I've been OCD'ing on this one:
My lung biopsy tissue went to the lab and they saw the NCG's and confirmed sarc.
However, I KNOW I have sinus involvement. I just went through one of those sinus episodes that I previously attributed to infx and got antibiotics.
Recent CT/MRI confirmed "cysts" in the sinus.
How does one know that NCG's (granulomas) aren't also in the sinus and causing all the mayhem?
Thanks for any notes.
Hi Ellis,
Biopsy (bx) is the gold standard for a primary diagnosis of sarcoidosis, and is probably the prefered method for confirming other sites as well, esepcially in complicated cases. Gold standard is not the same as required, however. Since you already have a confirmed site for sarcoidosis and are on treatment it seems your doctor should be willing to discuss continuing the current treatment and watching the sinus issue - if it improves, then it's already being treated and extremely likely to be the same thing; even if it isn't the same thing less reason to bx it if it's getting better with the same treatment.
There is another option involving seeing an ENT for their opinion as they might be able to open the sinuses for you and possibly resolve at least some of the issue while getting you a definative diagnosis.
Hi , I have been troubled by sinusitis (headaches, congestion,face pain, feeling dreadful) for years. At the beginning of the year I started with bad lightheadedness/dizziness/nausea which I attributed to the sinusitis. I had 3 episodes of this and had to use a stick for balance. I asked if I could have sarc in the sinus but the pulmo said it was unlikely as i'd had sinusitis for years but sarc for only 2. I pointed out that i may have been diagnosed for 2 years but had had years of symptoms given the stress label when I knew i wasn't stressed!! Apparently the only sure way to know is to have a biopsy.
My pulmo.sarc cons. put me on a 6 week course of doxycycline (type of antibiotic) which after 5 weeks appeared to have cured the sinusitis and other symptoms. (Other shorter courses of antibiotics, steroid sprays, steroid drops etc never worked). He then referred me to ENT. When I went to ENT they couldn't find anything wrong which was so frustrating! It might be worth trying the doxycycline?
Hi blue,
The sinuses are such a tough area to treat, so hard to get antibiotics that actually penetrate into them.
I do notice something in your post, though. Your newer symptoms - the lightheadedness/dizziness/nausea/loss of balance are things I would not associate with the sinuses at all but with the vestibular branch of the vestibulocochlear nerve (cranial nerve VIII). This is actually one of the most common sites for cranial nerve involvement of sarc. When the vestibule is sick, like in laybrinthitis, people will get these types of symptoms due to the disruption of the brain to accurately sense the body's position in space and movement. This is that part of the inner ear that senses acceleration, rotation and general position. It's a really neat system, fluid filled tubes with special hairs inside so that whenever you move the fluid flows through the tubes on both sides and your brain can interpret the ways the hairs bend. If the two sides aren't in sync though... well, that's the game we all played as small kids, spinning around until we were dizzy and off balance. As we hit adolescence, most of us enjoyed taking that to the next level on the tilt-a-whirl, and we all know you have to be careful where you step coming through the exit of that ride. Of course, in those situations people recover from the symptoms fast, not so when the nerve itself is impaired.
I raise this because I just wonder if they are looking in the right place. There are other things that can impair that nerve too, might be worth asking about those symptoms separate from the sinuses.
Hope that helps in some way.
I had a biopsy in a lymph node & they said probably sarcoidosis.
Since then I've had a pack of other tests but the specialists STILL say its only 90% lilkely I have sarc.
So what can you do?!!
Hi, Paradox and thanks for the pearl of wisdom!
I hadn't reasoned it out; improvement in the known sites with corresponding improvement in the suspected sites might tell me something.
I remember some old line out of Zen literature, "Cause and effect are clear."
Yeah, right. Not with this stuff!
Gracias, again.
Hey, Blue...Six weeks wow! I am convinced that in my cases of true sinus infx, longer courses of bug killers....like longer than the 10 days a lot of docs write, were needed.
I've had Augmentin through Zithromax. Some cannon called clendomycin...(Sp?), endless brown plastic bottles resting in the medicine chest. I really wonder if I should have been taking all those meds.
I also have an alternative MD down here in So Cal, a man I greatly respect who uses doxy.
Thanks! Now, rhetorically, am I dealing with a pathogen or these mysterious granular things...or both, or neither. If I had enough hair left I'd be tearing it out.
Hi, timl....
I know, what can you do?
Drop back five and punt.
I'd love to know about the consequences of sarc on sinuses. In addition to the usual stuffiness and dryness and raspy voice out of the clear blue... I lose my balance, get lightheaded and -about a year ir kess agi- I started these dizzy spells that ended with the room totally spinning around.
Best part... ent finds nothing wrong. Oh, at onepoint my head was so "full" and swishy that he ENT thought I had hearing loss and needed an aid.
It comes and goes.
Hi, Elizaruth--
Yeah, same basket of symptoms, although I haven't had the room spinning....not since some of my younger days with tequilla.
Do you have lung involvement?
Elizaruth,
That room spinning thing, loss of balance and dizziness sounds very much like something to do with a specific nerve in the inner ear. There are several things that can cause such symptoms, but sarcoidosis is one of them. Actually, among people with neruological symptoms of sarcoidosis affecting the cranial nerves, nerve VIII (the one that goes to the ear) is one of the most commonly involved.
You might want to have these symptoms addressed as separate from the sinus issues.
good luck
Thanks paradox
Went to the docs about the neuro type symptoms but she said it was the sinusitis!! The symptoms went along with the sinusitis after the antibiotics, but I will mention the neuro type episodes to my new sarc cons. when I go. Thanks for the info. and concern - much appreciated. Blue
Hi ellishamilton,
I've had naso-sinus sarc since 1995. I wasn't sure of the start until I checked my medical file. As I leafed through the pages, I saw "cobbeling" mentioned. 1994...normal, or swelling...after that for 5 years..."cobbeling". On my own, I was using mild saline nasal irrigation and a nasal salve daily.
Cases are different though, because of each individual's physiology and sarcoid involvment. My first symptom was swelling. Then for 3 years it was swelling, pain, dizziness, thick gummy mucous. I had 2 surgeries, without anyone doing a biopsy. After 5 or 6 years, the diagnosis was made from a biopsy.
Now I use Neil Med Sinus Wash, 1:1 saline and ponaris nasal spray during the day and Nasacort only at night. Sinus infections are a big problem. When I get them, it takes oral and injected steroids, strong antibiotics and lots of decongestants and staying hydrated! BUT...through trial and error, my doctors and I worked together, and his is what works for me...now.
DOLL
Hello, Dollinator---
Thank you for your notes!
I also use the Neil Med wash daily, and a steroid spray periodically.
The last time I was at the ENT, pre-sarc diagnosis, the guy told me the sinus tissues looked dessicated. So I'm trying to stay hydrated also.
I'm really not convinced the troubled schnoz has always been infection. I've probably used way too much of the world's antbiotic supply.
Thanks!
thought i'd add one. my sarc was discovered by a regular eye-glasses doctor. He sent me for lung x-rays. The tech asked me how long i'd had TB. See, the eye doc's mom had sarc in her eyes, also. i've never had a biopsy. my lack of lungs stopped my weightlifting, my lack of muscles makes my 76 year old mom do most of the groceries.
i know i didn't help...
wlrg2
wlrg2--
Thanks for the post! It must be hard to have to stay away from the iron-pile in the gym. I've had to give up a lot of it, but still do a lot of work-around stuff.
30% lungs and no biopsy? How come?
Wish you well.
My eye doc's mom had sarc. he saw the same thing, sent me for x-rays, found he was right. A super doctor, Amir Farahany, is both a cardiac and internal medicinist. He has treated some members of my family for 34 years. A good christian man, with my 1st of 7 heart attacks he verified my blockages from sarcoid. he put me in a breathing chamber and did everything including cut off my air. he verified a 45% lung cap., using ultra sound, he has tracked it to its present state. i do the oxygen thing 24 - 7, i travel 10 miles round trip with mom(wife died after 19 yr fight with cancer) to eat out once a week, then i rest up for the next 6 days trying to get ready to go again. 4 1/2 years ago i could pick up 2 semi batteries and walk from t/a's parts shop to the bay. then i was 52. Ellis, i tried to corredt all spelling. never like losing my sight.
if it's alright, i'd like to add you to my friends?
thanks,
wlrg2
Of course, friend I am!
Man I admire your keeping on with the program. And you've taken some big big punches from life. Keep it out of the gravel and let's trade experiences.
It sounds like you have some good people around you. They are angels, huh?
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