RResidents in Japan

Wife and I are at our LIMITS with healthcare

Hello Japan family, I apologize for the wall of text. but i am in need of help.

My wife has been suffering with consistent stabbing pain behind and around the eye when she moves it in a certain way, and dizziness since mid April. It started after we had a very bad case of seasonal allergies, and hers was worse than mine. After this, she developed some kind of problem with her eye socket which has gotten worse over time.

We have had no distinct diagnosis that tells us exactly what we do. All doctors stick to one or two solutions and don’t explore alternatives and no recommendations, some say they can’t figure out what is wrong with her. Without giving a recommendation or referral letter elsewhere.

We have been to a total of 5 “doctors.”

A GP we went to a hospital twice, once by taxi during mid afternoon, and another when she had severe pain from it at 2AM, so we had to call 119. He said it was nothing and it looks fine. They did a CT scan and didn’t know how to see problems so they come back when the ENT is there. (why do it if you don’t know what you’re looking for). After the first time we explored different places. The second time was only because it was an emergency, which apparently they think isn’t an emergency. We asked for an MRI twice and each time they refused and insisted on a CT instead. An MRI is a better option than x-rays or CTs. MRIs can create better pictures of organs and soft tissues, and it is better for us since we are dealing with soft tissues or nerve damage, compared to CT images which are better for denser organs or bones.

An Ophthalmologist who was not sure at all what was going on with her and said no, your eyes look fine and shooed her out since there was a long line.

An ENT who said it was a buildup of mucus in her sinuses, which he then drained out her sinuses. Then gave antibiotics and pain killer.

Another Ophthalmologist who wasn’t entirely sure what it was. He was focused on some scarring on her eye which was caused from heavy itching from that morning from the constant pain. We were googling possible reasons for him since he was clueless. He ended up saying since there were no physical problems, it could be neuralgia. He said maybe 5 days and it would get better. (said たぶん many times) Which made us not believe him…. He gave us some pain medicine and numbing eye drops which helped a little.

After this we found a very nice and well rated ENT in Tokyo which we called the day before and asked if we can walk in, and said yes. Got there and they immediately said they won’t have time to see us since they are full.

Luckily there was another fairly well reviewed ENT one block away. The woman (finally a woman doctor) was super sweet and understanding. She found a benign tumor in her sinuses (COULD NO ONE SEE THIS???) She said maybe the tumor is pushing on a nerve. This is because when the doctor touched the tumor, my wife felt the pain in her eye. OOOOO a ray of sunshine, maybe this is it. We got antibiotics and pain killer. She was still unsure that this was the cause of the pain, which has made my wife even more worried since there has been no “yes it is because of this” answer.

Now after all these tests, CT scans and “pain medicine” we have finally been able to make an appointment at another hospital which should allow her to get an MRI. We think this is the last step we will take until we give up. We have no idea what is wrong with her and she has been scaring me with thoughts that I’d rather not mention here. We have so many competing diagnosis from many doctors, and google just makes things worse. With all the running around we have had to do, she has had severe anxiety over the whole ordeal.

TLDR: many doctors here treat you like a number and want a quick and easy diagnosis. Common phrases we got were: Maybe, I’ll prescribe you pain killers, come back after a week, nothing is wrong, it looks fine, and it’s difficult.

All but the last doctor has spent an average of 3 minutes talking to us about this issue. None have come up with an idea for how to further investigate the problem, or test further, or schedule more tests. Not even another doctor to recommend.

If there is some insight to how doctors are supposed to be, or recommendations from a competent doctor or hospital near Tokyo or Chiba, we would really appreciate if someone could help us since I am becoming more and more worried about her mental health. So far the Hospitals and medical teams have been an utter disappointment. Her condition has not gotten better, and it is causing her mental health to suffer, and I have no idea how to help her. Please help us if you can.

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EDIT TIME. My wife was excited that people were reading and giving input that we think will help with this medical journey. She was wondering if anyone had experiences sinusitis of hay fever before have some complication because of it?

Edit 2 : Some people have been saying that we have been doctor shopping too much, also she has taken all the medication given to no avail.

We weren’t hoping for a magic cure, but when a doctor says to us, “we don’t know, here’s some pain killers,” you’d tend to think they barely tried. The only doctor that even said to return for a check up was the female ENT who found the tumor. Everyone else was upfront that they didn’t know and didn’t bother telling us to come back for more tests or investigating. Thus we decided to seek other doctors who may be either enthusiastic or more knowledgeable, since we visited different areas of medicine, and don’t want to waste time with dismissive or unknowledgeable doctors.

We will concentrate on only the female ENT, and our hospital GP, and see if we can find a translator that can help us out. It’s been hard monetarily since she and I have not worked since before golden week. Thank you all so much! :))))

36 comments

  2. From experience, you really gotta push when you want something specific, which sucks.

    I was also given the run-around, being asked to come back in a week or two to be given the same shit medication that didn’t work the first time.

    At one point, I just insisted for an MRI and wouldn’t budge and they went ahead with it.

  3. A lot of it will depend on where you are. If you can, try searching for doctors who can help with sinus or eye socket issues – at this point, don’t be bothered about location, fixing the problem is worth the money it might cost.

    Ironically, I’ve found better medical assistance in larger cities outside of Tokyo and Chiba.

  4. >We have been to a total of 5 “doctors.”

    Have you given any of the doctors time to actually diagnose and develop a plan for treatment or have you just changed doctors as soon as you don’t get the instant cure you want? Have you considered hiring a translator to come with you to explain the problems?

    Changing doctors that often says to me you’re not giving the doctors time to do their job. They’re not magicians they’re trying to help your wife, you have to give them time to actually do their job instead of just jumping around when you don’t get the answer you’re looking for.

    I suggest going to a large university hospital. Expect the doctor not to be able to immediatly find the problem because so far 5 haven’t been able to. Follow their diagnosis and treatment plan. They’re going to repeat the same tests she’s had before because you keep changing doctors and they have to be thorough which means repeating the same tests you’ve done with the other doctors. They can’t just call up and get the test results.

    Keio University Hospital is generally one of the best in Tokyo https://www.hosp.keio.ac.jp/en/. I’ve been very happy with the Tokyo Hospitals https://www.tmhp.jp/.

    But the big thing is, you’re not a doctor, follow their treatment and diagnosis plan, stick with one long enough for them to properly diagnose what is apparently a difficult problem. I understand you’re worried about your wife and want her to be out of pain but don’t be so impatient.

  5. I’d go back to the one who found the tumor and as about removal. If she can’t, she’ll give you a referral to someplace that can. Have your wife finish the meds she got from her, then go again. If she also has a sinus infection, she needs to finish the antibiotics. If people are giving you referrals to specialists, take them! It’s a good sign when a doctor admits they’re not sure and try to refer you. Right now (and I’m stating what it seems like from your post, I am NOT being critical!) is that you’re going from place to place a bit randomly,and none of these places are allied or connected in any way. Your wife will have to keep explaining over and over to each new doctor, who may all have different impressions of what it may be. That alone is stressful.

  6. ” A CT scan is better for showing bone and joint issues, blood clots, and some organ injuries, while an MRI is better for inflammation, torn ligaments, nerve and spinal problems, and soft tissues. ”

    MRI is your answer. Should only cost about 30,000 yen max.

  7. Hi, I’ve also been given the absolute run around by the medical system here. Different problem, but I’ve been sick since last summer. Like your wife, I, too, have not had the most pleasant thoughts. Kind of hard to when you can barely function and are in some type of pain or brain fog 24/7.

    For the mental health bit, and also even for coping with the pain and dizziness, if you have the money, consider therapy. And/or meditation. It sounds like cuckoo, but pain is a feeling, so improving your mental health does play a role in reducing pain. Look up pain science.

    For the physical health bit, definitely go to a large university hospital and list down what you’ve done so far so that they can skip retests unless absolutely necessary. Bring an interpreter if your Japanese is not great. Or if you have the cash, go directly to out-of-insurance places. They tend to think a bit more outside of the box. I have had zero luck so far even at a university hospital and they even told me it was just anxiety… when psychiatrists don’t think I have it. YMMV, but that’s been my experience over the last year.

    (Also, I obviously am not a medical practitioner and can’t diagnose, but departments I recommend you check: ENT, ophthalmology, neurology, orthopedic.)

  8. I had a year of undiagnosed, chronic pain for two years that doctors couldn’t identify. I went to the same hospital and saw different doctors in different wards, but nothing conclusive. I was finally diagnosed with gout after I asked to rule out RA.
    Now, I have appropriate pain meds and I know how to manage my condition.

    I learned that when the medical system has no idea what’s wrong with you, diagnosis and treatment can be an absolute journey, but having a history and a file from one hospital can help doctors. Bouncing from doctor to doctor, clinic to clinic isn’t going to help.

  9. I remember this one time my father (Japanese but lives overseas) did a full health check up here and the doctors told him that he had tumors.

    Then he traveled to South Africa to visit my sister and did a more extensive health check up there and they found absolutely nothing. 👁️👄👁️

  10. Consider trying to get a young(ish) doctor if possible. There’s no requirement in Japan for docs to continue studying, so a crusty fucker could have medical ideas that are literally decades out of date.

  12. Had this happen in my family. Father in law was getting the run-around from the local doctor, who he has been to for decades. The quality of the clinic had been rapidly declining and you could tell they were trying to maximize profits with the vaccine. We were 3rd in line one day and they said they were too busy, sent us home and would call when ready so not to make us wait inside. I had a feeling they would call us at closing for the morning.

    I was right. Waited 3.5 hours at home and got called in right before they closed. We could see the staff closing the blinds and locking the front doors. Finally after enough push and shove, we got the doctor to write us a recommendation for another hospital after a couple months of no progress.

    My father in law ended up having stage 4 stomach cancer.

    Be polite, but be firm in what you want. It’s your health at the end of the day.

  13. As a woman, I tend to only see female doctors in Japan now. They likely had to work harder to get equivalent degrees, and they tend to listen to female patients with a much more open mind. There was a scandal where a medical school admitted to requiring higher scores from female applicants than male applicants. That and many years of poor experiences with male doctors put a pin in the issue for me.

    Find one good female general practitioner for regular check ups and ask her for referrals. You need referrals to get into the good clinics.

    I hope your wife feels better soon.

  14. I’m not a doctor, full disclosure, I’m just sharing a personal experience here which may possibly be helpful (but absolutely rely on everyone more qualified!)

    When I was a student, I suddenly got a watery eye. It wouldn’t stop streaming. Every now and then, I would have severe acute pain, for a day or so. I went to my university doctor, who said it was probably an infection and gave me antibiotic drops. After two weeks, I went back and explained the problem was ongoing, and they scolded me for ‘treating the university doctor like my usual doctor (I didn’t know there were any restrictions or rules? It was only the second time I’d ever been in three years.) But the experience, combined with final year exams, meant I was scared to go to a doctor in case I was wasting their time or resources, and got through my exams.

    I learned to just..live with the problem. One day at the cinema, I absentmindedly dabbed my eye with a fingertip, and felt a really odd sensation. I pulled a full, long, head hair out from behind my eyeball. It turns out the recurrent pain was from it moving around, irritating my eye, inflammation and my body fighting various infections.

    It’s not something which would have shown up in an exam or scan of any kind. Maybe worth keeping in mind alongside other possible causes.

  15. Choose one doctor you liked and stick with them, otherwise you’re just going back to square one all over again (5 times in fact). The nasal cavity is very difficult to diagnose and there are a multitude of things that could be happening. CT scan is standard, and an MRI has no advantage over that in that area, it would be a waste of time and money. And stop Googling or you’ll go insane.

  18. I have a severe post viral illness similar to Long Covid and I can only advise you to THINK FOR YOURSELF. I wouldn’t be in my current position if I had done that.

    Try to Google and find studies or case reports and make a plan by yourself if it has a significant effect on quality of life.

    Medical ignorance seems to be a worldwide thing unfortunately.

  19. I cannot begin to tell you about my own horror stories. “Doctors” here are complete idiots, with only a few exceptions.

    A few people have told me Keio has a good university hospital, but I never went there myself. If you can afford it, from what I hear you’re better off going to Thailand for some real doctors.

  20. Btw, there are free over-the-phone interpreting services. If you want the numbers let me know and I’ll look them up for you.

  21. I had to cry and say I was missing two or three days of work each month and I was afraid I’d get fired. Which was all true. Try not to gaman when seeing a doctor.

    Question for the general hive mind: I’ve read that when you are denied a useful diagnostic test in the States, you should ask the doctor to put in your case file that you asked for a test and was denied it. Would that work here?

    I also seem to find that doctors are very much into their own fields, and don’t know much outside of it. They won’t recommend another doctor in many cases (anecdotal). I’ve had better luck with women Drs and younger Drs. Once in a while, there’s a good mid-career male doctor, but they tend to be busy.

    My town has a public health office where you can consult with a nurse and at least figure out the specialty you need. Sometimes they’ll hint you away from lousy doctors.

    I hope the MRI is successful at giving you some answers that prove easy to fix. Glad you are advocating for your wife.

  22. This is going to sound dumb but it’s easy to try and doesn’t hurt … have you tried massaging the neck and shoulders with a tennis ball? I find when I’m breathing bad air or in pain my neck and shoulders tense up and give me a headache and sometimes even make me dizzy. Again not to minimize what you’ve been thru, but sometimes it doesn’t hurt to try something easy and non damanging

  23. I have heard good things about Sanno Hospital and St. Luke hospital from relatives and friends that had to go there. Since they’re hospitals, it’s easier to get a referral to another department if say you want to check multiple things (i.e. ENT, opthalmology, neurology, etc.). Their doctors either speak English, or use a medical translator from the hospital.

    I have some recommendations to ENT, ophthalmologist, and neurologist that I regularly visit. You can DM me for more info.

    But my experience with any medical system so far is that you have to follow up and push for further testings if you believe that to be required. I know it’s frustrating because it seems to be their job to tell you what’s wrong, but unfortunately except for testing for everything, they’ll have to get your input before they can narrow it down.

  24. I will say in OPs defense that in Japan, having such a variety of private clinic-businesses, there are bound to be better doctors than others. I went to a doctor who first said my symptoms indicated I could have a medical condition that, due to my age, was unlikely, so he gave me a medicine for the symptoms that did nothing for me. Went back a week later with the same symptoms, gave me another kind of medicine for the symptoms, did nothing for me. Went back a week later with the same symptoms. Said again that it could be the medical condition he mentioned the first time, but not probable. Went back a third time with the same symptoms, was given another batch of medicine that did nothing for me, and decided not to go back again. Ended up going to a big hospital I usually go for my yearly checkup, talked to the GP, got sent to their specialist who said that it was almost certainly the medical condition that the first doctor had mentioned, which though not common, fitted the symptoms perfectly, got me tested straight away (a little bit uncomfortable, but nothing too bad) and bingo, that’s what it was. Had specific medicine given to me for that and symptoms were over in a week. So I do get people getting frustrated at the (sometimes) different quality of treatment you get depending on the doctor you visit.

  25. This isn’t for everyone but if you have the means, the high-end ningen dock checkups are extremely through and give you a thick booklet with data that you can take to any clinic. And they can refer you to competent specialists. They scan with the latest cancer screen methods and some of them let you add experimental options a la carte. They’ll likely have a course with a full body MRI, chest MRI, and a head MRI. Sleep drugs for the stomach camera if you request it. When the results are in, there are follow-up appointments. It’s expensive but probably cheaper than a bill for a stubbed toe in America.

  26. My first instinct was to request an MRI and it seems like that is happening. My local ENT was great to me for an ear issue and, before he realized I know at least the non-medical terms in japanese, did his best in English. I could reccomend him for normal cases, but I think this is beyond that

    I used to work in IT in oncology in the US so I have a bit more insight than the average person, but not a ton. One cool thing, technologically, is that there are a number of tumor/cancer markers that can be found in things like urine samples. I had my yearly, required health check and for about 3500 yen, they ran a bunch of tests. Since I’m a male, PSA was one thing they were hunting for, but this doesn’t apply for biological females. However, there are still cancers that can be found in women as well. That may be worth checking

    Additionally, get copies of all your scans. I had an MRI/MRA for frequent, painful headaches. Even if you don’t get good answers from the docs, you can use those scans to get second opinions. You can even try talking or sending to docs in other countries with experts in the area for more advice. Since you already have the films, you’d only pay for the interpretation

    I know this isn’t great, but I hope it helps you all

  27. Honestly…. Doctors here are just not that competent. I often feel like they just try and do the minimum.

  28. This will probably be lost in the comments…but here goes anyway.

    In general, modern medicine isn’t great at finding the cause/source of an issue and focuses on treating its symptoms. Sometimes it really doesn’t matter because given time the body can heal itself if the immune system and pain is kept in check. But, sometimes it is very unlikely or maybe impossible.

    Whenever you visit a doctor for the first time, they will usually all do the same thing. Give you a broad spectrum antibiotic and see what happens. The reason for this is it rules out the majority of bacterial infections. It’s also not really good practice though due to the potential for causing resistant bacteria strains. If you continued going back to the doctors when their prognosis had no effect, they would have likely done more tests. Doctors in Japan prefer you to visit often as they can bill insurance. However, there are a lot of braindead quacks that just hand out pills like candy and try to make as much yen per hour as they can. It can be hard to navigate this minefield in medical care.

    Best advice regarding your situation, stick with the “good” doctor you found. If she helps resolve the issue, you may even ask her if she knows a good internalist or someone since your “new to the area” and are having trouble finding a trustworthy doctor for future reference.

  29. You have to be extremely persistent and also trust your feelings. I had severe stomach aches and fever during high covid, got admission letter to the hospital for a CT scan. The receptionist completely freaked out because i had fever (the front gate measuring temperature let me in…), waited around 1 hour, fainted almost from pain, finally got the stupid CT – turned out I need life saving surgery. At least that went well 🙃 before I go somewhere, I google a lot, I challenge the doctors, get a different opinion if needed, etc.

  30. No solutions for you but I will say you’re not alone. I’m seriously having some PTSD reading your post.

    My wife had a massive rash outbreak a couple years ago (eventually diagnosed in America as a rare immune system disease that isn’t even recognized in the JP literature yet) that involved 5 different doctors, 3 of them visited multiple times over several months, and we ran into many of the issues you identified. Multiple times doctors just threw up their hands, said they didn’t know what it could be, and suggested we find another doctor to go to – no recommendation/introduction letter, no suggestions as to possible other lines of investigation, nothing. I sat in the room with a couple different doctors who /just/ told her they didn’t know what she had. No really, that was it – they said that, then sat there quietly, waiting for a reply from /us/. When she asked ‘okay, what should I do then’, they did the stuff you mentioned – ‘well, it’s difficult’, ‘I can give you some basic pain pills/antibiotics and you can come back if it’s still bothering you when you run out’ (but if you ask ‘okay, and what will we do if they didn’t work’, you’re right back at the ‘well, it’s difficult, <waits on you>’), etc. Finally one doctor did this routine until my wife burst into tears, and then seized on the opportunity to suggest that maybe my wife’s rash was all mental, and how was her mental health, and maybe she should try getting a psych eval. (Before you ask: this was a doctor at a large hospital and was in her 30s, so checks all the boxes suggested in the thread.)

    At point, we shelled out several thousand dollars to send her to the states and paid out of pocket to get her treated and diagnosed, because she really was having serious depression since she couldn’t get the treatment she needed. We’re still trying to recover financially but at least we’ve come out the other side. Coming from the US, it’s almost impossible to get a doctor to ‘give up’ on your case; they will keep suggesting less and less likely diagnoses and testing for them until they run out of options, and at that point they will try to refer you to someone else. Just conjecture, but possibly a result of how horribly they can be taken to the cleaners over malpractice if you can argue convincingly in court that they didn’t do everything in their power to help you.

    I’m still at a loss as to what to do if anything like this happens again. I guess I’d beg one of the friends I have with a Japanese spouse to explain what Japanese people do when the doctor pulls this. We got the same playbook, consistently, from multiple doctors, so Japanese people MUST get this same thing at the doctor – there has to be a way the patient is ‘supposed’ to react or things they know to say, to move the conversation forward and get the tests/treatments started?

  31. I had a sharp, debilitating pain in my eyes during allergy season. I had seen string-like things on the surface of my eye and had even pulled them out. I assumed they were scraping the surface of my eye and causing the pain.

    I went to an eye clinic and after a brief examination, they told me to wait in the lobby with an info pamphlet. I slowly read it over to the best of my ability and realized they had given me a pamphlet on floaters. Harmless, painless, inside-part-of-the-eye floaters.

    I had told the doctor there were strings on the outside of my eye ball that I could pull out and that I couldn’t open my eyes due to the pain. They told me they were floaters.

    I had to go back in and tell them, “No, these aren’t floaters. I know and have floaters like many other people do. What I have is PAINFUL and on the OUTSIDE of my eyeball.” An impatient nurse flushed my eye (pretty uncomfortable but I was down for almost anything at that point) and I was prescribed anti-mucus allergy medicine and strong eye drops.

    TL;DR I had to insist the doctor was wrong and only then got appropriate treatment.

  33. One of my kids was diagnosed with a lung issue after one doctor gave us useless medicine. The doctor that actually helped us was that previous doctor’s father who said “yeah, he doesn’t know what he’s doing with kids. Just see me next time”

    Both doctors at the same clinic. The father is the owner. The father is nice and all but it doesn’t give us confidence when he trash talks his own son

  34. “She was still unsure this was the cause of the pain.”

    OP, this is totally normal in medicine, and a good doctor is not going give you an automatic 100% confident answer based on one observation. She has a good guess and now wants to see if that informed guess is true. The medication is part of testing whether a hypothesis is correct.

    Even if you were to walk in with sniffles, it can be hard to tell if it’s caused by a virus (flu) or bacteria (cold), so you prescribe medication for one and if it doesn’t work, you know what didn’t work and try the other.

  35. It seems like possibly a neurologist could help too, could this be trigeminal neuralgia? Migraine attacks? And no, this does not sound like an emergency situation, it sounds like something that needs to be followed and worked up outpatient. Most hospitals won’t do an MRI in the ED and it’s more likely for them to be done outpatient than in the hospital

  36. I also don’t really think repeat antibiotics are going to help at all

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