Has anyone gone to the TN Center at John’s Hopkins? The procedure discussed in the video on their site seems very interesting.
Hi Candy-Yes I have had a rhyzotomy and an MVD at Hopkins. What would you like to know?
Jon
Dr. Lim was my second choice if I could not go to Dr. Casey in Michigan for my MVD.-- But I got Dr. Casey.
When / If Casey retires /Dr. Lim is who I would go back to for a 2nd MVD if needed - I'm from Missouri
Hi Jon,
I am not adapting well to meds and was wondering how the procedure worked for you. My physician recommended Dr. Lim and my brother lives right outside of Baltimore. How are you post surgery?
Thanks kc Dancer MC.
I went to Hopkins and Dr. Lim . I had a glycerine rhizotomy done. The proceedure helped for a few weeks with the TN1 symptoms but not the TN2 . I was referred to Dr. Brown by Hopkins in NY, and he just did an MVD on October 3rd for me. One thing to note about Hopkins is they will only operate if you have TN1 pain only and not the TN2 pain. One of the members, Dixie is having her MVD there Thursday, I spoke to her this weekend and Dr. Ben Carson is doing hers, but he is retiring at the end of the year, then Dr. Lim will be the only one doing TN from now on.
If you have any questions feel free to message me. I also went to Hopkins btw because I live in Delaware and am only an hour outside of baltimore
Wendy
Thank you Wendy. I am so new to the terms tn1 and tn2 that I have some doubts
I know I have tn1, and I know that the meds are depressing me. I can also feel the pain try to break meds. through the meds. I am so confused about what to do.
Last October I had a Rhyzotomy carried out at Johns Hopkins by Dr. Carson. It only lasted about 24 hours and then I had an MVD carried out by Dr. Lim and Dr. Carson. I did have a very complicated recovery but the TN1 ( typical Trigeminal Neuralgia) was largely solved. However, it turned out that I developed ( or had always had) T2. At that point, the surgery team were no longer interested in me. I did end up getting referred to Dr. Jason Rosenberg who runs the headache center at the bay view campus. Very difficult to get an appointment but he is an angel and used medication very sensitively to help ease the situation…he really cares. Happy to discuss this offline if you message me.
the tn1 is more of the electical shocks, where the 2 type pain is more the teeth pain, boring in the ear and that kind of thing.
I understand the depression and I am actually taking antidepressants now, it may help you, this is not an easy thing to deal with, so hang in there
Wendy
Candy said:
Thank you Wendy. I am so new to the terms tn1 and tn2 that I have some doubts
I know I have tn1, and I know that the meds are depressing me. I can also feel the pain try to break meds. through the meds. I am so confused about what to do.
Hi - I just requested an appointment at Johns Hopkins and I am so disappointed to see that they won't operate if you have TN1 and TN2:( Why not?? Do you know? Thanks for any more information.
crashgirl said:
I went to Hopkins and Dr. Lim . I had a glycerine rhizotomy done. The proceedure helped for a few weeks with the TN1 symptoms but not the TN2 . I was referred to Dr. Brown by Hopkins in NY, and he just did an MVD on October 3rd for me. One thing to note about Hopkins is they will only operate if you have TN1 pain only and not the TN2 pain. One of the members, Dixie is having her MVD there Thursday, I spoke to her this weekend and Dr. Ben Carson is doing hers, but he is retiring at the end of the year, then Dr. Lim will be the only one doing TN from now on.
If you have any questions feel free to message me. I also went to Hopkins btw because I live in Delaware and am only an hour outside of baltimore
Wendy
Honestly I think its a numbers game with them. From what i know, Dr. Carson is retiring at the end of the year, that leaves Dr, Lim, who is his “protege” so to speak. Dr. Lim is really the guy you go to when you have a tumor no one else will remove, and he is quite successful with that. The TN , in my opinion , was a secondary item for him since he was taking over Dr. Carsons practice. I also believe that since the numbers are far worse if you have TN2 for an mvd being successful, that they dont want to venture there and ruin thier rating for neurology. Its just a hunch on my part, but truthfully, I am glad they referred me to Dr. Brown in NY, instead of a 10 minute visit with Dr. Lim at hopkins on my first consult I got almost 2 hours, and continue to get support from his office.
Wendy
Hi Wendy, that sounds logical to me. So I am sure I understand, you had a glycerine rhizotomy and the results only lasted a few weeks? And that was for TN1 - the shocks. You have now also had the MVD? This is more to help with the TN1 as well? How do you feel? Are you having any relief from the TN2 pain? I suffer from both - more the TN2 if I had to pick one. Thanks.
Jenny
Yeah basically...Dr. Lim did the glycerine rhizotomy basically as a test to see what could be helped, it got rid of the electric shocks, but not the ATN/tn2 pain in the teeth or my ear pain. I have mostly type 2 pain as well, but when I first got this I had electric shocks all day non stop for 3 days until I was put on anti-seizure. Dr. Lim decided to try the rhizotomy because I cant work or function on any of the meds, I drive all day for work, plus I had some really bad reactions to everything. I am allergic to most phamaceuticals etc, even soap. I didnt get shocks for about 3 weeks after the rhizotomy which was the end of august. Dr. Lim then referred me to Dr. Brown, who did the MVD in october, I had two compressions repaired. As of now , I still have tooth pain, but no where near as bad (motrin is all I take now) and the ear pain is only once in a while, I do feel like someone keeps punching me in the head/jaw, but per the neurosurgeons office it can take months for these pains to go away because the nerves have to heal and "settle down"
I am hoping they are right, but I am off all the meds and am feeling pretty good and planning to go back to work soon, so thats a plus.
Wendy
jyoung said:
Hi Wendy, that sounds logical to me. So I am sure I understand, you had a glycerine rhizotomy and the results only lasted a few weeks? And that was for TN1 - the shocks. You have now also had the MVD? This is more to help with the TN1 as well? How do you feel? Are you having any relief from the TN2 pain? I suffer from both - more the TN2 if I had to pick one. Thanks.
Jenny
Good for you - only Motrin - that is amazing! I hope your "punch in the head" feeling subsides and going back to work will feel great. I wish you the best! As for that tooth pain, as I type this I am sitting in my cubicle, tortured by breakthrough pain and thinking of ways to pull out my own teeth - not really;) I am at my worst right now though and hope my Dr. can help me tomorrow. That feels so far away:(