I recently came across Johns Hopkins Center for TN. they are the only medical center I’ve seen with a place specifically for us. has anyone (especially my ATN co-sufferers) had any experience with them?
Isn't it Dr. Ben Carson that is supposed to be good there? I'm considering a visit myself. I have atypical type II brought on by a jaw procedure that gives me constant mouth/teeth pain 24/7. Absolutely no fun. What about you? You had any help with anything?'
Tinkerball
aka ■■■■■■■■■■■■■■■■■■■■■■■
I am at the very beginning of my journey. still waiting on inital doctor appt, as no one seems to know anything about ATN here. so I was also wondering if I should make the trip! if you decide to go, let me know. maybe we can get a twofer. 
I am seeing Dr. Michael Lim at Johns Hopkins for TN (he is in Dr. Carson's office). I have never been told if I have ATN or TN1, however because of the pain I am in, he decided it was time to do the MVD... I am scheduled for July 31st.
I was told by my neurologist that Dr. Carson was the "Pope of Trigeminal Neuralgia" when she referred me to him. I got a consult pretty fast (considering I was the one who sat on the paperwork for so long). He did need to do the MRI again, which my insurance company balked at. So he worked with Advanced Radiology and got them to do a "recall MRI". I was scheduled for surgery way sooner than I thought, so soon in fact that I pushed my date back- in order to attend a rock concert (I had front row seats to my favorite band- and my friend from London decided to fly in to join me). I am now scheduled for Aug 9th.
I have seen Dr. Lim's video online discussing all of the different options, and he is a great surgeon as well. Best of luck tnt1230! Let us know how you did!
Who all has now gone to Dr. Carson for treatment of their TN and was your surgery "successful?" I am seriously considering going to him but have hesitated because I have atypical TN caused by TMJ surgery 3 years ago. As you know, we Atypicals historically do not have great results with pain relief after MVD or GK surgery but it's not always the case. I went to "The Pope of TMJ Prosthesis Surgeries" or "The DaVinci of TMJ Surgery" and ended up without much of a life or quality of life and it was the first jaw surgery I ever had. I wasn't a frequent flyer of surgeries. So, I'm a little leary now but I am just like you all...we are all seeking pain relief to help regain our lives back.
So, what kind of surgery did you have or are you having (Not just hfavorite and tnt1230 but everyone who has used Dr. Carson), i.e. MVD, gamma knife, etc.? Will it be the key hole type or the traditional kind?
I hope there are still others tuning in who have had good results so they can let the rest of us know how it's going post op. I've also heard that Duke has some pretty good MVD surgeons, too.
Good luck TNT and HFavorite. I would love to hear from those of you who have had recent or distant surgery and please let me know how you are doing. Is insurance covering the cost of most of this?
Do any of you have problems staying awake? I am having problems staying focused due to daytime sedation. Some of the sedation may be caused by pain meds, naturally, but I'm not sure all of it is. Is this a common problem for us TNpatients? I'll just nod off almost in mid-sentence. My eyes will glaze over awhile during driving even. I don't actually go to sleep, but it's like I get in this hypnotic/trance-like glazed over feeling. I will do that even while trying to read or even type now on the internet. I get 8 hours of sleep but ever since the TMJ surgery and all of the post op problems, I've gotten very fatigued, nauseated , tired/malaised feeling, etc. Does this happen to any of you? I'm only on a 50 mcg fentanyl patch for pain and that doesnt' even do the trick, but i don't want to go up higher. I've been on all the other things (elavil, neurontin, lyrica, etc. with no success and narcotic with no success). My pain in on both sides of my mouth in every tooth, my gums, palate, tongue, lips, and chin. I've had nerve blocks in V2 and V3 but it only works for 24 hours. Radiofrequency ablations in these nerves 3x did nothing. But do you all have the excessive day time sedation?'
It sounds like getting a good thorough exam from Dr. Carson would be a good idea, however. I have to have more jaw surgery to straighten out my prosthesis. "The Pope" put in in crooked. Red tells me it might be best to have the jaw surgery first and then the pain surgery if getting this prosthesis sitting in proper position doesn't give me some relief.
I know there's a group of TN patients who also have TMJ pain. Before you have the TMJ surgery, talk to me first! The docs don't tell you everything you need to know about jaw prosthesis surgery.
Thank you all in advance for letting me know about Dr. Carson, that group and Duke, etc. I pray your surgeries will give you the pain relief you are seeking and deserve!
Tinkerbell aka Tracy in Georgia
tracyburttata@gmail.com
hfavorite said:
I was told by my neurologist that Dr. Carson was the "Pope of Trigeminal Neuralgia" when she referred me to him. I got a consult pretty fast (considering I was the one who sat on the paperwork for so long). He did need to do the MRI again, which my insurance company balked at. So he worked with Advanced Radiology and got them to do a "recall MRI". I was scheduled for surgery way sooner than I thought, so soon in fact that I pushed my date back- in order to attend a rock concert (I had front row seats to my favorite band- and my friend from London decided to fly in to join me). I am now scheduled for Aug 9th.
I have seen Dr. Lim's video online discussing all of the different options, and he is a great surgeon as well. Best of luck tnt1230! Let us know how you did!
I have been to Dr. Michael Lim at Hopkins, he did a glycerol rhizotomy on me, I had some relief from the shooting pains but the boring pain in my ears and teeth is still there. Dr. Lim referred me to Dr. Brown in Long Island NY, per Dr. Lim, he only deals with TN1 pain and felt it would be better for me to go to Dr. Brown who specializes in the atypical pain. I never got a chance to meet dr. Carson , so I dont know if I would have had a different result with him. Dr. Lim felt that he could make me worse since he doesnt really study the a-typical type pain. Message me if you want more specifics
Wendy
Hi,
Hope this is not too late. I am ATN. I saw Dr. Lim. I was told that Johns Hopkins (including Dr. Carson) does not treat ATN patients and was referred to an ATN doctor in another state.
Don
Don, were you referred to Dr. Brown in NY? I saw him last week and am scheduled for an MVD on October 3rd with him. If you are contemplating going to him, I have to say he was wonderful to see, he spent an hour and a half with me, going over everything including explaining my MRI. Feel free to message me
Wendy
Don said:
Hi,
Hope this is not too late. I am ATN. I saw Dr. Lim. I was told that Johns Hopkins (including Dr. Carson) does not treat ATN patients and was referred to an ATN doctor in another state.
Don
may I ask what dr you were referred to?
Don said:
Hi,
Hope this is not too late. I am ATN. I saw Dr. Lim. I was told that Johns Hopkins (including Dr. Carson) does not treat ATN patients and was referred to an ATN doctor in another state.
Don