I asked many doctors but only one said surgery is possible , is it true or that doctor want only more money ?

There are several different surgical approaches reported in the medical literature. Results and side effects are rather mixed.

In my judgment, at this stage, this should be reserved as a last type of treatment after the established, conventional treatments have failed. And then, I'd be cautious about the doctor who is proposing the surgery. Would suggest consulting several docs for their evaluation/judgment before proceeding.

If you have a trusted relationship with a Cluster doc, would be useful to site down and review the whole course of your treaments to insure the most helpful approaches have been tried, fully, AND that you are not being pushed by how distressed you feel.

I will try the vitamins if not work I will opt for surgery

Thanks Bob

There is a surgery where the implant a deep brain stimulator and there has been success with some people.  I think at this point it is only considered medically appropriate if the patient has failed all other therapy options.  Also, it's still in investigational status as far as I know, so your insurance isn't likely to cover it.

Shy1 wrote on Feb 4^th, 2014 at 6:27pm:

There is a surgery where the implant a deep brain stimulator and there has been success with some people.

It has also been fatal for at least one patient.

cch have you concidered clusterbusting?

Yes, there are several different possible surgeries possible. Some are invasive (like DBS) others are non-invasive (radiation).

I think in general that ANY kind of surgery should be taken as a "last resort." Some work (sort of) some fail, some are only temporarily successful, and some have resulted in the death of the patient.

BEFORE you even CONSIDER surgery, you should consider as many non-surgical interventions as possible. Perhaps you've tried all meds and therapies under the sun to no avail, but again I would recommend that you try pretty everything else you can before going the surgery route.

I had radiation surgery on the trigeminal nerve root first. Seemed to help for awhile, but then they got worse again. Second radiation procedure was on the sphenopalatine ganglion. Helped for a while, then they got worse again. Third time did BOTH trigeminal nerve root AND sphenopalatine ganglion. Was working quite well and recently they've been getting worse (which I am hoping is mainly the freakish weather).
       Probably the main side effect of the radiation treatment is numbness and lack of sensation in parts of my face. I CAN still feel the Beast sticking his finger in my eye/eye socket though. As for the numbness/deceased sensation, you get used to it but occasionally discover how bad a pill tastes when it starts dissolving in your mouth because it got stuck between lip & gum and you couldn't tell it was there (sudafed tastes awful, by the way). Also imagine laughing when you kiss your girlfriend because one side of you lips are ticklish when touched/stroked. Damned odd that.

       Of course, with all the radiation who knows, one day I may discover I have brain cancer or something.

       So in the end, you should think LONG and HARD about ANY kind of surgery, and in my book, ESPECIALLY if it's invasive (i.e., opening up your head and fooling around with your brain). ALL surgeries I've seen for CH have side effects, which for some is death, paralysis, or other neurological impairments. Imagine ending up paralyzed and being unable to administer an abortive without assistance.

       But in the end, it's your body & your decision, for good or for ill.

PS: By the time I had the radiation surgery, I had tried pretty much everything else, at least in terms of the numerous classes of available medications, whether as a preventive or an abortive ....

I agree that surgery should be a last resort, particularly the invasive kind.  15 years ago I was at the end of my rope with chronic clusters that were totally refractive to all medical approaches - I'd been to a number of headache centers and nobody had any new ideas.

I had 2 radiofrequency rhizotomies - where they insert a needle and basically burn V1 and V2 of my trigeminal nerve.  I have no sensation on my right side from my upper lip to halfway on the top of my head.  It worked for me for 6 months then the headaches came back.  I had the same surgery again but this time didn't provide any relief from the clusters.  I am still numb there, although some sensation has returned around the periphery. 

For me, I was desperate and without those 6 months of relief who knows where I'd be now (that was before busting and D3).

Yeah, the numbness takes some getting used to, but I don't even notice it today.  Plus I need to constantly use artificial tears in the eye because it dries out and doesn't realize it needs to create more tears.  Also you need to be careful in dusty environments to ensure nothing gets in the eye without you realizing it.  The only negative side effect I've had other than the numbness is I had a bad cornea scratch that I didn't realize was happening 6 months ago and could have permanently lost useful vision in that eye (my vision was 20/400 by the time I got to the ophthalmologist - now it's back to 20/30).

Bottom line - I was desperate and at the time it was the right / a necessary choice for me.  My advice is consider some of the non-invasive surgeries only after you've tried everything else as far as medications, D3, and (if you so choose) busting.  Also, at the time they were still telling me to use O2 at 6 LPM which did no good at all.  Today, with oxygen working as well as it does with the demand valve to abort the headaches quickly, I would be less apt to try it.

Regarding the hypothalamus surgery, I personally don't think I would choose or advice anyone to choose that under any circumstances.

Matt

Hi, I have had 4 brain surgeries.
First when I saw my neurologist he said one last thing...
INjected a nerve block in back of my head. Said go home. If it works we will know in the next 24 hours...
I didnt even make it to my car at the hospital parking lot before having an attack...

So he sent me to a neurosurgeon.
I am in Canada btw which makes every difference.
(meaning no worries if paying/insurance/etc).
So I go there guns a blazing.
I researched researched researched for MONTHS
And since like they discussed above...have exhausted all medical resources. Personally my decision not to bust.
For argument sake those who know me, know I full support it. But its not for me....(leave it at that).
Anyway, so I write a 6 page letter to this unknown surgeon.
My wife and son and I go to the hospital, introduce ourselves,
Now he is a neurosurgeon who specializes in Parkinson and dables in pain...
I read him the letter, cried my eyes out while my wife and son braved tears rolling down their face.
He looked at me with such kindlness and empathy in his eyes, and said I want to help you. Since I was educated about DBS I was shooting for DBS from the get go.
He said. Im sorry Tom OHIP ( Ontario Health Insurance Plan aka free healthcare)will not pay for DBS until you had ONS.
Occipital Nerve Stimulation. He explained ONS and DBS.
I had no choice but to agree to it to get DBS if ONS didn't work.
However....you must have a full psychiatric evaluation.
So sent me and I passed with flying colors.
Because of the suicide rate with CH, he said no offence. its very expensive...I don't want you committin suicide if it doesn't work.
soooooo, first surgery ONS which was a trial and the neurostimulator-pacemaker was external and the electrode wires came out of my head. Had in 2 weeks.
Then I had DBS, got infection and then had it removed and then reinstalled, hence the 4 surgeries.
I can not speak for where you live, your insurance, your personal decision. But let me make myself very clear.
Whether it works or not. Your life will be FOREVER changed.
You need to think LONG AND HARD before doing this. Visit hospitals, patients whom have had this...see them in person.

I am the 2nd in Canada and at the time 17th on the planet to have DBS. Now approx I am 1 of 24 according to my surgeon whom has had this done.

I have the coolest surgeon on the planet. Great guy. Farthest thing from a surgeon you will ever meet. So laid back and treats you like a human being. However. I told him I would retire with him trying every approach we can with DBS (reprogramming) every 3 months until we find the sweet spot. DBS is Not an On OFF switch.
Its different than DBS on Parkinson for 2 factors. One where they place the electrode in the hypathalmulus and 2nd if the surgeon programs the stimulator and the patient stops shaking/moving. Then it works. With me its a roll of the dice.

My post/thread here is miniscule to my story, the surgery, how it happened and more.
please visit my blog and scroll down for topic subjects for more info.
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I also have videos on YouTube page under ClusterHeadSurvivor (no spaces)
I have one video that explains alot its about 28 min long called My life with Suicide Headaches aka Cluster Headaches.

I hope this helps answer some questions you may have.
Do not let em be the mitgating factor in your decision to have surgery. Just let it be a small part. I will nevr tell anyone what to do or how to treat cluster headaches. I only tell people of how I have experiences my life with them.

Best wishes in your decision.

Many thanks guys for all advices I am getting hard time here 6 attacks in one day!!

Please explain what is cluster buster ?

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Great post CH survivor :)