Unfortunately no 😅 the last surgery was back in december and it's all healed up now but my fatigue is still the same. But it's nice to have a little less pain in my life!
Sometimes having the removal of something causing pain can take away more fatigue than you realize since your body isn't processing those signals all the time anymore.
Ooh, haller cells? I had bone growths blocking my sinuses too! And therefore chronic sinusitis that nobody could understand. I just kept being told to do saline rinses, because apparently 2x a day wasn't enough lmao. Turns out the rinses were never even getting up there! The first ENT who saw the CT scan said there was nothing wrong and that having constant sinus infections was "normal." The second actually saw the haller cells.
And I had already had sinus surgery 10 years prior to remove a mucus plug, shave my turbinates, and cauterize the inside of my nose (chronic nosebleeds), and nobody had noticed the haller cells on any of those CTs either. Maybe they were less developed.
I'm so glad your headaches are gone!
A fun part of the story is that the first sinus infection I had, when I was a kid, went undiagnosed for a year because my symptoms were somewhat abnormal (no green mucus...hmm maybe because it's TRAPPED???) and the doctors all said my symptoms were just anxiety/me trying to get out of school. FINALLY I found a good allergist and he sent me to an ENT he liked and I got a CT scan and they were SHOCKED at the infection and the fact that I'd had it for so long. They said something about how if it had kept going untreated, it could've reached my brain. Antibiotics helped me so much, which was bittersweet after a year of being told it was all in my head or I was faking. But then it sucked to have to take antibiotics multiple times a year when I'm allergic to a couple types and my gut is really sensitive to the effects of antibiotics too. And yet, as I grew up and kept getting the infections, when I knew I had developed an infection and went in to get antibiotics, they'd tell me to come back if I was still sick in 3 weeks, at which point I'd already been sick for 3 weeks, which was part of how I knew it was beyond a cold. So they wanted me to have a sinus infection for 6 whole weeks before they'd give me antibiotics, because they didn't believe that I knew how to tell when I had one. Rant rant rant rant blefh
This is what I was dealing with. Being told "it's all in your head" "it's migraines" all that. I am thinking I probably even have an infection and I am a little scared. So the surgery for you was a success??
I've had 2 different sinus surgeries:
First one was to remove mucus plugs, shave some of my turbinates, and cauterize the inside of my nose (chronic nosebleeds). This helped temporarily but did not stop the sinus infections from coming back.
Second one was to remove haller cells, do a septoplasty for my severely deviated septum, and shave my turbinates even more. The septoplasty came undone about a year later and resulted in a collapsed nostril so I do not recommend. It's actually harder to breathe now than it was before and the only solution is another surgery. But since they removed the haller cells that completely blocked off part of my sinuses, I stopped getting the chronic bacterial sinus infections. I still get sinus pain sometimes, but I have allergies so that's not abnormal. And I'm able to use things like saline rinses and have them ACTUALLY cleanse my sinuses. I am chronically ill so I feel terrible all the time anyway, so I guess it's possible I wouldn't know that I had a sinus infection, but if I have, it certainly hasn't felt like it used to.
That's so scary, oh my gosh. Are you going to get any procedures done soon to fix the collapsed nostril??
I was using the rinses but it wasn't doing anything to bring me relief and I was also being consistent with them. I feel like these rinses wouldn't reach into the haller cells either way. I'm glad to hear the haller cell was removed, I can definitely feel the pain you had felt.
Your haller cell wasn't opacified by any chance, would you know?? Mine seems to be filled with something... I hope it's nothing bad.
I'm not well enough to have surgery again yet. The septoplasty set my ME/CFS back in ways I've never recovered from. I've now had this collapsed nostril for years. I'll need surgery eventually but I'm very worried that my body won't be able to handle it. It was an extremely traumatic recovery process before.
I don't know if my haller cells were opacified! I was told they were "bone growth" blocking my sinuses, but that explanation doesn't quite fit the definition I'm seeing of haller cells, so I don't know why they were described that way to me. I'd have to research more to understand. I was so unwell at the time that I didn't ask as many questions as I usually would. I don't think they caused me pain on their own, but I guess I don't know for sure because of my general chronic pain. I looked up opacified and it seems like they must have been if they were totally blocking off my sinuses like the doctor said. Haller cells aren't really a problem if they aren't inflamed or diseased. I feel like they would've told me if I had an osteoma, so who knows where this "bone growth" thing came from. I'm now definitely questioning the validity of how this was explained to me!
I am going through this right now!!! Left eye pain, lower lid swelling, and blurry vision for 11 months. All the doctors and specialists were saying things were normal. The ENT said things were "normal" so I requested a copy of my CT and found an opacified Haller cell on my left side which I don't understand how they missed. The pain is constant 24/7, no relief from anything. I've tried antibiotics (three rounds), oral steroids, NSAIDs, sinus rinses, etc.
I am getting another scan today (last one was in December). This is how mine looked: [https://drive.google.com/file/d/1uT\_nCFLM\_pdIWFZpFwBP\_lOZYM0Mchmv/view?usp=sharing](https://drive.google.com/file/d/1uT_nCFLM_pdIWFZpFwBP_lOZYM0Mchmv/view?usp=sharing)
Did you also have the eye pain??
I didn't have any of the eye symptoms! I'm so sorry for what you've been going through. Apparently it's really easy to miss haller cells? Or at least it happens a lot. I wonder if they're just not looking for them so they miss them.
Your issues do sound different than mine, though, as antibiotics would clear my sinus infection up until the next time I developed one. Is the pain just in your eye or is it also in your sinuses?
It's on the left side right below my eye, kind of on the lower lid and it goes a little to the corner of my face near the side of my nose. I did have slight mild maxillary sinus inflammation in December though!
I'm curious what opthalmologists said? If you feel like sharing. Did they check you for map dot fingerprint dystrophy? It's easy to miss while your eye is actively inflamed, though. Since they can't see clearly through the inflammation.
I don't mind sharing (:
They did not! I just looked it up, didn't even know this was a thing. Mine isn't necessarily an eyeball issue, it's more like lower lid swelling and pain.
This is how it is on a daily basis and has been for 11 months: [https://drive.google.com/file/d/10gBeZMKpY0qs\_H11SuXITfdIAzyhrA5o/view?usp=sharing](https://drive.google.com/file/d/10gBeZMKpY0qs_H11SuXITfdIAzyhrA5o/view?usp=sharing)
Hmm, so the pain isn't in your eye itself, just the lid? Are you more sensitive to light than usual or anything like that? Is it usually worse in the morning or the evening? Sorry I just find diagnostics fascinating.
Yes it's on the lower lid, it's on the same exact spot where I had the thing on the CT I sent you. I am not more sensitive to light but it feel like I can't see that good from my left eye because of the swelling if that makes since. No worries!!! :D
I just did some research, and it seems like there are cases of inflamed haller cells causing unilateral orbital edema. It's rare, but it happens. It's also called periorbital swelling. It matches the photo you sent me. Sinus infections can cause it too, but the fact that you have an opacified haller cell right there does really suggest that they're connected, especially since antibiotics didn't help.
It doesn't look like fungal sinusitis on your CT scan, since it seems isolated to the haller cell. I'm very frustrated that no doctor has taken it seriously. But not surprised. Do you have the option to get more opinions?
I looked into Haller cells too! I got a new CT today and this time it was without contrast. This one didn’t mention the Haller cells or anything related to the inflammation although I am feeling the facial pain a lot right now and the lower eye pain. It did mention I have a deviated septum and nasal septal spur to the left (same side where I have the pain and lower lid swelling)
Ohhh congratulations! I want to get my sinuses checked again, years ago I was diagnosed with non allergenic rhinitis (before CFS/ME) and they did say surgery would help but I had just had thyroid surgery and was like “…I’ll consider it in a few years”. The MRI in my CFS/ME process of elimination gauntlet also noted sinus issues, but nothing else.
Did you find the corrective surgery easy as far as recovery? What a relief it must be to get rid of the headaches!
Thanks! The recovery wasn't as bad as I thought tbh. I was able to go home, like an hour after waking up from anesthesia (ofc not driving by myself.) I had headaches for a few days but they were like a 3/10 and had to take antibiotics for one week which gave me some stomach pain. The worst thing was that my nose was clogged for like one week so I had to breathe through my mouth constantly and it was very difficult to sleep. But all in all it wasn't that bad or excruciating as I it could be after a surgery in your skull! I would do it again if I had to!
I only know it would be to widen my sinus passages and cavities and fix my slightly deviated septum.
They only got as far as “if you like we can refer you to a surgeon” before I was like “no thanks, I’ll just take my paperwork telling me that life annoys my sinuses, my prescription for nasal spray, and the confirmation that I’m not imagining it for now” and bounced. At the time I had just finished dealing with round 2 of thyroid removal and wasn’t really wanting more surgery. Of course now I wish I had just sucked it up 🫠
They suggested that widening and removing some of the tissue would help it to not swell shut so much. It was some years ago now so I don’t remember exactly :(
That sucks the septum surgery didn’t help you at all!
As a long time severe allergy sufferer I assumed this might have something to do with migraines that were becoming more and more frequent as well as more potent over time in my 50s. Nope....Doc said my blood pressure was higher than it should be so put me on Propranolol. Not one migraine since. :)
Glad you got it figured. I was getting headaches lasting ten to 12 hours with the last 4 or 5 on the bathroom floor, whining like a baby, waiting to puke and wanting to sleep so bad.
This is great so glad you figured something out! I have a neuro appointment coming up for migraines and have terrible allergies and congestion and brain fog and fatigue so I’ll be sure to ask about this type of situation
I could still breathe through my nose, but apparently less than normal. I never really noticed it though, as I've been breathing like this my whole life. After everything had healed I noticed that I was able to breathe much better and initially had muscle pains in my chest as my lungs expanded further than before. That was a weird feeling.
Other symptoms were Chronic sinus inflammation, thickened mucus membranes, heavy snoring, pressure behind the eyes and behind the cheekbones and nasal medications didn't work (because they couldn't get to the inflammation)
Very interesting! Apart from the snoring that all sounds familiar. Headaches each and every day. Suspecting sleep apnea because I wake up during the night because of ceasing to breathe.
Did your doctor figure initially or did you?
Do you know which sinuses were blocked in your case?
- Ethmoid
- Sphenoid
- Frontal
- Maxillary
Did your doctor had a name for that?
I resonate a lot with your experience and I've recently had an ENT pointing out inflammation in the sinus and swollen turbinates. I thought I breath normal through my nose but boy oh boy it's much easier when the sprays work on the turbinates. Filling the chest without any effort.
But.. Pressure is still there, pulsating behind the bridge of my nose. The ENT is confident that if we shrink the turbinates, whatever is there will drain, but I have this physical feeling that is stuck
The same thing happened to me! I haven’t heard of anyone else having bone filled sinuses, so that’s pretty cool. (Still have migraines, but not all the time and they’re sooo much more bearable.)
This is amazing because I know my sinuses are getting blocked every night when I lie down and I wake up with a headache. Would love to send you a message with a couple of questions X I can't get any attention from doctors.
Like 7 years or so. In that time frame my "migraines" started and got worse over the years but no doctor would order a CT scan and you couldn't see the clogged sinuses on MRI scans 🙄
I’m so happy for you, that’s huge!
Thank you! It's nice to be able to share something positive for once.
[удалено]
Unfortunately no 😅 the last surgery was back in december and it's all healed up now but my fatigue is still the same. But it's nice to have a little less pain in my life!
Edit: Oh and my allergies doesn't suck so much anymore! Because the pollen and stuff didn't stay in my sinuses for ever 😄
Sometimes having the removal of something causing pain can take away more fatigue than you realize since your body isn't processing those signals all the time anymore.
Ooh, haller cells? I had bone growths blocking my sinuses too! And therefore chronic sinusitis that nobody could understand. I just kept being told to do saline rinses, because apparently 2x a day wasn't enough lmao. Turns out the rinses were never even getting up there! The first ENT who saw the CT scan said there was nothing wrong and that having constant sinus infections was "normal." The second actually saw the haller cells. And I had already had sinus surgery 10 years prior to remove a mucus plug, shave my turbinates, and cauterize the inside of my nose (chronic nosebleeds), and nobody had noticed the haller cells on any of those CTs either. Maybe they were less developed. I'm so glad your headaches are gone!
I feel this story in my soul 😄
A fun part of the story is that the first sinus infection I had, when I was a kid, went undiagnosed for a year because my symptoms were somewhat abnormal (no green mucus...hmm maybe because it's TRAPPED???) and the doctors all said my symptoms were just anxiety/me trying to get out of school. FINALLY I found a good allergist and he sent me to an ENT he liked and I got a CT scan and they were SHOCKED at the infection and the fact that I'd had it for so long. They said something about how if it had kept going untreated, it could've reached my brain. Antibiotics helped me so much, which was bittersweet after a year of being told it was all in my head or I was faking. But then it sucked to have to take antibiotics multiple times a year when I'm allergic to a couple types and my gut is really sensitive to the effects of antibiotics too. And yet, as I grew up and kept getting the infections, when I knew I had developed an infection and went in to get antibiotics, they'd tell me to come back if I was still sick in 3 weeks, at which point I'd already been sick for 3 weeks, which was part of how I knew it was beyond a cold. So they wanted me to have a sinus infection for 6 whole weeks before they'd give me antibiotics, because they didn't believe that I knew how to tell when I had one. Rant rant rant rant blefh
This is what I was dealing with. Being told "it's all in your head" "it's migraines" all that. I am thinking I probably even have an infection and I am a little scared. So the surgery for you was a success??
I've had 2 different sinus surgeries: First one was to remove mucus plugs, shave some of my turbinates, and cauterize the inside of my nose (chronic nosebleeds). This helped temporarily but did not stop the sinus infections from coming back. Second one was to remove haller cells, do a septoplasty for my severely deviated septum, and shave my turbinates even more. The septoplasty came undone about a year later and resulted in a collapsed nostril so I do not recommend. It's actually harder to breathe now than it was before and the only solution is another surgery. But since they removed the haller cells that completely blocked off part of my sinuses, I stopped getting the chronic bacterial sinus infections. I still get sinus pain sometimes, but I have allergies so that's not abnormal. And I'm able to use things like saline rinses and have them ACTUALLY cleanse my sinuses. I am chronically ill so I feel terrible all the time anyway, so I guess it's possible I wouldn't know that I had a sinus infection, but if I have, it certainly hasn't felt like it used to.
That's so scary, oh my gosh. Are you going to get any procedures done soon to fix the collapsed nostril?? I was using the rinses but it wasn't doing anything to bring me relief and I was also being consistent with them. I feel like these rinses wouldn't reach into the haller cells either way. I'm glad to hear the haller cell was removed, I can definitely feel the pain you had felt. Your haller cell wasn't opacified by any chance, would you know?? Mine seems to be filled with something... I hope it's nothing bad.
I'm not well enough to have surgery again yet. The septoplasty set my ME/CFS back in ways I've never recovered from. I've now had this collapsed nostril for years. I'll need surgery eventually but I'm very worried that my body won't be able to handle it. It was an extremely traumatic recovery process before. I don't know if my haller cells were opacified! I was told they were "bone growth" blocking my sinuses, but that explanation doesn't quite fit the definition I'm seeing of haller cells, so I don't know why they were described that way to me. I'd have to research more to understand. I was so unwell at the time that I didn't ask as many questions as I usually would. I don't think they caused me pain on their own, but I guess I don't know for sure because of my general chronic pain. I looked up opacified and it seems like they must have been if they were totally blocking off my sinuses like the doctor said. Haller cells aren't really a problem if they aren't inflamed or diseased. I feel like they would've told me if I had an osteoma, so who knows where this "bone growth" thing came from. I'm now definitely questioning the validity of how this was explained to me!
I am going through this right now!!! Left eye pain, lower lid swelling, and blurry vision for 11 months. All the doctors and specialists were saying things were normal. The ENT said things were "normal" so I requested a copy of my CT and found an opacified Haller cell on my left side which I don't understand how they missed. The pain is constant 24/7, no relief from anything. I've tried antibiotics (three rounds), oral steroids, NSAIDs, sinus rinses, etc. I am getting another scan today (last one was in December). This is how mine looked: [https://drive.google.com/file/d/1uT\_nCFLM\_pdIWFZpFwBP\_lOZYM0Mchmv/view?usp=sharing](https://drive.google.com/file/d/1uT_nCFLM_pdIWFZpFwBP_lOZYM0Mchmv/view?usp=sharing) Did you also have the eye pain??
I didn't have any of the eye symptoms! I'm so sorry for what you've been going through. Apparently it's really easy to miss haller cells? Or at least it happens a lot. I wonder if they're just not looking for them so they miss them. Your issues do sound different than mine, though, as antibiotics would clear my sinus infection up until the next time I developed one. Is the pain just in your eye or is it also in your sinuses?
It's on the left side right below my eye, kind of on the lower lid and it goes a little to the corner of my face near the side of my nose. I did have slight mild maxillary sinus inflammation in December though!
Does the pain near the side of your nose that you have right now feel like it's in your sinuses at all or just radiating out from your eye?
It's from the eye a little bit to my nose and sometimes I feel it on my forehead where the frontal sinuses are.
I'm curious what opthalmologists said? If you feel like sharing. Did they check you for map dot fingerprint dystrophy? It's easy to miss while your eye is actively inflamed, though. Since they can't see clearly through the inflammation.
I don't mind sharing (: They did not! I just looked it up, didn't even know this was a thing. Mine isn't necessarily an eyeball issue, it's more like lower lid swelling and pain. This is how it is on a daily basis and has been for 11 months: [https://drive.google.com/file/d/10gBeZMKpY0qs\_H11SuXITfdIAzyhrA5o/view?usp=sharing](https://drive.google.com/file/d/10gBeZMKpY0qs_H11SuXITfdIAzyhrA5o/view?usp=sharing)
Hmm, so the pain isn't in your eye itself, just the lid? Are you more sensitive to light than usual or anything like that? Is it usually worse in the morning or the evening? Sorry I just find diagnostics fascinating.
Yes it's on the lower lid, it's on the same exact spot where I had the thing on the CT I sent you. I am not more sensitive to light but it feel like I can't see that good from my left eye because of the swelling if that makes since. No worries!!! :D
I just did some research, and it seems like there are cases of inflamed haller cells causing unilateral orbital edema. It's rare, but it happens. It's also called periorbital swelling. It matches the photo you sent me. Sinus infections can cause it too, but the fact that you have an opacified haller cell right there does really suggest that they're connected, especially since antibiotics didn't help. It doesn't look like fungal sinusitis on your CT scan, since it seems isolated to the haller cell. I'm very frustrated that no doctor has taken it seriously. But not surprised. Do you have the option to get more opinions?
I looked into Haller cells too! I got a new CT today and this time it was without contrast. This one didn’t mention the Haller cells or anything related to the inflammation although I am feeling the facial pain a lot right now and the lower eye pain. It did mention I have a deviated septum and nasal septal spur to the left (same side where I have the pain and lower lid swelling)
That's so awesome!!! I love hearing when people find answers and get relief. <3
Ohhh congratulations! I want to get my sinuses checked again, years ago I was diagnosed with non allergenic rhinitis (before CFS/ME) and they did say surgery would help but I had just had thyroid surgery and was like “…I’ll consider it in a few years”. The MRI in my CFS/ME process of elimination gauntlet also noted sinus issues, but nothing else. Did you find the corrective surgery easy as far as recovery? What a relief it must be to get rid of the headaches!
Thanks! The recovery wasn't as bad as I thought tbh. I was able to go home, like an hour after waking up from anesthesia (ofc not driving by myself.) I had headaches for a few days but they were like a 3/10 and had to take antibiotics for one week which gave me some stomach pain. The worst thing was that my nose was clogged for like one week so I had to breathe through my mouth constantly and it was very difficult to sleep. But all in all it wasn't that bad or excruciating as I it could be after a surgery in your skull! I would do it again if I had to!
That’s really good to hear! Clogged nose is no fun, but since it’s for more permanent unclogging it seems a good trade off!
Haha, yeah!
Which surgery did they recommend?
I only know it would be to widen my sinus passages and cavities and fix my slightly deviated septum. They only got as far as “if you like we can refer you to a surgeon” before I was like “no thanks, I’ll just take my paperwork telling me that life annoys my sinuses, my prescription for nasal spray, and the confirmation that I’m not imagining it for now” and bounced. At the time I had just finished dealing with round 2 of thyroid removal and wasn’t really wanting more surgery. Of course now I wish I had just sucked it up 🫠
I’m not even sure that surgery would help non allergic rhinitis. I had the septum surgery and it didn’t improve it all. Maybe the sinus part might tho
They suggested that widening and removing some of the tissue would help it to not swell shut so much. It was some years ago now so I don’t remember exactly :( That sucks the septum surgery didn’t help you at all!
Excellent news!
As a long time severe allergy sufferer I assumed this might have something to do with migraines that were becoming more and more frequent as well as more potent over time in my 50s. Nope....Doc said my blood pressure was higher than it should be so put me on Propranolol. Not one migraine since. :) Glad you got it figured. I was getting headaches lasting ten to 12 hours with the last 4 or 5 on the bathroom floor, whining like a baby, waiting to puke and wanting to sleep so bad.
Nice! I'll be having a sinus CT scan soon too! I have horrible brain fog and headaches so I'm hoping they find something!
This is great so glad you figured something out! I have a neuro appointment coming up for migraines and have terrible allergies and congestion and brain fog and fatigue so I’ll be sure to ask about this type of situation
That's awesome! 💜 💜 💜
Against a lot of people’s opinions at the time, I had that kind of surgery coming up to 20 years ago. Best decision ever !!!!! Congratulations.
What were your other symptoms besides Migraines? Didn’t you have breathing difficulties?
I could still breathe through my nose, but apparently less than normal. I never really noticed it though, as I've been breathing like this my whole life. After everything had healed I noticed that I was able to breathe much better and initially had muscle pains in my chest as my lungs expanded further than before. That was a weird feeling. Other symptoms were Chronic sinus inflammation, thickened mucus membranes, heavy snoring, pressure behind the eyes and behind the cheekbones and nasal medications didn't work (because they couldn't get to the inflammation)
Very interesting! Apart from the snoring that all sounds familiar. Headaches each and every day. Suspecting sleep apnea because I wake up during the night because of ceasing to breathe. Did your doctor figure initially or did you?
I said the right things and my doctor drew the right conclusions. So I would say it was a team effort.
🥳
Do you know which sinuses were blocked in your case? - Ethmoid - Sphenoid - Frontal - Maxillary Did your doctor had a name for that? I resonate a lot with your experience and I've recently had an ENT pointing out inflammation in the sinus and swollen turbinates. I thought I breath normal through my nose but boy oh boy it's much easier when the sprays work on the turbinates. Filling the chest without any effort. But.. Pressure is still there, pulsating behind the bridge of my nose. The ENT is confident that if we shrink the turbinates, whatever is there will drain, but I have this physical feeling that is stuck
Did it require an MRI to diagnose this?
No I had a CT scan and they could tell that my sinuses were clogged and inflamed (my mucous membranes were thick😄) right away.
Omg I’m having a sinus CT scan on Monday !!! I really hope it provides some answers
Fingers crossed that they find something!
I love this story for you! Congrats 😍
The same thing happened to me! I haven’t heard of anyone else having bone filled sinuses, so that’s pretty cool. (Still have migraines, but not all the time and they’re sooo much more bearable.)
This is amazing because I know my sinuses are getting blocked every night when I lie down and I wake up with a headache. Would love to send you a message with a couple of questions X I can't get any attention from doctors.
Of course. I'll try to answer them as good as I can 😅
How long was that „journey“ in total?
Like 7 years or so. In that time frame my "migraines" started and got worse over the years but no doctor would order a CT scan and you couldn't see the clogged sinuses on MRI scans 🙄
Congrats on this fix..