Spouse has "condition" or does not?
June 16, 2014 7:36 PM Subscribe
Long Story not soo Short. Spouse had long history of sinus infections - always causing time off from work - lots of antibiotics prescribed. This past early spring Dr convinced spouse to have sinus surgery and that spouse would be back to normal in like two weeks. After surgery recovery did not go well and in addition to add'l sinus infections that needed more antibiotics spouse was also treated a couple of times with prednisone (nasal sprays, etc.). Things really never really improved - after a few weeks started experiencing shortness of breath and chest tightness. This was not at all present before surgery. Battery of tests have been performed - everything from lung clot to asthma to now cardiomyopathy have been tossed around. And lots of tests have been performed with lots of specialists. It has now been three months and we are no closer to finding out root cause.
Spouse has been seeing Drs in more than the institution that performed sinus surgery but it is just so frustrating that nothing can be conclusively diagnosed. Prior to surgery had no problems skiing, bike riding, working, walking. But now all of these cause great discomfort. Could this be complications form anesthesia? I would love to have this discussed with a lawyer but spouse wants to wait for final diagnosis - I feel if we talk to a lawyer now we may be able to better understand the path we should take. Anyone else been through something like this where the diagnosis just seems to elusive but also seems to be tied to a specific incident. Surgery was almost exactly three months ago. Spouse mid 50's active and semi healthy prior to surgery.
Spouse has been seeing Drs in more than the institution that performed sinus surgery but it is just so frustrating that nothing can be conclusively diagnosed. Prior to surgery had no problems skiing, bike riding, working, walking. But now all of these cause great discomfort. Could this be complications form anesthesia? I would love to have this discussed with a lawyer but spouse wants to wait for final diagnosis - I feel if we talk to a lawyer now we may be able to better understand the path we should take. Anyone else been through something like this where the diagnosis just seems to elusive but also seems to be tied to a specific incident. Surgery was almost exactly three months ago. Spouse mid 50's active and semi healthy prior to surgery.
I know nothing about this, but you did check for allergies, yes? Both to environmental factors and to chemicals?
posted by amtho at 8:23 PM on June 16, 2014
posted by amtho at 8:23 PM on June 16, 2014
I can't offer specific advice about what's going on... but I can tell you that I suffered from truly heinous sinus problems for years. I mean, splitting headaches, sore throat every day, ear aches, dizziness, shortness of breath. FOR YEARS.
And then I moved out of Long Beach, and it all went away. I had lived in two different places in LB, across town from each other, and never seen a difference. Then I moved a few dozen miles up the 405, and all of that sinus shit just stopped.
IIRC, it wasn't immediate. It was like, week by week, I steadily improved, and then after a month or so I suddenly realized I didn't have the constant sinus/allergy misery anymore. It's been years since I've felt shitty like that, although an afternoon visiting my family in LB is almost sure to give me a sore throat.
It could be worth spend a few weeks in some other town, to see if there's a big difference. I seriously endured years of hell in LB, and moving seemed to make all the difference.
posted by Ursula Hitler at 8:57 PM on June 16, 2014
And then I moved out of Long Beach, and it all went away. I had lived in two different places in LB, across town from each other, and never seen a difference. Then I moved a few dozen miles up the 405, and all of that sinus shit just stopped.
IIRC, it wasn't immediate. It was like, week by week, I steadily improved, and then after a month or so I suddenly realized I didn't have the constant sinus/allergy misery anymore. It's been years since I've felt shitty like that, although an afternoon visiting my family in LB is almost sure to give me a sore throat.
It could be worth spend a few weeks in some other town, to see if there's a big difference. I seriously endured years of hell in LB, and moving seemed to make all the difference.
posted by Ursula Hitler at 8:57 PM on June 16, 2014
Seconding amtho. My miserable and dangerous chronic sinus infections and bronchitis (plus a bit of asthma - requiring repeated rounds of ever stronger antibiotics and steroids to treat) were stopped in their tracks when I got tested and then got allergy shots. Has spouse been to an allergist?
posted by gudrun at 8:59 PM on June 16, 2014
posted by gudrun at 8:59 PM on June 16, 2014
Did they check whether it was fungal or bacterial? Antibiotics won't kill a fungus.
posted by Bentobox Humperdinck at 7:03 AM on June 17, 2014 [1 favorite]
posted by Bentobox Humperdinck at 7:03 AM on June 17, 2014 [1 favorite]
The symptoms sound exactly like a (stronger) version of my allergies. I don't have traditional allergy symptoms (runny nose, sneezing, itching), so it took me most of my adult life to realize that my intense sinus headaches, asthma (not attacks, just ongoing shortness of breath when I exercise), and the dark circles under my eyes were being caused by a bad dust allergy. If she hasn't had allergy testing, consider doing that before you run through more intense and obscure medical tests.
posted by you're a kitty! at 9:22 AM on June 17, 2014
posted by you're a kitty! at 9:22 AM on June 17, 2014
You could ask for a sweat chloride test if they have not tried that yet. It is a test for cystic fibrosis. These days, they recognize milder forms of it in what used to be a "grey zone" of numbers. I think different tests use different numbers but my memory is that below 40 is "normal," above 80 is "classic CF" and between those numbers is a new-ish diagnosis sometimes called "atypical CF."
People with "atypical CF" are very often people with a long history of sinus infection and often feel relieved to finally get the diagnosis. I was diagnosed just before I turned 36 and it was wonderful to finally get taken seriously by doctors and given a prescription for Zithromax with refills the first time I went to the ER instead of going in, being prescribed something weak, saying "Please, can I have something stronger. I have a long history of this and if you don't give me something stronger or a higher dose and longer course, I will be back in a week or two," getting lectured about how they know that they are doing and blah blah blah and having to go back once or twice more before someone would get the brilliant idea that "what you need is something stronger or a higher dose and longer course" (gee, why didn't I think of that???).
The sweat chloride is a relatively inexpensive test compared to some things. I think it was around $300 when I got it, which was about 13 years ago so those prices definitely are not current.
posted by Michele in California at 10:16 AM on June 17, 2014
People with "atypical CF" are very often people with a long history of sinus infection and often feel relieved to finally get the diagnosis. I was diagnosed just before I turned 36 and it was wonderful to finally get taken seriously by doctors and given a prescription for Zithromax with refills the first time I went to the ER instead of going in, being prescribed something weak, saying "Please, can I have something stronger. I have a long history of this and if you don't give me something stronger or a higher dose and longer course, I will be back in a week or two," getting lectured about how they know that they are doing and blah blah blah and having to go back once or twice more before someone would get the brilliant idea that "what you need is something stronger or a higher dose and longer course" (gee, why didn't I think of that???).
The sweat chloride is a relatively inexpensive test compared to some things. I think it was around $300 when I got it, which was about 13 years ago so those prices definitely are not current.
posted by Michele in California at 10:16 AM on June 17, 2014
I am the original poster and I guess it is not so important to be anonymous. I may have not been too clear in my original post but really the sinus symptoms have finally fully subsided (did take quite a while though). The problem is more the other symptoms/conditions that have come up after the surgery. None of them were present before surgery and are realy more serious then the sinus infections. My Spouse had an EKG and Stress test prior to the sinus surgery and nothing was a problem. Now he can't walk too far without getting short of breath and have heaviness in his chest. He has had so many tests done it is ridiculous. Prepping for another test this friday to compare to one right before and one right after.
I guess i am just trying to get a better handle on what kind of complications could come out of sinus surgery - with anesthesia (out for about 1.5 hours). Again it seems that the sinus issues have resolved (took a while but are resolved) but more serious problems of shortness of breath and chest constriction (heaviness feeling in chest) when any type of activity are now occuring constantly and were never an issue before.
posted by MrsMGH at 12:21 PM on June 17, 2014
I guess i am just trying to get a better handle on what kind of complications could come out of sinus surgery - with anesthesia (out for about 1.5 hours). Again it seems that the sinus issues have resolved (took a while but are resolved) but more serious problems of shortness of breath and chest constriction (heaviness feeling in chest) when any type of activity are now occuring constantly and were never an issue before.
posted by MrsMGH at 12:21 PM on June 17, 2014
Before the sinus surgery was your husband's infections and sinus issues being treated with anything? I know before my sinus surgery, I took daily singular and several prescription nosesprays daily for years. I was able to stop all that post-surgery, but then realized my seasonal allergies were way worse than I had previously realized, but I never noticed since I was always taking medication.
posted by inertia at 1:47 PM on June 17, 2014
posted by inertia at 1:47 PM on June 17, 2014
I will reiterate that a sweat chloride might be a good thing to ask for. Classical Cystic Fibrosis is generally viewed as a lung disorder (even though that is a vast oversimplification). I was diagnosed after 10 weeks of sinusitis turned into pneumonia, leaving me bedridden for 3.5 months. I was getting tested for various things and referred on to new specialists without treatment because they had no idea what was wrong with me. I was at the hospital about twice a week for many weeks, either for another test or to see yet another specialist. They kept telling me they could find nothing wrong with me. This is really common with atypical CF.
Because CF is a genetic disorder which impacts functioning of all cells in the body, I can have really weird reactions to things like anesthesia or chemicals. There is basically a bottle neck in how my cells process certain atoms and it has a great many implications for how the body responds to all kinds of things.
posted by Michele in California at 2:02 PM on June 17, 2014
Because CF is a genetic disorder which impacts functioning of all cells in the body, I can have really weird reactions to things like anesthesia or chemicals. There is basically a bottle neck in how my cells process certain atoms and it has a great many implications for how the body responds to all kinds of things.
posted by Michele in California at 2:02 PM on June 17, 2014
The list of things that can cause shortness of breath on exertion is as long as your arm, and listing them all out isn't going to be useful (anything affecting the lungs, anything affecting the heart, anything causing anaemia, anything causing liver or renal failure... It's a very long list). Some may be surgery-related, some will not be.
What you need is a physician (not your ENT surgeon) to start at the top and work down the list. That sounds like it might already be happening; it may not be a quick process if the first few tests were ok. I'm not sure how lawyering up will speed things up - it's more likely to make your doctors back away. It doesn't sound like a complication of the anaesthetic per se, but if for example your husband had a heart attack during surgery then that might be something brought on by the physiological stress of surgery but not specifically by the anaesthetic agent, if you see the distinction. Bear in mind as well that complications can happen even if everything is done right - if this does turn out to be a complication of surgery that does not necessarily imply negligence and suing may not get you anywhere. A bad outcome is not enough, there needs to be fault involved not just plain bad luck in order to have a case. So allergic reaction out of the blue - bad luck. Allergic reaction to drug you've already told them you're allergic to - negligence. Hope I've explained that ok, I appreciate it's a fine distinction.
I am probably biased, but I don't think that torpedoing your doctor-patient relationships will get you any further forward. Your doctors do seem to be taking this seriously and looking for a diagnosis in good faith. Calling in lawyers is very much a nuclear option.
posted by tinkletown at 2:10 PM on June 17, 2014 [1 favorite]
What you need is a physician (not your ENT surgeon) to start at the top and work down the list. That sounds like it might already be happening; it may not be a quick process if the first few tests were ok. I'm not sure how lawyering up will speed things up - it's more likely to make your doctors back away. It doesn't sound like a complication of the anaesthetic per se, but if for example your husband had a heart attack during surgery then that might be something brought on by the physiological stress of surgery but not specifically by the anaesthetic agent, if you see the distinction. Bear in mind as well that complications can happen even if everything is done right - if this does turn out to be a complication of surgery that does not necessarily imply negligence and suing may not get you anywhere. A bad outcome is not enough, there needs to be fault involved not just plain bad luck in order to have a case. So allergic reaction out of the blue - bad luck. Allergic reaction to drug you've already told them you're allergic to - negligence. Hope I've explained that ok, I appreciate it's a fine distinction.
I am probably biased, but I don't think that torpedoing your doctor-patient relationships will get you any further forward. Your doctors do seem to be taking this seriously and looking for a diagnosis in good faith. Calling in lawyers is very much a nuclear option.
posted by tinkletown at 2:10 PM on June 17, 2014 [1 favorite]
I am assuming he has already (or is having) his heart and lungs checked thoroughly, and that they are checking for blood clots as well. I assume they are also checking for anemia?
If those specialists/tests don't find anything then the shortness of breath and chest constriction thing would still make me want to get him to an allergist, as that can be asthma symptoms.
posted by gudrun at 2:19 PM on June 17, 2014
If those specialists/tests don't find anything then the shortness of breath and chest constriction thing would still make me want to get him to an allergist, as that can be asthma symptoms.
posted by gudrun at 2:19 PM on June 17, 2014
Coming back to add re anemia, I would be checking for both iron and vitamin B12.
posted by gudrun at 2:21 PM on June 17, 2014
posted by gudrun at 2:21 PM on June 17, 2014
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posted by flod logic at 7:57 PM on June 16, 2014 [1 favorite]