Hi fellow TN ers
Just Looking for Help and Advise I'm schedule for an MVD on November 14th with
Dr.Lim at Johns Hopkins. Can anyone give me some feed back on their experience with Dr. Lim.
It's all so scary and yet I know I need to get it done and over with! Hoping for the best for all of us
thanks
Sandi
Oh gosh…he was my second choice. But he was further than dr casey.
You are lucky! Many who have been helped with dr lim
Don’t come here any more!
Put lim
In search box
Then
Look at success stories tab above too
You are in good hands!!
Thank You For the info. I Find everything so helpful on this website. I'm Thankful to have found it and
I'm Thank full for people Like you Mimi,and Red for your knowledge and time.
I have Tn 2 I wonder how much of the facial pain will disappear ? I'm looking to hear from anyone that has had any successes with that after an MVD .
Thanks again for all time spent to help others
Sandi
Sundibell
Meant to say I have Tn2 with Electrical stabs also so I guess it's both Classic Tn and Tn2
Thanks again
Sandi
I'm with KC I have heard nothing but stellar reports about Dr. Lim. He would be very high on my list if I was going the MVD route. If you feel you are ready and have all your bases covered then it could be time to "Let Go and Let God"
""
Thanks Gail
I appreciate all the great reports and your input means a lot to me.
How long have you been battle this evil ?as I call it.
I hope your fight been ok for you
and love to hear from you soon
Sandi
sindibell
Sandi, it started about 11 years ago when I lived in Oregon and during a dental injection the dentist "nicked" my trigeminal nerve. My face light up like a Christmas tree and over a few weeks it kept happening, so I was started on Tegretol which managed the pain well enough that I could function and maintain a stressful, but fun career. Then fast forward 6 years when I moved to South Carolina and the pain started increasing so bad that I had to quit working and be heavily medicated. I believe the change in climate was the main trigger. You can read my profile for all the procedures and medications I have been thru. Most things help for 4-6 months, then they just stop working. I enjoy the good days when I can and politely bow out when I just can't handle being around people and situations. As my pain doctor told me I will have ups and downs and in between, but to expect any type of cure is unrealistic. Just ride the waves and enjoy those good days.
Hi Sandi,
I can't tell you about Dr. Lim (I had my MVD done by Dr. Casey like KC did), but I do know he is among the best. I can give you some advice though as you are looking forward to that date - about three weeks out now. You have no control over the surgery itself. You've already chosen a top notch TN surgeon, which will tip the stats in your favor - bravo! What you do have control over now though is getting your ducks in a row so to speak with care lined up post surgery - meals, household, kids, etc. Also, you have a good 3 weeks to get your body prepared for a major surgery. I spent 6-8 weeks on an anti-inflammatory diet recommended before major surgery. Essentially that means little to no red meat, dairy, white flour, alcohol, and sugar but lots of oily fish, lean protein, and a large variety of veggies, fruits, nuts and legumes for antioxidants. Also, you can up or add in supplements. I purchased a book on Amazon recommended on this site: The Rapid Recovery Handbook - Your Complete Guide to Faster Healing After Surgery by Motyka (MD & DO) and Mead (MSc). It was so helpful for me and honestly, I thought my recovery was fairly easy. I did have horrible nausea the first 24 hours after surgery but after that, it was much easier than I had expected. I had a pretty bad headache and neck pain for a few days that was managed pretty well with the meds but by day 4 or so it mostly lifted with just some over the counter pain relievers and not all the time. I began walking on Day 4 - just 10 minutes at first - and then every day adding a few minutes each day. By week 3, I was basically back to normal. I was probably 90% by then and the last 10% took a few weeks plus I was still on the high dose of Tegretol until I was 8 weeks out which made me extremely tired. I was back to taking spin classes 6 weeks out and to teaching them 8 weeks out. I will hit my one year mark in 9 days and am 100% pain and med free! I will be celebrating for sure on October 30th. Best wishes to you and I will keep you in my prayers the day of your surgery.
mybell said:
Hi Sandi,
I can't tell you about Dr. Lim (I had my MVD done by Dr. Casey like KC did), but I do know he is among the best. I can give you some advice though as you are looking forward to that date - about three weeks out now. You have no control over the surgery itself. You've already chosen a top notch TN surgeon, which will tip the stats in your favor - bravo! What you do have control over now though is getting your ducks in a row so to speak with care lined up post surgery - meals, household, kids, etc. Also, you have a good 3 weeks to get your body prepared for a major surgery. I spent 6-8 weeks on an anti-inflammatory diet recommended before major surgery. Essentially that means little to no red meat, dairy, white flour, alcohol, and sugar but lots of oily fish, lean protein, and a large variety of veggies, fruits, nuts and legumes for antioxidants. Also, you can up or add in supplements. I purchased a book on Amazon recommended on this site: The Rapid Recovery Handbook - Your Complete Guide to Faster Healing After Surgery by Motyka (MD & DO) and Mead (MSc). It was so helpful for me and honestly, I thought my recovery was fairly easy. I did have horrible nausea the first 24 hours after surgery but after that, it was much easier than I had expected. I had a pretty bad headache and neck pain for a few days that was managed pretty well with the meds but by day 4 or so it mostly lifted with just some over the counter pain relievers and not all the time. I began walking on Day 4 - just 10 minutes at first - and then every day adding a few minutes each day. By week 3, I was basically back to normal. I was probably 90% by then and the last 10% took a few weeks plus I was still on the high dose of Tegretol until I was 8 weeks out which made me extremely tired. I was back to taking spin classes 6 weeks out and to teaching them 8 weeks out. I will hit my one year mark in 9 days and am 100% pain and med free! I will be celebrating for sure on October 30th. Best wishes to you and I will keep you in my prayers the day of your surgery.
Hi Mybell
Thanks for the great info and the encouragement. I'm a firm believer in practicing healthy living & lifestyle. I will definitly order the book. I have already been loading up on supplements and eating the best I can. I can't chew on the nut so I blend them into butters. Almond butters , Walnut ect...
I cant believe you did a spin class 6 weeks post surgery. I hope I recover this quickly.!!! I also taught body pump,and a couple other classes and ran everyday. The TN has taken me to a whole different place in life. I cant wait to get my life back. Your an inspiration glad to hear that your 1 year free of pain and back to yourself
Peace
Sandi
sundibell
Dear Sundibell,
I too, have only heard wonderful things about Dr. Lim. I believe you are in great hands! My only choice from this point forward other than Dr. Casey (who I see now ) , would be Dr. Lim if Dr. Casey retired. I had my first surgery done @ John's Hopkins by Dr. Benjamin Carson when he was still practicing there. The whole hospital staff was amazing! I wish you all the best with your surgery on the 14th, sending you positive energy your way!!
..............Jodi
Hi Jodi
Thank you for your Reply and your good wishes. I do appreciate everyone's input!!! It really helps to know there is such
a good support group out there.!! I'm encouraged to hear that the staff at Johns Hopkins was amazing.
It sounds like you had two MVD'S?
I'm having the right side done but a lot of time I get a huge pulsing on the left side.It Scares me and I go into denial. I think I feel twinges there also but no electrical shocks. But I'm on a lot of meds and cant really tell what's going on anymore.
I'm praying that's it's not so.
did you have both sides done? I hope you are pain free!!!
Thanks
sundibell
Sandi
Hi Sandi,
Your very welcome! Yes, everyone on here is great. It is wonderful knowing that you are not alone and that what you are feeling, we are feeling. No one on here will say "It's all in your head", or "You are just too stressed, go home, take it easy and you will fell better", etc.
I have had bilateral pain off and on since my journey with this disease began, but for the most part the left side remains on the quiet side. Thank God for that.
I had a glyceral rhyzotomy done in 9/2011 @ John's Hopkin's. Only side effect was being numb on the whole right side. I was pain free for 26 months. And what a glorious 26 months it was!! Then 2 hours afters coming home from work one night....bam, it hit me again....I couldn't believe it. I really thought it was a nightmare but no such luck.
I went to a local surgeon and had a Percutaneous Radiofrequency Rhyzotomy done 12/2013. As for side effects, I have been blessed with every one of them. There was only a 3% chance of getting any side effects, so we were thinking that it would be great to have 5 years pain free and the 3% chance of side effects was really not a concern. Plus, I am a nurse and we were short staffed, so only being out of work for 2 weeks as opposed to having an MVD was a good deal. They did not see anything on my MRI to constitute an MVD anyway. If I had only known then what I know now, I would have pushed to see Dr. Casey or Dr. Lim back then for an MVD. I just did not do enough research, and I have kicked myself plenty for it!!
As for your twinges on the other side, I'm not sure what to tell you. I get them sometimes too and I often wonder if it is my mind playing tricks on me, or what. So, I just quit worrying about those little ones and concentrate on all on the craziness that I have going on with the right side of my head. haha
Oh, I wanted to let you know too, don't get discouraged and/or scared by all of the stories of us on here that have had several surgeries, that have been unsuccessful or that have crappy side effects. You need to know that the huge majority of people with success stories don't stay on here daily and share. There are several that do. They are fantastic and God love 'em for taking time out of their busy lives to help lift us up and help us keep the faith.
Sending positive energy,
Jodi
Like previous posters have said. You have an extremely experienced surgeon at an extremely experienced hospital. You have already maximized the odds in your favor. Good job.
Everyone's experience with MVD is different. Many success stories on this board, including mine. Many negative ones too as this is the nature of things, When MVD is successful and the odds are good that it will be, it FIXES the problem. Keep us posted and Best of luck.
Hi Rick from RI
Thanks for the good wishes!!! I'm happy to hear your MVD was a great successes for you. I know that you had your surgery done in Boston because I have read your successes post before. I am from the Boston area and my Neurologist
is at Mass General. They just wanted to exhaust all the meds there before recommended me for a MVD.So I just moved forward myself. Although I must say I have a great Neurologist I just knew what I should do.
I will keep all posted. 12 days and counting . Tapping my fingers actually!!!
Thank You
Peace
Sandi
Hi Jodi
Sorry for the Delay on The answer
Life is Crazy!!! I'.m sorry that you have tried so hard to free yourself and did not get any relief from this ugly pain.
I know you cant really do anything else right now. But hang in there who knows what's around the conor medically.
I will pray that you have some type of remission
I believe all things are possible
Keep positive
Peace
Sandi
Ha
Jodi said:
Hi Sandi,
Your very welcome! Yes, everyone on here is great. It is wonderful knowing that you are not alone and that what you are feeling, we are feeling. No one on here will say "It's all in your head", or "You are just too stressed, go home, take it easy and you will fell better", etc.
I have had bilateral pain off and on since my journey with this disease began, but for the most part the left side remains on the quiet side. Thank God for that.
I had a glyceral rhyzotomy done in 9/2011 @ John's Hopkin's. Only side effect was being numb on the whole right side. I was pain free for 26 months. And what a glorious 26 months it was!! Then 2 hours afters coming home from work one night....bam, it hit me again....I couldn't believe it. I really thought it was a nightmare but no such luck.
I went to a local surgeon and had a Percutaneous Radiofrequency Rhyzotomy done 12/2013. As for side effects, I have been blessed with every one of them. There was only a 3% chance of getting any side effects, so we were thinking that it would be great to have 5 years pain free and the 3% chance of side effects was really not a concern. Plus, I am a nurse and we were short staffed, so only being out of work for 2 weeks as opposed to having an MVD was a good deal. They did not see anything on my MRI to constitute an MVD anyway. If I had only known then what I know now, I would have pushed to see Dr. Casey or Dr. Lim back then for an MVD. I just did not do enough research, and I have kicked myself plenty for it!!
As for your twinges on the other side, I'm not sure what to tell you. I get them sometimes too and I often wonder if it is my mind playing tricks on me, or what. So, I just quit worrying about those little ones and concentrate on all on the craziness that I have going on with the right side of my head. haha
Oh, I wanted to let you know too, don't get discouraged and/or scared by all of the stories of us on here that have had several surgeries, that have been unsuccessful or that have crappy side effects. You need to know that the huge majority of people with success stories don't stay on here daily and share. There are several that do. They are fantastic and God love 'em for taking time out of their busy lives to help lift us up and help us keep the faith.
Sending positive energy,
Jodi
I had Dr. Lim in the surgery room with me but because I was considered Pediactrics 17 at the time… I don’t know how it worked because of that situation but I was referred to him because he was the best-- under Ben Carson I was referred to him but he was retiring the day after my surgery would have been preformed and he wouldn’t be able to follow up. All Dr. Carson’s patients if I’m not mistaken they were swapped over to Dr. Lim. But my surgery would have been better if I hadn’t had Gamma Knife three years before hand. I had lots a scar tissue to cut thru they said. But you are in great hands! He checkup up on me my parents said because I don’t even remember my time up in Maryland. But you’ll do GREAT!!
Hi Kelly
Thanks for your encouragement!!!!
How are you these days!! How Long ago did you do you MVD I Leave Tomorrow? I hope you are pain free
and it was all successful I'm interested in your story.
I'll keep everyone up to date when I can
Peace
Sandi
Hello well I am done numbness forehead and scalp no TN pain Dr lim john hopkins July 8th released from. Ccu on the 10th and I did stupid things like picking my 7 lb poodle and bending a couple of times 2nday splitting headache was back in ccu with cranial spinal leak in there for 12 days and today is 14 aug. Dr lim said there were veins wrapped around the artery so it took 5/1/2 hr. I have another follow up on Sept 9th the ear popping stopped and I am sort of weening off my meds thanks for the encouragement you have helped you definetly helped a lot of us thank