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rockhopper

Hi, it's Tim from Germany ;)

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Hey guys,

I just wanted to introduce myself. Those who attended the CB conference in Nashville last weekend, will probably remember who I am. I'm the guy from Germany who gave the talk about the SPG stimulator :).

For all those who don't know me, here's a brief introduction: I'm 27 years old, chronic, medical student trying to get through the hells of med school inspite of having CH. I have been suffering from CH since I was 10 years old, which is pretty much of a long time. After all conventional therapies had failed for me, I've decided to go for the SPG stimulator, which works really well for me.

As a voluntary project back at school, I created website about cluster headache, which aims to explain, to all those who are interested, how CH works from a biological/neurphysiological perspective. I'm still working on getting it translated into English, however, there are already quite a few articles on there ready to be read!

Feel free to drop by (I'll post the link on my profile, as I'm not allowed to post it on here yet).

Feedback is always welcome and well appreciated!

Best wishes and many pf days,

Tim

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As a voluntary project back at school, I created website about cluster headache, which aims to explain, to all those who are interested, how CH works from a biological/neurphysiological perspective. I'm still working on getting it translated into English, however, there are already quite a few articles on there ready to be read! . . . Feel free to drop by (I'll post the link on my profile, as I'm not allowed to post it on here yet)

To save folks the trouble of going to Tim's profile to get to his valuable site, here's the link: http://www.cluster-heads.org/en/

Thanks, Tim!  I'm looking forward to spending time at your site, and I'm sure others here are, too.

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Hell yea Tim glad to see you brother you gave one of the most important talks of the conference in my opinion! I'm so glad you're here I too decided to sign up for the msg boards the day after the conference.

I will be considering the device and am willing to travel to another country for surgery if a necessity. I may try the SPG block here in NY first as I know if that works the impant will likely be effective! I definitely remember that question as to whether you had the block came up so thats what spurred me to try it myself before an implanted device.

You are invaluable Tim and once I re-do my site and change the name to Voice of the Patients LLC I'd be more than proud to interview you and offer you a money making opportunity giving online lectures about your device and procedure. Hope to talk again soon Tim PF wishes to you!

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Hey guys,

thanks, I'm so glad you liked my talk! And I'm also very glad I got to meet you all, you're such an inspiration for me as well. Also, I was so overwhelmed by the way you made me feel that I'm a part of your big cluster family, too.

I'll definitely try to come back next year. I'll have to try and save up some money though, because, as a student, my budget is very limited.

Michael- thanks very much! I'm really happy that my talk helped you. We discussed the idea of trying an SPG block prior to surgery and ATI told me that the SPGS might still work even if the SPG block didn't. But it's definitely worth giving a try! Just don't let it put you off if the SPG block doesn't work. Apparently, chemical and electrical manipulation of the SPG don't necessarily have to have the same effect.

Yes, please do feel free to get in touch with me whenever you like. I'll be happy to give you an internview or otherwise help you with your project. Giving online lectures sounds really good :). I'd be happy to do that.

I'll be heading back to Germany today. It makes me feel a bit sad, because I really liked staying here! :)

I hope I'll get to see you guys soon again.

Lots of PF wishes to you too!

Tim

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Hey Tim, thanks for sharing your experience in Nashville. I thought you did a great job with the presentation, I'm sorry it got a little bit sidetracked when you were pressed for details on whether or not the study was blinded, those questions shouldn't have been asked during your portion of the presentation!

What some of us in the back of the room were wondering about was the risk/benefit of this implant. You mentioned that stimulation of the SPG using your device can usually diminish or abort an attack in 8-20 minutes, but not all of the time. Also, your frequency of attacks has remained unchanged, correct?

So, all things considered, you're looking at essentially the same rate of abort as high-flow oxygen, with a somewhat invasive surgical implant. Personally, do you feel the benefit was worth the risk?

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Hey Tim!

I didnt not get to attend the conference this year but am making plans fo rnext year already.  I did visit your web page.  Incredible job! Thank you! HUGS and PFW!

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Hi Lieutenant2,

this just as a disclaimer: of course, I can only answer your question about risks/side-effects associated with the implant from my role as a patient, not as an expert on the device/health care professional. Apart from the usual side effects surgery can have (e.g. hitting blood vessels you aren't supposed to hit, irritating or damaging nerve fibers etc.), the risks/side-effects of the implant should be very low.

What I can imagine could happen as a side effect is numbness/paraesthesia/edema in the area supplied by the nerves that traverse the SPG on the side of the implant. But this does not happen to everyone and if it does happen, it is most likely going to be only temporary. Obviously, there is some risk that numbness/paraesthesia/etc. remains permanent (as with any other surgery).

For me, the SPGS does not only abort acute attacks but it also reduces attack frequency and intensity. However, as I mentioned in my talk, if I don't use the stimulator for a couple of days/weeks, the attacks will slowly reach their old frequency and intensity after a while again. So, it's a bit like being episodic. I do get more shadows now. For instance, if started at 6-8 attacks per day, after 2 weeks of "stimulating attacks away", they won't come back for a couple of weeks. Then, after a couple of weeks, they will slowly ramp up to reaching their full potential again, so I'll have to start stimulating for a couple of days again- and then the cycle starts all over again, i.e. weeks of little/no pain followed by the "ramping" process, where everything gets worse until you start to stimulate. That's just what happens to me though. Generally, it seems to be drastically reducing attack frequency/intensity in a majority of people (list of publications see http://www.ati-spg.com/europe/en/ati-neurostimulation-system/publications/ to give you a rough idea).

So yes, for me it has turned out to be much more efficient than O2, because with O2 I can only abort individual attacks without it reducing attack frequency.

Knowing the complications associated with other types of neuromodulation, I think the risks associated with the implantation of the SPGS can be considered as relatively low, because it's only a very small device with no need for batteries to be replaced or other materials that may be subject to wear. Also, the implantation procedure is pretty straight-forward and doesn't require surgeons to mess with your brain (as opposed to deep brain surgery, for instance- which is a very complex and risky surgery). At least for me the benefit was definitely worth the "risk". :)

But then again, yes, it is a surgery. And as with all invasive procedures, there are always certain risks ranging from complications associated with anaesthesia to other complications that one may encounter.

Hope this helps!

@Fabac: Thanks very much, really happy you like it! I hope I'll be abe to finish it all off soon. However, it is a lot of work, so it'll probably take me another couple of months until the website's completely finished.

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Thanks Tim! Some of us were talking about that in the back of the room, basically trying to do the math. We weren't sure to what extent you were getting a reduction in frequency, that was probably our biggest question. Thanks for clearing that up!

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Hey there Tim. Thanks for taking the time to come to the convention and presenting . I am glad to hear you are getting some relief from the beast.

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Hi TIM!!  Just wanted to catch you on here and say thanks so much for being an inspiration.  My medical records got sent to the SPG doctor today.  The ball is rolling and I have my initial appointment next week.  I know it's going to be a long road .... but I am ready!  ------ Tim is on the left, I am right beside him, and yes .... that's the world famous Hipshot photobombing us :)

post-222-14384707429816_thumb.jpg

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Oh LORDY that is one of the most classic Hipshot photobbombings ever!!  ;D :D

Glad to see you got to hang with good 'ol Runaway Slim and Bob W's son too.  8-)

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Another classic Hipshot photobomb.  From HOH this year.  Protesters in front of the Capitol building.  Dan couldnt help himself  :)

post-222-14384707430917_thumb.jpg

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