If a sinus infection kills me before the cancer, I'm going to be really pissed off.
December 13, 2012 9:26 AM Subscribe
Does anyone have experience with infection/disease in the sphenoid sinus? Everything I read online suggests that I have to get this treated IMMEDIATELY or I'll become brain-damaged or dead, and I'm already convinced the former is setting in...
I am (or was) on an experimental cancer treatment. I began to have episodes of hypertension (I'm a 32-year-old female who is healthy with the exception of the cancer). I also began to experience headaches and the feeling of pressure and fullness beginning at the back of my neck and moving around to my forehead. My hearing would change and my vision would black out a bit. These episodes usually were fleeting, no more than a minute or two, but would sometimes happen several times a day. Sometimes mild, sometimes so severe that I worried about passing out. These episodes happened most often when I was changing position, particularly when I would go from seated to standing. I've been having symptoms for five or six weeks.
I was sent for a head MRI to rule out hemorrhage or brain metastases. The MRI came back clear and normal (I thought). But my team missed the line about "significant sinumucosal disease in the sphenoid sinus" because they were looking for mets or bleeds as the cause of my headaches/blood pressure issues, not a sinus infection. Turns out all my symptoms can be explained by the sphenoid sinus problems.
Have you treated a sphenoid sinus infection with nasal washes and/or decongestants? Have you had surgery? The potential neurological complications freak me out, particularly because I've recently been having trouble with spelling (I'm a writer and an editor, so this change is quite noticeable). I'd chalked it up to stress but now I'm convinced that my sinuses are rotting my brain.
Everything online is a doomsday piece written by a medical professional who advocates for surgery yesterday, or comes from a website that sells home remedies. Should I be freaking out and demanding a referral to an ENT doctor right now? Or should I just chill because the fungus or bacteria in my skull isn't actually making me stupider.
I'm starting a new clinical trial in two weeks and I really don't want a GD sinus infection to delay my treatment.
I am (or was) on an experimental cancer treatment. I began to have episodes of hypertension (I'm a 32-year-old female who is healthy with the exception of the cancer). I also began to experience headaches and the feeling of pressure and fullness beginning at the back of my neck and moving around to my forehead. My hearing would change and my vision would black out a bit. These episodes usually were fleeting, no more than a minute or two, but would sometimes happen several times a day. Sometimes mild, sometimes so severe that I worried about passing out. These episodes happened most often when I was changing position, particularly when I would go from seated to standing. I've been having symptoms for five or six weeks.
I was sent for a head MRI to rule out hemorrhage or brain metastases. The MRI came back clear and normal (I thought). But my team missed the line about "significant sinumucosal disease in the sphenoid sinus" because they were looking for mets or bleeds as the cause of my headaches/blood pressure issues, not a sinus infection. Turns out all my symptoms can be explained by the sphenoid sinus problems.
Have you treated a sphenoid sinus infection with nasal washes and/or decongestants? Have you had surgery? The potential neurological complications freak me out, particularly because I've recently been having trouble with spelling (I'm a writer and an editor, so this change is quite noticeable). I'd chalked it up to stress but now I'm convinced that my sinuses are rotting my brain.
Everything online is a doomsday piece written by a medical professional who advocates for surgery yesterday, or comes from a website that sells home remedies. Should I be freaking out and demanding a referral to an ENT doctor right now? Or should I just chill because the fungus or bacteria in my skull isn't actually making me stupider.
I'm starting a new clinical trial in two weeks and I really don't want a GD sinus infection to delay my treatment.
What does your team say? Tap into the resource you already have and ask them for a referral.
posted by Katine at 9:52 AM on December 13, 2012
posted by Katine at 9:52 AM on December 13, 2012
First off: I am hesitant to recommend ANYTHING given what you've got going on, for fear it might run into your treatment/condition in some other way. So please don't do anything without checking in with your local medical authorities and all that. (You know this.)
Anyways, Dr. Madamina (who has a master's in journalism and that's it) is second only to Dr. Nick in her enthusiasm for helping.
If it's pressure you're dealing with, Mucinex-D might help. Note the D and not the DM; it's the guaifenesin/pseudoephedrine mix. I used it when I was dealing with terrible pain in front of my ears that didn't seem to be an ear infection per se. It helped!
But Mucinex-D might be contraindicated if you have high blood pressure, so watch out for that.
If you're lazy and a bit intimidated by saline rinses like neti pots, you should check out Simply Saline. The difference between the regular kind (Nasal Relief) and the "allergy and sinus" version is that the former is isotonic ("equal") and the latter is hypertonic ("high"). That refers to the salt concentration. A higher salt concentration may help dry you out if your nose is running... but it also may dry you out, period, so you may be better off with the regular version. Personally, I've never been able to handle the neti pot -- either the mixing or the squirting -- so Simply Saline has been a great shortcut.
Small heating pad (like a microwaveable eye pillow) for your face and head, perhaps?
posted by Madamina at 10:00 AM on December 13, 2012
Anyways, Dr. Madamina (who has a master's in journalism and that's it) is second only to Dr. Nick in her enthusiasm for helping.
If it's pressure you're dealing with, Mucinex-D might help. Note the D and not the DM; it's the guaifenesin/pseudoephedrine mix. I used it when I was dealing with terrible pain in front of my ears that didn't seem to be an ear infection per se. It helped!
But Mucinex-D might be contraindicated if you have high blood pressure, so watch out for that.
If you're lazy and a bit intimidated by saline rinses like neti pots, you should check out Simply Saline. The difference between the regular kind (Nasal Relief) and the "allergy and sinus" version is that the former is isotonic ("equal") and the latter is hypertonic ("high"). That refers to the salt concentration. A higher salt concentration may help dry you out if your nose is running... but it also may dry you out, period, so you may be better off with the regular version. Personally, I've never been able to handle the neti pot -- either the mixing or the squirting -- so Simply Saline has been a great shortcut.
Small heating pad (like a microwaveable eye pillow) for your face and head, perhaps?
posted by Madamina at 10:00 AM on December 13, 2012
When you say they "missed the line" do you mean that it was never addressed with you and you read it on the MRI report or they brushed it off as not a big deal? If its the former, I'd say you have to be your own advocate here because, yes, medical professionals miss stuff and there's nothing wrong with asking "What's up with this?" If its the latter, that's not very smart/nice of them and while I'm not a cancer whiz, I am a nurse and we've delayed some types of cancer treatments for active infections, depending on what they are and how severe. So either way, it's worth asking about if you haven't yet.
As a patient myself, I've had MRI-diagnosed severe sinus issues in the past and cleared them up each time with decongestants, yes, but also lots of antibiotics. So it's not always something you can do as a home remedy and since you're on something experimental for your CA treatment, I'd tread lightly with the home and over the counters. And not to add any stress to your question, but I've known two friends who are also healthcare workers who ended up in the ICU for sinus infections that went brainward. Not common by any stretch, but it's not a good thing to let fester. Mental status changes aren't a joke. If it were me, I'd get it checked out if it was truly listed as "severe" on the MRI.
posted by takoukla at 10:29 AM on December 13, 2012
As a patient myself, I've had MRI-diagnosed severe sinus issues in the past and cleared them up each time with decongestants, yes, but also lots of antibiotics. So it's not always something you can do as a home remedy and since you're on something experimental for your CA treatment, I'd tread lightly with the home and over the counters. And not to add any stress to your question, but I've known two friends who are also healthcare workers who ended up in the ICU for sinus infections that went brainward. Not common by any stretch, but it's not a good thing to let fester. Mental status changes aren't a joke. If it were me, I'd get it checked out if it was truly listed as "severe" on the MRI.
posted by takoukla at 10:29 AM on December 13, 2012
Yes, see an ENT. ENT.
posted by Sidhedevil at 10:46 AM on December 13, 2012 [2 favorites]
posted by Sidhedevil at 10:46 AM on December 13, 2012 [2 favorites]
Response by poster: When I say, "missed the line" I mean it literally was not noticed by anyone who read the report. I've talked to them and my oncologist has said to start decongestants until she gets back in town, then she will determine if I should go on antibiotics or be sent straight to an ENT.
Spendoid sinus infections are really rare and don't present like other infections. I'm not congested, I don't have a cough or runny nose or constant pain -- it's just the intermittent headaches and neck pain that generally comes from changing position.
I'm hoping to hear from someone who has had sphenoid sinus problems so I can determine just what I should be advocating for right now -- insist on antibiotics? Insist on an ENT referral? I'm not immunocompromised (I'm not on a cytotoxic chemotherapy, I was on a targeted drug that doesn't affect bone marrow production).
I've been a professional patient for a long time now and one thing I've learned is that no matter how awesome they are at their job, sometimes experts don't take things seriously when those things are out of their area of expertise.
I'll be seeing my team tomorrow, I just want to go in equipped with as much information as possible so I can advocate for myself as an informed patient rather than a panicked patient.
posted by Felicity Rilke at 10:47 AM on December 13, 2012
Spendoid sinus infections are really rare and don't present like other infections. I'm not congested, I don't have a cough or runny nose or constant pain -- it's just the intermittent headaches and neck pain that generally comes from changing position.
I'm hoping to hear from someone who has had sphenoid sinus problems so I can determine just what I should be advocating for right now -- insist on antibiotics? Insist on an ENT referral? I'm not immunocompromised (I'm not on a cytotoxic chemotherapy, I was on a targeted drug that doesn't affect bone marrow production).
I've been a professional patient for a long time now and one thing I've learned is that no matter how awesome they are at their job, sometimes experts don't take things seriously when those things are out of their area of expertise.
I'll be seeing my team tomorrow, I just want to go in equipped with as much information as possible so I can advocate for myself as an informed patient rather than a panicked patient.
posted by Felicity Rilke at 10:47 AM on December 13, 2012
Best answer: Yes, I have had sphenoid sinus infections. You need to see an ENT, preferably one with experience in working with immunocompromised patients. (I am immunocompromised by my chronic illness to a far lesser extent, I'm sure, than you are by your chemo, and my sense was that the ENT felt greater urgency---not emergency, but urgency---about clearing the infection for that reason).
posted by Sidhedevil at 2:42 PM on December 13, 2012 [1 favorite]
posted by Sidhedevil at 2:42 PM on December 13, 2012 [1 favorite]
This thread is closed to new comments.
For my own sinus congestion, I've had very good luck with pre-packaged sterile saline rinses. (Don't fuck around with tap water, especially if your immune system has already taken a beating from your treatment. Our digestive system can handle stuff that can be dangerous if you shoot it directly up your nose.)
I've also had amazing luck with aromatherapy. I went to a perfume convention with terrible nasal congestion, and the nice founder of this company gave me some Decongest potion to "smell". (I couldn't smell a thing, but I tried to inhale to humor her.) Five minutes later, my nose was running like a faucet and I could smell again! So that's another option.
I've also had good luck with pseudoephedrine, the good stuff behind the counter, not the phenylephrine you find on the shelf. Draining all the gunk out of your sinuses really does help your body fight off infection and get over whatever has made a nice little home up there.
The pain you describe, starting in your neck and moving forward doesn't sound like something that would be caused by your sinus, and it sounds very unusual for a tumor to present that way, but I strongly suggest checking in with your doctor and letting them know about what you've been experiencing. Keep a journal and track the symptoms. Also look out for any cold sores or rashes. Believe it or not, a herpes flare up can hurt like a bitch in many unexpected ways.
posted by DaveZ at 9:39 AM on December 13, 2012 [1 favorite]