Hi folks,
Just joined the group… Live in Tokoroa New Zealand. Having my MVD in Southern Cross Hospital in Hamilton on 19th April. Just wondering what I can expect post-surgery? A friend is picking me up from hospital when I’m discharged, to look after me for a week or so, then I’m back home on my own… So not really sure what I’ll be able to a manage on my own, when I can drive, go back to work (I’m a high school teacher), household chores etc. Also wondering about physical effects… Pain, numbness, headaches etc… Guess we are all different, but any experiences would be enlightening…
Cheers
Molly Woppy
Hi Molly, I had a pretty rough experience with my MVD. I had 5th, 7th, 9th and 10th decompressed and the surgeon was in there for 3.5 hours. I was in hospital for almost three weeks and it took about two months to fully recover. The headaches were excruciating, particularly in the first couple of days in intensive care. What I noticed most of all, once I got past the pain (and the disappointment/devastation that I wasn't cured), was that I felt vague and disorientated and unsteady on my feet for a good 6-8 weeks. Couldn't set foot in a busy shopping centre without feeling I was going to faint. Sensitive to light, noise etc. But, you'll be fine at home. Just keep things calm and be gentle with yourself. Good luck. Fingers crossed it damn well works. K x
Thanks Somethingforkate
It seems that it will take some time to recover… I have four weeks of sick leave left, so will probably end up going onto a sickness benefit if I need more time off work. Hopefully I can bounce back quickly but will give myself the time I need to recover. Was your MVD unsuccessful? Did you have TN pain immediately after the surgery or did you get some relief at all? How are you doing now? Do you regret having the surgery?
MollyWoppy xx
Somethingforkate said:
Hi Molly, I had a pretty rough experience with my MVD. I had 5th, 7th, 9th and 10th decompressed and the surgeon was in there for 3.5 hours. I was in hospital for almost three weeks and it took about two months to fully recover. The headaches were excruciating, particularly in the first couple of days in intensive care. What I noticed most of all, once I got past the pain (and the disappointment/devastation that I wasn't cured), was that I felt vague and disorientated and unsteady on my feet for a good 6-8 weeks. Couldn't set foot in a busy shopping centre without feeling I was going to faint. Sensitive to light, noise etc. But, you'll be fine at home. Just keep things calm and be gentle with yourself. Good luck. Fingers crossed it damn well works. K x
Hi Molly
Yes, my MVD of 4 cranial nerves failed spectacularly. No relief at all. I don't have TN, I have otitic GPN or GN depending on which surgeon I'm talking to (they disagree) and I suffer chronic migraine too.My neuralgia condition has progressed to relentless, non-stop pain, with attacks.
I don't regret the MVD, no. What I do regret is that I was offered a more aggressive surgery and I let others talk me out of it, when my gut was saying something else entirely. I am now hoping to have another surgery, but this time with cutting the 9th nerve and the nerve rootlets of the 10th - high risk with the 10th, given it feeds the heart, but after 8 and a half years of this, I'm prepared to roll the dice.
You on the other hand will do just fine. xx Statistically, surgical outcomes for TN are tremendously high, in the low 90 percentile I think, whereas conditions like GN and GPN tend to be more in the low 60% success range, a figure that drops exponentially as the years roll on and the damage to the nerves sets in. So, the short of it, don't let my story scare you - but prepare yourself - it's no small operation - having someone dig around in your brainstem - and not everyone bounces back quickly. Lots of baby steps. And also perhaps a bit of emotional preparation about how you're going to cope if it doesn't work.
All my fingers crossed for you that you get the relief you so desperately need.
On the upside, having been through all the drugs and gotten little relief from any of them, and spending the 8 years on opiates/opiods I've now found myself an outrageously good pain management specialist who is an amazing, down-to-earth funny guy and who has finally got me on to something that's helping the neuralgia. He's put me on something they generally give people with facial and brain cancers (in a range to a whole series of other things) and it really helps. Pity it does nothing for the migraine!
My sincere best wishes
SFK X
Molly Woppy said:
Thanks Somethingforkate
It seems that it will take some time to recover... I have four weeks of sick leave left, so will probably end up going onto a sickness benefit if I need more time off work. Hopefully I can bounce back quickly but will give myself the time I need to recover. Was your MVD unsuccessful? Did you have TN pain immediately after the surgery or did you get some relief at all? How are you doing now? Do you regret having the surgery?
MollyWoppy xx
Somethingforkate said:Hi Molly, I had a pretty rough experience with my MVD. I had 5th, 7th, 9th and 10th decompressed and the surgeon was in there for 3.5 hours. I was in hospital for almost three weeks and it took about two months to fully recover. The headaches were excruciating, particularly in the first couple of days in intensive care. What I noticed most of all, once I got past the pain (and the disappointment/devastation that I wasn't cured), was that I felt vague and disorientated and unsteady on my feet for a good 6-8 weeks. Couldn't set foot in a busy shopping centre without feeling I was going to faint. Sensitive to light, noise etc. But, you'll be fine at home. Just keep things calm and be gentle with yourself. Good luck. Fingers crossed it damn well works. K x
Wow! What have you been given that helps the neuralgia? I’d be interested to know! Thought you must have had TN as they decompressed your 5th nerve, among others… So sorry you have relentless, non stop pain! Simply awful ;( yes I know there are risks, but I’m willing to take them if it prevents me having any more TN attacks! I heard there’s even the possibility of some temporary deafness… My neurosurgeon wrote in his referral letter that I might get some on the left side, but my surgery is on the right? I would expect it to affect the surgery side, if at all… Not sure if this is a mistake on his part or a possibility…anyway, more concerned at the moment with my insurance company, which is dragging its feet over my pre approval… Very stressful times ;(
Thanks for your good wishes
MW xx
Somethingforkate said:
Hi Molly
Yes, my MVD of 4 cranial nerves failed spectacularly. No relief at all. I don't have TN, I have otitic GPN or GN depending on which surgeon I'm talking to (they disagree) and I suffer chronic migraine too.My neuralgia condition has progressed to relentless, non-stop pain, with attacks.
I don't regret the MVD, no. What I do regret is that I was offered a more aggressive surgery and I let others talk me out of it, when my gut was saying something else entirely. I am now hoping to have another surgery, but this time with cutting the 9th nerve and the nerve rootlets of the 10th - high risk with the 10th, given it feeds the heart, but after 8 and a half years of this, I'm prepared to roll the dice.
You on the other hand will do just fine. xx Statistically, surgical outcomes for TN are tremendously high, in the low 90 percentile I think, whereas conditions like GN and GPN tend to be more in the low 60% success range, a figure that drops exponentially as the years roll on and the damage to the nerves sets in. So, the short of it, don't let my story scare you - but prepare yourself - it's no small operation - having someone dig around in your brainstem - and not everyone bounces back quickly. Lots of baby steps. And also perhaps a bit of emotional preparation about how you're going to cope if it doesn't work.
All my fingers crossed for you that you get the relief you so desperately need.
On the upside, having been through all the drugs and gotten little relief from any of them, and spending the 8 years on opiates/opiods I've now found myself an outrageously good pain management specialist who is an amazing, down-to-earth funny guy and who has finally got me on to something that's helping the neuralgia. He's put me on something they generally give people with facial and brain cancers (in a range to a whole series of other things) and it really helps. Pity it does nothing for the migraine!
My sincere best wishes
SFK X
Molly Woppy said:Thanks Somethingforkate
It seems that it will take some time to recover... I have four weeks of sick leave left, so will probably end up going onto a sickness benefit if I need more time off work. Hopefully I can bounce back quickly but will give myself the time I need to recover. Was your MVD unsuccessful? Did you have TN pain immediately after the surgery or did you get some relief at all? How are you doing now? Do you regret having the surgery?
MollyWoppy xx
Somethingforkate said:Hi Molly, I had a pretty rough experience with my MVD. I had 5th, 7th, 9th and 10th decompressed and the surgeon was in there for 3.5 hours. I was in hospital for almost three weeks and it took about two months to fully recover. The headaches were excruciating, particularly in the first couple of days in intensive care. What I noticed most of all, once I got past the pain (and the disappointment/devastation that I wasn't cured), was that I felt vague and disorientated and unsteady on my feet for a good 6-8 weeks. Couldn't set foot in a busy shopping centre without feeling I was going to faint. Sensitive to light, noise etc. But, you'll be fine at home. Just keep things calm and be gentle with yourself. Good luck. Fingers crossed it damn well works. K x
Hey Molly,
On the new drug that's giving me relief - Clonazepam/Paxam. I can't take all the epilepsy drugs - although I did tolerate Epilim well (although all my hair fell out). The others make me a zombie or suicidal and basically a blithering idiot and do little for the pain. My doctor put me in hospital late last year for a 11 day non-stop ketamine infusion to try and control the migraines and in the meantime discovered that all the opiates were making the migraines worse - ie rebound migraine. So the withdrew the opiates (which wasn't pretty) and put me on Clonazepam for the neuralgia. Migraines continue. As I think I mentioned, the doc said Clonazepam often works well for people with face cancers and I'm getting some relief from it. It's a benzo and has a bit of bad reputation, but it beats the hell out of morphine.
I'm sorry your insurance company are being, well, a typical damn insurance company and I totally understand how desperate the situation is. There can be all sorts of side effects from the surgery, some you mention, but anything, ANYTHING, has to be better than a life lived in agony. It's not much of a life. Don't quite understand about the notion of deafness on the other side - I would've thought that could only happen if you get some mirror imaging activation in the brain. That's how they explain to me, that I now get fleeting bilateral symptoms. Perhaps it's a typo?
Good to talk with you.
x
Well I’m hoping to hear from insurance company today… Shouldn’t hold my breath though! I’m sorry you have no relief from the migraines… I’ve only had a few I my life, but they knocked me down for days. The tegretol, gabapentin, amitrip and baclofen are all playing havoc with me… Hence the surgery 
trying to teach, with side effects of meds and pain flares has been horrendous, but only one week to go, then hopefully MVD in first week of the holidays…here’s hoping I get some relief… ;/