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zanychef

CH.com Junior

Back with a question
Mar 23^rd, 2015 at 4:44pm

Hi folks
been a while since i have been here openly so hope you are all doing well

I'm ok still pesky chronic but doing ok have a lovely daughter now too

nearly 6 where does the time go?
I was wondering if anybody can point me in the direction of the Gammaknife results for surgery as I'm sure there was a fatality of a CH sufferer but can't seem to find my links to the relevant studies
thanks in advance
zany
xxx

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plenty of time to sleep now me headaches aint too bad:)

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Back with a question Reply #1 - Mar 23^rd, 2015 at 7:30pm Can't begin to answer the question but thought I'd jump in anyway just to say G'day. Glad everything is going well for you.
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zanychef CH.com Junior Offline i'm busting with a masx cant really go wrong can i Posts: 97 x1\|worthing\|England\|europe\|172\|244\| Gender:	Re: Back with a question Reply #2 - Mar 23^rd, 2015 at 7:33pm Gidday Brian long time no see fella yes things good here generally hows you doing?
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Back with a question Reply #3 - Mar 23^rd, 2015 at 7:43pm Mate, I'm going quicker than a free keg at wharfies' picnic. Beautiful weather, my brewery bubbling fit to rattle off the shelf and I'm still fulfilling my national duty in keeping barmaids employed. PF times for all, Brian down under.
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BarbaraD

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: Back with a question
Reply #4 - Mar 24^th, 2015 at 9:36am

Zany...

Before you EVEN think of anything like that Gammaknife.. start reading.. There are some things that have happened in the last few years that have had GREAT results for a lot of us.

D3 regimen is working for so many of us. After years (since 97) of being chronic, I've been PF since Oct of 2013 since going on it.

Try that before you do anything else... Check with Batch.. Kiss

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What don't kill ya, Makes ya stronger!

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zanychef

CH.com Junior

Re: Back with a question
Reply #5 - Mar 24^th, 2015 at 9:59am

Barbara

ltns
I'm not considering it at all it was just trying to find the results of the case studies...
I'm being treated by Prof Goadsby in London and possibly doing a few trials with him (Gammacore stimulator ,implants (new ones not onsi or dbs ) or possibly an injection (course of ) of a specific anti body
the Gamma knife was merely research based for records
glad to hear D-3 working well for you
zany

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plenty of time to sleep now me headaches aint too bad:)

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Back with a question Reply #6 - Mar 24^th, 2015 at 1:55pm Hi zanychef, I know nothing about the gammkife, but I did the gammaCore trial with Dr Juana Marin, a couple of years back. I put a few posts on here if you want to look back. I have one with me all the time for emergencies. Send me a PM if you want more details or to discuss further. Keep well, Peter.
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zanychef CH.com Junior Offline i'm busting with a masx cant really go wrong can i Posts: 97 x1\|worthing\|England\|europe\|172\|244\| Gender:	Re: Back with a question Reply #7 - Mar 24^th, 2015 at 5:24pm Thanks Peter Trials are forging ahead with the Gamma core here with some very good results I'm hoping to get mine if accepted in the next 6-8 weeks If and when i get one I'll very probably have a chat with you zany
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Peter510

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Don't give out... But
don't give in.

Posts: 966
Wexford. Ireland
Gender: male

Re: Back with a question
Reply #8 - Mar 24^th, 2015 at 5:34pm

Zany,

Best of luck with the trial.

Have a good look at the D3 programme too. I'm about 8 weeks in and doing very well on it. I've gone from 2 years chronic (every single day) to some shadows and the occasional kip 4-6 and even these are reducing in frequency still. Worth a try I'd say.

Contact me any time at all.

Keep well.

Peter.

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You don't stop laughing because you grow old....You grow old because you stop laughing.

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zanychef CH.com Junior Offline i'm busting with a masx cant really go wrong can i Posts: 97 x1\|worthing\|England\|europe\|172\|244\| Gender:	Re: Back with a question Reply #9 - Mar 24^th, 2015 at 5:58pm Peter I have looked in to it and at the moment not for me as after 30 yrs of daily meds i cant stomach the thought of popping more pills so have decided at the moment not to try pfdan zany
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Mike NZ

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Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: Back with a question
Reply #10 - Mar 24^th, 2015 at 6:27pm

zanychef wrote on Mar 24^th, 2015 at 5:58pm:

Peter
I have looked in to it and at the moment not for me as after 30 yrs of daily meds i cant stomach the thought of popping more pills so have decided at the moment not to try

If that is your only objection I'd strongly suggest that you at least give it a try. I've been CH pain free for over 3 years now and there are some who have gone over 4 years, covering both chronic and episodic.

Do at least keep this as an option.

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Back with a question Reply #11 - Mar 24^th, 2015 at 10:53pm I did a little looking, but didn't have the time to do much. If you enter the search terms in the search box just above you will find quite a few posts regarding the gammaknife surgery. I didn't find a death, but I didn't find much positive about it either. Glad to see you back! Jerry
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Back with a question Reply #12 - Mar 24^th, 2015 at 11:35pm I went 43yrs as an episodic CH, and then I found this website, and started on the vitamin D3 regiment, been CH free for two years now, and would recommend you give it a try before going under the knife which to say the least doesn't have a good record when it comes too CH's. Hoppy.
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Back with a question Reply #13 - Mar 25^th, 2015 at 2:47pm There has been a death as a result of the surgery for deep brain stimulation: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Quote: However, one pilot study did report a death due to post-operative intracranial hemorrhaging, an inherent risk for all DBS surgeries .
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zanychef

CH.com Junior

Re: Back with a question
Reply #14 - Mar 27^th, 2015 at 4:59pm

Thanks everyone for the input and warm welcome back

I will consider D3 after i have worked with Prof goadsby for a while

Please understand I am NOT considering Gamma knife ONSI or DBS as an option

:)
I am looking forward to trialling Gammacore device however and possibly the trial for antibodies that is starting soon

I want to do these to assist the wider community and the medicos to further our knowledge in the treatment of our condition

I hope to be a bit more regular back here as i now have more time to concentrate on matters CH
zany

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plenty of time to sleep now me headaches aint too bad:)

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