IANADoctor, or "Medicine - how does it work?"

Everything else
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Figured it would be good to have a nice spot for random medical stuff for people to drop pearls of confusion, wonder, experience and knowledge that aren’t COVID-related.

As for mine at the moment, my aunt has cancer which required the removal of much of her tongue today. She’s on a feeding tube for obvious reasons. The larynx and esophagus weren’t touched, but the odd thing is the doctor told my parents he’d be “presenting her case” next Friday and “wasn’t allowed” to talk with her until then and therefore asked for him to relay the information to my aunt.

I have no clue wtf is going on, but that sounds suspiciously like lawyer-speak. Has anyone ever had a surgery with a doctor who responded in such a way?

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I can’t really answer your specific question in the post, because I’ve not encountered something exactly like that before, but as to the “how does it work” in your post title, as someone whose: dad is a doctor, girlfriend is a resident, her dad is a doctor and her mom a nurse, and has several other family members who have been in and out of the medical field, the answer seems to be “pretty good for acute stuff and middling to not really very well at all for lots of other things”. My general impression is that if the stuff that is inside of you is threatening to come out, they are very good at fixing that. Most chronic things or things with a cause that’s nebulous in the slightest they pretty much can just go ¯\_(ツ)_/¯

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Doctors often have weekly multidisciplinary conferences, especially for cancer patients. The patient’s doctor will “present the case”, and then all the other surgeons, oncologists, pathologists, radiologists etc will give their opinion. Then the patient’s doctor does whatever they were originally planning to do anyway (just kidding!)

So presenting cases is pretty common. But I’ve never heard of a conference where doctors weren’t allowed to talk with patients beforehand. That does sound suspiciously like a legal issue or other damage control mode.

Alternately, he really wants to know what his colleagues think before making a plan, and “not allowed to talk with you” actually means “want to get more info/approvals before talking to you”.

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Thanks, guys - good info!

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Yea that is an extremely odd way to put it. A bit callous to be honest.

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Medical oncologist here.

Original post story sounds very weird. Wonder if there was some communication/misunderstanding between the doctor and the patient. Was it really the doctor that said that? And not a resident? (it is first week in July…).

Tumor board/conferences are common so not being able to talk to a patient prior would really make things a lot more difficult.

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I wonder if there was a COVID issue? Maybe they were running out of hospital beds and had to ration them out? I.e. maybe they had to decide who deserved the hospital bed more, but didn’t want to tell the patient until the final decision was actually made?

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Would it be OK if I asked something here?
The tumor that was removed from my spine. Originally we thought it was a Meningioma. Then during surgery they thought it was a Schwannoma. Pathology originally went with this but something didn’t add up like the consistency of the tumor was wrong, so on a second exam they found dark pigmentation. Pathology has now gone back and changed the diagnosis 4 times. The final consensus is it’s a Melanocytoma or Blue Nevus which is very rare for being inside the spinal cord since they are optic nerve and dermatological tumors.

I’m having some worrying symptoms that may indicate the tumor cells which were left behind are regrowing. I hope it’s just the angry nerves and muscles that have been plaguing me since surgery are replicating these symptoms as I still have complications that have not relented. But if it is re-growing I’m wondering what my options are. Is targeted radiation a relatively safe treatment? Before I had surgery I had one neurosurgeon state emphatically radiation was absolutely off the table and another said it was an option. So I don’t know what to believe.

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I’m sorry to hear that you’re going through all of this.

I can’t really give specific advice. As a general rule for rare neoplasms I’m in favor of a patient receiving treatment at a large center usually an academic cancer center will fit that bill.

Whether radiation therapy to a particular area is a good treatment option ultimately is the decision made by a radiation oncologist. Type of malignancy, likelihood of response, anatomic location, likelihood of toxicity to nearby normal tissue, alternative (surgical/chemotherapeutic) treatment options, overall health of the patient, are all factors that play in that decision.

Radiating a portion of the spinal cord itself would would require careful consideration and a radiation oncologist would play a key role in that decision. And ultimately, radiation oncologists are the folks who decide yes/no on whether a patient receives radiation therapy or not. A high quality MRI of the area would be an important piece of data particularly as it sounds like it isn’t known whether recurrence has happened or if it’s post-surgical changes.

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Thank you. I have an MRI scheduled in 4 weeks, but the last 2 post-op MRI’s have just showed a blurry mess. I hope if the inflammation is down and I’m able to hold still enough they can get the sharp imaging that’s required. My last MRI took nearly 2 hours. It was a challenge to get through.

I had surgery at the University of Michigan. It’s several hours away but I choose it because I felt they could do a better job than here in town.

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Michigan is a great place. I think you’re in excellent hands there.

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Mini bump.

Apologies in advanced for the long winded post.

TL, DR: Really bad cold for the past six weeks and/ or some kind of allergy and my ‘new’ physician isn’t doing shit. What’s my next step?

Over Easter weekend, I got a cold (?). Started out with a very bad cough, sometimes lasting as long as twenty minutes at a time. No broken ribs but it did trigger my gag reflex. The only thing I found to control it was night time cough suppressants (Robitussin, Sudafed PE, etc.) I ended up taking those around the clock every four or five hours for close to a month.

In the meantime I paid a visit to the walk in care a week into this after my right ear became blocked and they advised Flonase/Sudafed/Claritin since my lungs were clear (and yes, the Covid test came back negative.)

I decided to become a patient there since I no longer have a primary and, mostly, because this is the time of year when my cluster headaches might start and I wanted a physician who’d be able to prescribe stuff if they started, but I digress. I still had the cold, so he put me on a ten day antibiotic regimen. That didn’t help, still had the cough. Soon after, both ears become blocked to the point I could barely hear anything, and on top of that I’m now getting two-three (at least) sinus headaches a day. (The cough however has since subsided)

Back to the doctor. He put me on a five day treatment with a different antibiotic with instructions to call back if it didn’t help. It didn’t help, I called back. He told the nurse to tell me to take … Flonase and Claritin. Like WTF do you think I’ve been doing for the past six weeks? I was told I’d get referred an ENT doctor but so far, crickets. And I still can’t hear shit.

Maybe there’s nothing that can be done, I don’t know. If that’s the case, fine, at least tell me that. If it’s an allergy it’s new since I’m not knowingly allergic to anything. There hasn’t been any effort to find out if this is an allergy either. This never ending cold sucks and it cant’ be normal (I don’t think.)

At a loss on what to do. Just go see a different doctor somewhere? Argh.

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I would definitely try to see an ENT. How to go about it depends on your insurance. Sometimes you can make an appointment yourself if the ENT is in network. Sometimes you have to get a referral from your primary care.

I would call your clinic up and remind them about getting you a referral. If they still can’t get their act together, call your insurance company and ask them how to go about it.

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I’m not at all sure this will help because of the ear involvement, but have you tried any sort of nasal irrigation? I despise gravity-fed neti pots, but it would be cheap to try to see if it helped at all before making more of an investment (assuming your nasal congestion won’t prevent you from using it).

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Thanks. I have a PPO and can self-refer, but I thought it’d be better if I could get a referral anyway. It does feel strange to me to pester a doctor’s office but I guess I need to. :/

No, didn’t even occur to me. Probably worth a try, thanks.

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Make your own ENT appointment, then ask PCP to fax relevant notes, or if they actually have a referral letter, get that (just to detail your condition).

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I work at a doctor’s office, and you should never feel bad about pestering one. Most offices spend their entire day running around putting out fires, and, unless you’re on fire, you won’t get the attention you need. Also, any given person is probably not aware of your entire situation so you need to politely, but firmly, make sure they address your concerns.

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If you use a netti pot (and yes, they can definitely be helpful), use distilled water, not tap. Overabundance of caution, maybe, but the idea of nose ameobas makes it easily worth the time and expense of distilled in my book.

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Always.

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Thanks everyone for the feedback, appreciate it!