I’ve been away from this board for a bit, enjoying having my life back since MVD surgery for Glossopharyngeal Neuralgia, here in London Ontario Canada. I am a 57 year-old male employed as a fire Captain.
To summarize, I was on Carbamazepine (200mg/day, plus Baclofen to manage muscle twitches) to manage pain for about 10 months in 2015 when the pain broke through the meds about one year ago. It delivered excruciating throat/tongue/jaw pain. Within weeks I was taking 3,000 mg/day of Carbamazepine to mitigate the pain & using Lidocaine spray in my throat often to enable talking & eating. My neurologist & local Neurosurgeon (NS) told me the highest documented dosage was 2,400 mg/day but I was clearly above that level. I was having dizziness & blurred vision at times with such a high dose, subsequently the NS offered to perform the MVD surgery ASAP.
Last Feb. 24th was the date for surgery. 3 prior MRI’s could not reveal the problem area, so the surgeon planned to use a camera that was MRI compatible and go in during surgery to find the offending blood vessel. If unable to he would cut the nerve instead of doing the MVD.
Fortunately he found the blood vessel wrapped around the #9 nerve & performed the MVD.
I was released from hospital approx. 42 hours after the 7-hour surgery. I was lifting weights within 3 weeks but did take it easy most of the time. I returned to work within 2.5 months. It took maybe 6 months for my voice to return to complete normalcy as my larynx was negatively affected by the nerve manipulation. I have been totally pain-free since the surgery. I am extremely grateful to my surgeon Dr. A. Parrent at University Hospital in London Ontario!
congratulations!
so great to hear a success story!
And thank you for coming back and updating everyone, i’m sure when you get cured the last thing you want is to be reminded of the problem; but coming back and sharing your success story helps and inspires those who are in despair and unsure if their pain will ever go away (like myself).
Chetty… you have NO IDEA how excited I am to hear your story!!! I live in Stratford ON and have had GPN for 13 years (diagnosed as of 3yrs ago). I do see a neurologist in Kitchener - nice guy - but I am his only patient with GPN and he always tells me how helpless he feels trying to treat me. He claims I know more about GPN than he does. He has to treat me like his TN patients. I have been searching & researching looking for a light - a glimmer of any hope of how this PAIN can be treated… and then I read this!!! I have made an appointment with my local doc to make a referral to the doctor and department that has treated you!
Thank You!
Thank You!!
Thank You!!!
I will post my successes to keep you informed.
UPDATE I have met with Dr Parrent – University Hospital London Ontario – and will be scheduled for the MVD procedure in May/June. I anticipate the day when this pain will STOP!!!
Thank you so much, Chetty, for sharing your positive story. I will try to send a private message as I have a question for you (as a fellow Ontarian). Many thanks.
That is great to hear Chetty! I am in Tasmania and contemplating havind a MVD as I have beeh diagnosed with GPN for 12 months now but previously had the excruciating pain on and off for the past 5 years. I am a 63 year old woman , a trained paediatric registered nurse but have been unable to work for 9 months because of the terrible side effects of the different meds I have been trying. I would love any recommendations for a skilled experienced neurosurgeon in Australia.