Hi Don,
I am editing the success rate figure to the one mentioned in the book I have given reference to. Thanks for correcting me :)
Don said:
99% success rate???? Really???????
I am so mad I had an MVD and it did not work at all and I had to have another operation 2 weeks later because of a CSF leak that was due to a hole in the sealant over the wound. 99% success rate??? Why me???????
Did this doctor follow up with all 700 of his patients?
Hi Bella,
As mentioned to Don, I am editing the success rate figure to the one mentioned in the book I have given reference to. Thanks for correcting me :)
Bellalarke said:
Don, I have always thought you to be kind to others and very supportive. Sorry if that sounded harsh. I too question the 99.99999. Sounds like a NS blowing smoke up the old proverbial...
Don said:Not even just 99%, higher than 99%????????
Hi Kc,
I am editing the success rate figure to the one mentioned in the book I have given reference to. Thanks.
Kc Dancer Kc said:
I had to get on Ritalin - so I could research for MVD - meds made it impossible to retain medical info. Got that idea from here.
Yeah... 99% just a tad high -- You never know what will happen.
I know a man in my local support group who had gamma knife - then 2 MVD's with Dr. Casey- we are all so different - yet alike.
I fear dr. Casey will be out of practice if I ever need a second one. So I have my eye on Dr. Lim in Baltimore.
I'm glad you woke up pain free - I did also.
My MVD was 10/2011 - now 2 years later - I have intermittent 2-5% pain -- that, I can live with but the PTSD of it all makes it hard sometimes!
Thank you so much for sharing. I have an appointment next week to see if I am elgible for MVD. My neurosurgeon wont do GK on me because of my age (25). It has helped me figure out some questions to ask if I am elgible. Thanks again!
Manoj,
Thanks for changing the 99.9% comment. Please let us know how you are feeling after 1 month or so. Like many folks acknowledge on this site, the one's who have a successful surgery often move on without documenting it on the site.
Another good source of information is an online video by Dr. Michael Lim which also includes comparisons of success rates and length of pain free relief for different trigeminal nerve surgical procedures. It is located at http://www.hopkinsmedicine.org/neurology_neurosurgery/news/videos/lim-trigeminal-2011.html although I can't seem to get it to run today on my Apple computer. Another good quick source is the Mayfield Clinic website at http://www.mayfieldclinic.com/PE-TRIN.htm. Dr. Ronald Brisman has a site which is fairly comprehensive at http://www.trigeminalneuralgia-ronaldbrismanmd.com/. I don't recommend any other their services from personal knowledge, I am just referring you to information I found helpful that patients can understand.
Yes, I didn't take it as a harsh response. This was, so far, a fantastic surgery outcome. But Don - what you see possibly depends on the surgeon. I went to see a surgeon at Wash U in St. Louis at the urging of my Neurologist. The surgeon told me I was not a good candidate. He told me that throughout the years, the way my started and my pain patterns that presented most of the time, told him I had a large chance of it not working or having it returning with a vengence. In his opinion, I was better not to have it done. However, he would try if I came to him BEGGING because I was in that much pain. Now I know if I really wanted it then, I could have gone to another surgeon and had it done without getting the information given to me by this doctor. So maybe Manoj's doctor is very conservative like mine. I am SO SORRY that you had to deal with this type of outcome.
Don said:
Not even just 99%, higher than 99%????????
As far as living on the meds for awhile - my Neurologist said that the medication can sometimes kick you into remission. After a year, they generally know if that is going to happen. mybell said:
Thank you so much for your story, Manoj! In a similar way to you, I have come to the decision to have an MVD for my Type 1 TN. I have seen 2 Neurosurgeons that are experts in this surgery and teach the surgery and about TN at our university here and have chosen the one. My problem is that both Neurosurgeons agree that while I'm a perfect candidate for this surgery and my risks are extremely low (44 years old and am a fitness instructor), it is premature to have the surgery since my TN started just 4 months ago. The protocol is the live on the medicine for a time which is absolutely not for me.
I am on Trileptal and have gone from 150mg the first week in January to now 1200mg in just 4 months. It works well until the pain breaks through after a few weeks and then I have to up the medicine. Each time I increase, the side effects are bad. On a daily basis I am drowsy off and on and have a continuous brain fog. Now and then, I also get dizzy, lightheaded, faint and sometimes even have what feels like an "out of body" experience (just all of those symptoms at the same time). The only up side to the meds is that I've never slept better in my life or at least since I had kids.
I was referred to a new Neurologist since my first was a headache specialist and was not comfortable prescribing high doses of Trileptal. I imagine that I will be switched to a different med. I'd like to get through this drug protocol sooner than later because I am ready to have my MVD and put this behind me. If it's all a success (and I believe it will be), I do plan to stay connected to the TN world and do all I can to help others. I'd like to organize a walk/run here in Indy to raise money for TN each year. It's rare diseases like TN that need the most support and awareness.
Debbie,
Manoj already retracted the 99.9% number. Are you reinstating it? 90% is a well established number for those who have classic electrical shock symptoms and a good lowering of symptoms from taking tegretol and some proof of compression on an MRI. 90% not 99.9%.
Don
Manoj,
I am very happy to hear you are doing well. I am 30 years old. I was suffering from TN and ATN on the left side for 10 years. (I was misdiagnosed for many of those years with chronic complicated migraines.) I had my MVD done 6 months ago. My neurologist was against it. He did not believe it was going to help me. What's even more frustrating is that meds were not helping. I could almost understand if he was against it if my medications were helping. I am almost 100% pain free. I was told there was a good chance my TN pain would go away but that the success rates for ATN relief were a lot less. Thankfully they are both gone. The little pain I get is similar to my old TN pain but a 4/10 compared to the 10/10 pain I used to get. I have not had ATN pain in about 4 months. It was not easy (I got a CSF leak post-op and was in ICU 4 days and another 3 days in a regular room after surgery.) but it was worth it. I felt I had to try it even if it didn't help. If I had known what I had was TN and ATN I would have had it done years ago. I hope your recovery continues to be positive. Thanks for sharing your story.
ihold- thank you for your good wishes. I too experienced that Neurologists tend to avoid surgery as much as possible while Neurosurgeons are more open to them. I am happy for the way things have gone for you :)
ihold said:
Manoj,
I am very happy to hear you are doing well. I am 30 years old. I was suffering from TN and ATN on the left side for 10 years. (I was misdiagnosed for many of those years with chronic complicated migraines.) I had my MVD done 6 months ago. My neurologist was against it. He did not believe it was going to help me. What's even more frustrating is that meds were not helping. I could almost understand if he was against it if my medications were helping. I am almost 100% pain free. I was told there was a good chance my TN pain would go away but that the success rates for ATN relief were a lot less. Thankfully they are both gone. The little pain I get is similar to my old TN pain but a 4/10 compared to the 10/10 pain I used to get. I have not had ATN pain in about 4 months. It was not easy (I got a CSF leak post-op and was in ICU 4 days and another 3 days in a regular room after surgery.) but it was worth it. I felt I had to try it even if it didn't help. If I had known what I had was TN and ATN I would have had it done years ago. I hope your recovery continues to be positive. Thanks for sharing your story.
No I am not reinstating it. I just stopped an replied to you without reading further. Just the things I do now because of my "stupid" meds. Sorry for the confusion. I shouldn't get even comment on here.
Don said:
Debbie,
Manoj already retracted the 99.9% number. Are you reinstating it? 90% is a well established number for those who have classic electrical shock symptoms and a good lowering of symptoms from taking tegretol and some proof of compression on an MRI. 90% not 99.9%.
Don
Hello my bell. Just a quick note for you. I had my first attack of tn1 in April of 2012. I had my MVD in sept. no pain med combination worked well enough for any sense of normalcy. I was 48 and a fitness instructor as well. I have been pain free since Oct and med free since Dec. I wish you luck on your journey but I wouldn’t let anyone tell me that I would need to wait. Only you know your pain level and when it is time to do something else. I will be praying for your recovery
mybell said:
Thank you so much for your story, Manoj! In a similar way to you, I have come to the decision to have an MVD for my Type 1 TN. I have seen 2 Neurosurgeons that are experts in this surgery and teach the surgery and about TN at our university here and have chosen the one. My problem is that both Neurosurgeons agree that while I’m a perfect candidate for this surgery and my risks are extremely low (44 years old and am a fitness instructor), it is premature to have the surgery since my TN started just 4 months ago. The protocol is the live on the medicine for a time which is absolutely not for me.
I am on Trileptal and have gone from 150mg the first week in January to now 1200mg in just 4 months. It works well until the pain breaks through after a few weeks and then I have to up the medicine. Each time I increase, the side effects are bad. On a daily basis I am drowsy off and on and have a continuous brain fog. Now and then, I also get dizzy, lightheaded, faint and sometimes even have what feels like an “out of body” experience (just all of those symptoms at the same time). The only up side to the meds is that I’ve never slept better in my life or at least since I had kids.
I was referred to a new Neurologist since my first was a headache specialist and was not comfortable prescribing high doses of Trileptal. I imagine that I will be switched to a different med. I’d like to get through this drug protocol sooner than later because I am ready to have my MVD and put this behind me. If it’s all a success (and I believe it will be), I do plan to stay connected to the TN world and do all I can to help others. I’d like to organize a walk/run here in Indy to raise money for TN each year. It’s rare diseases like TN that need the most support and awareness.
Thanks for sharing your story, it will give others hope!
Congrats. I wish you a speedy and full recovery
Thank you Rick!
Hello All,
Its now been eight years since my surgery and I am yet pain free.
The closest I have come to getting pain post surgery is when for some reason I opened my mouth too wide (while cleaning tooth cavities after a meal!) I felt some sort of very mild pain. But after I stopped opening my mouth too wide the pain went off.
I feel fortunate to be free of the pain and wish recovery to all the patients suffering from it.
Mr Manoj
Do you feel any dizziness after the surgery as my mother is facing alot Right now we are in the hospital
Mimi
Hello after your surgery do you feel dizziness and all that stuff wanna know more about it
Hello,
Time at the hospital after the surgery can be quite difficult. I don’t remember having dizziness but had numbness in certain parts of my face for months but it went away with time.