What a crap doctor! I hope you find someone soon who is decent. And I totally don't get the 'is this an emergency situation' questions. My therapist office used it and they would add 'if it is, please hang up and dial 911' -_-
For emergency situations, can you write down the medical history on a good day so your husband can have it on hand? It still wouldn't be an ideal situation but it could possibly help...
He actually knows almost all of the stuff that's actually relevant. There are curveball-type questions he probably won't know the answer to, like
How old was she when she had her first seizure? How many grand mal seizures has she had? petit mal? Has she ever experienced this/that/the other symptom?
I have a long enough medical history I do well to confine it to 1.5 pages, single-spaced. I try to hit all the high points, but if I'm in no condition to answer questions and my husband has no idea how to answer the out-of-left-field stuff, then what? Frankly, *I'm* unclear on the answers to the questions dealing with infancy/early childhood, because I had my first surgery when I was three weeks old, and human memories don't begin to form until about age 3 or so. The other thing about the written medical history is that I've actually taken it with me when I've had my first appt with a new doctor, only to have the new guy ignore it and ask me questions he'd already know the answer to, if he'd bothered to read what I gave him.
Would it be useful for your husband to have a "kitchen sink" version of the medical history, as well as the 1.5-page version? Something that's got all the answers to all the questions you've ever been asked, as well as the ones that other people say they've been asked, with answers that aim at completeness, rather than brevity? The brief form would be good to refer to for 98% of the stuff, since it would allow finding it more quickly, but then if they really do need the off-the-wall 2%, it's there, even if it takes longer to look through the document for it. I can't think of how else you could equip him to answer those questions when you're not in condition to, and honestly, if you found a doctor that would not only go through all that stuff with you but then *remember* it when it was needed some time later, he'd be the first I've ever heard of, so even if he wasn't being an ass (and he sure is) about the get-to-know-you visit, it would be useful to have.
We actually have a good chunk of it here at the house. An awful lot of it had to be left behind when my family relocated from Chicago to Houston, and I'm still not sure I personally have copies of everything my parents brought with them, but I have most of it. I suppose I should think about scanning it so that we don't have to lug five pounds of files with us every time I see a new doc
( ... )
For crying out loud. I suppose it's sort of a good thing that you found out about this attitude before you did find yourself in shunt failure or any other kind of emergency.
But I'm wondering whether the person who gave you the bad attitude was getting above perself. You were an established patient of this neuro's predecessor and now he's taken over the patient list, including you. I suspect that the person you talked to was some jobsworth receptionist or inexperienced nurse. If you contact the neuro himself you might find a far better attitude, I think.
Unfortunately, that's very unlikely. When I started attending Hydrocephalus Assn conventions, one of the things they warned us about was "if your pediatric neurologist/neurosurgeon is willing to follow you as an adult, hang on to them and don't let go. Many adult doctors 'aren't interested' in treating hydrocephalus
( ... )
Well, I live in TX and my neurosurgeon relocated to Colorado. The US is a sizable country in relation to the UK. If he'd relocated to one of the immediately surrounding states, like Oklahoma or Louisiana, I might have a shot at going to see him, but he's far enough away I'd have to fly. And the whole point of the new guy supposedly taking my old guy's cases is so that I wouldn't be in the position I'm in now; I'd still have a neurosurgeon I trusted to take care of me. I'm just really uncomfortable with the new guy's position that he's not interested in getting to know me, he's only interested if it's an emergency and he gets to do surgery.
Anyhow, here's a wild thought. How about contacting old guy in Colorado and explain the situation.
He might have other people to refer you too, and he might appreciate knowing that the guy is sold his business too is pissing off his former customers (which may be splashing him with some bad reputation, if nothing else).
My old guy was part of a multi-doctor practice. So the new guy was already a member of the practice who supposedly agreed to take all the old guy's pts. When I heard my old guy left town, I looked around for a good local replacement. I found a different guy, also a member of that practice, who'd apparently studied under my old doc when they were both in San Antonio, before they both came to Houston. I called up that doctor's office, and that's when I was told "No, the guy you need to see isn't the guy who studied under your old doc, it's This Other Guy." This Other Guy is the doc whose office called me today to tell me that "getting to know you visits are a waste of his time
( ... )
I have CP so I totally know what you mean about there not being any doctors practicing that know what to do with you, or that want to deal with you. Like you, I'm in the first generation of people to reach adulthood with a reasonable quality of life. I went to an orthopedist until I was 18, and then after that, that was it. There simply aren't any orthopedists that know wtf to do with an adult with CP. So I'd go to a pediatric doctor, but I'm 32, so they won't see me. It's very frustrating. Especially since they all think that CP is not progressive. Which is true, but only in as far as the brain damage that caused it to begin with. The physical effects are most certainly progressive. I have been having issues, and I need some sort of intervention, but I don't know what and all the regular orthopedists tell me there's nothing wrong with me. I beg to differ. Frustrating as all get out.
I hope it works out for you. On the plus side, at least you found out that that neurologist is a jerk before you started going to him.
My current neurologist *is* a bit of a jerk, the guy I'm trying to see is a neuro*surgeon*.
On that note, CP is a neurological disorder, no? Can your neurologist, assuming you have one, direct you to doctors who might be able to help you? My current neurologist has actually given me a couple of neurosurgeons' names, but since I'm not all that happy with him at the moment, I dunno how much stock I'd put in his recommendations.
Playing devil's advocate here. If your old doc talked to the new doc and he agreed with your old doc to take you, his staff could be the ones at issue not the doc. Why not call and speak to someone higher up? They should have patient services or an ombudsman or something.
I'd lay it flat out. Old doc said new doc would be assuming my case. I called to make an appointment and was told by the staff to politely bugger off. Is this shit for reals since I was told new doc would take me on? WTF already? Ok, well, you could phrase it better than that. I bet you that someone would call you back because I believe that once your old doc said new doc would take you on, they are supposed to take you.
Mind you, you might still want a different doc, but at least you know if its him, his staff, or all of them being butt heads.
Yeah...the problem with that is that I had my last two revisions in '04. I know my old guy's been gone for at least two years (well, I know that now, if I'd known it back then I wouldn't be in this mess). Since I never received word that my old guy was leaving town, I never had the chance to get established with the new guy. It's been a total of eight years since I last saw the old guy. I imagine the new guy's POV is that, if I really cared about getting established, I'd have been in to see him eight years ago. At this point he's probably thinking "wtf is she bothering me for?" I don't agree with that POV, of course, but I can kinda see where he's coming from.
So sorry that you're having to go through that - I've had trouble finding a willing doctor and my condition is nothing compared to yours, so I really feel for you
Comments 15
For emergency situations, can you write down the medical history on a good day so your husband can have it on hand? It still wouldn't be an ideal situation but it could possibly help...
Reply
How old was she when she had her first seizure?
How many grand mal seizures has she had? petit mal?
Has she ever experienced this/that/the other symptom?
I have a long enough medical history I do well to confine it to 1.5 pages, single-spaced. I try to hit all the high points, but if I'm in no condition to answer questions and my husband has no idea how to answer the out-of-left-field stuff, then what? Frankly, *I'm* unclear on the answers to the questions dealing with infancy/early childhood, because I had my first surgery when I was three weeks old, and human memories don't begin to form until about age 3 or so. The other thing about the written medical history is that I've actually taken it with me when I've had my first appt with a new doctor, only to have the new guy ignore it and ask me questions he'd already know the answer to, if he'd bothered to read what I gave him.
Reply
Reply
Reply
But I'm wondering whether the person who gave you the bad attitude was getting above perself. You were an established patient of this neuro's predecessor and now he's taken over the patient list, including you. I suspect that the person you talked to was some jobsworth receptionist or inexperienced nurse. If you contact the neuro himself you might find a far better attitude, I think.
Reply
Reply
Not knowing your country's system I'm wondering whether 'out of state' has to mean 'out of reach'.
Reply
Reply
Anyhow, here's a wild thought. How about contacting old guy in Colorado and explain the situation.
He might have other people to refer you too, and he might appreciate knowing that the guy is sold his business too is pissing off his former customers (which may be splashing him with some bad reputation, if nothing else).
Reply
Reply
I hope it works out for you. On the plus side, at least you found out that that neurologist is a jerk before you started going to him.
Reply
On that note, CP is a neurological disorder, no? Can your neurologist, assuming you have one, direct you to doctors who might be able to help you? My current neurologist has actually given me a couple of neurosurgeons' names, but since I'm not all that happy with him at the moment, I dunno how much stock I'd put in his recommendations.
Reply
I'd lay it flat out. Old doc said new doc would be assuming my case. I called to make an appointment and was told by the staff to politely bugger off. Is this shit for reals since I was told new doc would take me on? WTF already? Ok, well, you could phrase it better than that. I bet you that someone would call you back because I believe that once your old doc said new doc would take you on, they are supposed to take you.
Mind you, you might still want a different doc, but at least you know if its him, his staff, or all of them being butt heads.
Reply
Reply
Reply
Leave a comment