I can't believe it but I filled out a questionnaire for Hopkins and sent it back, along with a few other documents they requested. In less than a week they called me and gave me an appointment with Dr. Lim. I don't have to wait to go through the entire process with the neurology clinic....I still had five months until my appointment!
I'm excited and I'm scared at the same time. It's just a consultation but I can't believe I have the appointment with an actual specialist after 30+ years of fighting for answers. I am at the point where I haven't been able to work for 18 months. I'm going to lose my house and everything but my body just shut down out of exhaustion from the pain and the medications.
For those of you who pray, please say a little prayer for me.
Thank you all for being such a wonderful and understanding group. This is the only place that I could have written this and felt understood.
So glad you were able to get an appt. I am in VA and I am looking into different options for treatment. What are you hoping Dr. Lim will do for you? Are you wanting to have some sort of surgery or does he treat TN in non-surgical ways?
I want to thank all of you for your well wishes and prayers. Dr. Lim is a neurosurgeon at Hopkins. Apparently his specialty area is the classic trigeminal neuralgia, but it has been believed that I have TN from a dental injury.
But the kicker is that he feels that I may not even have TN at all and instead he thinks I might have a neuroma. They found that my right eye blinks less than my left eye and that I don't hear as well on my right side either, along with the pain and the migraines. So....off to another specialist to see if he can find this neuroma. If not, then I am to go to the other specialist at Hopkins that deals with facial pain, but it could take a year to get in to see him.
Wow, what a journey. I already knew that I didn't have classic trigeminal neuralgia, now I'm learning of something I've never heard of as a possibility.
Thank you all. Yes, I am in the system at Hopkins, which is what I have been trying to achieve. But I am so confused. Diane, you stated that Dr. Lim is brilliant with neuroma but he is actually referring me to another specialist there at Hopkins, a Dr. Tufaro. He apparently started out as a dentist and is now Director, Head & Neck Program for General Surgery Associate Professor of Plastic and Reconstructive Surgery at Hopkins. I think Dr. Lim is sending me to him because he feels that the cause of my problem stems from the removal of my wisdom teeth. That is what I also believe. I have been dealing with all of this for so long and when I finally got a diagnosis, while I didn't like the diagnosis, at least I had some answers. Now I'm back to not knowing. My wisdom teeth were removed when I was 19. I started having bouts of pain in my mid-20's and I just got a diagnosis of TN a few years ago. I am now 53 years old and have been dealing with constant pain for the last 10 years or so, which just keeps getting worse.
I am so glad you all are here. When I try to talk about it at home, no one wants to hear it. My mother, who lives with me, told me last night that I shouldn't give it any thought or discuss it because after all, I don't know anything right now.
I had a Mvd in March of this year ! I had a consult with two neurosurgeons before I decided Dr. lim at Hopkins was one and Dr Shani out of Richmond was the other ! Dr . shani has a passion for TN and I could not ask for a kinder or more experienced surgeon ! Dr Shani spent a hour with me and my husband explaining all my choices ! Dr. lim gave me 10 mins and answered his cell phone twice in that 10 mins ! please call Dr . Shani for a second opinion! my tn one is better , but I still have the deep burning pain ! Dr. Rosenberg is amazing at Hopkins and he is worth the wait !
Thank you Annie - In all honestly, that pretty much sums up my appointment with Dr. Lim. I spent most of the time with his PA answering questions and having a quick exam with her. He can running in - he had been in surgery - spent his few minutes with me - gave me his opinion and flew back out. No time for questions, etc. I admit I was a little thrown off. Apparently he had not been scheduled to there that day and when he was, two patients were selected to see him, I was one of them.
He did tell me that if Dr. Tufaro didn't find a neuroma, he wanted me to see Dr. Rosenberg. I'm glad to hear that he is worth the wait, even if it is a long wait!
Cathy In MD
Annie said:
I had a Mvd in March of this year ! I had a consult with two neurosurgeons before I decided Dr. lim at Hopkins was one and Dr Shani out of Richmond was the other ! Dr . shani has a passion for TN and I could not ask for a kinder or more experienced surgeon ! Dr Shani spent a hour with me and my husband explaining all my choices ! Dr. lim gave me 10 mins and answered his cell phone twice in that 10 mins ! please call Dr . Shani for a second opinion! my tn one is better , but I still have the deep burning pain ! Dr. Rosenberg is amazing at Hopkins and he is worth the wait !
It sounds like Dr Lim is trying to cover every base. Sorry, you are going through the doctor bounce though.
Cathy in MD said:
Thank you all. Yes, I am in the system at Hopkins, which is what I have been trying to achieve. But I am so confused. Diane, you stated that Dr. Lim is brilliant with neuroma but he is actually referring me to another specialist there at Hopkins, a Dr. Tufaro. He apparently started out as a dentist and is now Director, Head & Neck Program for General Surgery Associate Professor of Plastic and Reconstructive Surgery at Hopkins. I think Dr. Lim is sending me to him because he feels that the cause of my problem stems from the removal of my wisdom teeth. That is what I also believe. I have been dealing with all of this for so long and when I finally got a diagnosis, while I didn't like the diagnosis, at least I had some answers. Now I'm back to not knowing. My wisdom teeth were removed when I was 19. I started having bouts of pain in my mid-20's and I just got a diagnosis of TN a few years ago. I am now 53 years old and have been dealing with constant pain for the last 10 years or so, which just keeps getting worse.
I am so glad you all are here. When I try to talk about it at home, no one wants to hear it. My mother, who lives with me, told me last night that I shouldn't give it any thought or discuss it because after all, I don't know anything right now.
I am sorry to say I also have nothing nice to say about Dr Lim
He also spent 15 minutes with me to tell me my symptoms are not TN
And my MRI shows nothing.
But as we all know we must forge ahead and find the right Dr.
I went to see Dr Mark Mclaughlin - Princeton Brain and Spine in NJ
Spent an hour with me- looked at my MRI - (the same one Dr Lim reviewed)
And showed us the area in question
Happy to say Mvd surgery successful. Pain free
I want to thank all of you that have answered. I had been so excited but honestly felt a bit deflated when I left there. I'm not sure what is causing the pain at this point...again. He told me that I didn't have classic TN, but I already knew that. It would be TN2 or ATN or whatever they are calling it at Hopkins. The problem started after having dental surgery. All of that was in the information that I sent to them and I can't help but wonder if he even read what I sent.
His key determination seemed to be based on the fact that I can brush my teeth without pain and most of the time I can touch my face without producing pain. The truth is, my face is still partially numb from the dental procedure that was performed over 30 years ago. Strangely, cold wind will set things off and eating is becoming an increasing issue.
My pain appears to be getting worse as the sensation, which was completely gone after the surgery, has slowly return over the course of the last 30 years. Hopkins has called me with an appointment to see the next specialist, who is to determine if in fact I have a neuroma, and I am scheduled to see him on January 4th. I've been also following another topic here about pain in teeth. I have been dealing with that as well but now it seems to have spread to my other side. It is a journey and I am so thankful that I can discuss it here and know that I will be understood. I also have the names of a few other doctors that aren't that far from where I live, just in case I decide to take another route.