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IndianaJohn
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Diamond Clinic Chicago
« on: Jul 20th, 2004, 6:50pm » |
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Has anyone heard ANYTHING positive about this place? My GP keeps trying to send me ther so he doesn't have to deal with my CH's, but I haven't heard anything good about this clinic.
Also has any one found any good neuro's around NE Indiana? OUCH has a referal to a couple in Indianapolis. Should I trust that recommendation?
Lost in Indiana
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Did my brains fall out or is this headache over?
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Prense
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Re: Diamond Clinic Chicago
« Reply #1 on: Jul 20th, 2004, 6:57pm » |
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on Jul 20th, 2004, 6:50pm, IndianaJohn wrote:| OUCH has a referal to a couple in Indianapolis. Should I trust that recommendation? |
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The ones on the OUCH site are mainly put there by us. They typically make that list when a patient liked their services. 
Chris
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| « Last Edit: Jul 20th, 2004, 6:58pm by Prense » |
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Superpain
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Re: Diamond Clinic Chicago
« Reply #2 on: Jul 20th, 2004, 7:22pm » |
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I've heard nothing bad about it...
But Dr. Diamond and his clinic are mentioned in ALOT of CH research articles.
I think it's regarded at being one of the best clinics in the nation.
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Chris
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Superpain
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Re: Diamond Clinic Chicago
« Reply #3 on: Jul 20th, 2004, 7:27pm » |
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Dr. Diamond currently serves as the executive chairman of the National Headache Foundation.
Dr. Merle Diamond and Dr. Frederick Freitag were selected by Castle Connolly and Chicago Magazine as two of the Chicago area's 350 top doctors. The doctors were selected by other physicians and the medical leadership of area hospitals and are identified as highly skilled, exceptional doctors. They are doctors that other doctors would trust to treat a family member. The full article is in the January 2004 edition of Chicago Magazine.
I'm fairly sure you would get good treatment there.
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Chris
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Re: Diamond Clinic Chicago
« Reply #4 on: Jul 20th, 2004, 7:40pm » |
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Aren't you closer to MHNI ??
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don
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Re: Diamond Clinic Chicago
« Reply #5 on: Jul 20th, 2004, 7:57pm » |
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I've heard nothing but negative about them.
They'll suck every nickel you have out of your pockets.
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Superpain
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Re: Diamond Clinic Chicago
« Reply #6 on: Jul 20th, 2004, 8:51pm » |
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OK... Well...  Maybe not...
In all reality any Doc that is willing to be educated by an informed patient is capable of effectively treating cluster's... Between all the info provided here and at the OUCH site, and all of our collective experiences, pretty much every effective treatment combination is, has been, and will be discussed in great detail.
Some of the meds of course should only be prescribed under the right circumstances. ie; verapamil should not be given to someone with low BP... But any Doc worth their salt should be capable of determining the bounds of safety in prescribing meds.
But then again, the world is full of stupid asses... And more than a few of them are doc's.
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Chris
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don
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Re: Diamond Clinic Chicago
« Reply #7 on: Jul 20th, 2004, 9:35pm » |
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The Diamond clinic is well known for peddling their own headache concoction. Some kind of syrup or something.
From what I've heard they will attept to sell it to anyone and everyone but I have yet to have someone tell me it has helped with CH.
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Ueli
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Re: Diamond Clinic Chicago
« Reply #8 on: Jul 20th, 2004, 11:35pm » |
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We still wait to read a post from someone saying:
"I left a lot of money at Diamond, but at least I've got lots of relieve from my clusters."
BTW, the "rare form of treatment that was first used in the 1930s is called intravenous histamine desensitization" in the thread web md is one of the best sellers at Diamond (20 - 30 grand), but here too we have yet to hear from someone it helped.
PFNADs
Ueli 
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Pinkfloyd
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Re: Diamond Clinic Chicago
« Reply #9 on: Jul 21st, 2004, 2:29am » |
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on Jul 20th, 2004, 11:35pm, Ueli wrote:We still wait to read a post from someone saying:
"I left a lot of money at Diamond, but at least I've got lots of relieve from my clusters."
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Ok, but be advised that I am using your words so they aren't confused in translation LOL
I left a lot of money at Diamond, but at least I I've got lots of relieve from my clusters."
on Jul 20th, 2004, 11:35pm, Ueli wrote:
BTW, the "rare form of treatment that was first used in the 1930s is called intravenous histamine desensitization" in the thread web md is one of the best sellers at Diamond (20 - 30 grand), but here too we have yet to hear from someone it helped.
PFNADs
Ueli
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Actually, as the best historian around here Ueli, I'm surprised you don't have them bookmarked.
I've posted several times (here) that I was helped by it.
The histamine treatment was very much in favour for quite some time but has lost much support as newer treatments have come about. However, there is still some support for the theory behind it, in the medical community.
I expect quite a few people here have had some success early on when treating themseves over the counter (usually before they know what they have) by eating loads of anti-histamines.
I used the treatment a total of 4 times. It does require about a 12 day hospital stay and they aren't cheap in the US.
The first time, it broke my cycle in a few days and I was clear for an entire year (thought I was cured LOL)
The 2nd time, it took about a week to break the cycle and I was clear for 6 months.
The third time, it cooled off the cycle to the point where other prevents made it much easier to wait out the "natural" break.
The 4th time didn't work.
Since things were progressing this way, I didn't see any reason to try it again.
While there, each time, I met many people that would go back each year and have their cycles broken. Didn't work for everyone but for a good percentage.
This is not what they suggest for all their cluster patients. Just the ones in the worst shape. Most get put onto the usual prevents and aborts.
The "elixor" they use (which I know the formula) is used more for their chronic "headache" patients and some of their migraine patients if they feel it might help ease some symptoms.
I know they also give it to some cluster people but it's only purpose is in hopes it might help with some of the neck pain/muscle strain, etc. we sometimes experience.
It is not used as a "stand alone" cluster treatment.
Whether you like it or not, they ARE involved in much of past and present cluster research.
They are very anti-narcotic, but don't mind prescribing large numbers of preventive/abortive combinations.
No clinic is going to be right for everyone. They are all pretty expensive. I'd suggest to everyone considering going to any clinic, to research them completely and ask them a LOT of questions on treatment plans, length of stays, cost, staffing et al.
They see a lot of patients each day. You need to be an active participant in your treatment. Some places give you very little say in your treatment plan once you enter. Other's allow more you more involvement.
There are many good clinics out there. You need to find the right fit. Most of them utilize the exact same list of medications and treatments. It's all in the details. Some allow family to stay on site, others want no contact between family and the doctors. If you rely upon your supporter to help with decisions and help decide what is right for you or if you're in such bad shape (from clusters) that you find it difficult to even decipher what the docs are telling you, then one place might be a good fit.
If you're tired of your spouse telling you what to do and you want to work out a plan with your doctor, other places may suit you better.
Eveyone sufferer is different. Every clinic is different. It takes some of us 20 years to find the right fit.
BTW, a couple of doctors mentioned in this thread are pleased as hell that shrooms worked for me and they never have to see me again. (and I'm pleased as hell I never have to see them again also
PF
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don
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Re: Diamond Clinic Chicago
« Reply #10 on: Jul 21st, 2004, 11:15am » |
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THats the first positive response I've heard on the Diamond Clinic.
And where does it come from? Some guy whacked out on shrooms. (Only kiddin Pink)
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Superpain
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Re: Diamond Clinic Chicago
« Reply #11 on: Jul 21st, 2004, 5:47pm » |
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| « Last Edit: Jul 21st, 2004, 5:47pm by Superpain » |
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Chris
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IndianaJohn
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Re: Diamond Clinic Chicago
« Reply #12 on: Jul 22nd, 2004, 5:59pm » |
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Thanxs everyone who replied. Guess it's not going to be my first stop.
Best wishes to all
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Superpain
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Re: Diamond Clinic Chicago
« Reply #13 on: Jul 22nd, 2004, 6:06pm » |
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John, do you have insurance?
Being an informed and strong willed patient is your best defense. No matter where you go, be just as informed (practically speaking) as your doc. Be active in your treatment regimine. Don't buy snake oil. Don't let them put you on something that you know doesn't work. Guide the doc with your knowledge and explain the treatment that YOU want to try. If your way doesn't work, then let them take over...
What meds have you tried?
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Chris
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IndianaJohn
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Re: Diamond Clinic Chicago
« Reply #14 on: Jul 22nd, 2004, 6:14pm » |
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Hi Chris,
Yes I have insurance, but I can't get my damned Imitrex right now cause of their limits. I usually use the sprays, which work well enough for me. I also take 480mg of verapamil daily.
I go to my GP tomorrow and have an idea of what I want to try. New script for Trex with Doctors statement of med necessety so I can get past my insurance and I will probably up my verapamil to 680mg/day. I have one spray left and I'm holding on to it for dear life.
Wish me luck, I think I'll need it.....
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Superpain
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Re: Diamond Clinic Chicago
« Reply #15 on: Jul 22nd, 2004, 7:05pm » |
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I pay for my imitrex out of pocket since I have no insurance, and it's worth it to me. If you split the shots it comes to about $22 per headache, which is a bargain in my book!
Have you tried prednisone?
Get some O2 for sure! Demand a regulator that can go to 15 lpm, with the rebreather mask!
Print out the info here and take it in with you so that you can be fully aware of what you need and what your getting.
Do not leave there without that O2 script!!!!!!!!
I'd try the injections if I were you too.
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Chris
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Superpain
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Re: Diamond Clinic Chicago
« Reply #16 on: Jul 22nd, 2004, 7:10pm » |
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Can someone post that link to the future-drugs pdf for him to print out?
I can't find it, and I've gotta goto work. 
Note that in that pdf, the O2 rate is too low. Everything else is pretty right on. You've gotta be able to goto 15 lpm if necessary!
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Chris
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don
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Re: Diamond Clinic Chicago
« Reply #17 on: Jul 22nd, 2004, 8:08pm » |
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Quote:| I pay for my imitrex out of pocket since I have no insurance |
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Have you contacted the Glaxo Patient Assistance program?
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Kris_in_SJ
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Re: Diamond Clinic Chicago
« Reply #18 on: Jul 22nd, 2004, 8:37pm » |
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Superpain is right, Indiana -
YOU are your best advocate. Look through some of the posts here (under drugs and treatments) for a link to "future-drugs" I think I last saw it 3-4 weeks ago.
It's a great article that I didn't bookmark for some reason. I did, however, print it out, took it to my doc (a GP), and he said ... "This is one of the best, most comprehensive articles I've seen on CH treatment." If I wasn't already at the end of my cycle, he would have gladly followed the suggestions within.
In other words ... if you have a good, sympathetic and willing doc, why drop thousands at a big-name clinic that may or may not help you ?
Best of luck,
Kris
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