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The deep brain surgery is coming up!


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Hi all,

It's been a while again, Jan is still doing fine, no hits since the last 8 days! Almost unbelievable!

Last week he was contacted by his neurologist, the deep brain surgery is finally approved and he will have the surgery in approximately 18 weeks from now.

First of all he needs to quit the Deseril, then he has an appointment with the neurologist where they, again, will explain how the surgery works etc.

Once he is of the Deseril, he has to maintain an "online diary" for about three months. After that the surgery will take place.

That's what we know now, I guess there's more to it but we will hear more when he has his appointment.

Jan is both excited and scared, it's going so well right now that he first doubted to take the surgery but with the last couple of months in mind, when he had 13 hits a day, he feels like he should have the surgery.

We think the hits will come again when he gets off the Deseril and that's also a reason to go for it.

After the surgery he needs to recover for 9 weeks.

Meanwhile he lost his job because of this horrible condition so maybe this is the right time to do it.

We don't know if it will help killing this Monster, or maybe just reduces it by half but even if the second option is all he is getting out of it, he think it's worth it.

We'll keep you all posted, maybe, if we know the results, we can give advice from experience  [smiley=undecided.gif]

PF wishes to all of you!


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Thanks Tim, we'll sure keep you all posted.


You had this done? Does it work for you? How was the surgery and the recovery after that?

How long ago did you have it?

Can you give some advice or tips which he can use before he gets it?

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Please read my blog


and check out my youtube channe


its kinda like drs tell you your sick but dont tell you how to live sick and it was the same for me....sir we are going to implant an electrode into your hypothomulous and............

But no one tells you that after surgery I was going to vomit blood for 5 days, no one tells me Ill feel like I got hit  by a mack truck. No one tells me that the emotional feelings of people staring at your in public with 28 staples in my head. Or that the pacemaker will hurt.

No one tells you this. Was it worth it?

Honest answer......

Its been all back completely in for about 2 months roughly. I see my nuerosurgeon Monday for new programming. I knew full well it may not work or that as we discussed it has a 50% chance of pain reduction and that DBS is NOT A CURE. I knew this going into surgery. I knew I could die and get infection which I did and I was that 1% chance.

I know the other DBS recipient in Canada. I know it may take years or never to work. But if at any point I get releif and it does become a medical fact that it works to releave 50% of the pain for Cluster Headache Survivors than it was all worth it. I am not just doing this for me but the greater good. I offered myself to be the guinea pig because I am personally dead against illegal drugs. I do not comdemn others for their decision nor do I condone it. Your body your choice. My body my choice.

I wish everyone pain free days.

God Bless

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I offered myself to be the guinea pig because I am personally dead against illegal drugs. I do not comdemn others for their decision nor do I condone it. Your body your choice. My body my choice.

   CHS, it is very generous of you to come here and share your experiences. We all can learn a lot from you, I'm sure.  And it was also generous of you to be a "guinea pig" on one front of this battle, to mix some metaphors.

   I'm sure you realized that the statement of yours that I quoted would ruffle some feathers. I am only interested in clarifying your position, not arguing with you. You are right -- it is, like all of life, personal choice.  So I just wonder . . . When these "drugs" were legal, or even when they were sacred, would you still have been against them? That is, is it just the illegality that you are "dead against"?  And considering all that you have endured with a legal surgery, compared to the very minimal effects that many people here experienced with their illegal yet effective treatments, have you ever thought it might have been wise to try this course before trying the surgery?  I have to admit, I picture some guys sitting around saying, "Well, on the one hand we have this medication that works for a lot of people, and it has no lasting side effects and often not even any temporary side effects.  And on the other hand we have this surgery, where we cut into someone's brain, that occasionally works and has lots and lots of side effects. And, hey, the second one is really expensive and only available to those we say can have it, and the first one is very inexpensive and available to practically anyone. So let's make the first one illegal and the second one legal!"   

Sorry, I guess I ranted.  I think partly that's because I feel frustrated that you deprived yourself of an option that might have helped and been a lot less hard on you.  I really am sorry for all you've been through, appreciative of your decision, and hopeful that all you need is some tweaking of the device to have good results.  Thanks for your sharing.  I need to go look at your blog now.  I apologize if you have already answered my questions there.


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I am personally dead against illegal drugs

Oh OK I'm just now seeing this discussion after having replied to the New Member-DBS recipient, chronic survivor topic you started, CHSurvivor.

There are plants that literally grow right at our feet that are more powerful for preventing CH than any currently available drug, legal or otherwise (I say currently available, because there are high hopes for BOL-148 to become an approved and available medication).

Personally I think considering these plants that nature (or "God", depending on one's beliefs) has put in our faces and said "here, just eat this, I have provided an effective non toxic treatment", to be drugs is questionable.

It's certainly no surprise to me that the likes of Harvard Medical et al, have become involved in researching these plants and are confirming their efficacy for CH.

The Rivea Corymbosa seeds used by indigenous peoples for millenia for instance, can be very effective for some, are at least a good starting place for busting, and many of us have found that at therapeutic levels the only side effect is a good night's sleep, with no intoxication (!)

Comparing this to the vomiting of blood, 28 staples in head, infections, lack of relief, etc., or the specter of drugs like prednisone, I hope you may get a real sense of why busting is very rapidly becoming the treatment of choice for so many CH'ers, many of them middle age and older church going type folks who've tried countless therapies and only wish they discovered, or considered, this route long ago.

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I ask initially you please respect my persnal choice for surgery vs busting. I am ONLY going to say this one more time.

My body, my choice. Your body Your choice. I will never condemn nor condone anyones decision to do with their body so please dont suggest what I do with mine.

I explain in great detail my personal choice on the subject.

I am asking polietly please accept mine.

There is ZERO chance if debate with me or convincing in anyway shape or form nor would I convince,convey or try to get anyone to do DBS.

Its all personal choice. Leave it at that. thank you for understanding and respecting my views and opinions.

God Bless

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Alright, CHSurvivor, assuming it's the *illegal* part that's non-negotiable with you, I'll just suggest you may wanna keep an eye on the developments with BOL-148, an ultra powerful preventative with the sort of well funded clinical trials that can win FDA approval apparently beginning right around now at Harvard Medical.

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Oh dear,

It was never my intention to raise a discussion about using shrooms or not.

As you all know, Jan have been busting and with result. A small result that is, but as I wrote before, I guess he started at the wrong time.

And even though he's on Verapamil again now, he is still feeling that the shrooms work.

Besides the fact that the hits did get milder, he is also feeling better over all. Normally he is very depressed this time of year but since he started busting he's feeling better, more optimistic then ever. And off course the vitamin D is also a great help there.

So even after the surgery he will continue to take the shrooms and the vitamins.

Second, as I was reading the blog from CHS, I was confused, the neurologists never spoke about stimulating the Hypothalamus, so I read the information sheets Jan got again.

CHS is taking about DBS, just like in my subject rule but Jan's surgery will be an Occipital Nerve Stimulation and there's a huge difference between the two.

Jan will get two electrodes placed on his Occipital nerves at the back of his head right under the skin and NOT in the skull right at the Hypothalamus, this type of procedure is called ONS!

You can find the details here:


This was a great mistake of me, I should have thought about that before I entered the subject rule.

We have an appointment with the neurologist February 14th, where the surgery will be explained further. Jan can always decide not to take the surgery at any point in the process.

As you all know, he had his share off hits in the lost Months of last year. He is doing a lot better at the moment but is very scared the beast will return one day with a vengeance!

He has stopped taking Deseril, this was mandatory for the surgery, and he is feeling more shadows already.

He says he can still manage them with oxygen but the soon it will get worse, he will start busting again!

Again, my apologies for the confusion  :(


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I had ONS and DBS. First I had ONS Aug 13,2011 for 2 weeks and had zero success. Was removed and then set up for DBS. DBS was done Feb 27,2012. Was turned on 2 weeks later. 2 weeks after that I got an infection at my pacemaker(nearly died-gave me 48 hrs to live) so removed lead wires to the brain and pacemaker. That was April 1st,2012. Spent 40th b day in hospital. Sept 6,2012 was supposed to have lead wires put back in and pacemaker but came down with cold/flu(lasted 6 weeks thank god I didnt have ti done), was 15 min away from surgery when it was cancelled. Then had 4th and final for now brain surgery Nov 13,2012. Turned on a week later and neurosurgeon been adjusting it since. I go back tomorrow for re programming. I have had alot of side effects and no relief. I knew this going in and I m not syaing any of this to discourage anyone. I know ONS/DBS is NOT a cure, its a 50% chanc eof pain reduction. I know that it may take years or never happen for me but again....wiling to do this for the greater good. I am the 2nd in Canada 1st in Ontario and the 17th on the planet to have this done.

What works for some dont work for me. What dont work for me may work for others.

I keep a positive mindset it may happen one day for me.

For me prayer works and has kept me alive and thanking god for each day I am here and each attack I get as it has made me the person I am today.

My blog explains all of this if anyone is cuious. I have a blog specifically about my surgeries(scroll to bottom of page) with many photos of my brain with MRI, ONS and the wires in my head. I am here to shre my experiences not debate why I or you should have them or choices we make.

Surgery is not for everyone and it certainly wasnt easy.

It took alot out of me and I will never be the same ever. I know this and ok with it.

I am a proud Canadian and very blessed to have 100% free healthcare. The only cost I encure is parking.

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I won't discuss your decision not trying busting although I agree for the most part of what's written before.

I do have a question though, since you have had 4 operations, which, as I understand from your story, didn't give any relief, would you have done this if you knew the outcome?

I personally, can't imagine having such high risk operations 4 times, knowing the complications that come with it. It almost had cost you your life!

I for one, wouldn't do it for a second time, not even for the greater good but than again, maybe that's just egoistic.

Jan also knows that it's no cure and that for some people it works while others don't have any relief at all, just like you.

We also live in a country with good health care so it would be easier sticking to medication. But....all medication he had up until now just worked for a short period, once his system got used to it, the effects got less.

I'm really curious about your decision to have the surgery 4 times, it's not only for the greater good I suppose? There must be something in it that works for you!


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@Birdman, thank you, we also hope it will and he can be PF at least until the surgery. also hope your PF days will last a long long time :)

@CHS No, I don't live in Canada but in the Netherlands and I also wonder how other sufferers are handling the cost of medication. It seems so unfair!

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