Hay just thought I'd let you know iv been for the pre op today and the surgeon said from start to finish mine will be 5-6 hours! So god only knows what there doing and I don't dare ask 
My MVD is scheduled for June 4. I would love to hear how everyone's recovery is going!
Hi
May 5th 2015 I was taken to theatre for 6 hours. I woke up in critical care and the next day I was on a normal neurology ward. 7 days later and I was allowed home. Yesterday it was removal of my staples. Whoop !!!
Now I could say all was great but I would be lying, believe me when I say you have pain you do. Yes the T N pain as disappeared but there is a whole new pain, with strong painkillers it's controlled. I am 11 days post op now and all pain as gone I just find it uncomfortable to sleep, I've lost my hearing in my right ear and I have weakness on my left side but with time and rest they should return to normal.
I am happy I had the surgery and I would recommend it to other sufferers.
Just remember take it easy and do rest! It is still brain surgery you are having !
Hi, Hope all went well? Mine was cancelled! Kings has Norovirus at the moment. My consultant only works one day a week so god knows when I'll get mine. Let me know how the op went and hopefully you're pain free??
Excellent news. 6 hours......wow. Hope mine is a lot quicker! Take it easy x
Hi All
My husband is due to have this op on 1st June, hoping it will take away his pain & having to take all the drugs. As I understand his op is due to last for 2½ to 3 hours & I'm expecting him to stay in hospital for 3 - 5 days. Although I haven't suffered myself I can see what an awful condition TN is & I wish you all the very best results from your ops!
My dad is 76 years old, registered blind recently and deaf some years ago.He was always fit and active but TM and the meds used to treat it over the past 10 y or so are wearing him out.He lives alone and tries to be independent.he's had all the radio frequency and lignocaine injections but thought too risky for MID. Over last 2 weeks got so unbearable that can only get relief when asleep. Told my sis today he's suicidal.I'very never heard him speak like this before.He's asking for the op, at least he may die if it doesn't help.getting in contact with GP and hospitality in the morning.Has anyone been through this or got any advice? He's on oxcarbazepine under prof zacrovska and Mr kitchen at Queens Square.Are there any meds in crisis that could help.only opioid he tried is codeine-useless for him.
Hi Pinstar,
So sorry to hear that he and you are going through this. Unfortunately it is nicknamed the "suicide disease" for a reason. I've heard my neuro doc mention that some people have come in to the hospital for IV pain meds (I think he specified dilaudid) when the pain gets that unbearable. There are also a number of psychological/therapeutic interventions designed for people with chronic pain. I work in the mental health field so I'm admittedly a little bit biased, but there is a great deal of success with those approaches, especially when coupled with medications. I would be happy to provide more info!
Dear kenleigh, Thank you for writing. It's very kind of you. It' was a shock to hear my dad talking this way. Dad did not get on with the MBSR, he couldn't hear in the group and was not motivated for counselling. He's very single-minded and can be literal and quite rigid. I've made him an appt with GP this am and contacting his specialist Prof Zakrzewska. Fingers crossed we will get through this.
You mentioned the numbness & deafness in your right year. I also have numbness on the right side of my face and tongue. Also have deafness or tinnitus in my ear. Operation was the 4th May numbness is improving and dbl vision has improved. There has been no improvement in hearing. Just wondering if your hearing has improved at all ? No TN pain any longer which is great.
Hi ann
unfortunately my hearing hasn't returned as of yet. Glad to hear that some numbness is improving . But I am pleased that I also have no TN pain .
Hi Kim, thanks for responding to me. Fantastic that you have no TN pain. I am wondering if the surgeon was able to tell you why you lost your hearing, and if this is permanent or will improve over time also. My surgeon was quite surprised about loss of hearing or what the cause is. I have Tinnitus in my ear , which is quite distressing at times. Thanks .
hi TomsMum
I am still deciding between MVD and Gamma Knife. I was scheduled for MVD but i also have an artificial heart valve and cardiologist was not keen on MVD as surgeon wanted to take me off Warfarin. I hope for the very best for your husband on June 1st. I guess you will be busy for a while looking after him but i we would all be very interested in how he gets on.
hi Pinstar,
do they do balloon compression anywhere near where your dad lives. Many people on the tn forum say it works well. How did your visit to the doc go?
Thanks for you reply Valkyrie.Not sure about balloon compression.Dad had radiofrequency and glycerol with decreasing pain free time with successive treatments over past 8 y. Current pain is constant severe pain when talking or swallowing, in addition to classic TM shooting pain just about managed on careful regime of oxcarbazepine 450/450/300/450 1650mg daily.Duloxetine added last week. Dad went to emergency dept.as unable to drink or take tabs on Friday. Given IV fluids and oromorph 5-10mg 2hrly but not much help.discharged as not other treatment available in emergency.I hope that he willbe reconsidered for MVD or another surgical option soon as he continues to lose weight and in distress.My sister is now staying with him,and working hard to keep him going.But with not being able to hear,see much,talk or eat, it's pretty tough. I realise that I probably posted in the wrong discussion but came here as MVD is the treatment my Dad wants.
Thinking of you this week kenleigh and wishing you a smooth journey and successful outcome
Wishing your husband courage for his operation tomorrow and a sucessful outcome
Dear Valkyrie,From my recen . Intense but still limited reading, I wondered if you and your surgeon considered gamma knife surgery, the least invasive type (although doesn't sound it from the name!) - seems to have less side effects in terms of nerve damage (deafferation pain) and does not involve incision.It may buy time to ensure good collaboration between cardiology and neuro to balance coagulation needed for MVD .my dad was put off MVD previously due to history of risks for ischaemic stroke, and bilateral severe deafness. He is hoping to revisit the risk/benefit discussion with his surgeon.
You're so sweet, thank you! I'll be sure to update how it went and try to document the recovery process a bit.
you are in spot on with Gamma Knife idea i think. I am flying to Sydney to see the Gamma Knife team on 12th June as they have the only machine in Australia. They will assess me to see if Gamma Knife is suitable for me. I also have an appointment there to see one of the Drs who trained with the guy who pioneered MVD in case i am rejected for Gamma Knife.