Been suffering with TN. Since 2017. It can no longer be managed with the meds I am taking. Doctor just upped my dosage again. Contacted the Mass General facial pain clinic to see if I am a candidate for MVD. My doc original referred me to RI for gamma knife. I read up on the Mass General program. Any advice?
I have had 2 MVD’s and 2nd was almost 12 years ago. I have been pain free. I was getting fitted for the “ mask” for the gamma knife and it freaked me out. The 2 nd surgeon felt I was a candidate for a 2 nd MVD and so glad I went that route.
The nausea was the worst thing for me post procedure ( both times) however being without pain is well worth it. I am in Tucson Az so can’t comment on Mass General however if the dr is experienced and assume they are I suggest you consider it.
The gamma knife can take quite awhile even to tell if it worked ( that’s what I was told) but my last procedure was Nov 2012 results could have improved.
Hope this was helpful and don’t hesitate to reach out if you’d like to talk more.
You don’t specify what meds, dosage etc. or if you have met with a known surgeon who performs MVD’s and Gamma Knife. It’s critical to research thoroughly and find a neurosurgeon you feel comfortable with and is steering your particular situation in the right direction. I’ve had 2 MVD’s and one GK over the past 30+ years all with top surgeons who steered me in the right direction for my needs and what was right at the time based on age, overall health, pain threshold, previous nerve damage done, etc. Please keep these recommendations in mind and seek out good docs. Good luck. There is hope for us all. Stay strong.
Thank you for your story. It makes me feel like I am making the right decision. They are reviewing my case tomorrow. I hope they find that I am a good candidate
Hi, I had MVD @ Yale in April. My understanding was that Gamma Knife would make my entire right side of my face without feeling, so went with MVD. The recovery was not as easy as I thought - but it was doable. I was in hospital for a week. I still have headaches - BUT they are on a scale of 3-7 out of 10 rather than the 15 out of 10 Tri Gem. I would say - you should like your surgeon and hospital.
Best of luck
Hi Lrompel, I’m terrified of needing a 2nd MVD. How long was it between 1 and 2 and what made you decide for 2nd. Was it done at the same hospital? Was recovery the same?
I don’t believe you will need 2… that was just my experience.
The 2nd dr specialized in TN and the procedure. The first one lasted for 3 1/2 years but the second almost 12…… If you’d like to talk let me know and I can call you. The relief was worth it for me. I also found the med’s had to be increased and wanted a more permanent fix. I do agree that you have to be comfortable with the surgeon and hospital. The 2nd surgeon was at a different hospital and actually felt they understood the recovery more. I stayed overnight both times in ICU which I believe is standard, then moved to a regular room and released later that day. If I had to do it again I would in a heartbeat and with my 2nd surgeon. I had considered going to John’s Hopkins as one of the top surgeons at that time was there but lucky to find Dr Abhay Sannan in Tucson where I live.
Amanda
Good luck and please let me know the verdict . Don’t hesitate to reach out or we can talk if you’d like.
Linda
| Amanda7
July 31 |
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Thank you for your story. It makes me feel like I am making the right decision. They are reviewing my case tomorrow. I hope they find that I am a good candidate
I was diagnosed with trigeminal neuralgia (TN) approximately 15 years ago. I tried numerous therapies and medications throughout the years.
Approximately 6 years ago, I decided to have microvascular decompression (MVD) surgery Nothing was working anymore, and I did not want to go on disability, but performing my stressful healthcare job was getting very difficult. I did a lot of research to find a center of excellence for cranial surgery. I chose Dr. Raymond Sekula, UPMC, Pittsburgh, PA. I traveled to PA from IL.
My MVD surgery was very successful. Approximately 10 weeks after surgery, I was pain and medication free, and I still am today. My only regret was that I did not pursue surgery years earlier. The surgery gave me back my life. I am forever grateful to Dr. Sekula and his team.
I wish you well and hope you find the therapies, medications or procedures to assist you with TN.
Please Note: Dr. Raymond Sekula is now in New York at Columbia, Neurological Institute of New York.
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Hi. I have been appt for mvd. I will have the procedure in the next 4 to 6 weeks. I am so excited.
Dear Amanda,
I have had TN for 20 years and had an operation (axiem guided compression left Trigeminal Nerve - ct brain stealth with fiducials) on my left side than left it numb for nearly 2 years now… it has been awful - I could not eat on my left side and now my jaw is out of alignment… My neurosugeon said numbness was not supposed to last that long and i would probably be permanently numb because I was different??? the numbnes is now wearing off about 90% gone .
March 24 my right side started and pain became awful - my meds did not work and I had to go onto opioids.
I went looking for a new Neurologist and he is now after making sure I am not allergic to it… injecting a grid pattern of Botox across my face. they are using it for lots of pain… back & knee pain.
after 2 weeks, I could not believe it - no pain - so started coming off the meds. I have elimated the opiods and now on 500mg of Tegretol
its week 5 and some twinges of pain so increased to 600mg Tegretol.
I can talk normal and I can eat… amazing. I have another appointment in 12 weeks to have it again. He said it takes a couple of weeks to kick in and does wear off but he said each time I have it done it will last longer… AMAZING - please make enquiries about this process - are there any Neurologists using it where you are… I hope so…
Hugs GP
My mvd surgery is in 3 days. I am so excited. What was it like. Right after surgery?