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GREATER OCCIPITAL NERVE BLOCK

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Kim

(Member)
From: Victoria Park
95 total posts
Not currently suffering :D
Hi all,

have been pain free more than 18 months, which is great but past experience
tells me the beast is not far away.

neuro has suggested a greater occipital nerve block when next bout starts.

it looks good in theroy.

would appreciate any feed back from anyone who has actually had this procedure
done and what results they had, good or bad.

thanks kim
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saintpeter

(Member)
From:
606 total posts
Not currently suffering :D
G'day Kim,
i'm late to the party again. As i understand it, the procedure you're talking about is a stab in the dark at best. I wouldn't do it.
cheers peter
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Kim

(Member)
From: Victoria Park
95 total posts
Not currently suffering :D
G'day Peter,

i have done some research on this.

it is a simple procedure, a needle (with steroids and anesthetic) just below
the base of the skull (on effected side).

there are very few side effects, all minor.

takes one to three days to kick in, is effective for about 75% CH patients.

if it works , should give about three weeks of pain free days,
enought time for preventatives to start working.

i am going to give it a shot.

while my decision to go ahead with this is based on clinical trials,
i posted, hoping to get some feed back from "real people" (this site)
who had had it done and what there outcome was.

so far, it seems that no one from this site has tried this procedure.

when i get it done, will update everyone on how succesful (or not) it was for me.

regards kim.
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saintpeter

(Member)
From:
606 total posts
Not currently suffering :D
Invasive anything is never simple, Kim, but i'm also of the don't knock it brigade.. Have a go if you can and it won't damage you.
If I get to Vic Park in the new year, Kim, would you be up for a coffee? I'd like to pick your brains on this.
cheers Peter.
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Silent Planet

(Member)
From: Freshwater
256 total posts
Currently suffering :(
Hey there Kim & Peter,

I have had 2 nerve blocks done, by the sounds of it you are getting the Trigeminal Nerve blocked. That's the nerve that runs from the base of the skull to the top of the skull and then there is the Oxcipital nerve that runs from the front of the skull just where your eyebrow is and runs back to where the Trigeminal runs to.

I had a Spheno Gangleon Paletine nerve block which is a nerve that is near the top of the pallet in your mouth. They inserted a needle in through the side of my jaw to the top of my pallet. The nerve was injrcted with Lidnocaine (Local Anesthetic) to turn the nerve off. This can be quite effective as the nerve can be turned off anywhere from a couple of weeks to a number of months. There is no telling how long it will be turned off for as the nerve does what it wants to.

The first time I had it done it was quite effective for some time I think it was around 12 months that I was pain free for, the 2nd time it was done it had the opposite effect and made things worse. I think that it didn't get the nerve correctly and might have damaged it a little.

Has anyone talked about a nerve stimulator implant or there is a new sort of TENS machine out now where it is battery operated and you put it on the Corroted Arttery and you control the amount of stimulation that is given to the artery. The only problem is that when the battery runs out you need to throw away the machine and buy a new one and I think they are around $500.00 per unit. I managed to get one for free and unfortunately I had no success with it.

I hope that this information is helpful for you. I would suggest doing as much research about it and the Dr who is doing it for you. I can only suggest that you give it a go, with our condition we have nothing to lose if we don't give anything a go that could be of benefit to us.

Good luck with whatever decision you decide to make, but please as you said, do keep us informed as to what you do or any outcomes that you may have.

Matt
Silent Planet
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gregsydney

(Member)
From:
6 total posts
Currently suffering :(
Hi all,
Can you please advise on nerve blocking operation as I have been thinking about it but need more information.
How easy was to get referral for the operation? Do you know any good neurologist in Sydney that would do it? Did you do it in public or private hospital?
Thanks for advice
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Kim

(Member)
From: Victoria Park
95 total posts
Not currently suffering :D
http://www.medscape.com/viewarticle/715726

Hi all,

i had the greater occipital nerve block, it did not work for me.

however the research shows it works in CH between 75 to 85 percent of the time.
giving complete releaf lasting from weeks up to four months.

liocane alone doses not work, the injection must include a steriod.
it is important that the RIGHT steriod is used.

i did not find this out until after i had my injection.

the above link covers the subject very well.

i just got a referal from my gp to a radiologist.

the injection its self was no big deal, i was in and out in about 10 minuets.

i am happy that after 22 weeks this bout has come to a natural end.


kim
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