22 Yr. Old, I Feel Like I’m Dying, Someone Help PLEASE Sinus+ Systemic

Hey guys, I need some help or some opinions please; I don’t know where else to go. I’m sorry in advance, I will do my best to make this easy to follow.

Edit: sorry, this may be a hard read but I will list all my symptoms + pictures at the bottom as I forget to mention certain ones.

Roughly 5 years ago in 2015, I had broken my nose which created sinus problems. I went to the ENT that year and was told I would need surgery. I had dismissed it as nothing despite me being more congested than usual. It was very much an issue for me then, but nothing in comparison to what I’m experiencing now.

Beginning of summer of 2016 (may) I cracked my chin open on ice (skating) and had a bad concussion. Later that year in the fall, I had passed out (dehydrated we think) after the gym and hit my head pretty hard (fell off a tall kitchen barstool, hit my head on concrete floor with wood coating). Hard to the point that I did not know my name, who my roommates were, where I was, what happened etc. I think you get the point. This required a trip to the ER. After around 6-7 hours I believe, I ‘woke’ up.

In 2017 I had dealt with depression and anxiety + sleeping issues (not sure if its relevant but I’m including everything). Later this year during late fall is when I experienced the first time, I passed out causing dizzy/lightheadedness (before collapsing). I got out of bed and my hearing changed to ringing and other uncomfortable noises reducing my hearing to around 75% (everything but those noises were were muffled). My vision became static such like the grey static T.V. screen.

In the beginning of 2018, I had gotten mono despite me not putting myself in position to be infected. All I can say is I had become a homebody and this was University #2; Xbox and Netflix was basically my life besides school. Then shortly after that, I had gotten the flu (clinically had both mono and flu simultaneously). I felt like complete st; a new level st. Ever since being diagnosed with those illness’ I have never felt the same; more specifically, my nose never returned to normal after being ‘clinically’ cleared of mono and the flu.

I have always been prone to sinus infections my entire life (my father and grandmother also). (I have taken countless courses of antibiotics throughout my life). But then, what my sinuses had become were unimaginable (and still continues to ‘wow’ me to this day). I was and am practically walking around with a sinus infection. I have had plenty of sinus infections throughout my life but this was by far worse. I had spent the rest of 2018 in hopes I would return to normal (dropped out of college to train for navy). Obviously, this never happened.

Now it’s 2019, I have met the love of my life and I couldn’t be more thankful. (I would be dead without her).

In April of 2019, I had a turbinate reduction (outpatient, hour long procedure, I think radiofrequency removal?). This did not help, it made everything way worse. Very depressing as I was very hopeful.

Only my girlfriend understood what I was going through, not my parents, friends or doctors. Everything was basically dismissed because I “looked fine”. Since I was living at home for such a long period of time, I had to get a job; I started to do landscaping (I used to be very active, also this allowed me to ‘clear’ my sinus’ and not worry about the noises I make when doing so). Please keep in mind, my nose/sinuses are progressively getting worse and worse.

In August 2019, I was hospitalized over night because I had cellulitis on my leg; to explanation of how I got it.

It’s now September of 2019 and I am so fed up with life because I literally have ZERO quality of life. I called the ENT I originally had seen in 2015 to try and concur this. He ordered a CT and did a exam of my nose. I definitely needed surgery he said. I cannot remember the finer details as this crap I’m dealing with impairs my ability to think; I’m in a constant fog, I’m trying to provide all context I can remember.

In October of 2019, I was hospitalized for 3 weeks, got no answers. I had fluid in both legs (they drained it, it was dark, they couldn’t tell me what it was..) also have a cyst in my pelvic area; again no explanation. I could barely walk.

My surgery is now set to January of 2020; but my ENT cannot do the surgery because of personal priorities. He referred me to his colleague (internal sinus). I at the time thought he was great for it.

I do not remember the exact name of the surgery I had but it was a joint surgery. One dr. for my septum and the other dr. the internal part.

I was extremely hopeful that this surgery would be the answer to all of my issues but I was wrong.

The surgery took 5.5 hours and the internal sinus doctor was caught off-guard by the number of polyps I had as well as dark mucus “the consistency of peanut butter”. I was in a lot of pain when I woke up, they said the first think I said was “I feel like someone hit me in the face with a brick” of course I don’t remember that.

One thing that really bothers me and confuses me is my polyps, peanut butter mucus and perforation were surprises to the doctors and not seen before operating on me (CT). Also, them not being able to see it with the endoscopic camera they put in your nose during visits. Just makes me question their competence.

Now post op, Covid became an issue; hindering me being able to be seen by my ENT’s. I was in contact mostly with the internal sinus dr. because that’s where all my issues were coming from. During the few follow-up’s I had, we discussed my progress and treatment; also, numerous times on phone.

I could tell he did not care and just wanted to get rid of me. He made false remarks in my ambulatory summary’s claiming “I had not started my nasal irrigations or budesonide”. Which was completely false; I had called him multiple times for refills on my budesonide despite him asking me every time we spoke “did you start your budesonide irrigations?” This was very frustrating and aggravating;

On my final visit in later April, he said and I quote “your nose looks pristine”. I cringed in awe when I heard that because I’m spitting nasty dark gunk out that’s coming from my sinus (not lungs, snorting the mucus out, can’t physically blow nose – nothing comes out). He has even seen pictures and still dismisses me as healthy. I was straight forward with him and told him how I felt about how he has been treating me (not just my illness but as a patient). And that was the last time I spoke/saw him. Despite him dismissing me as nothing was wrong, he did prescribe antibiotics back in march (this is my 4th-5th round this year, in 2018 I had around 15+ courses of antibiotics and 10+ courses of prednisone/prednisolone). This surgery was supposed to eliminate the need for antibiotics and steroids.

Please also keep in mind that I sound super sick and congested (also I have not been able to blow OUT of my nose since 2018 mono/flu).

I now seeked other ENT’s from two other well known hospitals. They both said everything looks great “a lot of tissue removed”. One also said “you may just have to live with this for the rest of your life”. I got agitated because I wasn’t like this before and I know how I can and should be (how I was before all of this). He was dismissing it (as like the other doctors) as I had no issues going on. I think he simply didn’t know what to do or where to start; incompetence is how I should put it and that goes for all the doctors. Because it is obvious by the way I sound and the crap I can spit out. No clinically “healthy” person should be getting dark nasty thick mucus from your sinus; I know it can be normal to have discoloration but I know the difference. This is very dark and very thick. NOT NORMAL.

I then went to my GP and he ordered a CT scan. I forgot to add, the internal sinus doctor that said my nose looked “pristine” said “you do not need a post op CT scan”. Me and my girlfriend were like WTF.

He (and every doctor) is aware that I have foul sour, musty smells. Both are different smells; I even get a strong smell of dehydrated urine at times. (I will list all of my symptoms; I keep forgetting to mention them). They can last couple hours, to days, to weeks. It makes me very nauseous. It seems to get worse if I get a glob/plug of mucous out or if I’m simply more congested than usual.

I then went to my GP to get a new set of eyes on this situation and he ordered a CT scan. He was not able to provide much help but the CT did help. I then went to a private practice and when he saw my CT he said “your nasal valves are collapsed; you have a perforated septum and a sinus infection”. He did mention other things like thickening of the mucosa but I cannot remember word for word so I’m not going to try to butcher it. (My nasal valves were supposed to be fixed in surgery; the perforation was news to me… don’t know how my surgeons missed that

I now get put on 3 weeks of Augmentin. During the time of the antibiotics, I did not notice much improvement. But after finishing them I did notice they suppressed (only a little) my symptoms (I still felt like death while on them). Upon finishing them, I was feeling even worse. The best way to describe it is I have a baseline. Taking any antibiotic at all makes everything worse after the fact; it now takes months to get back to my baseline feeling that ‘type’ of crappy.

I also forgot to mention that any steroid I take is not as effective as it used to be. They just make me feel like crap and affect me negatively.

I had also seen an allergist (everything negative + controlled test), Cystic Fibrosis doctor, cardiologist dr. and a doctor to see if my crystals in my ears were in place. I was referred to the last 2 doctors due to my lightheaded/dizziness (passing out). Everything checked out fine. I did a “full panel gene test” for CF and it came back fine. They want me to do a tilt table because they “don’t think this is sinus related”. What completed BS.

I have seen rheumatology (GPA, EGPA – Churg Straus) and infectious disease (I’m concerned about Allergic Fungal Sinusitis). Both think I am fine despite some abnormal tests such as ANCA and eosinophilic %/count, cloudy urine with protein. There are some others I cannot think of but I will try to include pictures of results.

I have also seen a new internal med doctor who put me in contact with said departments in last paragraph ^^. I feel I’m being overlooked, tossed aside; lost in the system. Because still, no answer; I’m told “yea we’re not the right place for you” basically… I feel like I’m dying every day; I am worried I’m going to get to a point of no return. I’m 22, I shouldn’t be feeling like this. It’s not NORMAL.

I am very hopeless and honestly scared. I feel like whatever is going on is progressing because now I am experiencing systematic issues such as; ice cold hands and feet (fuzzy socks on, two cashmere blankets, down comforter), pain in hands and feet (even arms and legs), minor “broken blood vessels in my hands” (even though I have been in bed ALL YEAR; anything and everything messes up my nose), weird small painful lumps on hands/fingers/feet, sharp pains in certain spots in my head (not headache, not migraine, a stabbing pain), extreme eye pain, and much more I will list.

I can’t even enjoy a movie anymore because of how I feel now. This is very debilitating; I never in a million years thought anything could be so life changing. I know im leaving a ton of stuff out so if there are ANY questions PLEASE ask me; I will provide anything I can.

Here are a list of symptoms I currently experience very commonly; some more common than others but they all happen too often. Im 22 years old, this should not be happening.

Symptoms

Head

● Severe headaches

● Deep head pain and neck pain

● Severe dizziness (legs shaking, eyes get spotty, sees black like tv static) diminished hearing with ringing (seizure?)

● Passing out

● Always feels foggy in head

● Pins and needles in face (numb)

● Severe pressure in face, forehead, and eyes (around the eyes)

Ears

● Popping

● Clogged

● Severe internal Itching (cannot scratch)

Eyes

● Pressure behind eyes and feels like eyes are bulging out

● Bloodshot

● Eye popping (like a knuckle)

● Pain in eye

● Itchy eyes

● Eye Problems (back in 2016 blood vessels were inflamed)

● Spots in vision with flashes of light (more visible when severely congested, or when I am able to move mucus or spit something up)

● When air goes in my eyes it gets trapped behind my eye and I feel intense pressure

● Feel intense pressure behind eye when I tear up

● Feel pulling behind eyes when clearing nose

● Face pain around eyes (eyebrow area)

● Getting worked up/mad causes pressure/pain behind my eyes/eyebrows

Mouth

● Pain/pressure on the roof of mouth

● Sore throats

● Itchiness in the throat

● Difficulty swallowing

● Hard time tasting food

● Weird taste in mouth/ bad breath/ taste blood

● Dental irritation and pain (gums; directly above teeth)

Nose

● Smell of urine

● Foul/ sour weird smells

● Old wet towel musty smell

● Severe congestion

● Not able to blow nose (makes everything worse if i try)

● Burning and itching inside sinus (roof of mouth, deep inside ears, skin near tonsils)

● Whistling sound when breathing

● Blood in mucus

● Cannot feel air coming out nose when exhaling, slight cold/cool sensation when inhaling

● Cannot smell strong scents

● Brown/green/yellow/clear thick mucus

● Food gets stuck in sinus’ (swallowing)

● White hard bump in left nostril when nose is stretched

● Nose pain, face pain (nerve pain?)

● Severe nasal congestion (feels like there is a oval/ball trapped in sinuses)

● Pressure/force to help clear nose (forcing pressure on head/neck with hands)

● Polyps

● Complete blockage of nostril/s at times (all the time before surgery)

● Hollow sound when breathing

● Sneezing (more constant, several sneezes at a time. Messes up nose more – was never like this)

● Can feel the pulling of the mucus when trying to clear nose (even ‘tugging’ on my eyes)

Body

● Legs and arms go to sleep extremely easy

● Severely cold hands and feet (even under blankets and with fuzzy socks on)

● Clammy hands and feet

● Pain in feet and hands

● Muscle spasms (kidneys/liver)

● Pain, pressure burning in Pelvis area

● GI Symptoms

● Popping joints

● Ruptured blood vessel on hands (Derma)

● Sores and red spots spots on feet

● Muscle pain

● Eczema

● Itchy limbs

● Arms feel tingly when put out to the sides (shocking nerve pain)

● Pain in upper torso/chest

● Cyst in pelvic area (2019)

● Arms/legs (pulling/tightening) when stretching or reaching (feeling that they will snap)

Misc.

● After turbinate reduction in April 2019 had to be put on omeprazole for acid reflux

● Wheezing (in chest) when breathing with and without mucus

● Random sores on fingers/ and feet

● Horrible nightmares

● Night sweats

● Difficulty sleeping

● Had mono and the flu black to back and nose/health was never the same following

● Antibiotics, steroids; does not help (after ending course of medicine ends up feeling worse)

● Nauseous

● Sinus infections (constant since 2015)

● Shortness of breath, gasping for air laying in bed awake

● Body sores

● Weighed 185-190 October/November 2019; currently weigh 128

● Anca elevated, White blood cell 10.7% (July 17 2020)

● When I get up and do anything (around the condo, going outside) my nose changes and gets worse. Gets the most comfort from laying in bed with head elevated and with the humidifier and air purifier running.

● Overall well-being does not feel good, does not feel like himself/same person (feels weak and foggy)

● Extremely forgetful

Procedures

● April 2019

● January 2020

Here’s a note my amazing girlfriend wrote for my doctor, I think it would be useful here as well. B = ME.

I am writing you this letter to give you my perspective of B since I have lived with him for the past two years. I want to explain to you how quickly B’s health has diminished over the past two years of being with him, and also explain to you how I see him every day. I want to start off at two years ago when I first met B. When B and I first started to hang out he was going to the gym every day, for hours on end. We did a lot of things together as a couple like going out to dinner, go cart racing, the zoo, and going on adventures…B used to love being outside. B used to be a very outgoing person who always wanted to go out and do things! B used to work in landscaping and would be outside for hours on end, now when he goes outside his nose completely changes from what it felt like being in the condo. Since I have met B, he has been diagnosed with multiple sinus infections and put on multiple courses of antibiotics. Since meeting B, I had never met someone that has had so many sinus infections, it seemed like he would get one and finish the medicine and it was back again in a couple of weeks…

In April of 2019 B got his Turbinate reduction and after that procedure everything became a lot worse for him, this is when his quality of life started to decline. After the procedure B felt that he was even more congested, and that the procedure didn’t work. Even after the Turbinate reduction B was still getting sinus infections. Before the Turbinate reduction B and I were going out and doing things as a couple, after the procedure because he was feeling worse, we stopped going out as often. We would only go out and do things if it was a “good” day for B’s nose. Before the procedure B never used to clear his nose by pulling at his cheeks, and now currently he is doing it every couple of minutes to try to get some sort of relief. Since B did not get any relief from the Turbinate reduction and ended up feeling even worse, he started to look into other ENT doctors to get a second opinion. After seeing other ENT doctors, it was determined that he would need surgery on his nose to fix all the problems he was dealing with.

In October of 2019 before the (BIG) nose surgery B was hospitalized at UH main campus for fluid in both his thighs and above his groin. While B was in the hospital, they could not figure out the root cause of why he had fluid in his thighs and above his groin and ended up releasing him with no answers. During his hospital stay I remember many doctors and nurses asking him if he was feeling okay (because he was sniffling and clearing his nose all the time) and he would always respond “I have nose problems and I’m getting surgery very soon”.

After getting out of the hospital a couple months went by of him being completely miserable (with his nose), and then he had his major nose surgery. The surgery took longer than they anticipated and upon surgery they found polyps that they were not aware of going into surgery, they also said when cleaning out his sinuses his mucus was the consistency of peanut butter. The doctors stated that after surgery B would feel miserable and his nose would be at its worse for 2-3 weeks. During that 2-3-week period B’s nose felt better. He was able to move the mucus around and clear it out, and he also had better breathing. After that period of time things really started to go downhill for B and he was miserable. He was no longer able to move the mucus around and the air flow through his nose had diminished. B then started to get severe headaches to the point he had to lay in a dark room all day and not look at anything bright. With the headaches came severe dizziness EVERY time he would get up from bed or would stand up after picking something up, he would get severely dizzy to the point I have to hold him so he wouldn’t pass out. Since the pandemic it has been very hard to get doctor’s appts, during the pandemic B saw his surgeon and explained to him how horrible he has been feeling. The surgeon dismissed B’s symptoms and said it had nothing to do with his nose and sent him off to different doctors to get different testing done. B went and did ALL the testing the surgeon asked him to do and every test came back normal. Then a couple weeks ago B got severely dizzy to the point he passed out, during this time I had to catch and lay his unresponsive body on the ground and during this time of trying to lay him down his legs were shaking. Once I got B on the ground, I saw that his pupils were fully dilated to the point you couldn’t see blue in his eyes. I sat with B trying to get him to respond to me, it took 5-10 seconds for B to finally respond to me and realize what was going on. This was extremely scary for him and I, if I wasn’t home to catch his head then he would have smashed it on the wall.

During the pandemic B has had a rapid decline in his heath; he feels worse now than he did before the surgery. B went into the surgery with severe nose problems and now is suffering even more than just his nose. I have lived with B for over a year now, and every morning instead of waking up with a smile on his face he is ALWAYS miserable and says, “I don’t feel good”. Everyday B struggles to get out of bed in the morning, he also is sometimes not able to get out of bed because he is trying to clear his nose and can’t move from the specific position he is in. B used to be this outgoing person and now he has ZERO quality of life, he feels so miserable every day that he is no longer able to work (he does not feel like himself/ same person). The only thing Bake does now is run errands with me and we will go to our parent’s houses for dinner, but even sometimes he isn’t able to do those things because of how he is feeling. Also, the way B is feeling everyday has affected us as a couple. B never feels good but on really bad days B is more irritable and it causes more fights between us. Two years ago, B was not as irritable. Yes, his nose bothered him but now we are dealing with nose and systemic problems as well, and I understand why he gets so irritable…he never feels good. Also, when I first met B he was extremely on top of things and never had a problem speaking. Currently B has a hard time remembering things, and also speaking about things. B will lose his train of thought and forget what we are talking about during a conversation. B also becomes extremely forgetful during doctors appts because he is so worked up. I have gone to multiple doctors appts with B to help him explain to the doctor what he is feeling because like I said he has a hard time remembering a lot of things, especially when put on the spot. I as his girlfriend see him everyday so that is why I come to doctors appts so the doctor can get a better understanding of how B is feeling. I need to be in appts with him as well because sometimes B does not remember everything that was said, and this leads him to because frustrated. B suffers all day and everyday with his nose and systemic problems, and each day the symptoms seem worse or he feels worse. B is constantly trying to clear or move stuff around in his nose by pulling his cheeks, he cannot go 10 minutes without doing it or his nose will become worse. B is an amazing boyfriend and I hate that he is so miserable each and every day and there are still no answers to what is going on. Going forward if you have any appts with B I really need to be in the room with him to speak to you and also retain the information being said.

Also, since B has been dealing with these problems for so long, we have started to do research on our own. One thing B and I have come across during the research process was AFS (Allergic Fungal Sinusitis). We came across AFS a while ago and brought it up to B’s surgeon and he shot it down immediately saying his nose looked “pristine”. B saw another ENT about a month ago and he wanted to look at everything he was feeling vs just one thing (his nose), during that appt the ENT brought up Churg-Strauss syndrome which cause a lot of systemic problems. Upon talking to other doctors, they shot down that idea without even seeing B or running more tests. B and I then did farther research and came across AFS again. Looking into AFS farther we saw that people with AFS experience systemic problems, weird smells, polyps, mucus the consistency of peanut butter, and problems with antibiotics/steroids helping them while they are taking them but then feeling even worse after the course of medicine is finished (which B is experiencing). Also, with AFS testing we have read that there are specific tests that need to be taken/ordered in order to find it.

I’ve been up all night putting this together, so again, I’m sorry if this is choppy. There are still a few things I know I’m missing but ill edit if I think of anything. I feel extremely sick and keep getting dismissed; and insights would be greatly appreciated.

Links to test results, pictures and a few videos:

https://share.icloud.com/photos/0iawC4OMQv9-ZrWxia5fur6dg

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