Microvascular Decompression

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.

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 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.

Hi Valkyrie

Thank you for your good wishes, husband has his op yesterday as planned, was in surgery for just over 4 hours, not sure how it went, waiting to hear from the consultant. As expected yesterday when I left the hospital my husband was in a lot of pain & has lost some of his hearing, not sure if this will be permanent or temporary, looking through some of the other posts I'm afraid it will be permanent but if the op has been a success I'm sure he will think it worthwhile. Will let you know how he gets on in the next few days, bit concerned as his temperature has gone up today, hoping it's not an infection!

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.

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.

Dear Pinstar, oddly my mum had Tn also and they say its not hereditary. Anyway, she was put on Baclofen as well as Tegretol. Has this been suggested? You must be desperate by now. Mum got down to 48kg (she was only 5ft tall) and i rang the Health Dept complaints line and got on their case. They rang the doc and told him to lift his game. It got results. That's when they came up with the Baclofen idea. Luckily she lived with me the last 6yrs of her life so i could help her and keep an eye on her but it was still very hard for her too.

Dear Kenleigh,I'm wondering how you are?-whether your MVD op went ahead on 4th.I hope you are doing ok.

Hi Pinstar (and group),

I'm doing really well! I had the procedure yesterday morning and spent the night in the ICU as a standard precaution. Today I'm already up and walking, and the pain is pretty much limited to where the stitches are and my neck muscles

I hadn't know this before the procedure, but neck stiffness is very common because of the incision site. They have to move the muscle in the side of your neck out of the way during the procedure, so it can get tight afterwards. I'm getting a muscle relaxant for this, along with some pain medication

I have some minimal numbness on my lower lip and tongue on the side the procedure was done. I'm told this is normal and will fade as the nerve heals. I'm also still having some trigeminal pain, but was told the same thing - normal and will fade as the nerve heals.

I'm expected to go home first thing Sunday morning and am planning to take a couple of weeks off to fully recover before returning to work.

So far things have gone smoothly (finger crossed)! I'll be sure to keep the group updated about the recovery process

Great news Kenleigh!I wish you well for your rest and recovery.