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ONS-Occipital nerve stimulator

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Migraine Headache
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Posted 10/23/2011 8:50 AM (GMT -8)
Has anyone had one of these stimulators implanted for their headaches and if so has it worked? where did you

get the procedure done?

Suzane

Posted 10/23/2011 10:46 AM (GMT -8)
Hi Suzane,

Sorry I can't give any info on the occipital nerve stimulator. I however have been approved for occipital neuromodulation. I was told there are not many docs that do this procedure. I'm seeing a doc in New Hampshire. www.fosters.com/apps/pbcs.dll/article?Aid=/20071114/GJNEWS_01/711140070 Hopefully this news article link shows up for you. I'm clueless to what I'm doing on the computer.
Posted 10/23/2011 11:02 AM (GMT -8)
Thank you Just. I read the article and it sounds just like the ONS. Can I ask you what your headaches are like? I do not have migraines but have continuous severe bilateral temporal headaches which have been ongoing for more than eleven years. I have tried everything possible and nothing has helped me. I live in Ontario. When will you have yours done? can you ask where else this is being done and if it can help those with continous headaches? It sounds promising.

Thanks
Suzane
Posted 10/23/2011 1:23 PM (GMT -8)
Hi Suzanne,

I had ONS implanted at the beginning of December last year. I have Hemicrania Continua and Chronic Migraine. My Headache Specialist has just registered me as an 80% improvement!!!!

I wish I could recommend somewhere for you to have this done, but I cannot as I had mine done here in the UK!!

However, I would thoroughly recommend having it done as the chances of getting some relief if not good relief is high!!!

take care

Ann
Posted 10/23/2011 2:22 PM (GMT -8)
I have an occasional migrane. But those I can live with.

I have daily chronic headaches from a car accident I had over 6 years ago.

I've tried just about every med out there. I've also had bilateral greater occipital nerve blocks. The block works great until the lidocaine wears off. I take 400mg of Dopamax ( Topomax). However it does nothing for the headaches, but does help with the chronic nerve pain I have in my leg.

I'm trying to hold off on having mine done until I reach my insurance deductible. So I'm going to try Botox injections to see if that works. Suzanne I found my provider through my neurologist and St Judes SCS on their site is a listing of all the docs.
Posted 10/23/2011 3:38 PM (GMT -8)
Thank you Ann and JAD. I have been doing some reading on the net about the neuromodulation done in New Hampshire. I am going to call them tomorrow to see if I can get an approx. cost since i am in Canada. I am going to try to find out if there is anything done in Canada as well. Do you live in NH JAD? So you haven't had the trial yet? What is the difference between it and the ONS? it seems the same to me. Ann that is great that you are getting so much relief from your stim. You must feel like a new person!! Lucky you.

Suzane
Posted 10/23/2011 3:57 PM (GMT -8)
No I live in Maine.

I'm not exactly sure the difference between neuromodulation and the stim. I know for the stim the battery pack is implanted in your upper buttock area. The neuromodulator is implanted like a cardiac pacemaker.
Posted 11/6/2011 7:51 AM (GMT -8)
Hi, Suzanne!
I have what is diagnosed as "Daily Chronic Persistent Headache," and have had a never-ending headache on the right side of my head for over 2 years. My doc in Boston is interested in trying the Occipital Nerve Stimulator for me. I have a consultation next week and a procedure scheduled later this month.
Posted 11/6/2011 10:22 AM (GMT -8)
Hi Joe

So happy for you that you will be able to get the ONS. Please let me know how things go with your procedure, etc. I wish i could find something or someone in Canada that could do this. But i guess in time it will eventually get over here.

I wish you much luck.

I just can't imagine have less headache pain. What a wonderful thought.

Suzane

Posted 11/11/2011 8:14 PM (GMT -8)
I have chronic migraines and daily headaches. I had brain surgery several years ago due to having scar tissue on the right side of my brain. The brain surgery was a success however the migraines have gotten a lot worse. I wish I lived near a headache clinic. I have tried almost every kind of migraine med and supplements that my neurologist knows to give me. I'm sure there are some things that I haven't tried but I can't imagine what! For now I am just taking fioricet, zanaflex and toradol when needed.

Mercyme
Posted 11/12/2011 12:00 AM (GMT -8)
Hi Mercyme,

I have to travel to see my Headache Specialist. I have a friend in the UK who travels 500 miles to see my consultant - he wouldn't have it any other way even though he is on benefits, the benefits of the treatment he receives far outway the cost for him, got to say I would do the same if I lived there!!

I really feel for you Mercyme as the Docs must know that letting you have meds such as Fioricet that are loaded with codeine and have the potential to make things worse because of rebound headaches. I really wish I could help you find a way out of this!

I wonder if you could manage to find your nearest Headache Specialist and travel to see him/her, and they would give instruction to your local Neuro as how best to treat you?? My friend that I talk about sees my Consultant every now and then who instructs the local Neuro so many of the check ups he does not have to travel so often!!

Hang in there, take care

Ann
Posted 12/22/2011 9:39 AM (GMT -8)
I was fortunate enough to get the trial version approved. It worked amazingly well! I induced a major migraine (strawberry milkshake style) and within seconds of getting the settings right every last bit of pain went away. It was awesome. Then UHC decided to tell me that it was unproven and unsafe for my condition. I friggin' hate insurance company bureaucracy bullcrap.
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