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?
(sorry for duplicate post -I posted on Type 2 board 1st)
I am currently dealing with Dr. Lim there, I met with him a few weeks ago and he thinks I can have an MVD with very good results. I have an appointment on the 21st for the MRI and then I meet with him again. I will keep everyone posted on my progress. I really liked him, he didnt rush my questions or act like he was in a hurry, watch his seminar on thier website, it is very informative and if you make an appointment with them, they ask you to view it first. Feel free to message me if you have any questions.
Wendy( crashgirl)
great to hear; thanks Wendy. I’ll be anxious to hear your results - prayers & best of luck. (do you have type 1 or 2?)
both actually, but he thinks he can get rid of 90 percent of the pain, and the rest I would only need motrin for, I just want to get off these meds, I have to go back to work or I will go crazy soon, I am sure!!
that would be amazing! i will wait to hear 
Wendy, did Dr Lim see the problem on the MRI and or MRA? My daughter started with type 1 and also now has type 2. It all started after having her nose "rebroken" to be straightened after it was broken in an accident. She is scheduled for MVD but Dr.Alksne, San Diego, cautions against MVD it you can't see any nerve compression. Also she has high risk insurance and supposedly must have her treatments in the state where she lives, which is no where near Johns Hopkins. Thanks so much.
crashgirl said:
I am currently dealing with Dr. Lim there, I met with him a few weeks ago and he thinks I can have an MVD with very good results. I have an appointment on the 21st for the MRI and then I meet with him again. I will keep everyone posted on my progress. I really liked him, he didnt rush my questions or act like he was in a hurry, watch his seminar on thier website, it is very informative and if you make an appointment with them, they ask you to view it first. Feel free to message me if you have any questions.
Wendy( crashgirl)
Hi: I am just about to call (its harder than you think) to schedule an appt with the Center to explore my options
As an update, I just got off the phone with Tami she is Dr. Lims PA..she spoke to me for over a 1/2 hour and I really appreciated that. Tami advised that Dr. Lim only does an MVD on TN1 with great success and that he hasnt gotten into treatment for type 2 because the majority of his practice is for brain tumours. I had the glycerine rhizotomy as an experiment to see how much pain could be lessened ( ie:lab rat) before he would do MVD. Since I have mostly type 2 symtoms he was not surprised that the rhizotomy did not help. Tami referred me to a Dr. Brown in long island NY,, she stated he does MVD for type 2 with great success , but also uses different meds etc. Tami stated that Dr. Lim really wanted to help me because he understands I drive for a living, could see what pain I am in and realized that any medication and I do not get along.
Tami also told me they would keep in touch and do whatever they could to help, so I appreciate that, she will e-mail me any helpful hints or if something comes up that they think will work. They seem to think mine was a viral infection that caused this and perhaps the nerve will heal itself over time, but they arent sure.
I have to give it to them in that they tried to help and have kept in touch with me, and I would say if you have type 1 TN that I would definitly get in touch with them. It cant hurt!
My diagnosis , for what its worth, need more answers on this, was my small branch superior artery is in contact laterally.
Tami did say she was going to get more info from Dr. Lim on this and call me back with a more extensive description and a few more ideas
Wendy
So good to hear that Dr Lim & his PA are so attentive . I have considered seeing him but live in Arizona. I am seeing another neurosurgeon8/7 and so hard to wait as the drugs aren’t working very well. I had a MVD & it worked for 3 1/2 years & loved being pain free. I can’t function very well if taking the dosage to take the pain away. My original surgeon did the keyhole procedure but now know he doesn’t do many & agrees I should see a specialist. The new doctor is more knowledgeable about TN so hope he can help me.
If I see Dr Lim do you think I could get the MRI when there? Since he isn’t around the corner for me!!
But great to know you are getting such good direction! Good luck!
Linda I would call them and tell them how far you are coming and since you saw another neuro they may be able to work something out with you. It took me a month from my first consult to get the MRI, since it is the specialized Fiesta version and apparently there is only one person/doctor there that does it. If you leave them a message it can take 24 hrs to get a hold of them , message me and I will give you the phone number I have that bypasses the main switchboard. Its worth a phone discussion before you travel from Arizona. I was hoping they would help me more, I am only 1 1/2 hrs drive from there, so for me it was worth going in person, but I have been pleased by them , its just a shame he doesnt deal more with TN2 pain, but I understand where he is coming from, Dr. Lim is really the go-to guy for brain tumors that no one else wants to deal with.
Wendy
I am glad to read your discussions about Dr.Lim & Johns Hopkins. I have been e mailing a P.A. in neuro. I am filling out the paperwork and hope to get an appt. for consultation to discuss options for me--have type 1 TN. I live in the Fl. Keys and plan to fly up whenever.
Wendy & Linda, please keep me informed. Thanks, Dixie
are you e-mailing Hopkins Dixie? and if so is it Tami Buller? She is awesome and will give you more info than Dr. Lim will, he is typical in that respect that he just wants to cut and fix , whereas she is more of a talker and will explain in more detail
Wendy
Dixie said:
I am glad to read your discussions about Dr.Lim & Johns Hopkins. I have been e mailing a P.A. in neuro. I am filling out the paperwork and hope to get an appt. for consultation to discuss options for me--have type 1 TN. I live in the Fl. Keys and plan to fly up whenever.
Wendy & Linda, please keep me informed. Thanks, Dixie
I have been e mailing "Carol James, P.A.C., senior neurosurgical PA @ Hopkins-30 yrs. experience with TN patients." Are you familiar with that name? Tell me about Tami Buller. How does Dr.Lim compare to Dr. Ben Carson? EDucate me.
crashgirl said:
are you e-mailing Hopkins Dixie? and if so is it Tami Buller? She is awesome and will give you more info than Dr. Lim will, he is typical in that respect that he just wants to cut and fix , whereas she is more of a talker and will explain in more detail
Wendy
Dixie said:I am glad to read your discussions about Dr.Lim & Johns Hopkins. I have been e mailing a P.A. in neuro. I am filling out the paperwork and hope to get an appt. for consultation to discuss options for me--have type 1 TN. I live in the Fl. Keys and plan to fly up whenever.
Wendy & Linda, please keep me informed. Thanks, Dixie
Carol James is another PA , Tami is also one, I just happened to get Tami on the first visit. Dr. Carson is very famous, the movie gifted hands was made about him, give him a google and you will be amazed. I will send you a private message on my thoughts since it involves some of his employees opinions, nothing bad.
Dixie said:
I have been e mailing "Carol James, P.A.C., senior neurosurgical PA @ Hopkins-30 yrs. experience with TN patients." Are you familiar with that name? Tell me about Tami Buller. How does Dr.Lim compare to Dr. Ben Carson? EDucate me.
crashgirl said:are you e-mailing Hopkins Dixie? and if so is it Tami Buller? She is awesome and will give you more info than Dr. Lim will, he is typical in that respect that he just wants to cut and fix , whereas she is more of a talker and will explain in more detail
Wendy
Dixie said:I am glad to read your discussions about Dr.Lim & Johns Hopkins. I have been e mailing a P.A. in neuro. I am filling out the paperwork and hope to get an appt. for consultation to discuss options for me--have type 1 TN. I live in the Fl. Keys and plan to fly up whenever.
Wendy & Linda, please keep me informed. Thanks, Dixie
Are any of you using federally subsidized high risk insurance? I am & they say I cannot go out of state. If there was a way, I would do it.
I am lucky Jeanne, I have bc/bs personal choice, I work for an insurance company so my health insurance is one of the best you can get, I dont need referalls or anything like that. You may want to look at the tabs on the right under insurance and see if there is anything there that can help you.
Wendy