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Purple

neurostimulation therapy operation

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Hi cat,

Welcome to our forum. Yes, please tell us what you can about your treatment. You're probably the only one here who's had it. I'm sure we'll have plenty of questions.

Thanks,

Ron

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I think I've seen mention of it someplace on this board. For some reason my brain is connecting Jeebs with the memory somehow. (Maybe he'll know.)

Please, please tell us all about it, Cat!

Mystina

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From the translation I'm seeing:

"- The operation is now tentatively doing on Horton's patients assume that you put a chip or electrode behind the jaw at the nerve bundle that is related to cluster headaches. When a seizure is coming, so put the patient himself by means of a remote control power to the electrode, and then slows Mon attack, explains Rigmor Highland Jensen.

It's a whole new way to treat patients at Horton. And so far, Christina Russell the first woman in the world who have undergone this surgery.

- It's really quite simple, and we have no serious side effects of this new treatment, which is part of an international research project. It has been known for 100 years, there is a connection between the nerve bundle in the jaw and cluster headache, but only now have found a way to use the knowledge, explains Rigmor Highland Jensen."

This looks like one of the things Dr. Goadsby was talking about at last years OUCH conference (with an even newer version being developed that would require no surgery/implant - just a remote hand held wand sorta contraption). It's the type of thing I was hoping Michael might become a candidate for with Dr. Goadsby's help, since the busting and everything else has gone bust for him.

I also recall Dr. Goadsby remarking on how one of these new technologies unexpectedly appears to have preventative benefits too, not just aborts...

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Hi guys,

The uk daily mail article is about Deep Brain Stimulation,not the jaw implant.prof goadsby said at our recent OUCH conference that all he is waiting for is a maxillofacial plastic surgeon to come on board then he hopes to be trialling this year.

Unfortunately he is at a private hospital,my treatment is on our NHS.

I am due to have Deep Brain Stimulation myself later this year.

My very close friend underwent the procedure 5 weeks ago.no medication other than paracetamol since.

He,like the lady in the article,is very very happy.

Dave

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Hi Folks

New to the board and just having a look round.

Could I just correct this statement

The uk daily mail article is about Deep Brain Stimulation

Carolyn has had the ONSI - Occipital Nerve Stimulator Implant with the new Rechargeable battery. This procedure is normally tried first as it's far less invasive than DBS.

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Apologies.

My mistake

Dyno is correct,its ONSI not DBS.didnt want to spread disinformation,the daily mail is very good at that itself........

Sorry

Dave

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What caught my attention about the lady...she still has to use injections and oxygen to get through the day. I wouldn't call that any kind of success.

I had the occipital nerve stimulator trial. The surgery and hospital cost me $30 thousand clams ( one of Bejeebers terms  ;)) and was an utter failure. Try having a 10 with wires coming out of your head in four places.

If a TENS unit won't do the job externally, it won't work internally.

my opinion

I don't blame any of us for trying everything. I have literally tried everything except DBS. That was my next option and when I turned to mushrooms.

Mushrooms aren't the perfect solution but they have seemingly changed me from chronic to episodic.....??? I now have extended periods of total pain free time without any meds or knives.

And nothing else worked at all except for when I nearly slowly died taking lithium and verapimil combo for two years.

David, you are my friend and I hope and pray DBS works for you....we have to keep trying shit and telling our successes and failures.

Dan

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David, you are my friend and I hope and pray DBS works for you....we have to keep trying shit and telling our successes and failures.

So True!  This is the part of "Citizen Science" that I Love/Hate!

Why is it that WE are on the "cutting edge' of treatments and not folks in the early 1900's!!  I know I'm whining here and I also know if this is genetic my descendents will be proud of all of us, but sheesh!!!! 

I just had a young man that I've been supporting via phone/facebook go in on Friday for the permanent ONSi in Canada.  I pray it works for him and I'm sad that it didn't work for you Dan! 

And I know this isn't the thread, but as far as the new name (replacing cluster headache) here's some more 2 cents....if they're referring to the device as a Deep Brain...blah, I think let them pay for the marketing AND our name change!!!  We're DEEP BRAIN [fill in the blank] patients!

:o 

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dan,

thanks for the kind words.i hate the fact that surgery is the only option available to me now.i hope and pray to god that if ever my descendants got this horrible condition we have more knowledge(and weapons in our arsenal).

hate the meds,the way they make me feel and think,

but im hoping for a life med free,relying on the DBS.

One thing that every one is talking about over here is

GAMMACORE.its a topical stimulator for the Occipital nerve.

i dont know how to post links(bit of a luddite when it comes to computers!! :D

the people posting about gammacore on OUCHuk are very very positive.its used ,i believe,as a preventative AND abortive.

still going through hell each day,but aiming to bust this weekend as the wife and kids are away,will post hopefully more positively

dave

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So True!  This is the part of "Citizen Science" that I Love/Hate!

If the docs can practice medicine then so can we. Practice makes perfect. Giver hell Dave. ;)

bb

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