Concierge medicine

[creekland]

Concierge is just a business model. What you need is an ent with an inquiring mind focused on wellness. It wont be a youngster, ime, but someone older who has realized his patients need more and keeps up on research. Fluid behind ear is a plumbing problem....could be result of a cold, swollen tissue. How are your tonsils and adenoids? Are they swollen? What about low grade sinus infection? Is it both ears or just one? This article summarizes everything I learned from the local ent when my child had chronic otitus media with effusion: http://advancedotolaryngology.com/patient-education/chronic-otitis-media/

What you cant do is get away from environmental allergy causes, unless you are willing to move. In my area, we are down wind from coal burning plants...i have known several people who have moved in, developed allergies, and moved away to escape living with the effects.

 

The ENT I saw was definitely older and had oodles of experience - at least it seemed that way.  The ear wasn't acting up at that time, but the tests he did confirmed what I'd told him (so he said) and he blames it on radiation regardless of what the radiation docs say.  He literally couldn't find any other reason and offered the tube as an option if I wanted it.

 

It's almost always just the left ear.  It's been going on for just short of 2 years now.  While variable (based upon how it drains), the same thing happens both at home and away from home - far away - longer time periods - all seasons - no food connections I've found.  It's tough to think it's any sort of allergy nor are there any other allergy signs just as there are no other infection signs.  I get MRIs for the brain tumor and they cover this area well - nothing there.

 

I accept all of the above.  I have my doubts about infection, but I'm trying it because it's about the only thing I can do.

 

My brain turns to "what causes the body to produce fluid to start with?"  What gland/hormone is associated with that?  Is it off and producing too much (area fills before enough can drain) or is it drying and clogging the drain?  If so, why?  What would cause that?

 

Those are the questions I don't know.

 

I suspect the latter because it builds, then pushes through - I envision it's like a plunger of sorts.  When I use Sudafed it works for a couple of days, then gets worse.  I think Sudafed opens the area, but if it dries, it then has clogged a bigger area and needs more to push through.  I now save Sudafed for important times when it really bugs me or I'm flying.  (Once when flying - descending - I literally felt/heard one of the clogs break up.  It sounded like a paper crumpling.  Then it felt better for a bit.  Usually though, I just feel the liquid drain either as drips or like a faucet has turned on (briefly).  Then it's better until it builds again.  The last two - three weeks it hasn't given me a break... hence the brain games.  It's tempting to try the airplane bit again, but that's a costly fix.

 

Oh, I also tried Flonase.  That seemed to work great for a day - longer than a day on the ear - but after the first day it also brought on other symptoms I think are linked, including an extra one, quite severely until I quit (less than a week).  I'm hesitant to try it again, but doing so is my next plan if the antibiotics don't work.  Perhaps the other stuff acting up was a coincidence...

 

Plan C (for myself) is getting some sort of asthma inhaler the doctor gave me a prescription for and trying that.

 

'Tis actually rather important to get the fluid to release so it doesn't end up breaking the ear drum instead of plunging through the drain.  So far it's just stretched the ear drum considerably (as per the ENT).  It also hasn't affected hearing much.  My body does a good job at keeping things going decently.  I just wish it could fix the problem - and that fixing this one fixes others that could be related that are just as bothersome when they act up.

 

Nodding my head to the " I've yet to find a doctor who's been impressed by anything I find online." I know that there is a lot of weird stuff out there. I hope that you can find a doctor that has experience with this or who can hunt down information on people with similar symptoms and treatment ( or who will listen to you as you tell him /her about the research that you have done.). Good to have a doc in the family too!

 

Honestly, this morning I'm leaning back toward Plan A and just seeing what I can do with it all.  Concierge sounded appealing, but chances are, their knowledge is not much different than other doctors so it'd likely be a rehash of what I've already done.

 

This morning quite a few symptoms are acting up besides the ear - normally that prods me into doing something.  Today it's telling me I can live with it.  It hasn't killed me (yet).  And if it were to do so, that would, technically, solve the problem. :lol:  (I'm not really worried about that at this point.)

 

For now, I'm going to get off my duff and go out and play in the snow (feeding chickens, etc).  I've seen local news reports suggesting we're closer to 15 inches already... might as well enjoy it and get distracted from what my body's complaining about!

[Crimson Wife]

Maybe it would be worth contacting a professor at the closest audiology school to you and seeing if they have any insight. I took Anatomy & Physiology of Hearing last semester and there was a lecture on all the various weird things that can happen to the ear. Some of them did cause fluid buildup IIRC.

[creekland]

Maybe it would be worth contacting a professor at the closest audiology school to you and seeing if they have any insight. I took Anatomy & Physiology of Hearing last semester and there was a lecture on all the various weird things that can happen to the ear. Some of them did cause fluid buildup IIRC.

 

Maybe, once I've been prodded enough by the body again.  But this is just one issue that may or may not be related to the others.  I think they are, but it's a pure guess.  I'm not sure where the nearest audiology school is... and if my hearing is not bad (so says the ENT - I agree)... is it really their field?

 

Just got in from the Great Outdoors.  We have snow!  

 

Never trust Creekland's judgment on snow levels when she's looking outside from inside...  The yardstick showed a variance from 8 inches (under a tree - really protected area) to 26 inches in a moderate drift behind our car.  This was not the largest drift.   It was one I could easily reach!

 

Trying to get areas out in the open showed anywhere from 14 - 16 inches - and we're just halfway though the storm they tell us.

 

Chickens were happy to see hubby (he did them!).  Ponies were wondering why we've opted to skip grain today.  They have hay and can go in/out of the barn as they please.  They've opted for out...

 

Cats have not asked to go back out - wonder why?   :lol:   I'm staying in for a bit now... it's downright warm in here after having been out for a few minutes at 22 degrees and windy with snow coming into my boots.

[Jean in Newcastle]

Creek, this is the way it is for many of us with invisible illnesses.  I've been at this for 30 years now.  I really don't think it is most doctor's faults (obviously some are better than others).  As you said, "they can't know what they don't know".  I suffer the effects of inflammation that no one can pinpoint (and in my case it moves around so it isn't just in one place).  I've done the anti-inflammatory diets (no response even though I stayed strictly on it for months).  I do the curcumin (tumeric).  I was just told by a doctor that Boswellia is an anti-inflammatory that works better than curcumin in certain cases.  I'm going to try that. 

 

If you are on prescription meds, always check with someplace like Drugs.com to make sure that there isn't a known reaction between any supplement and meds you are on. 

[Crimson Wife]

Maybe, once I've been prodded enough by the body again.  But this is just one issue that may or may not be related to the others.  I think they are, but it's a pure guess.  I'm not sure where the nearest audiology school is... and if my hearing is not bad (so says the ENT - I agree)... is it really their field?

 

The audiology schools in PA are Bloomsburg, Salus in Elkins Park, and Pitt. Maryland has Towson and UMD-College Park if those might be closer to you.

 

I wouldn't go to a regular audiologist if you're not having hearing issues but a professor of audiology might be more knowledgeable about what could be causing the fluid.

 

[Lanny]

There was an "Extra" about this, years ago, that I watched many times, when the viewers in the USA were getting commercials.  Those doctors limit the number of patients in their practice.  If you have the $ and if you like the M.D.,, I would go for it.  To be an M.D. in the USA now is not a bed of Roses and that is why some doctors are going to Concierge, so they can provide much better care to their patients.  For many M.D.s now, it is either that or retire now.

[creekland]

Creek, this is the way it is for many of us with invisible illnesses.  I've been at this for 30 years now.  I really don't think it is most doctor's faults (obviously some are better than others).  As you said, "they can't know what they don't know".  I suffer the effects of inflammation that no one can pinpoint (and in my case it moves around so it isn't just in one place).  I've done the anti-inflammatory diets (no response even though I stayed strictly on it for months).  I do the curcumin (tumeric).  I was just told by a doctor that Boswellia is an anti-inflammatory that works better than curcumin in certain cases.  I'm going to try that. 

 

If you are on prescription meds, always check with someplace like Drugs.com to make sure that there isn't a known reaction between any supplement and meds you are on. 

 

You have my admiration in dealing with your health for 30 years.

 

I went a year and a half with my bt issues before opting to see a doctor about them, so if you add that to the 2 years since I'm just at 3 1/2... and tired of it, or at least the annoying parts. But it's more annoying trying to get it fixed when there are no answers.

 

Other than the antibiotics at the moment, there are no prescription drugs.  Turmeric and a multivitamin are the only things I take regularly - ibuprofen for headaches, but it doesn't work on this other stuff, so there's no point.

 

Let me know what you think about Boswellia.  I'm open to suggestions.

 

[Jan in SC]

I would want to know if the concierge doctor has privileges at the hospital you prefer.  I won't use a GP who doesn't do hospital visits.  If I'm sick, I want the doctor I confer with on a regular basis.  Also, the internists at the hospital are not good at communicating with private practice doctors.  This can cause lots of issues with both treatment and safety.  Our ds was injured a few years ago and the ER doctor assured me that he consulted with the orthopedist.  He had not.  The orthopedist said that it happened at least once a week.  

 

Random ear story- my friend was having lots of fluid issues with her ear.  After a few weeks of dull pain, she developed stabbing pains and hearing issues.  They did put a tube in, which helped with both issues.  A couple of weeks later, she had - what appeared to be- an attack of Bell's Palsy.  She ended up going to a new ENT and he realized that both of her issues were actually shingles.  She was put on an antivirus and some of her issues improved. 

[creekland]

I would want to know if the concierge doctor has privileges at the hospital you prefer.  I won't use a GP who doesn't do hospital visits.  If I'm sick, I want the doctor I confer with on a regular basis.  Also, the internists at the hospital are not good at communicating with private practice doctors.  This can cause lots of issues with both treatment and safety.  Our ds was injured a few years ago and the ER doctor assured me that he consulted with the orthopedist.  He had not.  The orthopedist said that it happened at least once a week.  

 

Random ear story- my friend was having lots of fluid issues with her ear.  After a few weeks of dull pain, she developed stabbing pains and hearing issues.  They did put a tube in, which helped with both issues.  A couple of weeks later, she had - what appeared to be- an attack of Bell's Palsy.  She ended up going to a new ENT and he realized that both of her issues were actually shingles.  She was put on an antivirus and some of her issues improved. 

 

The bolded is a very good point I hadn't thought about - thanks for bringing my attention to it.

 

The dull pain is annoying.  When it turns into a stabbing pain it definitely makes me want to dig my ear out.  Fortunately, so far, that doesn't stay long (so far).

 

In general though... while I was contemplating trying someone new yesterday, I'm really thinking of ditching that idea today.  That article posted above with the lady shared my frustrations exactly (not issues, but frustrations).  I no longer think a concierge doctor is going to know more than pretty much any other doctor.  Tests haven't helped (except for finding/fixing the carpal tunnel issues - a little molehill fixed comparatively :glare: ). 

 

I don't care to rehash what's already been done a couple of times and end up with the same result... "can't help - sorry - try to reduce your stress..."  That's more frustrating and the combo of the issues and doctor issues IS the only stress in my life, so cutting out the doctor visits ought to reduce stress.

 

When more stuff appears - if more stuff appears - maybe then someone will be able to figure it out - or not.

 

Today is not that good of a day (issue-wise), so if my body is ok with that decision today... it ought to be able to handle it in general.  Usually bad days get me thinking I need to keep pressing on with it ('cause I know something's wrong that I can't fix) and good days make me think I can handle it ok ('cause I like to think my body is fixing it itself).

 

My latest pondering has been figuring out how I can get hold of stronger antibiotics than amox.  I'm trying that because I have it, but I'm not sure it's strong enough to rule out anything if it doesn't work... and wondering if I want to rule all of that out before trying Flonase again.  The issues ended up so strong with that one I'm really not looking forward to trying it again.  I'll see.  I still have nine days left to think about it.  And the amox could work...

 

[prairiewindmomma]

Boswellia (frankincense) has a variety of subtypes. B. serrata, B. sacra, and B. frereana, and B. carterii (generally sold as an essential oil) are the types you are most likely to bump into when buying stuff for medicinal use. Most research has been done on boswellia seratta.

 

My personal experience...I needed to add stuff from the ginger family for the synergistic effect. Black pepper and ginger did the trick. Most health food stores sell them in a blend for this reason.  It helps to bring inflammation down, but I did not have a dramatic improvement.

[LMV]

I can't answer for that particular doctor, but in general, you pay a fee and pretty much all visits to that office are free, lengthy (as needed I presume), and quick.  Some I've seen also have pretty good discounts or some regular tests included for free.

 

Since we're with health share, we pay for doctor visits anyway unless those visits deal with a problem - as some of these might considering the reason for the visit is the ongoing problem.  Any doctor is covered for those.

 

Yes, we'd be paying more than we normally pay in a year's time, but my mind is wondering if it's worth it for the pros.

 

 

I showed hubby the site and he googled the doctor finding a probation for something in Maryland.  If I can't find out what that was for, I'll probably keep looking TBH, so it's good to know there are more of these around.  I could always expand my search area.  I've got some time to contemplate this while I see if the antibiotics work.  If they do, then I'll slink back into my (medical) cave and just keep the idea there for anything in the future I can't handle (or if it doesn't fix the other stuff too).

 

Anyone have any idea on how to find out what probations are for?  I'm pretty sure there are some things I wouldn't care about, but others I would.

 

 

If you call the Board where s/he is certified - if the MD is board certified, they should be able to tell you what the infraction was.

 

Is the probation actually through an ABMS board? That would seem unlikely, I've never heard of that for any of the ABMS boards I'm certified through.  My guess would be that the probation was of the medical license. In that case you can check with the state medical board that applied the sanction.  Some state boards provide disciplinary actions online. Some states provide only via completion of a formal request in writing.  Additionally the detailed disclosure  regarding the case do vary from state to state.

[LMV]

I would want to know if the concierge doctor has privileges at the hospital you prefer.  I won't use a GP who doesn't do hospital visits.  If I'm sick, I want the doctor I confer with on a regular basis.  Also, the internists at the hospital are not good at communicating with private practice doctors.  This can cause lots of issues with both treatment and safety.  

 

I completely agree that communication is key! I also think that as we go forward we will see less and less physicians with hybrid practices. The hospital I work at will not credential GPs for inpatient admitting privileges. The large Internal Medicine group does still use a rotating schedule [one of their doctors does hospital each week] and they will cover all of their patients in the hospital. Most of the smaller IM groups and most of the FM groups/individuals have now ceded admissions to the hospitalists. DH and I are established with the large IM group so we do have the benefit of being admitted by them in the event of need, but at this point I'm not sure if I would have switched away from one of the other groups just because they stopped admitting.

 

Our kids' pediatrician does have a hybrid practice and this is more important to us.  Our local hospital does not have pediatric hospitalists so kids who see FM or pediatricians who do not admit are generally admitted by whichever pediatrician is on call for unassigned admissions. 

[creekland]

I completely agree that communication is key! I also think that as we go forward we will see less and less physicians with hybrid practices. The hospital I work at will not credential GPs for inpatient admitting privileges. The large Internal Medicine group does still use a rotating schedule [one of their doctors does hospital each week] and they will cover all of their patients in the hospital. Most of the smaller IM groups and most of the FM groups/individuals have now ceded admissions to the hospitalists. DH and I are established with the large IM group so we do have the benefit of being admitted by them in the event of need, but at this point I'm not sure if I would have switched away from one of the other groups just because they stopped admitting.

 

Our kids' pediatrician does have a hybrid practice and this is more important to us.  Our local hospital does not have pediatric hospitalists so kids who see FM or pediatricians who do not admit are generally admitted by whichever pediatrician is on call for unassigned admissions. 

 

Ok, I'm going to pretend I understood this... I'll admit to not having any inpatient (overnight) hospital experience since my youngest was born - then we chose a hospital that only did women's things.  He's 20 years old now.  Things might have changed a bit...

 

I like it that way (hardly any experience), so... not googling to figure it out. ;)  I'll just guess that things have changed.

[ktgrok]

I still think you need to at least try a round of chiropractor visits. 

[creekland]

I still think you need to at least try a round of chiropractor visits. 

 

Because they will??? (Finish the sentence for me.  I'm not seeing a clear answer.  My mom goes to a chiropractor for back/spine issues.  I don't have any of those.  And even after she did a bit with her chiropractor she ended up just getting cortisone shots and that actually helped the best.  She was singing praises about them earlier today in a phone call.)

[ktgrok]

Because they will??? (Finish the sentence for me.  I'm not seeing a clear answer.  My mom goes to a chiropractor for back/spine issues.  I don't have any of those.  And even after she did a bit with her chiropractor she ended up just getting cortisone shots and that actually helped the best.  She was singing praises about them earlier today in a phone call.)

 

Identify areas of inflamation as well as very small misalignments that regular doctors wouldn't consider important, but could be causing your issues. I know that chiropractors often help with fluid in the ear, for example. And could help with the numbness/tingling as well, if that is caused by a small subluxation somewhere. 

[creekland]

Identify areas of inflamation as well as very small misalignments that regular doctors wouldn't consider important, but could be causing your issues. I know that chiropractors often help with fluid in the ear, for example. And could help with the numbness/tingling as well, if that is caused by a small subluxation somewhere. 

 

That honestly sounds promising, but I have to admit when I mentioned/suggested trying a chiropractor to my work IRL friends (looking for recommendations of people) some time ago (numbness/tingling issue) they pretty much all had stories of chiro visits gone wrong to share - hearsay in most cases - but enough to make me wary.  I don't want to cause problems that aren't there... it's a scary thought.

 

FWIW, the tingling/numbness is still there too, but when someone (Hive) shared a peri-menopause list of possible symptoms it showed up on there, so I've tossed it into that category and figured I'll just have to live with it.  It's not one of the things I consider the most bothersome in my life as all I have to do is move to get it to go away.  It's annoying at night and when I have to be still (sitting), but comparatively, it's not an issue unless I were ever confined to bed rest or something - and even then - there's a different pressure issue (in the back of my head) that would drive me insane first in that situation.

 

If I were to toy with the idea - similar to the concierge question - how does one go about finding a chiro with expertise in this area?  When I looked at the few around here, most dealt with sports or workplace injury issues.

[ktgrok]

 

 

If I were to toy with the idea - similar to the concierge question - how does one go about finding a chiro with expertise in this area?  When I looked at the few around here, most dealt with sports or workplace injury issues.

 

Ah, yeah, I'd avoid any of the ones that loudly proclaim they deal with injuries too much. Chiros can REALLY vary. I went to one years ago and sore never again, as it was so awful. They were like a used car salesman, trying to upsell me, giving everyone the same expensive treatments, etc. But years later I went to one that was recommended by some pregnant friends and it was a totally different experience. They listened, they didn't try to sell me some huge story about how I needed to do all sorts of bizarre things. They just adjusted me, lol. And said to come back in a week if i could. 

 

But I found them based on recommendations. I'd keep asking around. I'll also ask some friends, if you want, how to find a good one. Maybe there are things to look for that I'm not aware of. I lucked out with who I go to. They do back injuries, and pregnant women, and the one does sports stuff (he totally fixed my painful achilles problem in one visit....by adjusting my knee, of all things. It stopped hurting immediately) but it isn't a "pain clinic" type of place that specializes in car accidents and scamming insurance, you know?

 

In fact, lacking other criteria, I'd look for who works on pregnant women and children. Kids have a lot of ear problems so one that does a lot with kids will be familiar with ear fluid. Maybe check yelp reviews as well?

Edited January 24, 2016 by ktgrok

[DawnM]

Dh's work paid for him and me to have it.  I honestly don't fully get it.

 

I went for the fancy check up and now have a call in to a health coach who isn't helping all that much for weight loss and exercise.  She is basically telling me to do a WW type diet or just eat healthier.  

 

I don't know what else they do but I have been meaning to call because I now have some weird bump on my leg that may need to be removed.

 

I guess I will let you know.

[creekland]

It sounds more like you are looking for an Integrative or Functional Medicine doctor. Some concierge doctors are certified in that type of medicine, but some are just traditional type doctors who prefer a different type of business model for financial and efficiency purposes. Check out the Institute for Functional Medicine site www.functionalmedicine.org and click at the top on Find a Practitioner. Also, for an example of a concierge dr that follows that model to serve her functional/integrative medicine philosophy look into Dr Shilpa Saxena of SevaMed. She is in Florida so not a direct recommendation but more a model of what you may be looking for. Perhaps through her office you could find a dr in your area.

 

Meena, I finally got a chance to really look at this.  Thank you for posting the link.  In concept I absolutely fit in with it and there are some doctors on the "Find One" list that are well within commuting distance.

 

I guess the question still lingering though is if they will actually be able to come up with anything different.  I already work for a more healthy lifestyle.  With the exception of this medical stuff and the occasional time of the month, stress is not part of my life at all.  Through work and some community health events I can keep track of all sorts of basic blood numbers to ensure those are in a decent range.  Google works at giving me some extra knowledge, esp if we want to try to change something.

 

So... if I go this route (or concierge) and start all over again explaining the past 4 years (when first symptoms began) up to "now" with the latest issues emerging (it's all been progressive - and toss the radiation in there too), I suspect their medical training will lead to the same conclusions others have had. Google tells me the same things (more or less). Seeing (or repeating) some of those test results will lead to similar thoughts (since I didn't cheat or study for the tests).

 

I don't blame the doctors I've seen.  I can follow their thoughts given the same stuff they see, and one has to admit, what I feel is tough to convey to anyone.  I can understand skepticism there.  I went that route myself for 6 months or so - maybe longer (believing my body was stressed and creating problems). It made sense.  I always give my body a chance to fix things itself to not get jumpy at little things.  I know if I ever get hit with anything quick and deadly (like Meningitis or a heart issue) that I'll be toast because I'll go home to try to sleep it off first.  

 

My body has convinced me that something is definitely off (esp with the progression) and needs fixing, but when tests aren't showing much and typical symptoms aren't there... what is someone else going to do?

 

This will add in nutrition and more lifestyle deals - a good thing IMO - but I'm not sure the answer lies there since they are already part of my life.  

 

Perhaps allergy testing would actually be useful (not done or suggested up to this point) just to check on that.  Vascular testing is another "maybe" if one can get past that other symptoms aren't there, but even with my own thoughts, that (and infections) are about it with what's left to consider unless/until more stuff shows up.

 

Approaching 48 hours on antibiotics with no noticeable difference... will try it for another day or two... but I think by then I'd see a difference if one were there (that amox worked on).  Some of the other stuff is somewhat better today - totally typical after a not-so-good day.  Knowing it will get better helps me through the not-so-good days.  ;)  I just have to figure out how to get it to stay that way...

 

I will keep some of the providers on this list in mind - along with the concierge two I saw.

 

This one might be my top choice from the FM list if anyone happens to know anything about her and wants to share (here or pm):

 

http://www.cntrholisticmed.com/index.html

 

Anyone knowing other options in south central PA or northern MD - feel free to offer suggestions.

[trulycrabby]

Hello, I have been reading this thread but have not reponded until now because I didn't have any good advice to add. I do want to say that it is very easy to avoid seeing other doctors because you have heard them say the same thing in the past. However, the next doctor may have seen a similar case or have a different perspective regarding your symptoms.

 

Personally, I wonder if the radiation has damaged your eustachian tubes enough so that you have scar tissue and blackages. Then, the slightest allergy or infection could cause problems. Have you spoken with any other people who have had radiation in the same area? These folks might have had similar issues, and they could tell you exactly what to do and who to see.

[creekland]

Hello, I have been reading this thread but have not reponded until now because I didn't have any good advice to add. I do want to say that it is very easy to avoid seeing other doctors because you have heard them say the same thing in the past. However, the next doctor may have seen a similar case or have a different perspective regarding your symptoms.

 

Personally, I wonder if the radiation has damaged your eustachian tubes enough so that you have scar tissue and blackages. Then, the slightest allergy or infection could cause problems. Have you spoken with any other people who have had radiation in the same area? These folks might have had similar issues, and they could tell you exactly what to do and who to see.

 

I am 100% brainstorming in this thread (and in this part of my life), so no advice is "bad" IMO.  Most of it might end up getting chucked (as with all brainstorms), but it's brainstorming about problems (in general - in life) that lead to success solving those problems.  

 

I occasionally toss stuff out on the Hive to try to glean from other possible thoughts - esp since I've run into walls myself.  

 

And... I love your thought about radiation potentially having created scar tissue.  (No clue if that would show up on MRIs, but having looked at all the pics, I could doubt it would show up there.)  I know radiation has done horrid things to parts of my memory.  Some has improved, some hasn't.  I know I have to watch various glands for future damage.  It makes sense that it could have burned a section in the wrong place... and that would lead to just treating the symptoms as best as I can.  It would still help to discover what causes the variability.  Perhaps it's worth it to check into allergy testing.  I wonder if one needs a referral for that...

 

So... two more days to see if the amox does anything then use Sudafed to try to clear the current blockage to reset things or... does anyone have any better options?  Assuming it's related, the current blockage affects the lower left half of my face too with a numbing sort of feel.  I have to admit that's annoying, but not painful and there's no fever at all.  It just has a "been to the dentist and Novocaine is wearing off" sort of feel to it.  That's been there for a couple of weeks now.  It's not new.  It was there (and mentioned) at the last doctor appt and is part of the "must do something about it to avoid ear issues" directive.  The question is just "do what?"  What are my best options?  I opted to try antibiotics (on my own - not via dr), but if they're not working in a couple more days, skip the rest and move on to treating symptoms sooner?  Then see about allergy testing as a cause?

 

That's the extent of my typing as I'm thinking/brainstorming now... must go get started on that turkey!

[momacacia]

Concierge around here is about $1800/year, with tests on top sometimes 20% discount on tests. I'm considering going with one here, but done personally like him so we'll see how second visit goes. I have 2 friends who went with other mason concierge in town and have left her practice disappointed. No real solutions to their issues, but lots of testing.

 

I really just think today that you have to put the whole puzzle together yourself. As much as I hate saying that because I have thyroid and adrenal issues I'd love to just turn over to someone, but feel like I have to keep my brain turned on or something will get missed or not connected.

 

I will say that if you can get an appointment or two with the doc and see how you like them, and get those appointment fees applied to the concierge fee, that might be something looking into. That is what the current doc I'm looking at does.

Edited January 24, 2016 by momacacia

[ktgrok]

I asked a friend how to find a good chiro (her sister is a chiro that I like and trust). She said, "Go to the ICPA website and find one there. Even if she doesn't have kids, anyone who is certified through them will have had extra training, good professor recommendations, etc." : http://icpa4kids.org/Find-a-Chiropractor/

 

 

[J-rap]

I'm pretty sure I've mentioned this before, but we have had such great experience with Mayo.  It's like having a round table of experts (in every potential area your problems might lie) who actually work together to figure out what's going on.  I think this especially is true if it's a more complex medical situation or a mystery one.  We have used it for both.  They try and schedule everything in the shortest amount of time possible, knowing that many people are coming from far away.  So, this usually involves just one visit -- albeit extended, maybe five days, for example.

 

 

[DawnM]

Ok, I'm going to pretend I understood this... I'll admit to not having any inpatient (overnight) hospital experience since my youngest was born - then we chose a hospital that only did women's things.  He's 20 years old now.  Things might have changed a bit...

 

I like it that way (hardly any experience), so... not googling to figure it out. ;)  I'll just guess that things have changed.

 

 

I have been to two chiropractors.  One was ok, not great.  The second I truly believe messed up my lower back so badly that I am not sure it will be repaired.

 

I have no faith in them.  I am not willing to put my spine or back into any more "trials" to find the right one, if there is such a thing.  And yes, I went under recommendations from friends who swear by them.

 

Real doctors for me.

[SparklyUnicorn]

I have been to two chiropractors.  One was ok, not great.  The second I truly believe messed up my lower back so badly that I am not sure it will be repaired.

 

I have no faith in them.  I am not willing to put my spine or back into any more "trials" to find the right one, if there is such a thing.  And yes, I went under recommendations from friends who swear by them.

 

Real doctors for me.

 

I've wondered about them.  I never went to one, but I have no desire to either. 

 

In terms of back issues, I did find relief by going to a physical therapist. 

[creekland]

I'm pretty sure I've mentioned this before, but we have had such great experience with Mayo.  It's like having a round table of experts (in every potential area your problems might lie) who actually work together to figure out what's going on.  I think this especially is true if it's a more complex medical situation or a mystery one.  We have used it for both.  They try and schedule everything in the shortest amount of time possible, knowing that many people are coming from far away.  So, this usually involves just one visit -- albeit extended, maybe five days, for example.

 

You have mentioned it before, but I'll admit I never figured it would be that tough to figure out.  It's not like I'm dying (I don't think).  It seems like something misfiring mechanical"ish."  Find it, fix it, done.

 

At this point, it's an incredibly tempting idea and would be one I'd jump on if they weren't so far away.  Even with the distance it's tempting, but I'd need to figure out a time that worked and finances.

 

And then there's this nagging thought... "What if I get there and it is something simple and I feel foolish about having gone there for it?"

 

Mayo is at or near the top of where middle son is hoping to go to med school.  Since they have the lowest acceptance rate of any med school, I'm not holding my breath that he'll get in as the competition is fierce, but if he did... I'd have an excuse to be there in another couple of years, esp if it's not fixed by then.

 

The ear is getting worse today, not better.  :glare:   At this rate I'll do symptom relief by tonight and will have to decide whether it's better to finish out the antibiotics just in case there were some bad ones being affected (not creating a super bad bug) or discontinue it figuring there were no bad ones that cared about penicillin, so worthless and just killing off good bugs.

 

But for now - out shoveling snow.  Perhaps the extra motion will provide the extra needed to push through the blockage...

 

And I am thinking I'll check on allergy testing.  Even if that comes back negative, it will still give me useful answers.

[SparklyUnicorn]

You have mentioned it before, but I'll admit I never figured it would be that tough to figure out.  It's not like I'm dying (I don't think).  It seems like something misfiring mechanical"ish."  Find it, fix it, done.

 

At this point, it's an incredibly tempting idea and would be one I'd jump on if they weren't so far away.  Even with the distance it's tempting, but I'd need to figure out a time that worked and finances.

 

And then there's this nagging thought... "What if I get there and it is something simple and I feel foolish about having gone there for it?"

 

Mayo is at or near the top of where middle son is hoping to go to med school.  Since they have the lowest acceptance rate of any med school, I'm not holding my breath that he'll get in as the competition is fierce, but if he did... I'd have an excuse to be there in another couple of years, esp if it's not fixed by then.

 

The ear is getting worse today, not better.  :glare:   At this rate I'll do symptom relief by tonight and will have to decide whether it's better to finish out the antibiotics just in case there were some bad ones being affected (not creating a super bad bug) or discontinue it figuring there were no bad ones that cared about penicillin, so worthless and just killing off good bugs.

 

But for now - out shoveling snow.  Perhaps the extra motion will provide the extra needed to push through the blockage...

 

And I am thinking I'll check on allergy testing.  Even if that comes back negative, it will still give me useful answers.

 

So what.  Really.  Ya know, my mother knew something was up long before she went to a doctor.  She kept complaining of various pains.  She was too afraid to go to a doctor because she was afraid they'd tell her it was all in her head.  I said if it is all in your head then that's a problem too.  By the time she went it was too late.  Better to feel foolish than in a position of no return (or dead). 

 

 

[SparklyUnicorn]

But to be brutally honest, I too am stubborn.  I don't like going to doctors for all the reasons you mentioned and then some.

 

 

[creekland]

Better to feel foolish than in a position of no return (or dead). 

 

No... not really.  Not for me anyway.

 

I dislike going anyway for the reasons mentioned in my very first post, so if I'm actually going to override that dislike and do it I want to make darn sure it's worth it.

 

Car accident and bleeding all over?  Ok.  Worth it.  Anything else... there's a lot I can do at home and/or the body is generally good at fixing itself given half a chance.

 

I'm not always right, of course.  I gave the body 18 months to correct the double vision before finally making an eye appt to see what was up.  There was one advantage... they knew the tumor they found wasn't malignant.  ;)

 

BUT, I've given different people/doctors several chances to figure this one out.  The Hive isn't the first thing I'm turning to.  It's what I'm turning to out of frustration as I'm looking for new ideas - new ideas that tend to be panned IRL by professionals, so if I'm going to go this route, I'm on my own.  Feeling foolish/put down is worse to me than other options.

[Jean in Newcastle]

One way I've found rabbit trails to search has been by finding other people with similar symptoms to mine online.  I'm talking forum type posts, not things like WebMD.  I see what rabbit trails they've gone down - what has worked and what hasn't.  Then I look those things up on places like WebMD to check on the actual medicines and therapies and supplements. 

[creekland]

One way I've found rabbit trails to search has been by finding other people with similar symptoms to mine online.  I'm talking forum type posts, not things like WebMD.  I see what rabbit trails they've gone down - what has worked and what hasn't.  Then I look those things up on places like WebMD to check on the actual medicines and therapies and supplements. 

 

I get some of these in my searches.  I also have a couple of local people IRL I can ask about some things - they have more medical knowledge than I do, but aren't using it professionally so can offer thoughts as a friend.  They also tend to have more of my mindset of taking care of what one can at home, so they aren't put off by that.

 

My latest one I need to ask about is concerns a small blue bump under the skin on a finger.  It's been there for years (pain free), but wasn't always blue (has been for about a year though) and once in a while will ache.  It accidentally came up at my last appt.  I used it to try to describe another issue never intending on having it become the focus.  The doctor wants me to see a dermatologist, but thinks it's probably a venous lake.  My brain contemplates what will happen if I lance it myself to see if it's a venous lake.  I have no problem doing things like that.  However,  I have no idea of pros/cons and couldn't find that info on google, so will check with one of my local guys when I see him sometime this week...

 

Meanwhile... the #%& ear got worse outside, not better.  I wish I had a way to get it to punch through the blockage.  I can feel the break and fluid when it happens (dripping or gushing), but I can't make it happen (sigh).  Try Flonase again and get that experiment going or go with Sudafed and be up most of the night as it's difficult to sleep with that one?  Decisions, decisions...

 

There may be a little bit of good news though... a fairly new issue going on that I've never mentioned on here appears to be going away with the antibiotics, so that one could indeed have been caused by an infection.  I'll know more tomorrow - gotta make sure the extra exercise from shoveling doesn't get the credit instead.  Either way, I'm not discontinuing the antibiotics now just because they haven't helped the ear.  (The newer issue only goes back to Nov, so might not be related to all this other stuff.  It could be its own infection.)

[creekland]

Editing this post because I've decided to address most of this in person rather than online.

 

Leaving this in case anyone else is wondering:

 

------------------------------------

 

I'll restate what I wrote a couple of posts up:

 

"BUT, I've given different people/doctors several chances to figure this one out.  The Hive isn't the first thing I'm turning to.  It's what I'm turning to out of frustration as I'm looking for new ideas - new ideas that tend to be panned IRL by professionals, so if I'm going to go this route, I'm on my own.  Feeling foolish/put down is worse to me than other options."

 

I am NOT anti-doctor at all even if I'll freely admit disliking appts.  I have given this issue (and others) plenty of opportunities to be figured out and fixed medically.  There's been radiation, neurology, ENT, and PCP going back almost 2 years (since the beginning).  If any had worked, there never would have been any threads about it.

 

Edited January 25, 2016 by creekland

[creekland]

You might ask your radiation oncologist for further detail on aftereffects. There are plenty of possibilities...this one was layman readable...https://books.google.com/books?id=eCBfGEcZpUgC&pg=PA266&lpg=PA266&dq=radiation+effect+on+otitis+media+with+effusion&source=bl&ots=1VpPkKZniR&sig=l0Ua6JvGihVU6gRkWLqTFXSl_Kk&hl=en&sa=X&ved=0ahUKEwj31d-j98TKAhXBOD4KHYgYD0wQ6AEISjAI

 

Thanks Heigh Ho.  I caught this just as I'm getting ready to start my day (offline).

 

It might be layman readable, but I'm going to need time to translate a bit into words I know later.  (Physics/Psych/Math degrees do not require medicalese courses and the little bit I've picked up from subbing in Anatomy and from my own cwap is still at the 101 level.)

 

Actually, I'll forward it on to middle son and see if he has time to translate it for me... undoubtedly quicker if he has time for it with his classes, etc.

 

I was able to figure out enough that I think all the rest of us (non-radiation docs + my suspicions due to the timing of it) are correct that the root cause IS radiation in some way or another.  I don't know how radiation can say it's not.  They claim that due to the length of time it's gone on.  They said it was right afterward and changed their mind 6 months later, repeating that in later appts.  I'll see them again in June.

 

In the meantime... considering what's been variable isn't right now (last 2-3 weeks) and the antibiotics aren't helping with it, I'll try Sudafed today (since it's worked before without side effects) and still contemplate testing Flonase again this weekend or so if resetting doesn't work to keep it draining itself.  When it builds and breaks through draining itself it's quite liveable.  Hearing loss hasn't been an issue (I don't think - it wasn't when I had the ENT appt), and I'd rather it not become one by messing up somewhere along the line.

 

Plus allergy testing - just in case something there is a contender.  I still have to find out if I need a referral for that.  Most places here remain closed today (huge snowstorm - our road still hasn't been plowed, so I'm not going anywhere anyway).

 

If that doesn't work, then perhaps finding an ENT with other radiation experience?  If I head the tube route, it kills the water stuff I love.  I really don't want that path, but maybe it could be temporary?

 

Musing as I type again - and I need to get going with my day - but thanks for giving me some (real) things to think about while I get some shoveling and chores done.

[creekland]

Yes, tubes are temporary. They usually fall out on their own.

 

Your most likely allergy is mold. Cant get away from it where I live, but can reduce it by keepimg the house humidity controlled and the basement dry.

 

I might have to be more open to options than I'd like.  Time will tell.

 

This has had a similar variability in our house, outside of it, traveling (up to a month at a time to various locations from humid to dry), staying in motels, other houses, around animals and not, etc.  It's tough for me to imagine a stationary allergy, but I'm still willing to see - just in case.

[Melinda S in TX]

Our family doctor went concierge just over a year ago.  We pay $145 a month for our family of seven.  This is on top of regular health insurance.  We have several in our family with health issues, and Dr.G is the best help we have.  She doesn't do labs or testing in her office, but she will order them at a local hospital or lab and our regular insurance pays for it.  She does do some things in her office like stitches.  She will read things I email her.  I can text her, and she will reply quickly.  She can get us in fast.  She has access to things I don't like testing and medications.  What we pay her for is to listen to us, remember us, think doctor like about things, advise us, and order tests.  She has more freedom now than she did when she was in a multi doctor clinic setting.

[OnMyOwn]

My doctor switched over to a concierge plan a couple of years ago. I was sick at the time and I had loved this doctor. He was a great diagnostician, so I did pay the fees for a year until I was stabilized. It was very expensive. Something like $160 a month just for the privilege of having him as my doctor. But, I couldn't afford it after that. He also stopped accepting insurance. He had been my doctor for 10 years and it still makes me sad.

[creekland]

Our family doctor went concierge just over a year ago.  We pay $145 a month for our family of seven.  This is on top of regular health insurance.  We have several in our family with health issues, and Dr.G is the best help we have.  She doesn't do labs or testing in her office, but she will order them at a local hospital or lab and our regular insurance pays for it.  She does do some things in her office like stitches.  She will read things I email her.  I can text her, and she will reply quickly.  She can get us in fast.  She has access to things I don't like testing and medications.  What we pay her for is to listen to us, remember us, think doctor like about things, advise us, and order tests.  She has more freedom now than she did when she was in a multi doctor clinic setting.

 

These are things I would like too - esp combined with the functional medicine concept.

 

But for my current issues, I doubt there would be any different answers and either of the two I'm looking at are an hour's drive away (different directions).  I'll have to keep my eyes open for someone opening something similar closer to home.  However, I'm not sure we have the population base willing (and able) to support someone.

 

My doctor switched over to a concierge plan a couple of years ago. I was sick at the time and I had loved this doctor. He was a great diagnostician, so I did pay the fees for a year until I was stabilized. It was very expensive. Something like $160 a month just for the privilege of having him as my doctor. But, I couldn't afford it after that. He also stopped accepting insurance. He had been my doctor for 10 years and it still makes me sad.

 

Bummer.   :grouphug:  It's unfortunate that what works nicely for one hurts another.

 

 

Since this thread came back up, I'll toss in a little update in case anyone was curious.

 

Antibiotics haven't helped the ear at all, though I'm finishing them out for a couple of other benefits that seem to be due to them.

 

Sudafed disappointed me and was only a little bit effective this time - nonetheless - a little bit was helpful.  It didn't carry on beyond the day.

 

Tomorrow after school I'll try Flonase again just in case the seemingly connected side effects were a coincidence.  It worked well - for a day - before those hit.

 

Claritin never worked even a little bit, making me wonder again if allergies are an option or if that helps rule it out.

 

Middle son assures me he's translating the book article on the middle ear and radiation.  He's getting assistance with some of his more knowledgeable doctors.  Hopefully that will give me a "nuts and bolts" idea of what might be going on mechanically - my "most likely" thought as to the problem.

 

And mentally I'm far more in a "just deal with it" mood, so it's not bugging me as much even though physically it's essentially the same.  My schedule is actually fairly full between now and the latter part of March.  Besides school assignments, there's a trip in there.  I don't know whether to be thankful I'm not flying or wish I were to try to clear out "whatever" as happened last time.  Mountain driving might do it.  My left ear doesn't usually adjust with that either anymore.  I am planning on Sudafed to assist with mountain driving - unless Flonase works better.

 

An ideal world would have a fix.  The real world has several "deal with it" situations.  Such is life.  :glare:

 

I appreciate all those who have contributed ideas for me to consider - esp since this thread morphed a bit.

 

Getting back to the original post... concierge medicine is definitely something appealing to me if I could combine a decent doctor, similar affordable rates to what I've seen an hour away, and closer to home.   Thanks for all who contributed thoughts on that idea - and functional medicine - too.

 

And I never give up hope that maybe my body will fix itself - as it should - that homeostasis thing we teach about in school...  :lol:

 

But if life continues to progress in a not-so-nice way, I have ideas to contemplate.  I will admit it's all still frustrating, but that too is life sometimes.

[OnMyOwn]

Have you ever tried eliminating dairy? My dd had a terrible time with fluid in her ears and ear infections. Really awful to where she was having multiple ruptures and then even when she had tubes in her ears, they were useless because they would constantly get clogged, We were seeing an ent every couple of weeks to have the tubes suctioned. I found a book called Healing Childhood Ear Infections, which was written by an ent who claimed that 70% of his patients' ear problems resolved with a dairy free diet. Within one week of removing dairy, the fluid cleared from my dd's ears, and the infections stopped. She went a year without any problems and I added dairy back thinking it might not be bothering her any more and the fluid and infections quickly returned. As soon as we removed the dairy again, the fluid was gone within days.

[creekland]

Have you ever tried eliminating dairy? 

 

Interesting thought.  I haven't eliminated dairy for any lengthy period of time, but I also haven't noticed any difference between eating it and not for a couple of days.

 

I'm wondering if the underlying thought is an allergy to dairy or that dairy itself somehow feeds/causes an infection?

 

In either case, it still would have to be coupled with the fact that all of this stuff (hearing pulse included) happened shortly after radiation and never before.  I don't even recall having any basic ear infections as a kid.  I have always needed Sudafed to scuba dive - to clear my ears (both) - so there has to be somewhat of a narrow channel, but all the rest of it is new.

 

Claritin works for some people, but not all. Zyrtec may work when claritin does not. It is available otc as a generic now. Takes a while to build up in the blood and be effective.

 

I'd have to look up exactly what has to build up in the blood and what it does both pro and potential cons.  I'm that way with practically any med, but especially anything long term.  Perhaps it's a personality issue (part of the control issue problem).

 

At the moment - right now - in school - it's sort of back to normal.  No clue why.  It's just as likely to happen at school as at home or out.  I didn't feel anything pop and drain this time, but obviously it's drained some on its own.

 

Or maybe I'm lucky and the antibiotic is fixing something... or the body is fixing itself... or whatever.  There's been absolutely no change in diet or surroundings or activity over the past time period that this has been an ongoing issue.  I've even been in this room before at school - fairly often - considering it's a good friend's room.

 

Oh well.  Being somewhat better makes it easier to live with even though I know it won't last, unless I'm super lucky this time.

 

Gotta go.  Kids will be back from lunch in 10 minutes.  

[creekland]

Well, well, well... a new discovery.  (Ok, maybe I'm a slow learner.)

 

I just put two and two together that the cold weather can make it bad quickly.  I knew it could make it worse when it was already bad, but coming home from school today turned a relatively good day into a bad one in the less than 10 minutes the trip too.  Even after getting warmer here at home, it hasn't improved yet (sigh).

 

I suppose I should get earmuffs - or use it as an excuse to migrate south for the winter.

 

Turning to Google after the Hive this time since I've been catching up on here thinking it would switch back to being better once getting inside and staying inside, but after two hours... (sigh)