Hello Everyone,

It has been ages since my last post. It is very good to be back.

I was wondering if anyone in Canada has had surgery help with their chronic clusters, particularly in the area of Vancouver B.C.? Who performed it & where? What were your results? Positive? Negative?

Have many people had any surgery to quell the beast? Has it work?

Paul

Oh my goodness me! Look who it is!!
Welcome back it's good to see you, kinda wish you were coming back to say you'd forgotten what CH was but - c'est la vie.

What kind of surgeries are you looking for info on? Have you been considering it? We have a few people here who have had varying surgeries and would be happy to give you the benefit of their experiences I'm sure.

I don't know of anyone off the top of my head in Vancouver but will look about and see if I can find anything for you

In the meantime welcome back! Someone staple his shoes to the floor this time while I keep him talking!  ;)

Helen

Still waiting to see a headache neuro here in Ottawa.....

I'm against surgery, but then I'm more against Clusters. Good luck

lol, no such luck. Cluster headaches sure don't like to be forgotten do they? I have been trying not think of clusters. Hoping that the less I think about them the lower the intensity will be. So I haven't been writing in my blog anything that requires me to think of clusters when I'm not in pain. But that didn't work very well.

They reason is that I saw my Neurologist/Neurosurgeon yesterday and he was telling me that they, his department, are reluctant to do surgery for chronic sufferers for complications they experienced in the past. Apparently in two different instances, one was for Deep brain stimulation and the other was putting electrodes on the nerve (I can't remember the name of the surgery). The outcome was that both were pain free for a few weeks but the attacks came and both committed suicide. I really feel for them. More the patients than the surgeons. I would love a few weeks without pain. I haven't had that many days in total since this hell began.
The neurosurgeon is recommended Botox yet again. It did nothing last time. Surgery is the only thing I haven't tried ( Minus mushrooms but I digress). So I am starting to get a little desperate. Maybe there are other who would perform it?

Any help you can provide Helen is very greatly appreciated. And it is good to be back in an environment where others understand.

Paul

P.S. Does anyone know sufferers in Chilliwack?

This may be a stupid question,

but have you tried 02?  People rave about success they've had with high flow 02. but if you're having as many as you are, this just may not be an option.

verpamil, RC seeds? there could be something easily available that could help at least reduce the pain

and I was sad to hear the story of those two patients. we all know the term 'suicide headaches' is an all to real name for this condition. just hope the Dr.'s are afraid of treating patients with the condition because of it

I have tried them all over the years. R.C. seeds being the most recent, excluding the o2 tank by my bed.

My heart definitely goes out to our two fellow cluster sufferers, & their families, who committed suicide because of clusters. Also to the others we don't know about. I can think of more than few times during a Kip 9-10 when I wanted more than anything to be rid of the pain. As I'm sure others have. Kind of scary to think that any of could do when we are being tortured like this. Especially since we aren't exactly thinking straight during that time.

I do think Dr.'s are more aware of patients with malignant pain are at greater risk of committing suicide than non-malignant. My guess is that the death will be attributed to depression and not cluster headaches. How often does death enter the thoughts of a dr. when they have a cluster headache patient? Still, from my own personal enquiries to doctors, albeit very non-scientific, only a couple of them have had more than 1-2 patients and none of them died while in their care.

Paul