How do I find a Dr. House?
October 28, 2008 11:18 AM Subscribe
How do I find a doctor that can figure out what is wrong with my family member? This seems like a Medical Incredible/House type case.
This has been going on for years now. She has breathing problems and has always had excessive phlegm which kept her up at night. In the past few years the phlegm has gotten so bad that it actually blocks her throat passage and as a result she can no longer eat solid food and must eat from a feeding tube. Even swallowing liquid has become impossible.
She had exploratory surgery to try to figure out what was causing this blockage but the doctors ended up immobilizing one of her vocal chords as a result. Now they have given her a machine that helps suck out the phlegm and give her some breathing room.
She lives in Maryland and has been to countless ENT doctors, specialists, etc and everyone says there is nothing they can do and they cannot find a cause for this. I'm not one to accept the "there is nothing we can do, even though we have no idea what is wrong with her" answer. Any idea how I can find a doctor who will persevere and actually try to help her?
I think what I really need is Dr. Gregory House.
This has been going on for years now. She has breathing problems and has always had excessive phlegm which kept her up at night. In the past few years the phlegm has gotten so bad that it actually blocks her throat passage and as a result she can no longer eat solid food and must eat from a feeding tube. Even swallowing liquid has become impossible.
She had exploratory surgery to try to figure out what was causing this blockage but the doctors ended up immobilizing one of her vocal chords as a result. Now they have given her a machine that helps suck out the phlegm and give her some breathing room.
She lives in Maryland and has been to countless ENT doctors, specialists, etc and everyone says there is nothing they can do and they cannot find a cause for this. I'm not one to accept the "there is nothing we can do, even though we have no idea what is wrong with her" answer. Any idea how I can find a doctor who will persevere and actually try to help her?
I think what I really need is Dr. Gregory House.
Since you're in Maryland, have you tried Johns Hopkins? The wait might be long to get an appointment, but they do have the facilities to do some special case research. Try starting here which will involve filling out a questionaire that will help you find the right kind of doctor.
posted by samsara at 11:27 AM on October 28, 2008 [1 favorite]
posted by samsara at 11:27 AM on October 28, 2008 [1 favorite]
I have faced a similar situation and to be honest you probably won't find a doctor who will persevere and actually try to help her. It sounds cynical, but in my experience it is true.
You have to be as proactive as possible and provide various doctors with as much information as possible. You have to obtain every last blood test ever taken and you have to make sure that you have all of that information for each and every new doctor you see. If you don't you will have a hard time finding a doctor who will do it for you and he will work with limited information.
I would recommend an allergist. My sister suffered from fatigue and malaise for years and it turned out she was quite allergic to Turkey. This was discovered after literally tens of thousands of dollars were spent trying to help her.
Good luck.
posted by Macallister Vagabond at 11:30 AM on October 28, 2008
You have to be as proactive as possible and provide various doctors with as much information as possible. You have to obtain every last blood test ever taken and you have to make sure that you have all of that information for each and every new doctor you see. If you don't you will have a hard time finding a doctor who will do it for you and he will work with limited information.
I would recommend an allergist. My sister suffered from fatigue and malaise for years and it turned out she was quite allergic to Turkey. This was discovered after literally tens of thousands of dollars were spent trying to help her.
Good luck.
posted by Macallister Vagabond at 11:30 AM on October 28, 2008
Response by poster: 517- I called that doctor and they sound a bit shady. They accept no kinds of insurance and want a formal letter outlining your case history before they decide to accept you in 2-3 weeks. I may send the letter anyway, thanks.
I was kind of hoping for something closer to her in Maryland since it's hard for her to travel.
posted by nougat at 11:31 AM on October 28, 2008
I was kind of hoping for something closer to her in Maryland since it's hard for her to travel.
posted by nougat at 11:31 AM on October 28, 2008
Response by poster: Thanks samsara, I filled out the form and hope they get back to me soon.
Macallister- I have suggested to numerous doctors that it may be some odd allergy and have been blown off by them for years. I may try this again.
posted by nougat at 11:38 AM on October 28, 2008
Macallister- I have suggested to numerous doctors that it may be some odd allergy and have been blown off by them for years. I may try this again.
posted by nougat at 11:38 AM on October 28, 2008
If I were House I'd send her on vacation with a new wardrobe to figure out whether it's environmental/allergy related. If that ain't it, maybe she'd enjoy it anyway.
posted by crapmatic at 11:51 AM on October 28, 2008
posted by crapmatic at 11:51 AM on October 28, 2008
I've heard of people with lactose intolerance experiencing a build up of mucus after eating dairy, and that's probably not the only allergy or intolerance that exhibits this symptom. I'm surprised that doctors would dismiss this theory so quickly, but it sounds like you've been unlucky enough to get a bad bunch of doctors.
I'm not a doctor, but there's something called laryngopharyngeal reflux that might be worth looking into.
posted by Evangeline at 11:57 AM on October 28, 2008
I'm not a doctor, but there's something called laryngopharyngeal reflux that might be worth looking into.
posted by Evangeline at 11:57 AM on October 28, 2008
Response by poster: I talked to her last doctor and it seems she actually has dysphagia and the "flap" in her throat muscle is weaked so much that it is preventing her from swallowing. So even without the phlegm there is a separate issue.
posted by nougat at 12:00 PM on October 28, 2008
posted by nougat at 12:00 PM on October 28, 2008
Yeah, call the Mayo Clinic. The care there is excellent. It's worth at least trying to make the trip.
posted by Green Eyed Monster at 12:49 PM on October 28, 2008
posted by Green Eyed Monster at 12:49 PM on October 28, 2008
Never take never as an answer - especially when it comes from a doctor. That said, I'm thinking this could be an allergy to some kind of food in her diet. Has she ever been to an allergist? Is there any particular food she's been eating for the duration of her illness? Can you get this info from her and then post?
posted by watercarrier at 12:55 PM on October 28, 2008
posted by watercarrier at 12:55 PM on October 28, 2008
Also - would she be open to trying a new diet - if this could help her condition? Also please post her age.
posted by watercarrier at 12:57 PM on October 28, 2008
posted by watercarrier at 12:57 PM on October 28, 2008
Response by poster: She is in her late 70s now. She has had allergen tests done, with no significant results. Right now she's scared of getting another barium xray so I'm trying to find a doctor that can do the FEEEEST thing (no barium required).
Really all she wants is to be able to eat again. A new diet is out of the question as her current diet is liquid food via a test tube. Surely there has to be some way to retrain that muscle in her throat to swallow correctly.
I'm also wondering why there is not a mechanical option for this.
posted by nougat at 1:01 PM on October 28, 2008
Really all she wants is to be able to eat again. A new diet is out of the question as her current diet is liquid food via a test tube. Surely there has to be some way to retrain that muscle in her throat to swallow correctly.
I'm also wondering why there is not a mechanical option for this.
posted by nougat at 1:01 PM on October 28, 2008
I talked to her last doctor and it seems she actually has dysphagia and the "flap" in her throat muscle is weaked so much that it is preventing her from swallowing. So even without the phlegm there is a separate issue.
I'm no doctor, but it seems to me that I'd expect a buildup of mucus if I couldn't swallow it; your sinuses are meant to drain down your throat. What if you tried to address the swallowing first?
posted by mendel at 1:04 PM on October 28, 2008
I'm no doctor, but it seems to me that I'd expect a buildup of mucus if I couldn't swallow it; your sinuses are meant to drain down your throat. What if you tried to address the swallowing first?
posted by mendel at 1:04 PM on October 28, 2008
BTW - she's not too far from John Hopkins. Would it be possible for you to email them and find out if they can test her for a possible adverse food reaction she might be suffering from? They can run every test possible to determine if in fact it is an allergic reaction. And at least put your minds to rest if it isn't and could then move on to further assess her situation. This is their site.
posted by watercarrier at 1:06 PM on October 28, 2008
posted by watercarrier at 1:06 PM on October 28, 2008
Re - liquid food. All food can be liquefied. She could be getting a completely other diet in liquefied form. Question is, would she be willing to try something new if it could help her. BTW - in the case of an adverse food reaction, all it takes is one chemical reaction, one food the body rejects to create the havoc you described. Even if you've already gone down the route of checking for allergens, I still think you need to be looking in that direction. She could be consistently being re-introduced to whatever it is that's causing a reaction with whatever substances she's getting in the tubes. Are you preparing the food or is pre-made?
posted by watercarrier at 1:14 PM on October 28, 2008
posted by watercarrier at 1:14 PM on October 28, 2008
Oh ok - didn't see samsara's reply re JH. So - nthing that. Is there any dairy in that food she's getting?
posted by watercarrier at 1:19 PM on October 28, 2008
posted by watercarrier at 1:19 PM on October 28, 2008
When I was a kid, many years ago, the father of a friend of mine was really slender and weak and had excessive phlegm to the point he often had an empty milk carton beside him to spit into. No one could figure out what was wrong with him. He finally died when I was in high school, and on autopsy it was discovered he had a congenital very narrow aorta ('the size of a pencil').
These days, though, it seems likely to me such an abnormality would have been detected if that's what's at the root of your family member's problems.
posted by jamjam at 1:35 PM on October 28, 2008
These days, though, it seems likely to me such an abnormality would have been detected if that's what's at the root of your family member's problems.
posted by jamjam at 1:35 PM on October 28, 2008
They accept no kinds of insurance
My primary care physician (before I went to grad school) accepted no insurance and only accepted new patients through personal referral. He was also the best doctor I've ever had, both in terms of his expertise and his professionalism. When I first started seeing him, I asked him why he didn't accept insurance. He said that no doctor would deal with insurance companies if they didn't have to, and he was lucky enough that he didn't have to. He was expensive, but my insurance company still paid 70-80% when I submitted my claims directly.
I'm not saying this is typical of every situation, but you might not want to discount a practice simply because they are selective in who they treat and how they accept compensation. A dossier might simply mean that they don't want to take your time or money if they can't treat you. Cash only might mean they are successful enough that they can sustain a practice without dealing with insurance.
posted by mrmojoflying at 2:00 PM on October 28, 2008
My primary care physician (before I went to grad school) accepted no insurance and only accepted new patients through personal referral. He was also the best doctor I've ever had, both in terms of his expertise and his professionalism. When I first started seeing him, I asked him why he didn't accept insurance. He said that no doctor would deal with insurance companies if they didn't have to, and he was lucky enough that he didn't have to. He was expensive, but my insurance company still paid 70-80% when I submitted my claims directly.
I'm not saying this is typical of every situation, but you might not want to discount a practice simply because they are selective in who they treat and how they accept compensation. A dossier might simply mean that they don't want to take your time or money if they can't treat you. Cash only might mean they are successful enough that they can sustain a practice without dealing with insurance.
posted by mrmojoflying at 2:00 PM on October 28, 2008
nougat, be sure to let Hopkins know of the trouble swallowing and the weak muscle. They'd at least be able to hook her up with a speech therapist--this is sometimes part of what they do, because it's all connected to the mouth/throat muscles.
posted by ImproviseOrDie at 2:40 PM on October 28, 2008
posted by ImproviseOrDie at 2:40 PM on October 28, 2008
Mayo Clinic (and places like it) are exceptional because they have you see a team of doctors. Sample:
You'll start by seeing a generalist who will coordinate your appointments. You go to 5-6 appointments a day, for 2-3 days. You'll see specialists, run tests, and see one or two generalists to decide what appointments to schedule. At the end, nearly all the doctors will meet together and discuss your situation. Then, you'll meet with the coordinating generalist and discuss the results of the all-doctor meeting.
Mayo Clinic doesn't have Dr. House for your condition, but they can construct an equivalent team. And the glue they use it fit it all together makes it an impeccable experience.
I'm still suspicious that one of the Mayo visits I've heard about was purposely scheduled so that the patient would be laughing hysterically for the first 5 minutes of the psychologist appointment.
posted by easyasy3k at 7:46 PM on October 28, 2008
You'll start by seeing a generalist who will coordinate your appointments. You go to 5-6 appointments a day, for 2-3 days. You'll see specialists, run tests, and see one or two generalists to decide what appointments to schedule. At the end, nearly all the doctors will meet together and discuss your situation. Then, you'll meet with the coordinating generalist and discuss the results of the all-doctor meeting.
Mayo Clinic doesn't have Dr. House for your condition, but they can construct an equivalent team. And the glue they use it fit it all together makes it an impeccable experience.
I'm still suspicious that one of the Mayo visits I've heard about was purposely scheduled so that the patient would be laughing hysterically for the first 5 minutes of the psychologist appointment.
posted by easyasy3k at 7:46 PM on October 28, 2008
This thread is closed to new comments.
posted by 517 at 11:22 AM on October 28, 2008