Sounds like that little stimulator that's implanted in the upper jaw (incision is made inside the mouth behind the upper back teeth on the affected side), then activated with a wireless hand-held wand from the outside.

Yeah, it is.

I don't know why it won't attach the last letter "f" in that copied link. I've tried to do it twice.

Ariel, that's an awful lot of money to put out on a surgery that may not help. Please consider very carefully all other alternatives you have heard about, but may have discarded for whatever reasons. I truly understand the desperation one can feel...I've been there, and not so long ago. Meds, med combos, doubled up and varied abortives, clusterbusters...run the gamut first. If you can find someone else to pay for this, that's a different ballgame, maybe...just concnerned for you because deep suffering can be a bad time to make lifelong decisions. God bless. lance

Can I make a suggestion? Before you commit to losing your life savings on something that has a 50% chance of providing sustainable relief, go over to the clusterbusters message board, sign on, and start reading.

For a fraction of the cost (and I mean a teeny, tiny fraction of what you're looking at with this surgery), you can at least try a method that promises relief to 75-80% of those who try it.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Clusterbusters saved my life. And I do not say this lightly. Sufferer of over 20 years, 4 of which have been chronic and intractable. Minus the recent relapse I've suffered (which compared to the previous 20+ years has been actually somewhat tolerable), the last two years of my life have been PAIN FREE. And that happened after busting regularly (every 5-7 days) for a couple of months, then doing a maintenance dose every 4-6 months.

"It" doesn't stay in your system more than a couple of days. And I know of no routine test for it. Even with major employers, standard screenings only look for the big hitter substances.

Quote:


I could not totally, and most strongly agree with Lance more.  Look closely around the cluster-buster site that Bill gave you the link to.  There have been so many who have had their life back with the use of this alternative. 

I cannot even imagine paying 900.00 for just a consultation, much less the exorbitant cost of the surgery. 

Linda

Brew wrote on Apr 6^th, 2012 at 10:28am:

  What he said.  I'm pushing ten years PF.

              Potter.

I wouldn't discard Brew's advice. Cluster 'busting' has been very effective for many. I Just watched another story about it on NATGEO.

I just returned from the Cleveland Clinic. There are 2 "Dr. Tepper's" there. My appointment was with Dr. Deberah (sp) Tepper, which (incoviently) relocated her office from the clinic to a hospital. I had to see a different doctor once there. (actually 2 neuro's came in to meet me) I was referred there for a "Deep Brain Stimulator" so I have another appointment with a neurosurgeon in late May. (right now the DBS is OFF the table IMO because my attacks are down in frequency and intensity due to Histamine Desensitization Therapy. (No major attacks at this time)

After seeing the neuro's and going thru all my past meds and treatments, they recommended .... KUDZU root. WOW! I was shocked to hear them say that. According to them, Cluster specific trials with KUDZU was very positive 'especially among chronics'.

Plz consider the alternatives before surgery (Both "Busting" and Brew's '123 days pain free' thread) and goodluck to you.

I4B

PS> to BREW: I'm getting ready to get the needed stuff to give your regimen a real try. I'll post and update later ... and thanks again. 

My appt will be with the male Doc Tepper. They want their money first (consult fee) & even then she said his next appt is end of July, but I'm hoping a doctor to doctor call will get me in sooner since my doctor already spoke with them. I've never heard of the histamine therapy, but it's amazing that it is helping you & I hope it continues to do so. I'm going to ask about that. When they recommended you try the Kudzo, did they give you all the info you needed & where to get it & how to use it, or did they tell you to go about it your own way? I'm so surprised they told you that, too. I have been on the d3 & other supplement regimen for almost 2 weeks now, and that I will continue. I think the deep brain stimulator sounds scarier. But, If it was offered to me & I didn't have to pay, I would jump on it, so I understand how you were ready to do it. Thank you everyone for your replies. I will be reading up more tonight. And I'm not just saying that. I really will. For now I'm tapering down my prednisone as quick as possible & then going to do another big hit, starting at 80mg this time. Something has got to give right now. I'm slowly losing the will to live. I'm so glad I found this place though. I wish so much we didn't have to, but it is comforting to know there are other people who understand this level of pain & not to be looked at as a complainer or weak, or asked why I can't just "take some tylenol & get on with it."   

Thanks Brew for pointing out that it is Batch's regimen. I gotta give credit were credit is due. Thanks Batch !

As far as asking about Histamine Desensitization therapy, the Cleveland Clinic doesn't do it. You'll probably only find a couple hospitals in the USA that would do it. I only know of 2 places to get it done at. The Diamond Clinic and Floyd Memorial Hospital in So. IN.

An Occipital Nerve Stimulator has leads attached to the back of the neck / base of the skull area. What your talking about sounds like a Trigiminal Nerve Stimulator implanted inside the mouth. It requires 4 incisions (inside the mouth [a device about the size of a walnut], [electrical leads] near the temple and another higher, and on the chest [for the battery]). It's not a super invasive surgery (less than a DBS) but it is more invasive than the ONS.

I4B

I'll meet the neurosurgeon that does all these stims for the Cleveland Clinic on May 22.

@I4B, who will you be meeting at Cleveland? Do you know? They have given me an appt for april 25th with Dr. Michael Stanton Hicks, but I don't think he is a neurosurgeon, so I'm a little unsure about it. But that is who my neuro wanted me to see. I will be travelling far & I hope I am being sent to the right person. Esp since I am paying for all of this out of pocket.

@zacsz, thankyou for the info on the kudzu, I am going to get it right away. I'm willing to try everything.