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Topic: It's your Doctors job to KNOW! (Read 3817 times) |
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purpleydog
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Re: It's your Doctors job to KNOW!
« Reply #25 on: May 3rd, 2008, 3:21pm » |
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on May 3rd, 2008, 2:19pm, Pinkfloyd wrote:
I had no problem with the message being conveyed to the original poster, just the attitude and tone in which it was being conveyed in some instances.
Ask yourself how many people with clusters, actually know much about them when they are first diagnosed? How many still no very little about how to treat them, even 5 years into their diagnosis? Many people here didn't get 02 for YEARS after being diagnosed? Out of the million or so cluster sufferers in the US, how many know as much about them as you do? What percentage don't have access to or know how to use the internet? How many sufferers are actually capable of teaching their doctors about clusters and how to properly treat them?
How many people here DID go from doctor to doctor before they found one that knew enough about clusters to be able to adequately treat them.
Most of us spent years bouncing around from doctor to doctor, including ones in the wrong profession (eye doctors, dentists etc) before we even knew what we had. My dentist was a great guy...very compassionate and willing to learn.
We need to remember that there are millions of cluster sufferers out there that don't visit this disfunctional family known as ch.com. For them especially, we do need to teach the medical profession. It'll save all of them many years of pain and suffering. Our best hope of that is with org.s like OUCH.
Bobw |
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This is a great post, Bob. There are several of us who have been here for years, and we learn as much as we can about our conditions, especially the chronics (not that the episodics aren't learning too). But, looking at the questions posted on the meds board, and the CH specific board, by newbies, they have lot's of questions, and I'm not sure if they would feel confident enough to take info in, or even what info to take to their doc, to start working with them. I get the idea that most go by what the doc tells them the first time they visit. Then they wait till the next visit to start to change things, maybe.
JJslugdog was right, take in some info from accredited sources that docs read regularly. You also have to look at it from the doc's point of view. How many would be surprised to have a new patient walk in with a folder of articles and info on how to treat CH? How many would be offended? (God complex). How many would be relieved that you saved them hours of research? (Annette's post). And how many would take the time to actually go over it while you are there, and start to work up a plan WITH you?
Anyway, Bob is right... the ultimate point to doing this, is to help the CH'ers that are out there who don't know about us, or OUCH, and need help. We need to educate our docs, so they can help others too, not just us.
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Bob_Johnson
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Re: It's your Doctors job to KNOW!
« Reply #26 on: May 3rd, 2008, 3:52pm » |
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Let's recall our collective history AND take pleasure in the positive changes.
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Headache. 2000 Oct;40(9):730-5.
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.
Klapper JA, Klapper A, Voss T.
Colorado Neurology and Headache Center, Denver 80218, USA.
OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.
PMID: 11091291
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Acta Neurol Scand. 2004 Mar;109(3):175-9.
Diagnostic delays and mis-management in cluster headache.
Bahra A, Goadsby PJ.
Headache Group, Institute of Neurology, Queen Square, London, UK. peterg@ion.ucl.ac.uk
OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH). The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering.
Publication Types:
Research Support, Non-U.S. Gov't
PMID: 14763953 [PubMed]
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Bob Johnson
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purpleydog
CH.com Alumnus
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Re: It's your Doctors job to KNOW!
« Reply #27 on: May 3rd, 2008, 4:14pm » |
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on May 3rd, 2008, 3:52pm, Bob_Johnson wrote:Let's recall our collective history AND take pleasure in the positive changes.
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__________________________
Acta Neurol Scand. 2004 Mar;109(3):175-9.
Diagnostic delays and mis-management in cluster headache.
Bahra A, Goadsby PJ.
Headache Group, Institute of Neurology, Queen Square, London, UK. peterg@ion.ucl.ac.uk
OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH).
The mean time to diagnosis has dropped from 22 years in the 1960s  to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering.
Publication Types:
Research Support, Non-U.S. Gov't
PMID: 14763953 [PubMed]
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Wow! An Average of 22 years to diagnosis? I don't know how people dealt with that.
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Jonny
CH.com Alumnus
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Re: It's your Doctors job to KNOW!
« Reply #28 on: May 3rd, 2008, 4:48pm » |
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on May 3rd, 2008, 4:14pm, purpleydog wrote:| Wow! An Average of 22 years to diagnosis? I don't know how people dealt with that. |
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Took me 23 years, how I dealt with it is how I deal with CH!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Pinkfloyd
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Re: It's your Doctors job to KNOW!
« Reply #29 on: May 3rd, 2008, 7:22pm » |
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on May 3rd, 2008, 3:52pm, Bob_Johnson wrote:Let's recall our collective history AND take pleasure in the positive changes.
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You're right BobJ. I think the internet has made a huge difference in this and I think OUCH especially should be proud to have been a part in this change.
on May 3rd, 2008, 3:52pm, Bob_Johnson wrote:| The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. |
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The bold portion above is what strikes me.
People now are much more likely to dump their doc if they aren't getting results. It used to take 22 years before people checked with 3 different docs and finding one that knew about clusters. Now it still takes three but they find that one that knows about them much sooner.
It used to be that people (commonly called the Greatest generation) like my parents would stick with their doctors for life and not question them at all. I guess it was considered disrespectful.
My Mother (God rest her soul) refused to leave her doctor even though she knew she wasn't getting the best treatment for her cancer, only because she was afraid he'd be mad at her and think that she didn't trust him and respect him completely. She cared more about his feelings than her own health. We had to drag her "kicking and screaming" to a specialist that finally properly diagnosed her. In this case, waiting for a nice doctor to learn about a condition, cost her years off her life. 
Bobw
Tough subject for me, especially around Mother's Day.
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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deltadarlin
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: It's your Doctors job to KNOW!
« Reply #30 on: May 4th, 2008, 10:47am » |
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I guess we were just lucky. Jimbo had his first headache in April, 1981 (while we were out of town, at my daddy's house no less). When we got back home, he went to our ENT. Dr. Warrewn Stassi (God rest his soul) and was diagnosed within a few weeks. Dr. Stassi had no prior knowledge of clusters, but he knew that Jimbo's headaches were not something he had seen before. Within a few weeks, and Dr. Stassi making phone calls to Tulane MEdical School and Oschner's clinic, we had a diagnosis and a treatment plan. He was a phenomenal physician (and I can honestly say, I've yet to meet another physician of his caliber) and we really felt his loss when he had a stroke and could no longer practice.
Then we were lucky enough to find Dr. Kenneth Moore at the teaching hospital in Jackson MS and used him for several years. Then he moved to Chicago.
Jimbo did see several neuros (coulnd't educate them for sh!t) and a headache specialist who's only claim to fame is the sign on her door.
He now sees a GP who will listen and follow his lead for treatment.
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