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Tom K
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Best Dr. visit...ever
« on: Sep 14th, 2004, 5:55pm » |
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Just got back from the Robbins Headache Clinic. Didn't see Dr. Robbins, he isn't taking new patients. Saw his partner Dr. Gokani. She is awesome! Got a bunch of Zomig NS, Trex Stats and Pred for free. Was in talking with her for about a hour. Started to get the feeling like the Beast was getting pissed and stirring. Told her that I was about to get one, she took me into a different room and gave me a Trigger Point Injection. Had Benecaine(? derivitive of noviacne?...sorry was never good at spelling) and a little Pred. I think it was 1.5 CC total. Got it right in the back of the head! Now, 2 hours later, I think I have a CH. Don't really know. Had a shadow since the injection at about K2. It really hasn't gone over that but I'm going to hit the O2 just to be safe. I would highly recommend anyone in the area to take the time and talk to them. They even said that if I get caught without meds cuz the insurance won't pick them up, to come in and they will give me what I need. Really great place. On a side note, she said she loves CHeads. "You guys are the most well informed. You know the cutting edge meds and treatments and you know what you are talking about. Treating anyone with CH is such a nice experience." Thought that about summed it up. She said there are 4 different stages that they use for treatment, some drugs aren't even cleared for CH, yet like BoTox but they work. They asked me if I had a problem with using drugs that are in final stages of FDA approval or on the way to FDA approval. I said that if you needed to cut off my arm to help me, I would say yes.(don't remember who on here said that but it worked, so thank you!!) Anyhow. The trigger point is supposed to work for 3 to 6 weeks. I will keep you updated and if you want more info, if I didn't cover something you really wanted to know, PM me and I will give you any answers I have. They know they aren't going to cure us but they are really out to help. Not snake oil salepeople at all. And, no I don't work for them! Just trying to help everyone out!!!
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Mr. Happy
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Re: Best Dr. visit...ever
« Reply #1 on: Sep 14th, 2004, 7:44pm » |
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Damnit, Tom, that's one hell of a review. You've led the horses to water.......now it's up to them to decide whether or not to have cheap sex.
You did your job, and you did it well. Aces, man.
About Dr. Gokani............
She wouldn't happen to be a virgin, would she?
RJ
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Superpain
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Re: Best Dr. visit...ever
« Reply #2 on: Sep 14th, 2004, 8:03pm » |
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Lol... I want some of what your smoking today Mr. Happy!
Awesome news Tom!
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Chris
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don
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Re: Best Dr. visit...ever
« Reply #3 on: Sep 15th, 2004, 7:20am » |
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Did insurance cover the visit?
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Tom K
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Re: Best Dr. visit...ever
« Reply #4 on: Sep 15th, 2004, 8:38am » |
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My insurance, Atena PPO, did not cover the visit. You would have to check with yours. They do not accept insurance, so you pay then submit. Luckly, I have a pretax medical savings plan through work, so I can submit my cost through there and get my money back. I would have paid out of pocket anyhow. After 21 years of this I would have paid 1M to be treated and find relief!
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don
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Re: Best Dr. visit...ever
« Reply #5 on: Sep 15th, 2004, 10:11am » |
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Quote:| They do not accept insurance, so you pay then submit. |
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Thats what I figured.
You dont suppose thats why they want you to try all the unproven treatments before they get to the proven ones do you?
$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Quote:| some drugs aren't even cleared for CH, yet like BoTox |
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Have yet to hear that Botox has been effective for a legitimate case of CH.
$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
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| « Last Edit: Sep 15th, 2004, 10:12am by don » |
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plateglass
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Re: Best Dr. visit...ever
« Reply #6 on: Sep 15th, 2004, 10:51am » |
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WOW...I'm glad you are somewhat PF for now but if you don't mind me asking, inj in the back of the HEAD? How did that feel? It don't sound too nice to me but then again if it gets rid of the beast it would be well worth it. Please keep us posted.
Steve
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Wouldn't it be easier if we just cut off your head?
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Tom K
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Re: Best Dr. visit...ever
« Reply #7 on: Sep 15th, 2004, 12:31pm » |
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Ok, to address the last 2 posts.
Don-They started me on Pred and Verap, I opted for the Trigger Point Injection. Sound like 2 very proven ways of treating these from what I have read. They don't go into other areas until they find if you respond to the front line, usual meds. Don't rip it until you go or get all the facts. I think I even posted that I got put on PRed and Verap in the last post, if I didn't then I appologize. Botox is 60% effective in CH, it is 0.5mg injections that lasts 4 to 6 months. 60% is about what O2 helps IIRC.
Steve-I was a little shaky to get the shot in the head. But I'm to the point of trying anything (tinfoil anyone, LOL). The shot wasn't bad, it burned for a second then got cold. So far, I've had 2 CH. Should have had 6 by now. The 2 I've had were not as bad as they have been, about a K5 maybe. The Trigger Point is supposed to last 3 to 6 weeks and is 75% effective. I didn't really care, I just want relief.
I know I'm not chronic, but I still hate to deal with these once a year. I am pretty sold on what they are doing at Robbins HC. Don't know if he actually spoke at a CH Con but from the papers he has published, his books and his research, I would really listen to what they have to say.
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don
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Re: Best Dr. visit...ever
« Reply #8 on: Sep 15th, 2004, 12:37pm » |
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Quote:| Don't rip it until you go or get all the facts. |
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If you had posted all the facts and kept them on one board it would be a little easiesr to figure it out.
Quote:| Botox is 60% effective in CH, |
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As ascertained by who? I'd like to see that statistic and its author.
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| « Last Edit: Sep 15th, 2004, 12:39pm by don » |
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Tom K
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Re: Best Dr. visit...ever
« Reply #9 on: Sep 15th, 2004, 12:38pm » |
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Sorry Don! Didn't mean to cross post.  That, and I'm a complete  when on the Pred. Didn't realize that I didn't put the frontlines on the post. Was kinda all giddy as a school girl that I got help and relief.
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| « Last Edit: Sep 15th, 2004, 12:51pm by Tom K » |
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Pinkfloyd
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Re: Best Dr. visit...ever
« Reply #10 on: Sep 15th, 2004, 2:41pm » |
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on Sep 15th, 2004, 10:11am, don wrote:
Have yet to hear that Botox has been effective for a legitimate case of CH.
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You really should read more if you want to keep up with whats new in the cluster treatment area Don.
on Sep 15th, 2004, 10:11am, don wrote:
You dont suppose thats why they want you to try all the unproven treatments before they get to the proven ones do you?
$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
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You guys crack me up.
No one likes 90% of the docs that treat clusters because they don't know enough about them or specialize in them. So if someone has a doc that is less than up to date according to people here, they are told to dump the chump and find someone that specializes in them.
For the other 10%, no one likes them either because why? the actually charge money?
I guess we all need someone that is REALLY rich to decide to become a cluster specialist and donate his life to that cause, offer free treatments and offer the latest in everything....
Oh, wait, some of that "latest" isn't proven yet to everyone's satisfaction. Better use the old reliables....but wait...isn't that what they 90% are offering, which isn't enough?
What's guy to do?
Don, buddy, Dr. Robbins is one of the foremost experts on treating cluster headaches and is doing his best to try and find NEW treatments since what is available isn't adequate in his judgement.
He knows as much if not more about clusters and their treatment than any doctor that you met in Rome that left you speechless. He is a member of OUCH (is that why you question his credentials or charges?) He spends a great deal of time providing people with FREE advice and access to as much information as he can to educate cluster headache sufferers. His clinic is small compared to what he could do if he was out for a buck.
Some people are hard to please, others are just plain impossible.
PF
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don
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Re: Best Dr. visit...ever
« Reply #11 on: Sep 15th, 2004, 3:33pm » |
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Quote:| He knows as much if not more about clusters and their treatment than any doctor that you met in Rome that left you speechless. |
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Hey Pink. Quit being an a*sshole. No one left me speechless.
After 26 years of this, 20 of them being misdisanosed and presented with every bullshit remedy on earth, I'm qualified to be skeptical.
Quote:| (is that why you question his credentials or charges?) |
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Dont recall questioning his credentials. What I challeneged was the Botox statement and I still want to know why they wont accept insurance? No cold cash, no treatment?
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| « Last Edit: Sep 15th, 2004, 3:33pm by don » |
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karma
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Re: Best Dr. visit...ever
« Reply #12 on: Sep 15th, 2004, 4:17pm » |
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In my humble opinion,
If more medical institutions and hopsitals told insurance companies to shove it they would not be the all powerful deciding factor in medical treatments.
Then get rid of all the b.s. lawsuits and the "I'll sue your a-ss if you look at me funny mentality" and medical treatment may become affordable.
So whats the deal with Botox anyway? This is a first for me.
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Pinkfloyd
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Re: Best Dr. visit...ever
« Reply #13 on: Sep 15th, 2004, 6:20pm » |
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on Sep 15th, 2004, 3:33pm, don wrote:
Hey Pink. Quit being an a*sshole. No one left me speechless.
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Just trying to elevate my standing in some of the circles around here. 
As far as being speechless, I don't think you want to go there and I know I certainly don't want to expand the discussion. I can promise you it would do no one any good.
I'm actually sorry I went there to begin with.
For those interested in finding out about the botox work being done, you can find some information on Dr. Robbins' site.
I personally don't subscribe to it but I have other means of dealing with clusters. Others may be interested.
It isn't cheap and it isn't covered by insurance as far as i know.
The problems with clusters (one of them) is that new things must be tried to find a better treatment for people. Insurance companies don't pay for experimental treatments. EVERY new treatment begins as an experimental treatment. Who's going to pay for it? Gout sufferers?
PF
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"Nothing is so firmly believed as what we least know."
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[Michel de Montaigne
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www.obscuredview.blogspot.com
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Tom K
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Re: Best Dr. visit...ever
« Reply #14 on: Sep 15th, 2004, 7:52pm » |
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I have to agree with PF. I was expecting a big flashy office with lots of glass and stainless steel and a big buck operation. Very, very far from it. It is in a 1 story medical facility. The waiting room and front are so plain, they make vanilla look exciting (cheap Chef plug). $260 was for the initial appointment, $40 for the Trigger Point Injection. Didn't think that was all that bad, considering follow ups are $90 or $95, I forget which. Taking me from the 7 I should have had by now, it is 6:30PM here, to 2 at K4 and 1 at K2, maybe...priceless. If they told me that cutting off my left nut would help, I'd get the scalpel and iodine. That's how much I hate these. I know everyone does and everyone is gun shy. I was, too. I went for 7 years being told, it's sinus, it's stress, it's allergerys. One doc even told me to take 2 Tylenol and call him, no shit! CH is what Robbins does. They only, ONLY see CH, migrainers and CDH, people. No one else. That's it! If you are in pain and meds aren't working, you go in. The waiters will wait longer because they take you the minute you walk in the door...no sitting down in the wait room even. Saw it with my own eyes, yesterday. There was some guy who walked in with looked like a K8, the receptionist looked at him and in the back he went. I can't think of any better service than that. They don't take insurance, big deal. They don't have a problem with you submitting the bill to your insurance, they just don't do it. Is that REALLY that big of a deal? I already know my insurance doesn't cover them, so I'm submitting to my Pre-tax Medical Savings Plan through work. I think the biggest thing of all of this, not the meds, not the cutting edge treatment, not even the cash and insurance thing was the fact that they listened. For a full hour. This is the first doctor out of the 15-20 that I have been to that actually winced when I told her about the major head trauma I had when I was a kid. Out and out winced. That meant, to me that she was actually listening to what I was saying. Not writing in a chart, not just looking at me with the "You're wasting my time" or "I don't believe you" look. We all know those and have seen them countless times. They listened. They went over what worked for me in the past and what I'm on now. If it was all about the money, would I have walked out of there with 4 Zomig NS, 10 Trex Stat doses, an new Trex Injector so I can have one in the car and one at home, and my whole Pred course for free? If I didn't have insurance, that would have cost me over $500. I know, Don, they get it for free, but they don't have to give it away, either. I feel like I'm being accused of being a Snake Oil Salesman. Sheesh, these people are here to help us. Help cost money. Ask someone who is trapped on a mountain because their ass got stuck because they screwed up. Know what? They get charged for the whole thing, chopper, people, dogs, rescue equipment. There is nothing that is free, sad but true. If you want help, like I did, you will pay for it, like I did. I would have paid $1000, I would have paid $10,000. I don't know where I would have gotten the money, but you bet your ass I would have paid it. I wanted relief, they gave it to me. It is hard to tell, Don. Are you offened? Upset? Put out? For a post titled, Best Dr Visit...Ever. You seem pretty set out to upset the apple cart. I'm trying to give back to the people who have supported me, granted on and off, since April of 2002. That's the day I joined. I haven't been on when not in cycle. That is my fault, I don't know, I guess I try to forget them nd here because somehow I feel like if I post, I'm gonna jinx myself. Stupid but true. Don't write off my experience at Robbins because of my low post count and not being here all the time. I've been through all the crap that everyone else has, no more, no less. I never once said, "If you eat garlic, and high fiber you will be cured", I only tried to help the people who are in the are who have never heard of this place. I never heard of it until last week when I was up at 2:30AM after having a Battle Royal with the Beast. Now I feel like I have to defend my actions. Tell you what, Don. If you don't want to go, then don't go. I feel like I've posted this before. Probably should back away from the puter before my Pred assness really kicks in.
T
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don
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Re: Best Dr. visit...ever
« Reply #15 on: Sep 15th, 2004, 10:00pm » |
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Quote:| As far as being speechless, I don't think you want to go there |
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Mind explaining why I wouldn't want to go there because number 1.. I have no idea what the fuck your talking about and number 2...I have the balls to go anywhere with anyone.
Quote:| I feel like I'm being accused of being a Snake Oil Salesman. |
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Get over yourself. My skepticism is pointed at the clinic not you. If you, or anybody can prove me wrong about any treatment that I think may be ineffective or a jusdt a money making deal, then I will be mopre thasn happy to say I was wrong and be glad I was. You didn't present ANY of the details originally that you just posted above. My skepticism was based solely on the very few facts you originally presented.
If I at any time suspect that any ch sufferer might be being duped I will state it without hesitation wether I hurt your feelings or not.
Your last post has gone a long way in dispelling my skepticism but it was because of the skepticism that you fully explained the treatment.
Quote:| Don't rip it until you go or get all the facts. |
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If you had given all the facts I wouldn't have (as you put it ) ripped it.
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| « Last Edit: Sep 15th, 2004, 10:16pm by don » |
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Pinkfloyd
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Re: Best Dr. visit...ever
« Reply #16 on: Sep 16th, 2004, 1:37am » |
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on Sep 15th, 2004, 10:00pm, don wrote:
2...I have the balls to go anywhere with anyone.
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Even if, as i said, there'd be nothing gained by it? Seems a lot of people here like the battles just for the sake of the blood it produces.
on Sep 15th, 2004, 10:00pm, don wrote:
If you had given all the facts I wouldn't have (as you put it ) ripped it. |
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So you rip anything you don't understand or know all the facts about, just out of principle? I suppose thats safer than accepting everything at face value but, guilty until proven innocent in all cases is a very pessimistic way to live IMHO. But, to each his own.
PF
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don
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Re: Best Dr. visit...ever
« Reply #17 on: Sep 16th, 2004, 7:26am » |
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Quote:| Even if, as i said, there'd be nothing gained by it? Seems a lot of people here like the battles just for the sake of the blood it produces. |
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You made a brainless statement. I only responded.
Quote:| So you rip anything you don't understand or know all the facts about, just out of principle? |
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Another brainless statement. "Ripped it" were Tom's words, not mine.
Quote:| guilty until proven innocent in all cases is a very pessimistic |
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Not when it comes to medical treatment and I dont have "humble opinions".
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Tom K
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Re: Best Dr. visit...ever
« Reply #18 on: Sep 16th, 2004, 10:32am » |
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on Sep 15th, 2004, 10:00pm, don wrote:
Mind explaining why I wouldn't want to go there because number 1.. I have no idea what the fuck your talking about and number 2...I have the balls to go anywhere with anyone.
Get over yourself. My skepticism is pointed at the clinic not you. If you, or anybody can prove me wrong about any treatment that I think may be ineffective or a jusdt a money making deal, then I will be mopre thasn happy to say I was wrong and be glad I was. You didn't present ANY of the details originally that you just posted above. My skepticism was based solely on the very few facts you originally presented.
If I at any time suspect that any ch sufferer might be being duped I will state it without hesitation wether I hurt your feelings or not.
Your last post has gone a long way in dispelling my skepticism but it was because of the skepticism that you fully explained the treatment.
If you had given all the facts I wouldn't have (as you put it ) ripped it. |
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Get over myself? I didn't know I was the one with the problem.
Any treatment YOU think is ineffective? Wow, when did the Don Headache Clinic open up? I didn't know you were the end all be all of CH meds, treatments and preventitives. Don't want to start a flame war here but talk about getting over yourself. Yes, you are correct, I didn't post all the info in the begining. That has been corrected. Is it to your satisfaction? Should I have Robbins call you to go over their plans for future treatments? For someone who claims to be not bagging, ripping, whatever you sure do seem to want to wallow in a lil pity party. Here is a creative idea, think outside the box. If people didn't we'd still be driving around on a wheel and not being able to post messages on this thing called the internet.
Additionally, I appologized about cross posting and not giving all the info a few posts up, check it out.
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| « Last Edit: Sep 16th, 2004, 10:34am by Tom K » |
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don
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Re: Best Dr. visit...ever
« Reply #19 on: Sep 16th, 2004, 12:35pm » |
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Quote:| Wow, when did the Don Headache Clinic open up? |
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About 27 years ago.
Quote:| Don't want to start a flame war here |
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Then STFU!
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Tom K
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Re: Best Dr. visit...ever
« Reply #20 on: Sep 16th, 2004, 12:55pm » |
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I was getting all pissed off by your comments and was going to post something to retaliate, but then I realized that I don't need to show your ignorance, you did a great job of that for me. Thank you!
T
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vig
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Re: Best Dr. visit...ever
« Reply #21 on: Sep 16th, 2004, 2:33pm » |
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anyway, I've been to both Robbins and Diamond and while I think both are knowledgeable, Robbins has maintained his integrity and sincerity while Diamond got lost in the money shuffle.
just my two cents....
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don
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Re: Best Dr. visit...ever
« Reply #22 on: Sep 16th, 2004, 3:28pm » |
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Your welcome
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