from her allergist stating she only really tolerates morphone well and if she takes something like vicodin she will break out in hives.
I am trying to convince her to not give up and find soemone that is willing to help at least with the pain but she is sick and tired of wasting time and money only to be told the same BS like "I think morphine is too strong for TN so I wont prescribe it"
We are both exhausted and just want help but nobody wants to help in the specific way her health rquires.
tiffanie said:
Steve, I live in Boca, Did u find a dr?
Hi Steve, I just joined the group myself and live in south Florida. I also went to the Sunrise Medical Group, in Hollywood and saw Dr. Maniar. He was great, and diagnosed me quickly. I didn't continue to see him because I chose not to take the seizure medications and was looking for a more "outside the box" treatment. I saw last week a Dr. Chapman at the Non Surgical Orthapedic center in Fort Lauderdale Beach area. He is an Osteopathic doctor. He spent 2 hours with me on my consultation, and did some manipulations and found he really listened, didnt judge, and was empathetic. The first day, the day of the manipulations I was in horrible pain, but the following couple days I felt a lot better and was able to eat solid food with minimal pain. I might have pushed my self to hard, with eating and talking too much (I was also under a lot of stress those days) because the following day the pain returned. What I like about this doctor is that he wants to find a solution with me, and understands why I don't want to take the seizure meds. From what I've read about adjustments is that it take a few visits to work. He did give me some Lyrica to try, but I haven't. Most doctor's wont prescribe narcotics for this affliction, because they have not been proven to work, and down here in south Florida the doctor's are very cautious about prescribing them because south Florida has been under the microscope for the many pill mills. Unfortunately those of us with pain are the ones that suffer. She might try a Physiatrist (not to be confused with pyschiatrist). A physiatrist deals with chronic pain, and prescribes pain control and therapies, but you normally have to see them once per month. Hope I was able to help, and I hope your wife finds some releif.
Does anyone know a dentist in South Florida familiar with TN and a Neurologist? I think the injections increase the electric shocks. Can be in Palm Beach County or Broward County. Thanks you very much