Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Hey, Lori and gang, I hope everyone's doing well today. I'd be interested, too, in learning how to deal with doctors that don't know a lot about ACM. I know I have expressed frustration with this situation, but I've decided to try to be more proactive. I know that most people (and doctors ARE people (c; ) aren't intimidated by a patient that has more information than themselves about a particular disorder. I'd like some info or tips about how to present this info to doctors. I just don't have much experience in dealing with these situations. We can't just dismiss every doctor that doesn't have a vast knowledge of ACM. That would be, for one thing, extremely time consuming. Waiting for another appointment could take a long time. Plus, the new doctor may not have much more knowledge. I know I'm very intimidated by doctors, and tend to just say 'okay' to whatever they come up with. I know I have to stop doing this. Is it okay to request particular tests, treatments, drugs, etc? Does that bother most doctors? Is it best to just print out a lot of info about ACM and give it to the doctor? Do they appreciate that, or does it make them think you're trying to run the show? Also, are there any particular resources that doctors would pay more attention to than others? For example, the abstracts posted here, are those good to provide to them? I know I keep going on and on about this, but it looks like this is something I'm going to be dealing with for quite some time, if not the rest of my life. Thankfully, my nsg is very competent, and doesn't have a big ego. I just don't want to offend him by presenting him with some bad info. Okay, that's enough from me. Sorry this is so long, and thanks so much if you've gotten this far. Peace, ----- Original Message ----- > Also, I'm a bit leary about walking in there and having to tell him what is wrong. I don't normally diagnose myself...LOL...but what I'm afraid of is not being listened to. He's a great doctor and I was finally happy to have an answer when it took me 2 years to be diagnosed with Lupus. He's always been more than willing to help me in any way possible. But I'm afraid he'll think I'm some kind of kook or hypochondriac if I go in there and plop the ACM info in front of him. Any help on how to handle this? > > Thanks for everything. You all have been great > > Take care, > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Hey, Lori and gang, I hope everyone's doing well today. I'd be interested, too, in learning how to deal with doctors that don't know a lot about ACM. I know I have expressed frustration with this situation, but I've decided to try to be more proactive. I know that most people (and doctors ARE people (c; ) aren't intimidated by a patient that has more information than themselves about a particular disorder. I'd like some info or tips about how to present this info to doctors. I just don't have much experience in dealing with these situations. We can't just dismiss every doctor that doesn't have a vast knowledge of ACM. That would be, for one thing, extremely time consuming. Waiting for another appointment could take a long time. Plus, the new doctor may not have much more knowledge. I know I'm very intimidated by doctors, and tend to just say 'okay' to whatever they come up with. I know I have to stop doing this. Is it okay to request particular tests, treatments, drugs, etc? Does that bother most doctors? Is it best to just print out a lot of info about ACM and give it to the doctor? Do they appreciate that, or does it make them think you're trying to run the show? Also, are there any particular resources that doctors would pay more attention to than others? For example, the abstracts posted here, are those good to provide to them? I know I keep going on and on about this, but it looks like this is something I'm going to be dealing with for quite some time, if not the rest of my life. Thankfully, my nsg is very competent, and doesn't have a big ego. I just don't want to offend him by presenting him with some bad info. Okay, that's enough from me. Sorry this is so long, and thanks so much if you've gotten this far. Peace, ----- Original Message ----- > Also, I'm a bit leary about walking in there and having to tell him what is wrong. I don't normally diagnose myself...LOL...but what I'm afraid of is not being listened to. He's a great doctor and I was finally happy to have an answer when it took me 2 years to be diagnosed with Lupus. He's always been more than willing to help me in any way possible. But I'm afraid he'll think I'm some kind of kook or hypochondriac if I go in there and plop the ACM info in front of him. Any help on how to handle this? > > Thanks for everything. You all have been great > > Take care, > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Hey, Lori and gang, I hope everyone's doing well today. I'd be interested, too, in learning how to deal with doctors that don't know a lot about ACM. I know I have expressed frustration with this situation, but I've decided to try to be more proactive. I know that most people (and doctors ARE people (c; ) aren't intimidated by a patient that has more information than themselves about a particular disorder. I'd like some info or tips about how to present this info to doctors. I just don't have much experience in dealing with these situations. We can't just dismiss every doctor that doesn't have a vast knowledge of ACM. That would be, for one thing, extremely time consuming. Waiting for another appointment could take a long time. Plus, the new doctor may not have much more knowledge. I know I'm very intimidated by doctors, and tend to just say 'okay' to whatever they come up with. I know I have to stop doing this. Is it okay to request particular tests, treatments, drugs, etc? Does that bother most doctors? Is it best to just print out a lot of info about ACM and give it to the doctor? Do they appreciate that, or does it make them think you're trying to run the show? Also, are there any particular resources that doctors would pay more attention to than others? For example, the abstracts posted here, are those good to provide to them? I know I keep going on and on about this, but it looks like this is something I'm going to be dealing with for quite some time, if not the rest of my life. Thankfully, my nsg is very competent, and doesn't have a big ego. I just don't want to offend him by presenting him with some bad info. Okay, that's enough from me. Sorry this is so long, and thanks so much if you've gotten this far. Peace, ----- Original Message ----- > Also, I'm a bit leary about walking in there and having to tell him what is wrong. I don't normally diagnose myself...LOL...but what I'm afraid of is not being listened to. He's a great doctor and I was finally happy to have an answer when it took me 2 years to be diagnosed with Lupus. He's always been more than willing to help me in any way possible. But I'm afraid he'll think I'm some kind of kook or hypochondriac if I go in there and plop the ACM info in front of him. Any help on how to handle this? > > Thanks for everything. You all have been great > > Take care, > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 My surgeon has always told me that if I have an MRI I am to see him right away since my shunt is magnetic. Well, after my last MRI last week it wasn't until much later that day I realized he had not reset my shunt! I called his office and his secretary told me to come back first thing in the morning! He was very abashed and embarrased! You need to take control of your own health issues - the doctors don't 1. remember everything and 2. don't have time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 My surgeon has always told me that if I have an MRI I am to see him right away since my shunt is magnetic. Well, after my last MRI last week it wasn't until much later that day I realized he had not reset my shunt! I called his office and his secretary told me to come back first thing in the morning! He was very abashed and embarrased! You need to take control of your own health issues - the doctors don't 1. remember everything and 2. don't have time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 My surgeon has always told me that if I have an MRI I am to see him right away since my shunt is magnetic. Well, after my last MRI last week it wasn't until much later that day I realized he had not reset my shunt! I called his office and his secretary told me to come back first thing in the morning! He was very abashed and embarrased! You need to take control of your own health issues - the doctors don't 1. remember everything and 2. don't have time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 << Also, are there any particular resources that doctors would pay more attention to than others? For example, the abstracts posted here, are those good to provide to them? I know I keep going on and on about this, but it looks like this is something I'm going to be dealing with for quite some time, if not the rest of my life. Thankfully, my nsg is very competent, and doesn't have a big ego. I just don't want to offend him by presenting him with some bad info. >> The full text article's in the Neurosurgical Focus magazine contained in both the chiari and the syringomyelia issues are VERY credible --I doubt any physician /neurosurgeon would doubt the SOURCE of this info . Also --for even MORE in debth info to share with your physicians -- PLEASE consider getting tapes from the ASAP physicians lectures presented at the confrence . They are even more lengthy -- contain MRI's /graphs ect presented on overhead projector --and can be easily copied to share with more than one doctor . THESE are the most comprehensive source of accurate /current info I know off --I'd get two or three so you do get the differances in belief /perspective and can also compare for yourself /with your doctor what makes the MOST sense in treatment options . Not everyone NEEDS surgery -- the physiatrist tape by Dr Ann Weumser is GREAT from a doctors perspective discussing ALL the sorts of medications and therapys that may help with symptoms too -so I'd sure include getting it . I think this would greatly help any physician providing care to us -- surgery needed or not . The tapes are listed at the ASAP web site - http://ASAP.org --under the store and resources links . The neurosurgical journal Neurosurgical Focus is available online free to print at http://www.medscape.com/viewpublication/65_toc?vol=11&iss=1&WebLogicSession=Pr dBbunoY51pz9juijYQHiK2Ypj3b2lI1BCMvG6Y4mEz6hGTa4K4|8122039318443659262/1841613 92/6/7001/7001/7002/7002/7001/-1 ( chiari issue ) And http://www.medscape.com/viewpublication/65_toc?vol=8&iss=3 ( syringomyelia issue ) BUT you'll find there are articles on BOTH subjects in BOTH issues -- I'd chose those most relevant to your situation if you know any details yet --and dirrect the doctor to these full issues for more info . As far as presenting these -- I've found my local doctors and my " close to home " neurosurgeon were actually VERY glad I'd copied tapes from ASAP for them --and printed a few of these articles highlighting bits I wanted to discuss or felt were relevant to my situation . To be blunt -I've also doc searched for a new doctor when I found one wasn't willing to learn /and had outdated views on chiari too --I don't need more " know it all -God " sorts personally who might well do me harm in thier unwillingness to learn --I did /do make it clear to any new doctor I see that I don't expect them to hold a current understanding given it's quite rare and not a condition they treat lots of folks with --but I'm done being pushed as ide into a closet ( or mislabeled /misdiagnosed over this issue too ! When I needed a new primary care doctor last year --my internist sugested I seek another internist instead of a family practice or GP saying that internists often have a much better grasp on unusual conditons such as chiari --and are more willing to dig in and learn about the complex conditons . It's proved good sound advise too -- both my old and new internists have proved far better at helping with day to day issues /and learned SO much more than other NON neuro/neurosurgeons I've seen . -- Neurologists and neurosurgeons can be VERY nice folks too --so don't be afraid to let them know your educating yourself thisway through these sources --they should easily be deemed acceptable by an neuro sort ! I do see a neurosurgeon now with a great grasp --one of those ASAP medical board of dirrectors neurosurgeons Dr. Batzdorf --and I'm FIRMLY of the opinion when it's possible to see one of the full time chiari specialists it often leads to better understanding and care --even if you do chose a closer to home doctor to provide your ongoing care later. I hope thats helpful -- in Paradise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 Hello to everyone. Congratulations on all the new Post Ops... I need some advice and I know here is where I can find it. I had surgery June 10th and I feel like I can eat so much. My Dr told me he left my pouch at 4 oz but I have been stuck for 3 weeks now. Since Surgery I have lost 30 pounds. But I need some help. I am able to eat everything and I dont et any dumping at all but I watch my sugar intake. When I first started having solid food again I would eat and was super full and now that doesnt happen anymore. What can i do? Quote Link to comment Share on other sites More sharing options...
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