i also have severe bilateral occiputal neuralgia...

i was hurt in May 2013

after 2 1/2 years of being led down the wrong path by one bad nuero after antother for a variety of reason including the fact that i have an mtbi fromt he same injury that caused the ON...

at least 8 neurologists missed the diagnosis of ON.

there are diagnostic blocks that can be done systematically in order to diagnose it properly...

i am awaiting my 2nd round of radiofrequency ablations (RFA's) which has been the ONLY TREATMENT that relieved 90% of the pain from the base of my skull, wrapped around both side of my head and my hurts to move them too fast...thend own my neck and turns into myofascial pain...

RFA's have been a godsend to me! i encourage folks to try this, although it is not permanent by any means...mine wore off after 2 months...

those of us that suffer know that one day of reduced pain is hard to find...RFA's gave me 2 months...

specifically, i had RFA's of the medical branch nerves, both sides C2 - C7.

i have 3 weeks to go until i get it done again...

it only buys time. it is a tool in my tool box that we all have: narcotics, steroids, lidocaine patches (yea!) lidocaine nostril spray, and a lot of different meds.

this is the most comprehensive info i have seen on this subject. in my travels, i have found not one flaw with anything written here:

http://dizziness-and-balance.com/dis...neuralgia.html

most interestingly: nerve decompression done by only a handful of surgeons in the US had the best success rate of any therapies, although their sample size was very small. 87%. pretty good to me.

the page discusses all the advanced therapies: nerve blocks, rhyzotomy, botox, surgically implanted impluse devices to block the pain signal, etc.

and the author, whom i have found no flaws in any evidence he has presented (and that doesn't happen when patients and docs agree when it comes to ON) states nerve decompression to have the most promise of success.

interestingly, my GOOD neuro (not my 2 bad neuros) gave me a referral to a clinic in Houston that has been doing this surgery with success for nearly 10 years now...

check this out:

https://www.youtube.com/watch?v=I9fVC-dwiTw

i am trying to go this route. it makes too much sense.

we are all surviving one day at a time.

i want to solve the problem.

and nerve decompression does not sound like snake oil to me at all...

wouldn't it be amazing if someone out there actually has had this done and can tell us their experience?

ON is rare and misdiagnosed as migraine all too often.

learn more.

you MUST be your own advocate.

and one important lesson i have learned.

do NOTHING unless 2 docs that you TRUST a lot tell you exactly the same thing.

no dart throwing. no drug of the day.

i use the "broken leg" example constantly with my family that suggest psychotherapy, copper bracelets, and sometimes exorcism...

if we had a broken leg, tell me this: would the doc give you pain meds and tell you to see a therapist?

use the broken leg example with your family. it will help them to understand you are hurt, and it needs to be fixed. just like a broken leg.

it is all ludacrist in every way.

we cannot survive on percocet, lyrica and prednisone...that **** will kill us off.

we need our broken leg to be fixed.

this surgeon has agreed i am a good candidate. cost: 15,000 usd

it might be covered. it might not.

we shall see.

i would trade 15,000 for fix.

i would pay a million dollars. but i have zero income and i am on medicaid...yikes..

but where there is a will, there is a way...and my will is strong on this..

we shall see what happens with this.

i hope i can remember to update you if i go thru with this and if it helps.

if this has "touched a nerve" (so to speak), lemme know what you think.

God Bless and Feliz Navidad amigos!

Brainstemmed