I'm flying from Atlanta to Bethesda to see Dr. Michael Lim at Johns Hopkins next month. After filling out a lengthy questionnaire, they scheduled a consultation appointment for me. They only asked that I have a referral from my general practitioner and bring a copy of the MRI my local neurologist ordered. Can anyone give me any advice on what else I could/should do to prepare for this meeting? Specific questions I should ask? Things I should be on the look-out for?
Of course I've read all I can online but I'd really appreciate some real-world practical advice as I go into this consultation. I have both TN-1 and TN-2 and am currently on Trileptal and Cymbalta with mediocre results.
Thanks so much!
Ask what happens to somebody with your type,
if they stay only with meds for life?
(As this is progressive)
Ask what he would suggest surgery-wise… If this was his mom or daughter? Percentage of outcomes and long term outcomes.
he is a top face pain guru who has helped many… So i wouldnt ask directly about his successes…
But success stories …success stories in general?
He is soooo respected… After just a few questions…he will give you all options.
He might even give allllll the options to you before you ask…!
Relax, you are in good hands.
Find a video of him.
Doing That made me like dr. Casey and dr. Lim!
Even if you don’t hear what you want to hear… You have seen the best… And not everybody can!
Thanks so much for your input! Funny, the video I found of Dr. Lim is what made me decide to fly up to MD to see him. Other than a few CA doctors, he impressed me the most. Dr. Casey was a close second. Did you see both of them? What did course of action did you ultimately choose?
I chose casey… Because hes had his hands… In thousands of TN heads, since 1970s…because he wrote THE BOOK.
And because he did 99% of my consult…via email and my records…
I did not meet him in person till the day before MVD…but felt like he fit like a glove. Litterally…LOL
Mine was only TN1… He could do it in his sleep! He found two compressions, and no pain for two years now…no meds.
I watched his video…tides of neuropathic pain… Much about ATN.
But his humor and 100 other things …made him…for me…came through video.
Was a plus to drive home…
I was afraid to fly
RIGHT AFTER MVD
IF i were to need another MVD after Casey retires, i would go to Lim!
I just want to say a big Thank You for all of your help on here. I suffer from horrible burning in my mouth and took your advice on the mouth wash. It only helps for an hour but it is normally enough time to get some much needed relief!! I also got Lidocaine Cream for the right side of my face and it helps also :)
I also wanted to tell you that after the RadioFrequency Ablation I had in December that I have had nothing but problems. Pain, tugging, boring, electrical feelings, (I feel like I have a 10-20 pound rock on my cheek) burning of cheek, the whole inside of my mouth. My NS states that he doesn't know what else to do with me, that he has never had a patient like me before, and the only medicines that he deals with are Tegretol and Neurontin. Among all the other issues that I now have due to the surgery I have developed a medication rash. I took your advice and a week or so ago I e-mailed Dr. Casey and he e-mailed me back. He answered as many questions as he could being that he does not have my records, etc. I have many questions for him and need to get a full understanding of what I need to do next, whether it be another surgery or what have you. (I have been dealing with this for 13 yrs. and just can't afford to not to go see an expert.) I took a chance last week and contacted his office to see if and when I could make an appt. with him. It just so happens that he had an opening. I will be driving up to Michigan to see him tomorrow.
Thank You so much for all your postings, help and true kindness!! If you have any specific things you think I need to have prepared for him since you have seen him, I'd be interested to know.
Deb- Johns Hopkins is an amazing hospital. I did go see Dr. Carson a couple of yrs. ago and had a Glycerol Rhizotomy which lasted two yrs. The entire staff and surgical department was wonderful and very caring. I wish you the best and will keep you in my prayers.
Sending positive energy to ya'll....Jodi (sorry for the long post)
Thank you all for your input! I know how fortunate I am in being able to go see Dr. Lim. I am hoping for solutions for ALL of us wrestling the TN monster.