Posted , 9 users are following.
To all neuralgians,
The idea of having a Neurectomy is shot to -----. Nerves will grow back and make a new path if they need to. Real short relief, with long term numbness.No thank you!
Any IDEAS?
This "monster" is getting out of hand.
God Bless,
Greg
0 likes, 19 replies
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akil41128 greg66242
Posted
Yes please
Help us decide the best procedure. I'm on the mercy of gabapentin, it's a matter of when the max dose will not be sufficient to stop the monster
Stupid1 akil41128
Posted
I take both 3 (300mg) capsules gabby @ bedtime and 1 (150 tablet) oxcarbinazapine @ bedtime. Follow by a shot of vanilla icecream and I am out like a lite.
It had began to work but wanted perfect, becaused I was like zonbie nation.
God bless
us and keep us and give us peace
efrain34417 akil41128
Posted
Hi, I'm also on gabapentin and it seems to be somewhat controlling the horrible episodes. One thing I have found out is that my main trigger is eating foods that are not soft. I can no loger eat nuts, hamburgers, pizza, etc. I eat or drink a lot of liquid foods but I don't want to be doing this for a long time.
jo66572 greg66242
Posted
Yes, my sister had that operation. She was cut right around her ear, looked gruesome. The op was useless and a big waste. She still suffers, but with added issues because of the op.
Stupid1 greg66242
Posted
Get a new neurologist and neurosurgeon, if they have a P.A., run.
I like that name neuralgians, make me feel like a superhero.
I underwent MVD and still have numbness, in areas I described. Once numbing meds r gone, then I will come back on forum and let you guys know if MVD worked.
I think I am still been affected by the numbing medication, because if I sleep on that left side of head I get excruciating headache.
MVD July 27, 2016 to September 12th 2016
Appointment with the surgeon tomorrow wish me luck everybody.
God bless
us and keep us and give us peace
greg66242 Stupid1
Posted
Crap, I wish I had this advise earlier. Guess what? My Neurosurgeon has a P.A.
I hope everything turns out for the best.
God Bless,
Greg
Stupid1 greg66242
Posted
Greg66242,
I wante appt with my surgeon Dr. Phelphs, Integris group in Oklahoma City, He has P..A.
Waiting on surgeon in waiting now.
I called as soon as was scheduled told secretary wanted to c doc not P.A, waiting.
If doc can't c me I am leaving.
God bless
Us and keep us and give us peace
paul49262 greg66242
Posted
Our daughter is recently diagnosed and we are still waiting to see the neurologist but she has been having Reiki which seems to have helped her cope better with the pain and the attacks.
To be honest anything is worth a try when the pain gets so bad.
All the best you keep trying different things.
Tnhurtsme paul49262
Posted
Tnhurtsme greg66242
Posted
Stupid1 Tnhurtsme
Posted
Tnhurtsme,
Get one of other methods now don't wait, run.
Read what was succeddful 4 others on forum and choose anything, leave MVD as a LAST resort..
God bless
Us and keep us and give us peace
Tnhurtsme Stupid1
Posted
Valkyrie greg66242
Posted
A neurectomy and a regular MVD is a very different procedure. One involves cutting the nerve or removing part of a nerve and the other generally is putting a teflon patch between the nerve and the offending blood vessel. The usual MVD's can have very good results and I am told have the best outcomes assuming you have no other medical problems. It apparently has a recurrence rate of about 20% in 10 years. Unfortunately, occasionally it does nothing or only for a short term (like my mum) Gamma Knife is bloodless and painless with a recurrence to be expected within 3-5 years but for some people it last much longer. The other things I have no knowledge of. I have had Gamma knife and if it last for 3-5 years then I will have it done again if it comes back.
Stupid1 Valkyrie
Posted
This will b my next choice.
God bless,
us and keep us and give us peace
colin04561 greg66242
Posted
As others have stated, an MVD is the evidence based, results based way to achieve long term relief for the vast majority (over 90% initial) of this issue. Gamma Knife seems to work well but for a shorter period. As happy as I am to hear someone is getting relief from it, I wouldn't recommend Reiki as it's been debunked as snake oil multiple times over. Results from things like that are in a persons head and it can be argued that any relief is welcome relief, but it's pseudo science. Stick with the proven methods and above all else, find yourself a good neurosurgeon with years of experience, prefereably decades.
akil41128 colin04561
Posted
Stupid1 akil41128
Posted
After having MVD surgery I wouldn't use it as a last resort after having tried all the othere methods
I also will go to about 5/6 different neurologist in 5/6 different neurosurgeons.
I would not wish any of the problems I am having after my MVD surgery on anyone on anyone. Surgery was on July 27th and today is September 23rd and I am still having double vision.
This is my put off appointment the last one was on July 11, 2016.
God bless
us and keep us and give us peace
colin04561 Stupid1
Posted
Absolutely correct. I think the good doctors want folks to stat small and go with a glycerol injection first, possibly gamma kife. MVD should NOT be the first thing you do. I didn't mean to imply that if it seems like I did.
Stupid1 colin04561
Posted
I just wish I had found good doctor first
Helping each other by. Telling our experiences, is all we want. We,re all here to try to help others.
God bless
Us and keep us and give us peace.