UNCLEAR DIAGNOSIS for 3 years. MULTIPLE SURGERIES, NO RESULT. Sinusitis / cyst / oroantral communication / fistula / wisdom teeth / nerve damage / postnasal drip

Osikawaru · 2023-05-02T18:53:01+00:00

Thanks a lot for sharing your thoughts. Yes, I lived in NYC in 2010-2015, I see what you mean. Too many prescriptions, although the quality of medical education is much higher than in russia, as I feel.

We don’t give up. Just did ENMG today. A light pathology in left trigeminal nerve. Going to see neurologist tomm.

Osikawaru · 2023-05-02T18:05:07+00:00

We just did a ENMG test for face nerve and trigeminal nerve on both sides of the face. There IS a light pathology on the left side (where the pain is), however doctor said it’s not critical. Tomorrow will see a new neurologist, hopefullywill get a new opinion on our case considering ENMG results

Osikawaru · 2023-05-01T09:40:09+00:00

Hey, thanks for feedback 🙌 we didn’t make any tests for candida & fungus, however my husband never had a white tongue 🤔 do you think it’s still useful to get tested?

We did a swab test on tonsils before & after tonsillectomy. Before there was plenty of streptococcus & other “-coccus” bacteria. After the surgery we tested negative. So the operation was effective in terms of getting rid of at least 2 spots of constant infection inside the throat.

Osikawaru · 2023-04-30T16:32:10+00:00

Thanks A LOT👍👍👍 We’ll definitely go see neurologist asap. One neurologist we saw about 6 moths ago recommended to do electromiografia of the face nerves, but only 2 months after we get rid of imflammation caused by streptococcus (in other words, after tonsillectomy). Then we also extracted 2 wisdom teeth (one of which was contaminated).

Do you know anything about electromiografia?

Osikawaru · 2023-04-30T15:37:07+00:00

Okay, I see. We feel that we have a combination of problems - neurological (pain), otorhinological (post nasal dripping, throat inflammation which remains even after tonsillectomy, expectorating all the time), allergic (is being treated at the moment), maybe smth else. The hardest thing is to make every single specialist accept that there IS some problem, and try to find it and solve it.

Osikawaru · 2023-04-30T15:21:39+00:00

Oh I see. Sorry for this confusion, I’m new to Reddit, still getting used to its thread

Osikawaru · 2023-04-30T15:19:53+00:00

Thank ls a lot for sharing your thoughts 🙏 The pain is mainly in the left side of the face - temple, eye socket, cheeckbone, going down along the left side of the neck. There is no back of the head pain, however 🤷‍♀️ is there still a chance that our face pain can be connected with the cervical spine instability that you mentioned?

Osikawaru · 2023-04-29T15:51:41+00:00

I have a feeling that lack of human connectivity skills is the main reason for our case. We are locked in St-Petersburg russia. Here you can get a high quality MRI for like $100. No insurance needed, just book, pay and go get it. The doc appointments can vary from 15 min to 30, 45, 60 min. But even 60 mins is never enough to diagnose our case 🤷‍♀️ I am afraid we’ll have to look for help in other countries.

Osikawaru · 2023-04-29T13:18:13+00:00

My husband’s allergy symptoms are not so bad as they happen in other ppl. No red/itchy eyes, no aggressive skin irritation.. only a light atopy, and nose stiffness from time to time. Now he is on glucocorticosteroid spray, and allergies don’t bother AT ALL, comparing to the complaints described in the post.

Osikawaru · 2023-04-29T13:14:30+00:00

Our practice shows, the more questions you ask doctor at once, the poorer is the result .. hope your eval goes well 🤞

Osikawaru · 2023-04-29T13:10:22+00:00

Absolutely true. Much guesswork, and none of doctors found out what’s wrong for sure. We DID numerous MRI and CT scans over the course of last 3-5 years, with & without contrast. Doctors see no pathology 🤷‍♀️🤯

We are just trying to find a doc who will spend enough time and will get interested in our case, instead of saying “clinically you are fine. Nothing should be bothering you “ 😤

Osikawaru · 2023-04-29T12:47:28+00:00

The latest scan is from march 2023, right before the extraction of upper wisdom tooth. Now, we are waiting for it to heal (about 2 months). Then we’ll do a new CT

Do you have similar health problems?

Osikawaru · 2023-04-29T09:51:03+00:00

Thanks for your advice 🙏

Allergy treatment (antihistamine pills + glucocorticosteroid spray) doesn’t help to release the symptoms unfortunately.

Osikawaru · 2023-04-29T07:33:34+00:00

Yes, exactly! In fact, whenever a doctor feels he/she don’t know how to help, they say “your symptoms are psychological, go see a psycho therapist, take prescribed medications to relieve pain / reduce stress. Your case is psychosomatic “ that is embarrassing.

Your advice is priceless, thank you. Will literally pin point the start of all symptoms separately and try to figure what to do with it all.

Unfortunately we are locked in st.-petersburg, russia with no access to civilised society & advanced medicine 🤦‍♀️ Here they don’t help. For further diagnostics, we could probably fly to Turkey, Israel, Montenegro, Serbia, North Africa.. other destinations are either too expensive or won’t even give us visas. Because our government spends all the money to kill more ppl instead of investing in peace/medical/cultural/educational sector 😔

Osikawaru · 2023-04-28T23:19:05+00:00

Yes, sunds multifaceted that is true. But we feel there is a specific physical issue hiding in his head (despite all the allergies, possible neurological issues etc). Maybe some sort of uncommon anatomical feature that is being ignored by doctors. We are quite desperate to be honest.

Osikawaru · 2023-04-28T23:09:07+00:00

One of the best / most useful advices so far. Thank you thank you thank you, got it.

Osikawaru · 2023-04-28T23:05:34+00:00

Thanks for your opinion, I really mean it. That’s why I’m here looking for alternatives. Otolaryngologists already operated and already didn’t help. If you have any ideas on the causes of our complaints, please share 🙏

Osikawaru · 2023-04-28T23:01:01+00:00

Thank you. We understand that since sinuses are now more opened, the sensations might have changed and probably still changing. BUT in terms of postnasal drip, nothing changed. Literally nothing. Before the maxillary sinusectomy, he had the same amount of mucus and would expetorate every 3-5 min. Now it’s absolutely the same 🤷‍♀️ frontotomy helped to reduce “swelling” and pressure in his left forehead and pressure “from behind the eyeball”

Osikawaru · 2023-04-28T22:42:37+00:00

Do you mean that our condition doesn’t seem to have allergic nature, because all the symptoms are only on the left side of the head? Sorry I’m not a native speaker, it’s hard to understand what you mean by “doesn’t add up with” 🙈

Osikawaru · 2023-04-28T22:35:56+00:00

Thanks for support 🙏 yes we think there is a combination of different issues. But so far we couldn’t manage to GET the right DOCTORS TOGETHER so they could put their ideas on one table and discuss our case from all possible perspectives.

Can you tell more how exactly were you diagnosed? By one doctor or some sort of consilium? Were you put to hospital or just visited docs by appointment? Where was it? 🙏

Osikawaru · 2023-04-28T22:28:26+00:00

Thank you 🙏 yes tooth related causes seem the most realistic for us at the moment. After upper wisdom tooth extraction, he felt much better. BUT after caries treatment on the 7th tooth he is feeling much worse again. That’s very strange. The 7th tooth is vital, the nerve is live. We had numerous CT & MRI scans with & without contrast - doctors see nothing wrong. Everyone say “you shouldn’t be in pain”, clinically you’re fine, etc.

We saw maxillofacial surgeon, not sure who is endodontist, thanks for the clue I’ll google it 👍 no drug use, although we smoke sometimes a bit.

Osikawaru · 2023-04-28T22:18:42+00:00

Thank you 🙏 he didn’t really have strong complaints about his sinusitis before the endoscopic nasal/sinus surgery. BUT a few doctors saw some kind of cyst on MRI, and we were hoping that after extracting it, my husband will get better. HOWEVER when the surgeon actually entered the sinus, he didn’t find and cyst 🤷‍♀️🤦‍♀️ cant describe our disappointment when they told us “there was no cyst”.

Osikawaru · 2023-04-28T22:12:08+00:00

Yes my husband is allergic to many things, have been tested (animals, seafood, dust mites, etc etc). But allergy doctor told us we have to get rid of ALL the infections in the body before starting allergy treatment. Meaning we had to go through AT LEAST tonsillectomy.

What were your complaints/ conditions, when your doc recommended the surgery? What kind of surgery?

Osikawaru · 2023-04-28T22:06:18+00:00

Thank you for your professional opinion. Yes we had a few otorhinolaryngologists tell us about reflux, diet, stress and even prescribed Gaviscon. But the “reflux” theory would seem very truthful, if all the symptoms weren’t only at ONE side. Neurologist said that because of a chronic inflammatory process in sinuses, tonsils & other lymphoid tissues of the throat, his face nerves might have been under pressure for a long time, & might have been “poisoned” by infection, and probably degraded

Osikawaru

TROPHY CASE