So I haven't posted on here in quite some time but I wanted to share what's been going on. Last June I had an MRI done which found blood vessel compression on the right side trigeminal nerve. Long story short, I am scheduled for MVD surgery this Tuesday at Johns Hopkins with Dr. Lim. I'm excited but at the same time I'm also very nervous as this is the first time in my life I'll be having a major procedure and going under general anesthesia.
Good luck with your surgery John. I had the same surgery there in 2009 with Dr. Carson. A friend of mine from Dallas flew up on the first of November and had MVD surgery with Dr. Lim. She is completely pain free.
I had my surgery on a Thursday and walked out of the hospital on Saturday! My thoughts and prayers are with you. It is scary, but Hopkins is an amazing hospital, and Dr. lim does these surgeries everyday. Good luck!
Good luck with your procedure. You're doing it at the right place. Please come back and share your success with us.
I couldn't wait to have mine done, to have answers in black and white (besides the 3-D MRI) and of course the relief of pain. I had mine done in 2009. My OR nurse had the voice of an angel, as they put me to sleep, she said "sweetest of dreams"and smiled. Then I woke in ICU, didn't have TN pain then but pain from the screws and halo, but the right pain medicine helped and I was back home in four days. Surgery was the easy part, there was still a healing process after I got home. Be glad to answer any questions you have. kg,RN
hope all goes ok John,same scenario with my case ,blood veesels are scissoring my nerve so I am to have a glycerol injection before Xmas just to try and help with the pain over the festive period and then an MVD in the new year but I am terrified.
Hi, John—I'm new to this post, but not new to TN pain. I had MVD surgery with Dr. Carson in 2006 an it took care of the "largest kitchen knife in the kitchen stabbing pain in my ear" type pain. When I woke in ICU, it was totally gone! A HUGE headache was there, but the amazing thing is that I went to sleep, woke up and the headache was gone! Johns Hopkins and Dr. Carson are amazing, I'm sure Dr. Lim is awesome as well. My only regret is to NOT have done the MVD first. Instead I had 2 Gamma Knife Radiation burns to the nerve that are still fussing to this day! Botox injections and rotating meds help a LOT, but I can't help but think the MVD first would've cut to the chase and put this behind me. The thing that made my husband and I choose GK x2 is that the MRI did not show an offending vessel (as sometimes it will not) but Dr. Carson found it! His technique was to use muscle from the scalp to wrap around the nerve rather than the teflon used in most cases. I'm over 5 years out from MVD and have not had that drop to your knees pain since the MVD. I will be praying your story of recovery is amazing and than you will be pain free when it is over. Blessings to you! LyndaS
Hello John - I'm also new to this post. I hope your surgery went well and you are recovering nicely. I am having the same surgery with Dr. Lim on December 5th and I'm very nervous (yet happy to hopefuly be off of all of the medication I'm on). I've had TN for almost two years now. I was pain-free for awhile in the first year, but then this nasty beast returned and my original medication (Tegretol XR) did not work. I was put on Trileptal and eventually became pain-free for 6 weeks, but that too, stopped working and the pain came back full force. My doctor then had me ween off of Trileptal to ween onto Lyrica. During the period of time, I had the worst TN attack of my life (how appropriate that I was at work and became hysterical - mascara running, the works, and was eventually sent home by my boss). So now I am on a combo of both.
It finally took awhile (4-5 months, I can't remember) but I slowly became pain-free on this combo of drugs as I was waiting to get an appointment with Hopkins (I made the appt after I had that TN attack at work). Now, I am pain-free (knock on wood) from the meds, but that makes me nervous too.
Although these meds are working, I've decided that I am still having the MVD, regardless. Tests have shown that I do indeed have compression on the right side of my trigeminal nerve (in 2 places actually) and I am so tired of being on medication and the lovely side effects that they bring. Also, I still fear that the meds will stop working, so I'm moving forward with having the MVD.
Has anyone had MVD even though medication has helped you become pain-free for awhile?
John - I have confidence that Dr. Lim will take great of you so that you can move forward with your life! Please let me know how you're doing! I'll be in your same shoes in 2 weeks from today!
PS. I have joined this site because this disorder has totally stripped me emotionally. Knowing that I'm about to have major surgery scares me to the point of panic. Having to see my family watch me go through all of this has taken its toll on me, too. They were never able to comfort me when I had the lightening bolts of pain go through my face. I'm sure you all know what I mean. Thankfully, my husband does understand this disorder very well, as he has been watching me live through it. My thoughts and prayers are with everyone living with this horrible disorder. - Michelle
Hi All,
Thank you so much for your kind words and well wishes. They really helped me going into the surgery. I'm happy to say I had the MVD done a week ago today and I have been pain free since that day. Dr. Lim and his team were absolutely fantastic as were the doctors and nursing staff in the Neurosurgery ICU and the general Neurosurgery hospital ward. I came out of surgery at 4:30 PM and was in the NICU by 7:00 PM. I spent the night in the NICU and the next day I was moved to the general neurosurgery patient area. I was released Thursday afternoon. I cannot speak highly enough about Dr. Lim and his team, they did a fantastic job and really helped to allay my fears on the day of the surgery. So far the worst part of the recovery has been headaches and some rather significant neck pain. But those are temporary and Dr. Lim warned me about all of them.
As far as the TN goes, Dr. Lim found a large artery compressing the nerve which he fixed and he also removed scar tissue from the nerve that had built up. He said he felt there was a very good chance that the TN would be taken care of and so far it has been! I am very happy that I went ahead with the surgery. I was really scared but I'm glad I was able to overcome my fears and go through with it. Waking up in recovery and not having any pain was a truly great feeling.
Good luck John and I'm sure all will go well. My sister had the operation a couple of years ago it she is pain-free and fine to this day!
Jody
Hi John! Congratuations! I couldn't be happier for you! Your road to recovery is beginning to calm the fears I've been having over the last few months. (My surgery was originally scheduled for early Oct. and was rescheduled three times. The anticipation was starting to make me sick.).
How painful is the site where surgery was performed? And... were you sick when you awoke from the surgery? I forgot to ask Dr. Lim how long I will have to wait before I can wash my hair again! He assured me that I will be able to cover the surgery site with my hair. :) Please keep me posted on how you're feeling! Thanks for raising my confidence level even higher about Dr. Lim!
Hi Michelle,
Sorry it took me a while to respond, I've been kind of laid up! To be honest the site of the surgery was quite painful after the surgery but they gave me fentanly for several hours after I came out of the OR and then switched me to oxycodone. It still hurts but it's manageable. It's the first 4-5 days that are the worst. As far as washing your hair I'm afraid I don't have good news on that front. I was told I wouldn't be able to wash my hair until 48 hours after I had my stitches taken out which won't be until this Thursday for me. So as of tomorrow it will be two weeks since I've been able to wash my hair! And I won't be able to wash it until this Saturday. But hey, if that's the biggest hardship I have to deal with too get rid of TN I'll be happy to put up with it!
You are in really excellent hands with Dr. Lim, I couldn't be happier with what he's done for me.
Hi John - how has this held up since you had the MVD?
how did you connected with Hopkins?
I am working with Dr Jacabson at the Washington Brain and Spine out of Subarban and Wash Hosp Center