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mot

04-25-2009, 03:14 PM

Re: Medical advice/diagnosis on the internet.

You know when I first started visiting this site certain posts lead me to believe I had a whole range of scary stuff. There seemed to be a certain number of individuals who delighted in serving up the bad news in post after post, link after link, positioning themselves as de facto experts. That is the trouble with internet medical advice. The poster, often, if ever,is an expert, and therefore not responsible for harmful or inaccurate advice-or is he?
A lot of courts in this country are challenging this idea.

Sometimes your doctor has trouble coming up with a diagnosis. let alone a group of housewives/husbands/children with no medical training and lots of time on their hands. Speaking just for me, I would hesitate to take any advice from cyberspace too seriously no matter how skillful some person's google abilities are. After all a lot of so called medical posts are open to interpretation. It is there that the trouble begins. Remember the old adage: "A little knowledge is a dangerous thing."

After all, if you are negatively impacted by their what they say, who are you going to call? Your congressman:D?

M

spots

04-25-2009, 04:11 PM

Mot,
I'm terribly sorry if I offended you or anyone else in Rooster's thread. It's just starting to feel like you're beating a dead horse. I really, really don't want to offend you, but I don't think you're looking at this forum in a way that is beneficial to you or anyone else. I agree with you whole heartedly that this is not the place to come for actual medical advice, that is something you should only be looking to your own doctors for. If there are people who are using information found here to care for themselves or going and offending and alienating their doctors,then they aren't very bright, but I don't see how sharing information found and experiences here is a dangerous thing as long as you are under the care of competent medical professionals. I very definitely do not believe in walking into a doctors office and telling them how to do their job, but it can't hurt to walk in with some ideas and information that you think may be pertinent to your care. Sort through it with your doctor, take what pertains to you and ignore what does not, any good doctor will be able to help you with this. I don't see how any of it could be dangerous as long as you have that undeniably, crucial, competent medical professional on your side.

I'm trying to understand your point of view and I am in no way being critical. I appreciate the healthy debate and do think we should all look at things from every angle. I hope I have not offended as I think we all have enough problems without adding hard feelings to the mix. So I hope you take this in the spirit it is intended. I just want us all to get the most out of our experiences visiting this forum.

By the way, how are you feeling these days? Have you considered trying the doxy? I thought of you right away when I started but wanted to wait a while to see how it was working. It might be a good thing to try as it is a relatively easy drug to take, especially compared to some of the myriad of drugs I took while being mistakenly treated for migraines. I just have to take it with food, no dairy product within 2 hours of taking or I get mild nausea, I also wear stronger sunscreen when in the sun. Other than that I haven't experienced any bad side effects. It still seems to be helping, I had a string of 3 days recently that were a little bad, but that was related to insomnia I think. If I don't get a good nights sleep I have a bad days.

Anyway, hope you are hanging in there.

Take care,
Lisa

Leaky Lurker

04-25-2009, 05:17 PM

New here. Till today I have debated about posting, so I guess I'll give it a whirl.

Just my opinion regarding advice and what is constituted as "medical advice"; which seems to be loosely thrown around this board and inferred to as what's being offered.

Wikipedia Medical Advice (http://en.wikipedia.org/wiki/Medical_advice)
Medical advice is the giving of a formal professional opinion regarding what a specific individual should or should not do to restore or preserve health. Typically, medical advice involves giving a diagnosis, prescribing a treatment for medical condition.

Medical advice is given in the context of a doctor-patient relationship. A licensed healthcare professional can be held legally liable for the advice he or she gives to a patient. Giving bad advice may be considered medical malpractice under specified circumstances.

Medical advice can be distinguished from medical information, which is the relation of facts. Discussing facts and information is considered a fundamental free speech right and is not considered medical advice. Medical advice can also be distinguished from personal advice, even if the advice concerns medical care.

BrainTalk's Terms of Service (http://brain.hastypastry.net/forums/faq.php?faq=btc_policy#faq_tos) clearly say:

These forums are NOT designed to be places where you can get unlimited medical advice. Rather, the forums are primarily intended to foster discussions between interested patients, caregivers, and physicians. These are OPEN FORUMS. That is, anyone can participate, and we want to provide a place where people can discuss medical issues freely. If you wish to remain ANONYMOUS, please do NOT enter your real name when registering. Also please remember that all posts here are viewable by anyone on the Internet, and posts may be indexed by global Internet search engines (e.g., Google).

Further down in TOS they state this:
This is a place to come and seek help, or to come and give help. It is not meant to be a battleground or a free-for-all debating society. Kindness and helping should be our watchwords. Our good manners, decency, and civility are welcome and NEEDED here more than anything else.

Sounds to me like the root of this is in disagreeing with the stated purpose and intent of BrainTalk. Perhaps that's the place to take up the issue and not on the board?

forevan

04-25-2009, 05:19 PM

It's just starting to feel like you're beating a dead horse. I really, really don't want to offend you, but I don't think you're looking at this forum in a way that is beneficial to you or anyone else. I agree with you whole heartedly that this is not the place to come for actual medical advice, that is something you should only be looking to your own doctors for. If there are people who are using information found here to care for themselves or going and offending and alienating their doctors,then they aren't very bright, but I don't see how sharing information found and experiences here is a dangerous thing as long as you are under the care of competent medical professionals. I very definitely do not believe in walking into a doctors office and telling them how to do their job, but it can't hurt to walk in with some ideas and information that you think may be pertinent to your care. Sort through it with your doctor, take what pertains to you and ignore what does not, any good doctor will be able to help you with this. I don't see how any of it could be dangerous as long as you have that undeniably, crucial, competent medical professional on your side.

I'm trying to understand your point of view and I am in no way being critical. I appreciate the healthy debate and do think we should all look at things from every angle. I hope I have not offended as I think we all have enough problems without adding hard feelings to the mix. So I hope you take this in the spirit it is intended. I just want us all to get the most out of our experiences visiting this forum.

I have to agree wholeheartedly 100% with what Spots has posted to you. Again, this is only offered as constructive criticism and with all due respect but I think you may want to take a step back and take a look at how you view this forum and even some of it's members and their posts because it seems as if at times you have a very skewed perception of what the intention or purpose is. I believe to most of us it is VERY clear this is NOT a doctor moderated forum, no one is claiming to be dural leak medical experts (although we may share medical information) nor are suggesting you take what they post as such, and it does not seem to me that there have been a "certain number of individuals who delighted in serving up the bad news in post after post, link after link. This forum is just a sharing of learned experiences and/or information that "might" be helpful whether they are leakers themselves or a caregiver of a leaker who has learned what they can of the issue. Take the info or leave it but please don't try and moderate this board as to what YOU want or most relevant in this case, don't want to see/read. I feel you also seem to have a beef with one poster in particular, and it's my opinion that you have been downright mean at times to this poster which is not supportive to say the least. This seems to be completely obvious not only to the members of this board as many have spoken out on this topic more than once (and truthfully it's becoming tiresome) but it seems of late, the board moderator feels this way too since I have noticed many of your posts (and not any others unless I have missed it) have been deleted and deemed to be not contributing to the thread (or in other words unhelpful). Just my 2 cents too, FWIW.

I also hope you are hanging in there and still feeling relatively good.

Holly

mot

04-25-2009, 05:43 PM

Hi Lisa.

Thanks for the reply.
I am doing well thank you. Very few head pains and able to think clearly,finally.
I did discuss the doxy with my doc but he thought for my mild symptoms it may not be what I need now.

There is no harm in sharing information. I have found that talking to other leakers about their experiences to be very beneficial. After all, I don't care what anyone says you really don't know how it feels, physically and emotionally, unless you are a leaker. I do take exception to people, usually non leakers, who take a simple post from someone clearly anxious about their symptoms, and suggest maladies as diverse as thrush and autonomic disfunction as if they knew what they were talking about.
My interest is in suggesting the more conservative approaches to this problem first and helping to assuage the fears rather than fan the flames of anxiety.
(Mokri says 75% heal on their own eventually and he is the pioneer in the field). A good many who first come here may not even have leaks. I am dismayed when I see a group of individuals who are not leakers cheerleading for increasingly more risky and in some cases experimental (in regards to headache) procedures to newcomers who may or may not be leakers. There is even a person who brands all neurologists as "useless", I guess because they don't do surgery.
You say maybe the gullible ones here "aren't very bright", and this may be so. All the more reason to ask for some restraint from the "experts" here regarding their theories and provocative posts. As I said above, people should bear the responsibility for things they suggest even if they choose to hide behind a disclaimer. Perhaps I am taking this all too seriously, but then again I actually know, first hand, what its like to have SIH.

M

sadlisa

04-25-2009, 05:54 PM

Mot,

I agree we must be careful, but I do think most of us on this forum would discuss things we read with our doctors. Any doctor that would do a treatment just because a patient asks and not based on what he/she thinks is not one I would want to consult. The internet has a lot of useful information and new findings are happening everyday. How could our doctors keep up with it all? A little knowledge is dangerous. This is why I consult my doctor. I know he/she knows more than I. If he/she learns more by working with me all the better for both of us.

An example of this is when I asked my HNS if he thought a intrathecal fluorescein study would be something we could try with me. At the time he didn't think so. Six months later after a sabbatical in Italy and learning new procedures, he thought this very study would be what we should try. He could not get approval for this study with my HMO because the FDA has not approved fluorescein for intrathecal use. I then sent him a topical fluorescein study that was similar. He will try this next month.

Thia

mot

04-25-2009, 06:21 PM

Concerned Gal

04-25-2009, 07:25 PM

Rooster427

04-25-2009, 07:49 PM

Haha, wow I caused quite a stir! Im not freaking out about anything that was said. I just wanted to see if other people had this problem as i have great teeth and mouth and would like to keep them that way(never had a cavity, knock on wood). If it is thrush thats straight, my dentist said it is a common fungal infection. I mean the HA is my main concern, if i can make it through 6 months of a spinal leak a little thrush is so insignificant. Thanks again for the responses!!

mot

04-25-2009, 08:32 PM

sigh...again.

Thank you Lisa and Holly for perfectly worded posts. You have summed it up beautifully.

In the past there have been some strong opinions on people posting links and articles that unintentionally scare and depress the recipient. To tell you the truth these constant critical and negative posts complaining about other posters and the fact they are trying to help others are scaring and depressing me. So let's just keep it on topic here please.

No one is trying to convince and persuade anyone into replacing the care of their drs with information from this site. No one is saying they are a medical expert. Let's just leave it at that and get back to supporting everyone and stop trying to get a rise out of each other for no purpose other than the obvious entertainment of a misguided few.

Sorry CG. All the while I had a HA I was scared and depressed too from those posts.
I think I'm starting to develop an understanding of what is going on here.
I think you suggested I might get checked for ulcerative colitis at some point when I had a minor stomach complaint. Thanks for sharing, but I am on topic = Internet Medical Advice.
M:)

Mike Weins

04-25-2009, 11:03 PM

Concerned Gal

04-26-2009, 03:59 AM

I think I'm starting to develop an understanding of what is going on here.
I think you suggested I might get checked for ulcerative colitis at some point when I had a minor stomach complaint.
M:)

:eek:

I am frankly surprised that my suggestion of looking into getting your bowels checked if symptoms persist in response to your thread(s) about having nausea and bowel problems was inappropriate. I thought having both a diagnosed leak and Ulcerative Colitis would have provided me with enough personal experience to make that casual suggestion to you to get it checked out by a Dr in response to your request for information. However, if that has offended you I apologise and I can say it won't be happening again.

And thank you Mike for your information about putting posters on an ignore list. I did not realise this was possible.

Robbysmom5

04-26-2009, 06:34 AM

Thank you very much for this post.

New here. Till today I have debated about posting, so I guess I'll give it a whirl.

Just my opinion regarding advice and what is constituted as "medical advice"; which seems to be loosely thrown around this board and inferred to as what's being offered.

Wikipedia Medical Advice (http://en.wikipedia.org/wiki/Medical_advice)
Medical advice is the giving of a formal professional opinion regarding what a specific individual should or should not do to restore or preserve health. Typically, medical advice involves giving a diagnosis, prescribing a treatment for medical condition.

Medical advice is given in the context of a doctor-patient relationship. A licensed healthcare professional can be held legally liable for the advice he or she gives to a patient. Giving bad advice may be considered medical malpractice under specified circumstances.

Medical advice can be distinguished from medical information, which is the relation of facts. Discussing facts and information is considered a fundamental free speech right and is not considered medical advice. Medical advice can also be distinguished from personal advice, even if the advice concerns medical care.

BrainTalk's Terms of Service (http://brain.hastypastry.net/forums/faq.php?faq=btc_policy#faq_tos) clearly say:

These forums are NOT designed to be places where you can get unlimited medical advice. Rather, the forums are primarily intended to foster discussions between interested patients, caregivers, and physicians. These are OPEN FORUMS. That is, anyone can participate, and we want to provide a place where people can discuss medical issues freely. If you wish to remain ANONYMOUS, please do NOT enter your real name when registering. Also please remember that all posts here are viewable by anyone on the Internet, and posts may be indexed by global Internet search engines (e.g., Google).

Further down in TOS they state this:
This is a place to come and seek help, or to come and give help. It is not meant to be a battleground or a free-for-all debating society. Kindness and helping should be our watchwords. Our good manners, decency, and civility are welcome and NEEDED here more than anything else.

Sounds to me like the root of this is in disagreeing with the stated purpose and intent of BrainTalk. Perhaps that's the place to take up the issue and not on the board?

punctured

04-26-2009, 09:06 AM

Mot you clearly have issues with some posters. You're better off putting them on your ignore list.

Leakers or non leakers everyone is welcome to post until the violate the TOS. If a non leaker posts an article ... so what. If a non leaker suggest that certain symptoms resemble x or y ... again so what.

We must stick to the TOS. But the forum would be much poorer without mot, who is an important voice of reason in my opnion. Because, Mike, there is something else going on in my estimation: however politely and caringly people stick to it, the TOS does not prevent inappropriate advice or support.

For example what if all posts revolve around imposing and surgically treating leaks that do not exist? (As I think may be sometimes be the case?) Then the forum becomes a PR machine for inappropriate medical care, right? That's a difficult thing to police I understand.

I agree that there's nothing wrong with non leakers suggesting x or y or.... Regrettably there's no way to tell if the 10 people who agree on the relevance of such information are all dead wrong.

So, the forum is the better for the existence of critical voices (like mot) I believe.

I don't care if you agree or disagree with what's posted but you are expected to be civil.

Of course.

Edit: Nobody should take any action given by anyone (Dr or not) over internet forums or email. Always consult your/a doctor.
Yes, but that's kind of tame, if I may say so, because nothing is done, it seems, to discourage people from proposing action or incarnating doctors. Here're some example with loose quotes taken from memory:

unlimited doctor dissing ("jerks", "idiots", "useless")

implying that one is qualified to opine on medical matters ("I disagree with your doctor", "I can tell you: you have a leak")

very explicit calls for actions ("go for it", "don't let your family suffer any longer because you don't get that surgery", "sorry your next step is a laminectomy (scary...)", "get a pressure monitor inserted into your brain", "don't let them believe that you don't have a leak")

I wish that sort of stuff could be reined in because I tend to find it unethical. It would be a lot of work, though.

P.

punctured

04-26-2009, 09:51 AM

Lisa,

I agree with you whole heartedly that this is not the place to come for actual medical advice, that is something you should only be looking to your own doctors for.

But I'm 100% sure that medical advice is what some people take this information for. The disclaimers are nominal.

if there are people who are using information found here to care for themselves or going and offending and alienating their doctors,then they aren't very bright

Look I'd like to consider myself as bright but I'm disabled and easily swayed because of intransigent headaches. I was diagnosed with a leak, by one of the Dr. Wizard Surgeons. Had I posted more about my progress I would have been mercilessly encouraged by all the lay doctors of this forum to act more than I did (which was too much anyway, with some probability). But I decided after all that many of the stories were too grotesque to be believed. This forum started to frighten me. I was influenced by all the learned talk but I discovered that everybody was medically illiterate. Which is fine as long as you always remember to not pretend that you know and to not impose medical conditions on people.

but I don't see how sharing information found and experiences here is a dangerous thing as long as you are under the care of competent medical professionals.

No, but some of it has been unmitigated propaganda. People have been led to believe they had a specific medical condition and that their own doctors were ignorant. In my opinion: terribly frightening.

Recent postings seems to say that no one has learned a lesson from all the interventions that were cheered on and that didn't work.

P.

spots

04-26-2009, 10:57 AM

Hi P,
I'm so sorry for using the offensive terminology, I was off base and apologize. I don't want hurt anyone's feelings and I can completely understand your point of view, I too have been through 3 years of debilitating pain and know how easy it is to grasp on to any hope and how difficult it can be to wade through the massive amount of information available on the net. I think you need to understand though that this process is different for everyone. I'm guessing you think I fall into the category of those "recent postings seem to say that no one has learned a lesson from allthe interventions that were cheered on and that didn't work". Like I've said many times, by the time I got to
Dr S, I had been through over 2 years of hell, had seen 6 very well respected (still respected by me as well), neurologists and neurosurgeons, and had only continued to decompensate. All through my experience with Dr S I continued to consult with my neurologist and neurosurgeon at home, shared all films and recommendations with them and sought their council. My outcome has not been EXACTLY what I"d hoped for, but I am in MUCH better shape than I was before. There's no doubt it was a long, miserable road with bumps along the way, but I wouldn't change a thing about it. I ended up going to Dr S because my doctors suspected a leak but could not figure out what to do about it, they couldn't get my insurance company to approve any of the necessary testing. I found many of Dr Schievink's articles and noticed his email address on each one. I sent an email and got a call back the next day from his administrative assistant. I didn't go because of "propoganda" I found here. The positive reports I read about him here did make me feel better about my decision to ultimately make that big step, but I also shared those articles with my doctors and they thought going to him was my best
bet. Just because many of us have not reported 100% recovery does't mean our treatment wasn't a success. I am in much better shape now than I was 6 months ago, I no longer go to bed at night wondering how much longer I can live like this.

As a nurse and the daughter of a doctor I can completely relate to the horrors of patients diagnosing themselves on the internet and trying to demand a certain course of care. I don't condone that in any way, let the professionals do their job, that's what they are trained for and that's why they earn the big bucks (lol). But I and many others here discovered how little is known about this diagnosis. I admit that after my many procedures and first surgery didn't have lasting results, I started to doubt the diagnosis. When I developed a leak from a lumbar catheter and those symptoms were identical to the ones I'd suffered from all along, I had complete confidence in Dr S's initial diagnosis of spontaneous csf leak. Yes, it is incredibly unfortunate that I ended up with that lumbar catheter leak, no one was happy about that, but I am glad that I now have no doubt that I know what a low pressure headache feels like and there is no doubt that that is my incredibly unfortunate diagnosis.
I'm sorry for the rambling, I just want to apologize for offending anyone. I just want to reinforce my belief that any information you find on the net or elsewhere must be shared with your doctors and you must respect that doctor's expertise, but at the same time you need to advocate for yourself and if you feel your doctor isn't taking your thoughts seriously it may be time to find a new doctor. It has to be a collaberative relationship at least to some extent. I have an enormous amount of respect for doctors and what they go through to get to where they are. They are the experts, but the good ones know that there are illnesses and problems that are going to come through their door that they have never seen or heard of. The one's who meet that challenge with interest and willingness to collaborate are priceless. The ones who don't aren't neccessarily jerks or bad doctors, they just prefer to stick to their bread and butter and probably aren't the doctor for someone who's already tried all the conventional headache treatments and suspect a leak.

Again, sorry for the derogatory remark.

Take care all,
Lisa

mot

04-26-2009, 12:34 PM

Thanks P!

There has to be a counter balance to all the propaganda served up here.
I thank those who have PMed me in support.
It would be different if the results were more satisfying but clearly they are not. I will remain here to respectfully appeal to reason and logic.

M

Mike Weins

04-26-2009, 07:57 PM

I never implied Mot should leave. I merely suggested to put those he/she can't get along with on the ignore list so he/she can't get himself/herself (sorry don't know you well enough to say :o ) into trouble.

For example what if all posts revolve around imposing and surgically treating leaks that do not exist? (As I think may be sometimes be the case?)

Well nothing you can do about that except report the post if you think it violates the TOS.

Yes, but that's kind of tame, if I may say so, because nothing is done, it seems, to discourage people from proposing action or incarnating doctors. Here're some example with loose quotes taken from memory:

Proposing action is a very grey area as nobody here is qualified to perform such actions. However pointing out other avenues to explore is a good thing. Determning what is an actual proposal for action and what is merely a suggested avenue to explore isn't as easy as you think it is.

As an exmaple member1 posted about dry mouth and scaly tongue, and member2 mentioned that the symptoms resembled x (forget exactly what it was) and then member3 basically said member2 was full of bull (in a nutshell).

There was nothing done wrong by member2 in that scenario, yet member3 should have been warned for insulting/attacking member2.

As for incarcerating doctors I have not seen this. More specifically I have not seen ... ("I disagree with your doctor", "I can tell you: you have a leak")The part in bold is 100% out of line and violates the TOS. So whoever posted that take heed as this will serve as the warning. The next time will result in further action.

BrainTalk is primarly about supporting members and as a vault of information (ie articles posted/linked to). Not getting an alternative diagnosis, petty bickering, playing doctor, or playing forum police.

Do not attack the poster if you don't like the post, dispute the post instead.

Posting your opinion/experience(s) about doctors and hospitals is ok as long as you don't attack them (libel ie that doctor is a quack/fraud/incompetent).

Posting your opinion about a doctors diagnosis is not so ok. You can say "if I were you I'd get a 2nd (3rd 4th whatever) opinion". That's about as far as we can let you go in situations like that. You CAN NOT say "I think your doctor is wrong I think you have X". Or anything along that theme.

I shall say this again, DO NOT UNDER ANY CIRCUMSTANCES TAKE ANY ACTION(S) THAT YOU MAY READ HERE WITHOUT CONSULTING YOUR DOCTOR.

forevan

04-27-2009, 04:14 PM

Mike-

Thank you for stepping in here. It is much appreciated so that this forum hopefully doesn't continue it's downward spiral which is chasing away old and new members alike for much longer.
And thank you for this reminder:

Knowledge truly is power, and you can never have enough knowledge when it comes to your own well being.

punctured

04-27-2009, 09:20 PM

thanks, Lisa (spots), I liked what you wrote

I don't want hurt anyone's feelings and I can completely understand your point of view, I too have been through 3 years of debilitating pain and know how easy it is to grasp on to any hope and how difficult it can be to wade through the massive amount of information available on the net.

I don't think you hurt anybody. I've been grasping on to whatever driftwood I saw floating by. It's hard not to.

I think you need to understand though that this process is different for everyone. I'm guessing you think I fall into the category of those "recent postings seem to say that no one has learned a lesson from allthe interventions that were cheered on and that didn't work".

No not at all, you don't. I can't tell these things of course. The general picture looks pretty bleak. I pray that you'll end up fully healed as everybody else. For a long time I have despaired just trying to read my own situation. I was confused when I joined this forum last year, and I am still confused about the physical work that was done on my body and why it should be so difficult to diagnose a headache.

My outcome has not been EXACTLY what I"d hoped for, but I am in MUCH better shape than I was before.

I understand that the road is long and that there are ups and downs. I'm happy for you.

I didn't go because of "propaganda" I found here. The positive reports I read about him here did make me feel better about my decision to ultimately make that big step, but I also shared those articles with my doctors and they thought going to him was my best
bet.

Spots, same with me, I learned about this forum only after starting leak treatment and also received encouragement from my own doctors. I did feel some unease about this forum as I started reading it. Then as results started coming in I grew more and more skeptical about the tone of the presumed support. I did continue reading because the experiences many people share here are close to my own.

Just because many of us have not reported 100% recovery does't mean our treatment wasn't a success. I am in much better shape now than I was 6 months ago, I no longer go to bed at night wondering how much longer I can live like this.

I'm also in better shape and that's why you're hearing more from me:)

As a nurse and the daughter of a doctor I can completely relate to the horrors of patients diagnosing themselves on the internet and trying to demand a certain course of care. I don't condone that in any way, let the professionals do their job, that's what they are trained for and that's why they earn the big bucks (lol).

I agree of course but the temptation is ever present for all of us. For some, or many, of us the leak diagnosis seems like a goal because we're at the end of our road or so it seems. Still, even if we achieve it, guess what, it may be wrong. That was not the case for you, spots. But if it applies to me, or to any one else, God forbid, one might think of:

Do not, as some ungracious pastors do,
Show me the steep and thorny way to heaven,

Thanks for words:

I just want to reinforce my belief that any information you find on the net or elsewhere must be shared with your doctors and you must respect that doctor's expertise, but at the same time you need to advocate for yourself and if you feel your doctor isn't taking your thoughts seriously it may be time to find a new doctor. It has to be a collaberative relationship at least to some extent. I have an enormous amount of respect for doctors and what they go through to get to where they are. They are the experts, but the good ones know that there are illnesses and problems that are going to come through their door that they have never seen or heard of. The one's who meet that challenge with interest and willingness to collaborate are priceless. The ones who don't aren't neccessarily jerks or bad doctors, they just prefer to stick to their bread and butter and probably aren't the doctor for someone who's already tried all the conventional headache treatments and suspect a leak.

Finding that interest and curiosity is difficult. Some, like the guy in the Washington Post story I posted the other day, seem to have to wade through all 300 causes of headaches before the right one is found. If someone gets stuck in the leak corner without a leak and with ruined relationships with the docs, then that's pretty tragic, just as it is priceless when a true leak is discovered and fixed.

Best,

P.

spots

04-28-2009, 10:36 AM

Hi P,
I think I have a better understanding of where you're coming from. I know when I was first diagnosed with a leak it was actually a huge relief to have someone validate my pain. I truly faced too many doctors I still admire suggesting it was psychological. That is how difficult this diagnosis is. They aren't bad doctors, they just were faced with something they hadn't seen before and didn't have the time while running busy practices to research it the way me and my family did. There are actually times now I wish I could go back to the "crazy lady" diagnosis, at least that implied I had some control over the situation. There's no doubt it can be a horrible diagnosis for some, and how far you choose to go in treatment is very personal. I am fortunate that I have had the financial and emotional support from my family to aggressively pursue treatment as I felt that after over 2 years of doing nothing I was ready to go after it. It is all very esoteric, the diagnosis, the potential outcomes, the decisions that must be made along the way. I had to make a leap of faith and follow Dr Schievink's advice because my doctors at home were initially skeptical. When things didn't go well it was hard to keep that faith, but he is not only an expert leak doctor, he is well published and very well respected in other areas of neurosurgery. He is just good at what he does and he was very confident in the diagnosis. At one point I was concerned that he may be biased towards the diagnosis, but as I questioned various people about that, it became evident that he is actually the opposite. I think he sees many people who come to him telling him they are leakers and unless he can undeniably prove it to himself he will not support the diagnosis.

I'm not trying to spread propoganda, just my own thoughts and experiences. I know how hard this all is. Headache is just a very complicated, difficult and frustrating thing to diagnose,treat, and live with. We all for the most part look totally healthy, only those who know us best can look at us and see the agony. If you make the mistake of mentioning you have a headache to someone you always get the old "did you take some tylenol?" People mean well, but most have no idea what it's like to live with chronic daily headaches. I guess my point is , I wish you the very best of luck in your quest for treatment, and try to remember that everyone here can relate to what you are going through on some level. And we all mean well.

Take care,
Lisa

vini

04-28-2009, 10:58 AM

hi all I try to understand all points of view and requests for support , some of the info I could imagine is quite scary also the non resolution experiences of some our members, we all need to guard against suggesting a course of action that differ from the doctors, if it is not our own treatment we are referring to, posting the latest research and treatments are core to a forum such as this, our own thoughts and theory's are also valid , I am a member of another forum were the CSF page has very few posters so is impudent, in the help it can offer, so the more treads the better I say, If anyone feels a thread is wrong or misleading then they should feel free to say so, as to the context not the poster personally, as in any group this would severe no useful purpose, if anyone feels a post is dangerous fraudulent or sick they should report it

as always best wishes

mot

04-28-2009, 11:12 AM

dreb

04-28-2009, 04:55 PM

yes, vini, well said! I agree with you! Thanks for putting into words what I could not express!!

Deb