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Title: Hypothalamus implant Post by CJohnson on Jul 7th, 2003, 8:56am First I would like to apologize to anyone who was offended by remarks I made in a certain thread. I thought about it all weekend, and I was out of line. There are many valid reasons not to employ shroom therapy. Indeed, it is the strength of people who stand by their convictions in the face of severe adversity that made this country great. Such persons should be applauded, not criticized. Secondly, I contacted the neurosurgeon, Dr. J. A. Brown, M.D., who wrote an article about the hypothalamus implant (stereotactic electrode implantation) which the Italians had so much success with, and this was his response. Mr. Johnson, There are other potentially beneficial surgical procedures for cluster migraine headache that are discussed in this paper and are done in the United States by qualified neurosurgeons including me. Only 11 patients in the world have had this operation which is considered experimental. There is no research protocol for this operation in this country. Does anyone know if the Italians plan to use this procedure again? Does anyone consider this a valid form of treatment for prophylaxis of chronic untreatable CH? PFDANs -Curtis |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 7th, 2003, 12:06pm Goadsby does consider it possible. He showed us an image of a brain during an attack, showing the side of the brain where the pain was -showed bright red, then the hypothalamus, with a bright red spot in the centre of it as well. This shows that not only is our hypothalamus abnormal, but that part of the brain also behaves abnormally during an attack This is where they place the hypothalamus implant to block the abnormal activity I think. He said that this 'proof' of what is going on during an attack was going to prove very valuable in the future to 'hook' people into treating CH more seriously. He seemed to be suggesting that although this new procedure is experimental, it has been very effective and an exciting possibility. The video Jonny has/will have has the images and Goadsby's speech containing the implant stuff if you are interested. Also mught be worth asking about at the conference Don is attending perhaps?? W the B |
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Title: Re: Hypothalamus implant Post by cathy on Jul 7th, 2003, 1:02pm I am posting the tapes to Jonny tomorrow...I was hoping to get them onto disk, but im blonde so what do I know...anyway Jonny has offered to sort out the rest. Apparently this procedure has been carried out 7 times successfully...apart from one of the 7 developing the pain on the other side...np...just repeated the procedure on the other side too. As Wendy said there is some info on the tapes. Cathy |
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Title: Re: Hypothalamus implant Post by Peppermint on Jul 7th, 2003, 1:13pm O my goodness ::) Cathy & Wendy... since you were there.. .you recall a post I put up on Uk ouch about the implant. I am certain I confused this implant with the occipital nerve stimulator implant. (Duh, especially since its called the HYPOTHALAMUS IMPLANT...... :-/) Just heard back that Dr. Dodick had only heard of 2 successes witht the occipital nerve stimulator implant (ONSI) for migrainers, not chronic ch patients, if we understood his letter correctly. I was baffled at this, until now, since in my discussions about the newest implant, I thought we were talking about the ONSI. Please tell me the implant you are talking about is the newest one, that will probably make a big difference in my friend's upcoming approach to Dr. Dodick. I will try to get in contact with Mo, but if you have any info, I'd surely appreciate a post here. Thank you ladies. ;) Pepperoo |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 7th, 2003, 1:21pm Yes Pep, absolutely it is different. He did talk about the ONSI as well, but this hypothalamic implant is new and as Cathy says, so far 100% successful if you include the one person whose pain was cured on one side, then jumped ship to the other side and had to be done again. There were also no adverse events reported from the procedure either. ONSI as far as I can gather has nowhere even approaching this kind of success. W the B |
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Title: Re: Hypothalamus implant Post by Peppermint on Jul 7th, 2003, 1:27pm YES! YES!!! Thank goodness! I thought we got stonewalled again, it was very discouraging to get that letter from Dr. Dodick, since it appeared that there were no successes with CH. Are Dr. Goadsby and Dr. Dodick working on this research together? That is what I originally understood, apart from the confusion of the two different procedures. Just want to be clear on that, if its to be discussed in the near future. There is a great deal of interest in this procedure for my friend, just trying to get more information about it, risks, costs, etc. Seems like there is hope after all. And btw, he is back to square 1. Damned insurance. >:( |
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Title: Re: Hypothalamus implant Post by CJohnson on Jul 7th, 2003, 1:29pm Here is a link to the implant article by Dr. Brown. Link: http://216.239.37.100/search?q=cache:Cn7r23CRCaYJ:www.neurosurgery.org/a ans/meetings/2003/731.pdf+cluster+headache+2003&hl=en&start=14&ie=UTF-8 Exerpt: Results: At the last follow up (30.8 months) all patients were pain free without drug treatment. When the stimulator was switched off the typical attacks recurred; and when the stimulator was switched on the attacks disappeared again. No side effects (changes in arterial blood pressure, heart rate or skin temperature) were observed during intraoperative stimulation or during the post-operative course. All patients underwent postoperative PET scanning in on and off stimulation. Body temperature, arterial pressure and heart rate were monitored for 24 hours before and after the hypothalamic implant. Broggi Giovanni MD Franzini Angelo MD Bussone Gennaro, MD Ferroli Paolo, MD Leone Massimo, MD Dones Ivano, MD Marras Carlo, MD Discussant: Jeffrey A. Brown, MD PFDANs -Curtis |
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Title: Re: Hypothalamus implant Post by Mark C on Jul 7th, 2003, 1:44pm on 07/07/03 at 13:29:21, CJohnson wrote:
:o I have not been PF for 30 months for the last 30 years! Good stuff Curtis...and gang....thanks. "The hypothalamic stimulation treatment is a safe and effective alternative for treatment of drug-resistant chronic cluster headaches," said Angelo Franzini, MD, co-author of the study and an AANS member. "The procedure does not cause any of the unwanted side effects associated with surgical procedures." |
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Title: Re: Hypothalamus implant Post by Peppermint on Jul 7th, 2003, 1:46pm Thanks for the link Curtis, I'll forward that to my bud. Also, thank you Wendy & Cathy. This really should be copied under the meds board... its an important topic. I was looking there, and lo and behold, here it was...... :) |
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Title: Re: Hypothalamus implant Post by CJohnson on Jul 7th, 2003, 1:57pm Dr. Brown said that there is no research protocal for this procedure in the U.S. Maybe OUCH could get something going. Perhaps someone like Jill could benefit from this procedure. Especially if it was done as part of a research project (free). Is this any more extreme than a pin in your knee joint or an artificial hip? These are common and harmless today. PFDANs -Curtis |
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Title: Re: Hypothalamus implant Post by BobG on Jul 7th, 2003, 3:20pm Curtis...........the other thread is over and done. Thanks for this one.........very interesting and important information. |
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Title: Re: Hypothalamus implant Post by Drk^Angel on Jul 7th, 2003, 3:21pm CJ... From what I've read, the proceedure is as risky as any other brain surgery. PFDAN................................. Drk^Angel |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 7th, 2003, 7:28pm Dark Angel No interventions into the brain are risk free and you are right to highlight this. One of the interventions discussed at our conference had resulted in some very serious adverse events in a substantial proportion of people including meningitis and one death. From what we heard though, the hypothalamic implant was not cosidered to be as high a risk procedure.(certainly wouldn't call anything like that similar to an knee of hip surgery though) W the B P.S. Pep, Goadsby isn't pioneering this,the Italians are, he was giving us an up to date state of play on Cluster Headache develpoments everywhere in the world. |
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Title: Re: Hypothalamus implant Post by Drk^Angel on Jul 7th, 2003, 8:34pm on 10/01/02 at 08:24:42, Riccardo wrote:
Here's one of the best explainations of the proceedure and the possible risks that I've been able to find (Thank you Riccardo!). I didn't mean for my above post to sound like the proceedure is a bad idea. I just meant to highlight that it's a bit more risky than knee or hip surgery. I think this proceedure shows great promise in both a treatment for, and source for greater knowledge of, cluster headaches. I hope that the research down this avenue continues and is expanded. PFDAN.................................... Drk^Angel |
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Title: Re: Hypothalamus implant Post by TraceaTX on Jul 7th, 2003, 9:51pm Hi! i am back..... I just want to know how I can get to Italy!!! Tracea Still in the middle of cluster-ville with no end in sight. |
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Title: Re: Hypothalamus implant Post by Mike_P on Jul 9th, 2003, 3:28pm Wendy, Sorry to take issue with you regarding Prof. Goadsby's plans but I went to the meeting in Birmingham and he never once mentioned “doing” The Deep Brain Stimulation operation. I spoke with him today and he apologises if you misunderstood his comments but he is only planning The Occipital Nerve Stimulation at present. He feels that the Deep Brain Stimulator is too invasive to attempt in the immediate future without exploring all the possibilities of the much less risky Occipital Nerve Stimulator procedure. Regards Mike P |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 9th, 2003, 4:36pm MIKE P You are the one who has misunderstood, not me. I was listening very carefully to everything he said and I say very clearly above (see the post to Pep) that Goadsby is not DOING the implants and that it is the Italians pioneering it. He was reporting new developments in CH treatment to us at the conference, and I say this very clearly above as well. I heard and understood very clearly which invasive procedures he felt were the most risky, I remember clearly his stats about the adverse events associated with the procedures you mention, hence the reason for me posting in support of Dark Angel's post about the dangers. I am very put out that you have seen fit to feed back your own misunderstanding to Professor Goadsby as he may think twice about telling us so much in the future if he thinks we don't understand. I have reread what I posted above and it is still beyond me how you have interpreted what was written as me saying that Professor Goadsby was carrying out these procedures. No-one else misunderstood as far as I can see, why would Tracea want to go to Italy if she hadn't understood that that is where the pioneering is being done? I would know like to know what you think should be done to repair any damage caused by this? Looking forward to your response Wendy the Brit |
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Title: Re: Hypothalamus implant Post by Mike_P on Jul 9th, 2003, 4:54pm Wendy, There is some ambiguity about your posts, if you are saying in your earlier posts that Prof. Goadsby is doing the Occipitial Nerve Stimulator, i.e. the one which has been done by David Dodick where the stimulator wire is inserted at the back of the neck whilst under local anaesthetic followed by a pacemaker type appliance under the collar bone which is done under general anaesthetic. A remote control is used to increase the voltage to the hypothalamus I apologise. Perhaps you would clarify. |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 9th, 2003, 5:06pm Help me out here folks, I do not think I have said anywhere ANYTHING about procedures being carried out in the UK, I have clearly stated that we were being briefed about developments around the world and suggesting that if people are interested they should watch Cathy's video of the speech and the slides. |
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Title: Re: Hypothalamus implant Post by Mike_P on Jul 9th, 2003, 5:10pm Can you answer my question? |
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Title: Re: Hypothalamus implant Post by Mike_P on Jul 9th, 2003, 5:22pm Wendy, having reread your earlier posts you state “From what we heard though, the hypothalamic implant was not cosidered to be as high a risk procedure.(certainly wouldn't call anything like that similar to an knee of hip surgery though)” Drilling into the brain is always considered high risk. The operation described in my earlier post is the low risk one. Mike P |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 9th, 2003, 5:25pm What is your problem Mike? This is using up board space causing confusion to others where there wasn't any before. I have checked with a few people and no-one else has misunderstood. Take it to private message before you confuse things even further. Wendy Amended as you other post appeared after I had posted this. If you feel people are so confused, I suggest that to put this right, you do a neat summary here of the presentation on Invasive procedures so that no-one can be confused any more if you think they are |
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Title: Re: Hypothalamus implant Post by jonny on Jul 9th, 2003, 5:31pm Yeah Mike, Take it to private message or I will be forced to behead you for taking up space with your argument. .........................King jonny |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 9th, 2003, 6:09pm Right then folks If you are confused as Mike thinks here is a quick summary. There are three procedures being described here. I did not state that any of them are being carried out here but if you are interested (and I doubt you are as if you were in the UK you would know) ONSI is used here. N.B. All interventions into the brain carry a level of risk, some are higher risk than others ONSI- Occipital Nerve Stimulator Implant. - widely used and reported. Many archive posts here about if you are interested. Lower risk as relatively non-invasive as it stimulates external nerve (i.e. the implant is not placed deep into the brain itself). Hypothalamic Implant- Being pioneered in Italy (see above posts for details) Early success being reported (see above again) but in experimental stage only. Invasive neurosurgery so risk involved as the implant is inserted into the hypothalamus itself, but no adverse events reported to date. Other neurosurgery (as opposed to ONSI or implant). This was mentioned but has not been discussed in the posts above. The reason for this is that various procedures have been undertaken and have resulted in serious adverse events such as meningitis and in one case death has resulted. Is this clear now? If not please tell me and I will rewrite it W the B And if it wasn't abundantly clear (which I think it was) Professor Goadsby was REPORTING the invasive procedures, not advocating them or carrying them out. |
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Title: Re: Hypothalamus implant Post by Mike_P on Jul 10th, 2003, 2:26pm Firstly my message to King jonny (sic), whoever you may be. As America is supposed to be the land of free speech how do you reconcile your threat to cut me off with the acceptance of Wendy’s messages? Double standards? To Wendy, as I have more knowledge of the procedure of Occipital Nerve Stimulation for Cluster Headache than probably all but two people in the U.K. I feel I am entitled to give an opinion. This is not “widely used” please get your facts correct. How many procedures have been done, give me your best estimate as to how many have been done in the U.K. You have also said that there are three neurosurgery procedures for Cluster Headaches, oh really, perhaps you would advise us all of the third. I have had numerous messages today from people saying they agree with my comments, your statements are both confusing and inaccurate. You are famous for your outspoken and sometimes rude comments on the U.K. Ouch site, I didn’t realise that you exported them to The U.S.A. This is the last message I will post on the site, given the vitriol I have received from you Mike P |
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Title: Re: Hypothalamus implant Post by cathy on Jul 10th, 2003, 3:00pm on 07/10/03 at 14:26:27, Mike_P wrote:
1/ I think it'd would have sounded soooo much better had you put WHOMEVER you may be...IMHO ;D 2/ Okay so if your sooooo clued up on this then instead of stirring up a whole load of shit, why not be a big boy and just tell us the correct information.. ??? 3/ Okay okay perhaps there's only two...you could have politely informed her of that. :-/ did you know sarcasam is the lowest form of wit...I did... :) 4/ Okay all these people who have agreed, why not put it on the discussion board so we can all discuss it like adults... ::) 5/ actually in that tense, I believe in my opinion that is, that it would be better to use the word infamous....sounds better don't you think.. Shame your not posting again, would have been great to get to know you and you could have told me what the word vitreol meant... :)Cathy |
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Title: Re: Hypothalamus implant Post by CJohnson on Jul 10th, 2003, 3:28pm This, from here : http://www.postgradmed.com/issues/2001/01_01/dalessio.htm "Surgical procedures include sphenopalatine ganglionectomy, radiofrequency thermocoagulation of the trigeminal ganglion, and section of the trigeminal nerve " These plus the implant equal 4 surgical procedures for prophylaxis of cluster headache. 1. sphenopalatine ganglionectomy 2. radiofrequency thermocoagulation of the trigeminal ganglion 3. section of the trigeminal nerve 4. hypothalamus implant (deep brain stimulation - stereotactic electrode implantation) Are there any others? Occipital nerve stimulation? Is that 5, or am I confused. For the record, I didn't think that Wendy suggested that the esteemed Dr. Goadsby was performing the procedure, only that it had been successfully implemented in Italy. PFDANs -Curtis |
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Title: Re: Hypothalamus implant Post by jonny on Jul 10th, 2003, 3:35pm Its kinda hard explaining that to Mike the good DOCTOR! .........................jonny |
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Title: Re: Hypothalamus implant Post by BobG on Jul 10th, 2003, 3:52pm What the heck is Mike P arguing about? I've read this string 3 times and can't find anywhere that Wendy said Dr. Goadsby was "doing" this procedure. The only thing even close, and it's far from close, was Wendy saying Quote:
How can anyone get "doing" it from that paragraph. |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 10th, 2003, 4:33pm I don't normally get involved in arguments like this here anymore ;) but........ I don't have to intro Wendy as you all know her. Mike on the hand is new to you all but I can vouch for him as a 'stand up guy' and yes he does know more than most in the world (I would say) about ONSI ! If he disagrees with Wendy then it's that simple - they don't agree ! Quote:
I know this is your opinion Wendy but I must say that I think you are wrong. I can't imagine why Professor Goadsby would call the Deep Brain Stimulator an effective treatment when it clearly is not that hot. The Italians own research quotes that only three of the eight patients remain pain free without the use of CH controlling medications. Quote:
As for the stimulator - Dodick has done two here in the USA with supposed good results and also two have been done in Belgium with similar reported results. If you remember I asked Professor Goadsby when the UK was expected to start and he hoped within a month other wise he was going to turn the guy over to me ! ;D I would not say that this is 'widely used ?'. If more have been done around the world then I apologise in advance for not being aware of them. When he was asked which one he would prefer to see done he answered that he would prefer to go further down the ONSI route first because that can be done now without risk as it is not a brain op. As Professor Goadsby said in his presentation - when dealing with clinical matters it's not the big picture that is important - but the details. Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by Wendy the Brit on Jul 10th, 2003, 6:17pm Thanks MOB, a scholar and a gent as usual I appreciate someone who is trying to make information and understanding clear, not try and score points. Thanks for the clarification and also the civilised way you communicate. I am happy to admit when I have the wrong information and even happier when the right message is communicated. The statement that ONSI is 'widely used' was obviously wrong (I had thought it had been used in USA for some time and unless I am dreaming or in a drug haze have talked to two people who have had the procedure, and one for whom it is planned- this of course does not make 'widely' and I therefore apologise for using this word) I did check before I posted the bit about the initial success rate of the experimental Hypothalamic implant and whilst I stressed that it was not being advocated, the impression I and others got from the stats shown was more favourable than the impression you gained. Again I am more than happy if there is an alternative view, and certainly was careful (I thought!) to stress that all invasive procedures are inherently risky (to counteract the slightly hopeful thought that it was like Knee surgery!) I'm afraid I cannot end this post without saying (and I am SURE you will back me up here MOB as the UK Board Moderator) that I have NEVER posted anything abusive at all, at any time on the OUCH UK board. I have no idea what this so called reputation is where it has come from. I thank Mike very much indeed for making me feel that I can no longer post there if my reputation is this bad. I am sorry for this as being currently in cycle and struggling to hold life together, I don't need or deserve this kind of personal attack, or this feeling that an avenue of support is closed. This is upsetting me too much to carry on with it any more so I shall leave by saying, thanks to MOB and hope everyone is better informed as a result of all this. Wendy the Brit |
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Title: Re: Hypothalamus implant Post by Ueli on Jul 10th, 2003, 7:03pm Wendy, I like girls with a bad reputation ;D Thank you very much for reporting about the UK convention. I do understand that you as medical lay person did mix up one thing or the other. What I don't understand is that the guy who knows more than most about the matter in question does not share his knowledge in a civilized manner. He must be full of vitriol. ::) PFNADs Ueli |
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Title: Re: Hypothalamus implant Post by cathy on Jul 11th, 2003, 2:00am He doesn't share his knowledge in a civilized manner because he probably some boring old british fart with his head so far up his own arse he is better than anyone else, this is EXACTLY why I DO NOT BOTHER with the BRITISH SITE...yes sir no sir three bags full sir....geeezeee the guy is referring to Wendy's post about ORGASMS anyone have a problem with this word, apart from the BRITISH of course!!! (excluding myself and wendy) Wendy if you do not register yourself on this site again I will drive to your house and look after you for the next week as a punishment, I know your having a rough time, arseholes like Mike_P don't turn up too often Wendy so come on mate, ignore it...thought you were tougher than that. Mike_P when and if you remove your head from your arse maybe you could apologise! Cathy |
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Title: Re: Hypothalamus implant Post by jonny on Jul 11th, 2003, 2:23am ORGASMS Fuckin juice flying all over the room ;D Ya baby, flow like a fuckin river, (I love that).....LOL ;D Oh shit im late for work!!! One for the road Orgasmsssssssssss!!! Im gonna have to flog the Mule today after all these ORGASMSSS....LMMFAO ;D .......................................jonny |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 11th, 2003, 4:04am Hi Cathy, I was not aware that you had encountered any problems at OUCH (UK) ? You are of course entitled to your opinion and must have your own reasons for feeling this way. However I do think that you have given (to coin a phrase) the big picture without the details ! Yes there is indeed a misunderstanding between Wendy and Mike and I am sure that neither of them has meant to upset the other and I am sure that they will sort it out in their own time. Wendy's post about Orgasms was indeed removed (by ME) after a complaint was made. Wendy was notified that it had been removed and the matter was then given over to discussion by the Trustees. I personally thought the thread was damn funny but I am one of six and the majority rules. The post was left removed and Wendy was informed of our decision. From your comments above it is obvious that you have looked at the big picture and not at the details (why did we remove this post ?) The post was removed because it offended several people and unlike here in the USA we have a very strict posting policy. Now you may think that it is because we are "Boring Old British Farts !" and just don't like that kind of talk ? Well you would be wrong on both counts. Unlike America the home of free speech the UK democracy does not allow free speech in the true form it can be seen here. We OUCH (UK) the charity and the Trustees are solely responsible for what is put on our message board under law. We can and will be held responsible for any content which offends, is illegal, or results in someone being harmed. Now the Trustees of OUCH (UK) do not have to agree with this but they do have to ABIDE by it or it could result in personal prosecution for us but above all the people that we help would loose the charity. Personally when I look at it this way, posting about Orgasms sort of looses the funny aspect ? So I am sorry if we appear cold and boring but we just try to keep things going in the right direction for all. As for Wendy's reputation in the UK - she does indeed have several ! The more amusing ones are due to comments made over here about certain 'Assets' ;) Yes Wendy has had several posts removed but none were abusive ! Overbearing & loud yes ! ;D Abusive no ! I shall be e-mailing Wendy to talk about this matter further and I hope I can persuade her to come back to us all. Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by cathy on Jul 11th, 2003, 5:06am on 07/11/03 at 04:04:27, MOBster wrote:
Michael firstly I do not think I said I had encountered any problems at the OUCH UK site I merely said I do not post there very much. I don't think there was a misunderstanding between Mike and Wendy I think he posted in a way to deliberatley cause this kind of shit! Just my opinion of course. The prat didn't even have the decency to introduce himself properly before doing this. I am not having a go about the fact that Wendy's post on orgasms was removed I am having a go about the fact that this prat Mike insinuated that Wendy was infamous on the UK site for being rude, to my knowledge like myself wendy rarely posts on the UK site, and I for one am glad she has exported herself to the USA site, but why get personal, what has this got to do with the topic...and just out of curiosity why has he come here and post to her at all if he don't like the way she posts. ??? apart from to competely slam her for making a mistake in her information, this is not now going to help is it, all it has done is turn yet another perfectly good and informative topic into something personal. As for Wendy's reputation on the UK site, I wasn't aware she had one, please explain, she is a kind caring and honest person, who is outspoken, but as you say not abusive, it's a shame I do not share the last attribute. I also would like to clarify I never said the people at Ouch UK were cold or boring I said the British people in general were boring old farts and this I stand by, please do not twist my words. Thankyou Cathy |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 11th, 2003, 7:47am Quote:
Cathy I am afraid that I have to disagree with you there. You're original comments were: Quote:
Quote:
Quote:
Well no one else has mentioned the Orgasm post apart from you Cathy ? sorry for misunderstanding. Quote:
I suppose you had better ask Mike that one ? Quote:
Most people will tell you to watch for emoticons when posting on the internet as sometimes the meaning of a sentence can be altered to fit the posters agenda unless there is something like a WINK or BIG GRIN in place ;D Quote:
I am not twisting your words Cathy - here they are aging to refresh your memory: Quote:
Maybe the distinction between what you were saying about Mike P and the UK site should have been clearer as everyone who has read this in my office also came to the same conclusion ? Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by cathy on Jul 11th, 2003, 8:23am What I meant by that aging comment, was that I don't post on many british message boards....because I do find the british boring old farts, but I don't think I used the word cold, I think you made that bit up... ;D but then as you say and on re-reading several times it could be easily mis-understood, thankyou so much for pointing it out, so that I have the chance to explain to yourself and the people in your office. ::) what I should have written was british sites but as we are well aware people make mistakes. :) After speaking to Wendy this morning I came to the maybe incorrect conclusion that Mike was infact referring to the Orgasm post, see what can happen when you don't read posts properly, but thanks for the explanation anyway, btw I was not the only person to mention it you also mentioned it remember. ::) Okay I will now leave Wendy and Mike alone to sort this out, anyone know where he is..? Have a nice day. Cathy |
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Title: Bye Mike! Post by BobG on Jul 11th, 2003, 1:57pm Just to add my 2 cents more worth, then I'll leave this string...............maybe. Mike P said Quote:
Who the hell is this braggart? What is his education, qualification, knowledge base that allows him to make such a statement? He just comes out of nowhere and runs his mouth. Then he Quote:
is so petty he has to point out that jonny’s name is spelled incorrectly. Hey Mike, is your last name really P? Or is that misspelled? Then he goes on Quote:
I think you’re full of crap Mike. Prove your “numerous message”. Post them here. Quote:
In the USA the women are allowed to think and talk as they please. Personally I like that in a lady. Of course I’m from the wild west, we like our ladies a little on the trashy side. Quote:
? some boring old British fart word cathy says Quote:
ditto And cathy says Quote:
ditto ditto From MOB, talking about the very nasty subject of orgasms having to be removed from the British site Quote:
UK democracy? Can you use the word ‘oxymoron’ on the British internet? From MOB Quote:
I come to the conclusion that your office is staffed with boring old British farts. And finally, from Mike P Quote:
Thank God! |
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Title: Re: Bye Mike! Post by jonny on Jul 11th, 2003, 2:16pm on 07/11/03 at 13:57:41, BobG wrote:
So thats what that "(sic)" means, thanks Bob I dont know about anyone else but seeing that my given name is "Jon" I am not about to put an "H" in it when I type "jonny"...Ever see Jonny Quest?....LOL :D My old man was "Johnny" with an "H" Hey MOB, got any room over on the UK board for me?......LMMFAO ;D........love ya, Bro .............................jonny |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 11th, 2003, 2:40pm Jonny :) I would be in prison in two days if you came over to our board Bro ;D Pretty post Bob but what's your point ?? ??? Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by BobG on Jul 11th, 2003, 2:58pm My point number 1 The British are stuffy old farts Point number 2 Mike P is a know-it-all, rude, mouthy, stuffy old fart. Point number 3 In the UK ......Orgasm? Don’t even think about it! Have an orgasm on a message board = go to jail Point number 4 And I’m sure glad I live in the USA where democracy means just that. Best Wishes BobG |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 11th, 2003, 3:56pm Well at least we have some common ground then ;D I am glad that you live in the USA as well ;) Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by cathy on Jul 11th, 2003, 4:07pm wish I lived in the USA.... :'( |
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Title: Re: Hypothalamus implant Post by BobG on Jul 11th, 2003, 4:12pm Look at it this way cathy.........to us here in the USA, you foreign, European girls have a sort of exotic, experienced allure. modified to cathy with a y |
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Title: Re: Hypothalamus implant Post by jonny on Jul 11th, 2003, 4:14pm on 07/11/03 at 15:56:01, MOBster wrote:
LMAO....sorry Bob, it was funny. MOB, prison aint bad...where else can you get three squares and a room for no money? Man, now I sound like ive been there.....nevermind ;D ..............................jonny |
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Title: Re: Hypothalamus implant Post by cathy on Jul 11th, 2003, 4:15pm Okay okay where is she...CATHIP double gussett twubble making hussy you show yourself!!! lmao ;D uhumm...excuse me Bob but are you talking to me or Cathi ??? Cathy |
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Title: Re: Hypothalamus implant Post by BobG on Jul 11th, 2003, 4:22pm Ooppps ::) Sorry cathy. The y and the i are too close together on my typewriter. My typo has been modified. |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 11th, 2003, 4:23pm You're not talking about dropping the soap again are you Bro ? :o ;D ;D ;D ;D ;D ;D Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by BobG on Jul 11th, 2003, 4:27pm jonny......LOL.......it was funny but let's not encourage him. They'll start with a simple joke but it's not long before they want us to vote for a King. (except in San Francisco, then it's vote for a Queen). ;D |
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Title: Re: Hypothalamus implant Post by BobG on Jul 11th, 2003, 4:28pm MOBster....is that an invite to your house? :o |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 11th, 2003, 4:39pm Bob I am not even going there LOL ;D I hate suprises :o Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by cathy on Jul 11th, 2003, 5:04pm I see you were logged in Mike_P what a shame you didn't have the balls to apologize :-/ Cathy |
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Title: Re: Hypothalamus implant Post by jonny on Jul 11th, 2003, 5:11pm Bob, I love you dude, but I love MOB to so if you guys got a beef im not taking sides. any friend that takes sides with two friends has only one friend. Ding Ding......LOL ;D ......................................jonny |
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Title: Re: Hypothalamus implant Post by Donna on Jul 11th, 2003, 7:20pm Wise words, jonny. Love you MOB.........love you Bob. |
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Title: Re: Hypothalamus implant Post by Marc on Jul 11th, 2003, 8:05pm Now, I've only been here just under 3 years so I'm still a newbie - but I've read a whole lotta posts by Bob G and MOB. The one thing that I know is that they are both good men who have my respect. That makes me quite sure that they can take care of themselves. As with most arguments, there is no reason to take sides - it's OK to disagree. Marc |
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Title: Re: Hypothalamus implant Post by CathiP on Jul 11th, 2003, 11:01pm Awww, sheesh, Cathy, did I miss the party? Hey, we could start a new party- plenty of nice people to invite......and Cath, darlin.......remember, not everyone in this world must like you.....they just have a moral obligation to understand YOU have a right to your opinions as well.... In the infamous words of the oft-incarcerated Rodney King........(in your best whine, please....) Cain't we awwwlll jest git alawnnggg? I, for one, think you and Wendy went above the call of duty to attend the UK convention.....tons of info, lots to take in, and a huge amount of effort on your parts.... can we get a HUZZAH for Wendy & Cath here? To those of you whose knickers are in a knot......build a bridge, get over it.......ANY info on the advancement of the management of CH is nothing but GOOD....right? Sorry I wasn't around earlier to jump into the fray...... The Other Cathi....... ;) |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 12th, 2003, 2:15am Jeeez you guy's you are making me blush :) I love you guy's as well :) As for me and Bob don't worry we were only playing ;D Best Wishes, Michael 8) |
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Title: Re: Hypothalamus implant Post by BobG on Jul 12th, 2003, 2:25am Yeah, what the MOBster said. I'm just cranky and sarcastic. And my thong is chaffing again. Gotta go powder. XXX Bob |
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Title: Re: Hypothalamus implant Post by don on Jul 12th, 2003, 2:31am Dear British people.....a little clarification. This is NOT the OUCH US site. Wendy and anyone else may post what they wish here because the webmaster allows it here. The OUCH US site however is monitered and inappropriate posts are also removed there. Not saying Wendy or anyone elses posts are inappropriate, only that if ANY post is deemed inappropriate by the OUCH US BoD it will be removed from the OUCH site. I missed the whole damn fight. Perfect opportunity to get another entire country mad at me and i blew it. I'm slippling. |
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Title: Re: Hypothalamus implant Post by jonny on Jul 12th, 2003, 12:50pm on 07/12/03 at 02:31:27, don wrote:
Theres always Italy, Don. When you get to Rome find the biggest crowd you can and scream as your tearing up a picture of the pope, that ought to even make the news cast over here.....LMMFYBO ;D .........................jonny |
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Title: Re: Hypothalamus implant Post by don on Jul 12th, 2003, 1:00pm I could always slip in to the catacombs and switch around all the dead monks. Fuck up the whole inventory. |
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Title: Re: Hypothalamus implant Post by oringkid on Jul 12th, 2003, 6:39pm Scathing....Please forgive me those of you residing in the UK... but... dontcha just love how brutally polite the English are when they fight? Sorry... Just had to say it. We Yanks tend to be a bit crude... we never learned the.... frostily scathing and painfully polite ways of civilised (SICFA= Spelling incorrect for America ;D).... debate (fighting). Now, on to it.... I don't see any reason for Mike P's rude remarks... seems to me there may be underlying reasons for his vitriolic comments to and towards Wendy. I also find it arrogant, patronizing and rude that he came to this MB simply (or so it seems) to attack Wendy. I feel that it was uncalled for. Unfortunately, MOB, as Mike P, did not feel it necessary to introduce himself or get to know us before he appeared and proceeded to tear into Wendy's thread and upset her to the point of pulling her membership (which really angers me), I'm afraid that, based on his comportment while here, I cannot just take your word for the fact that he is a "stand up guy". No offense intended towards you, but I think you can see why I and I'm sure others, might feel this way. Wendy, I am terribly sorry that you felt it necessary to leave due to the boorishness of someone who seems to think highly of himself, but gives little regard to the feelings of others. Sherry |
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Title: Re: Hypothalamus implant Post by cathy on Jul 12th, 2003, 6:58pm on 07/12/03 at 18:39:40, oringkid wrote:
Sherry I thought we already agreed to split it! lol ;D Cathy |
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Title: Re: Hypothalamus implant Post by Simon on Jul 12th, 2003, 7:10pm To begin with, I have no intention of introducing myself, but I do love a good transatlantic spat... As for MOB introducing himself Sherry, those who've met him might argue that you wouldn't want that anyway, but they might, with less humour (note spelling), suggest that his contributions here (and elsewhere) do not necessitate it. (He's actually more of a sit-down guy than a stand-up one incidentally.) I really can't be bothered to go through the whole thread again to justify each opposing position, but would just add that, IF Mike P is the person I think he is, I have met him several times, and know that ch has affected him more than most, yet he has shown enormous stoicism. Maybe I'm wrong, but I don't recall anyone asking him how he knew so much - it was more of a leap on the bandwagon assumption that he was obviously lying - perhaps an American trait? :) It could be that the vitriol shown so quickly was a little premature. Anyway I trust my contribution, as a newbie, will be appreciated... Simon |
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Title: Re: Hypothalamus implant Post by catlind on Jul 12th, 2003, 7:20pm Actually Simon, BobG, Ueli and Cathy DID ask him to present his qualifications and source of knowledge. He has yet to do so. Anyone who starts off by telling everyone that they know more than anyone else save 2 people about any subject is going to lose any and all credibility when they fail to present any evidence of said knowledge. Until he decides to actually present some evidence of this so called supreme knowledge he will continue to appear as a pompous arrogant braggart. Cat |
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Title: Re: Hypothalamus implant Post by oringkid on Jul 12th, 2003, 7:23pm Simon, First, I was not speaking of MOB, but rather to him, concerning his post allowing that Mike P was a "stand up guy" I'm afraid that I did not make that clear enough for anyone who had not read the previous posts. Second, I really don't care WHO Mike P is... the way he went about trying to discredit Wendy was rude. Perhaps he is a doctor and is far more informed than any of us... but I still say, what he did was rude and uncalled for. I would ask that you DO read the preceding posts. Perhaps you will then see what I saw.... I have become acquainted with Wendy and like her very much. Perhaps her outspoken manner and honesty are not appreciated as much in the UK... however, here, she fits in very nicely. Therefore, I am understandably upset that someone who gave no introduction and seemingly without cause, came here and proceeded to try to humiliate her and make her feel it necessary to leave. No offense intended toward MOB or you Simon... this is just the way I feel about this situation. Sherry |
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Title: Re: Hypothalamus implant Post by cathy on Jul 12th, 2003, 7:31pm on 07/12/03 at 19:10:00, Simon wrote:
Cathy :) |
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Title: Re: Hypothalamus implant Post by jonny on Jul 12th, 2003, 7:39pm Hey Simon, Shut the fuck up!!! "To begin with" Blah blah blah....what a putz!!! .........................jonny |
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Title: Re: Hypothalamus implant Post by Donna on Jul 12th, 2003, 7:44pm "it was more of a leap on the bandwagon assumption that he was obviously lying - perhaps an American trait?" What is that supposed to mean? |
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Title: Re: Hypothalamus implant Post by Simon on Jul 12th, 2003, 7:45pm Only little old me.... Apologies regarding MOB, Sherry - amazing how one comma can make such a difference! Cultural point: In Britain the statement: To Wendy, as I have more knowledge of the procedure of Occipital Nerve Stimulation for Cluster Headache than probably all but two people in the U.K. I feel I am entitled to give an opinion. This is not “widely used” please get your facts correct. Followed by (next post): Okay so if your sooooo clued up on this then instead of stirring up a whole load of shit, why not be a big boy and just tell us the correct information.. will not elicit a response! Finally, the reason I came here was this from site introduction: Our site can be a tumultuous, fast-moving, contentious world at times, but first and foremost, it is the most caring, compassionate, supportive family of cluster headache sufferers (and their supporters) in the world. Interesting how that tallies with Second, I really don't care WHO Mike P is... . Finally by the way I did not say I hadn't read all the posts.... Simon (Going to bed now) |
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Title: Re: Hypothalamus implant Post by oringkid on Jul 12th, 2003, 7:57pm Donna, it is very much like the British trait to assume that are no Americans that are civilized and intelligent. Yes, that was a jab. And in direct response to the quote in Donna's post. Tit for Tat and all that... Simon, caring and compassion, if it is true, should never be based on WHO someone is, but on their need. Therefore, I see no discrepancy in what I said. Whether you (in the general sense of the word) are a Doctor or a Governor, or a Prime Minister or a poor person who doesn't even know where his next meal is coming from much less have the money for CH meds or surgical procedures... if you need support, you will have it. But that support does not extend to those who have not introduced themselves AND (not or) rudely and needlessly hurt one of our family. I'm sure you can understand that. Sherry |
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Title: Re: Hypothalamus implant Post by jonny on Jul 12th, 2003, 8:01pm And we dont really care who the fuck you are, Simon. Run away to bed so you dont have to deal with the shit you stired up. Fuckin pu-ssy guess what ass-hole, ill be here tommorrow to greet your ass if you have the balls to show. man, I love a bitch that runs....saves me from kicking his ass ;D ..................................jonny |
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Title: Re: Hypothalamus implant Post by Marc on Jul 12th, 2003, 9:42pm Simon, Assuming you are the original "Simon" of old, I'll repeat (paraphrase) what Don said because I agree so strongly. (If you are not, then I wouldn't have bothered to post a reply) This is not an OUCH site, this is a free-form message board for CH sufferers and their supporters. What happens here is dictated by the participants only - not a board of trustees. The owner has seen fit to rarely intercede. No one is forced to participate. As such, inflammatory remarks will be made - it is not going to change based on personal (or "cultural") insults, pleas or innuendos. Accept it as is, or ignore it.....the choice is quite simply yours. Marc |
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Title: Re: Hypothalamus implant Post by Ueli on Jul 12th, 2003, 10:03pm Jonny, STFU ! Simon has done more for clusterhead family than the King from Boston. JMHO. :P -------- Seeing that Wendy has deleted her profile as a result of the rude attacks from Mike_P, I write now what was on my mind when I wrote my first post to this thread: He is a conceited jackass. :( |
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Title: Re: Hypothalamus implant Post by don on Jul 12th, 2003, 10:08pm THE SHIT IS FLYING! I work three blocks from the USS Constitution (Old Iron Sides) Monday morning, I'm boarding! I'm talking about a Rev-o-lu- tion. 3 if by land, 2 if by sea! |
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Title: Re: Hypothalamus implant Post by MOBster on Jul 14th, 2003, 2:38am Perspective - What a crime ! Best Wishes, Michael 8) P.s: Nice to see you back Simon :) |
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Title: Re: Hypothalamus implant Post by jonny on Jul 14th, 2003, 5:08am I know its THE Simon, thats why im busting his balls ;D ...........................jonny |
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Title: Re: Hypothalamus implant Post by hdbngr on Jul 28th, 2003, 4:34pm Everyone: Wendy the Brit is wonderful, caring person and has a fantastic sense of humor. I hope she comes back, as the board will experience a loss without her presence. She has provided support for me and many others, as well as a way to find humor in some of the situations brought about by CH. However, I can also attest that Mike P. is not a "boring old fart with his head up his arse". He is a "stand up" guy, and I hope everyone who visits the board is given time to explain what brings them here. His motives are pure. If rudeness was interpreted on behlf of his remarks, I know it was not intentional. He is not like that. Tempers run high when in cycle and with constant hits. Please don't allow the pain to detract from the benefits different personalities can bring to the board. We each have something to offer, (with the exception of some trolls) and after reading and re-reading the posts above, I don't think anyone meant to be rude, only that we each feel strongly about certain issues. I feel strongly about this as well. I will have the "practice" occipital implant two days from now, and hope that it will offer a cure, and if not a cure, at least an improvement. Whether this is the answer or not, we need to be able to benefit the pros and cons of each without taking it personally. Thanks in advance, Vanasa |
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