Ear issue update.

sweetblood22
sweetblood22 Member Posts: 3,228
edited July 2011 in Head and Neck Cancer #1
Well, as some of you know, I have had an ear infection for two weeks, and despite going to my PCP three times, its not gotten any better, in fact it's worse. It just started with my left ear and now it's in both. I am on my 3rd different antibiotic, and when I saw the CRNP on Monday, she said they would call my ENT again, that I definitely needed to be seen. My ENT office tried to make me wait until November 3rd. Which I realized today, btw, is actually an appointment I had for my cancer related yearly check with him. Since I told them on Monday, that was not acceptable to make me wait that long, they were supposed to call me yesterday to see if they could get me in earlier. Well of course no one called me back, so I called this morning and after twenty minutes on the phone, making the woman on the other end talk very loudly and repeat herself constantly, I have an appointment Monday 8/2 @ 9:40am with my ENT (the otolaryngology head & neck surgery dude) that I have been going to. The one the last that last time the receptionist said, "doesn't do ears".

So far this latest $148 antibiotic does not appear to be doing anything either. I just want my ears back to normal. I am sick of the pressure and pain in my ears, and I have been extra exhausted. I fell asleep early again, at about midnight, and actually slept like 9 hrs, (lucky if I get a fragmented 5 these days) and even after sleeping 9 hours, I woke up exhausted.

So let's hope they can figure out WTH is going on and get me some relief. I really want to know why my ears are like this, and why they aren't draining this crap out of there. It just worries me with all these antibiotics and it's not going away.
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Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    It Shouldn't Be This Difficult
    When do you finally see the ENT? A "normal" person would be P.O'd, I'm sure. With your history - it's madness. Hoping for relief.
  • palmyrafan
    palmyrafan Member Posts: 396
    #3
    Ear Infections
    Sweet,

    I understand where you're coming from. Because of my brain tumors, my eustacian tubes are blocked in both ears (and so are my sinuses). I have what is called "glue ear" where the wax in the ear becomes very thick and doesn't just drain on its own. I have to have the ENT use suction to clean out my ears. I will continue to have this until my surgery in September to hopefully fix the problem.

    Until then? I have recurrent ear infections, take heavy doses of Amoxicillin or Augmentin XR and I have lost my hearing. I can only hear if my husband comes over and talks in my ear.

    I know the pain and pressure you are talking about and it lead to headaches in my case.

    Let's hope the ENT takes you seriously this time and can help you get the relief you need. He may even need to "vacuum" out your ears. All you feel is a little pressure, but it works.

    Here's hoping you find relief and fast.

    T
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Pam M said:

    It Shouldn't Be This Difficult
    When do you finally see the ENT? A "normal" person would be P.O'd, I'm sure. With your history - it's madness. Hoping for relief.

    Hi Sweet
    It sucks to have to wait so long but hang in there and hope that will know something for you soon. Keeping you in pyares.

    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    Pam M said:

    It Shouldn't Be This Difficult
    When do you finally see the ENT? A "normal" person would be P.O'd, I'm sure. With your history - it's madness. Hoping for relief.

    Sorry Pam. I'm like brain
    Sorry Pam. I'm like brain dead these days. I read my posts back and half the time they dont make sense. I edited my post. It's on this Monday at 9:40am.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    sweetblood22 said:

    Sorry Pam. I'm like brain
    Sorry Pam. I'm like brain dead these days. I read my posts back and half the time they dont make sense. I edited my post. It's on this Monday at 9:40am.

    EeeeHhhh
    Dang, sorry you are still dealing with this crap Dawn....

    Thoughts and Prayers,
    JG
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    palmyrafan said:

    Ear Infections
    Sweet,

    I understand where you're coming from. Because of my brain tumors, my eustacian tubes are blocked in both ears (and so are my sinuses). I have what is called "glue ear" where the wax in the ear becomes very thick and doesn't just drain on its own. I have to have the ENT use suction to clean out my ears. I will continue to have this until my surgery in September to hopefully fix the problem.

    Until then? I have recurrent ear infections, take heavy doses of Amoxicillin or Augmentin XR and I have lost my hearing. I can only hear if my husband comes over and talks in my ear.

    I know the pain and pressure you are talking about and it lead to headaches in my case.

    Let's hope the ENT takes you seriously this time and can help you get the relief you need. He may even need to "vacuum" out your ears. All you feel is a little pressure, but it works.

    Here's hoping you find relief and fast.

    T

    Eustacian tubes.
    I read about your tumors, and I really hope that mine isn't caused by some tumor or cancer returning. To be honest that is what I am pretty freaked out about. When she looks in there, she says she can see fluid in my ears. No mention of wax. Guess I will find out something Monday, I hope. I guess I shouldn't be nervous, but I am.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #8
    Skiffin16 said:

    EeeeHhhh
    Dang, sorry you are still dealing with this crap Dawn....

    Thoughts and Prayers,
    JG

    Thanks John and Hondo.

    Thanks John and Hondo.
  • DrMary
    DrMary Member Posts: 531 Member
    #9
    sweetblood22 said:

    Eustacian tubes.
    I read about your tumors, and I really hope that mine isn't caused by some tumor or cancer returning. To be honest that is what I am pretty freaked out about. When she looks in there, she says she can see fluid in my ears. No mention of wax. Guess I will find out something Monday, I hope. I guess I shouldn't be nervous, but I am.

    Lots of things
    cause fluid in your ears, but it is understandable that you are worried about tumors. Allergies are the prime suspect, but also general irritation (like nearby inflammation, or even grinding teeth) can cause it. They can often flush the fluid out (from the inside) or treat the overall inflammation with prednisone. They gave my son flixonase (steroid nose spray) for fluid and it did seem to help.

    Since you have until Monday - do you have access to sauna? This has helped me with fluid in my ears in the past (helps thin the fluid from the nose end into the tubes). Even the old head over the steaming bowl of water method can work (but sauna's more fun if you can take it). I don't know if you can take decongestants (without any antihistamine) - that helps, but I usually have to take so much I can't sleep or eat in order to have an effect. You probably don't need less sleep or food right now.I

    Ear pain is miserable - I had too much of it as a kid, so I can only send my deepest sympathies. I hope you get some relief soon.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #10
    DrMary said:

    Lots of things
    cause fluid in your ears, but it is understandable that you are worried about tumors. Allergies are the prime suspect, but also general irritation (like nearby inflammation, or even grinding teeth) can cause it. They can often flush the fluid out (from the inside) or treat the overall inflammation with prednisone. They gave my son flixonase (steroid nose spray) for fluid and it did seem to help.

    Since you have until Monday - do you have access to sauna? This has helped me with fluid in my ears in the past (helps thin the fluid from the nose end into the tubes). Even the old head over the steaming bowl of water method can work (but sauna's more fun if you can take it). I don't know if you can take decongestants (without any antihistamine) - that helps, but I usually have to take so much I can't sleep or eat in order to have an effect. You probably don't need less sleep or food right now.I

    Ear pain is miserable - I had too much of it as a kid, so I can only send my deepest sympathies. I hope you get some relief soon.

    Michelle mentioned she
    Michelle mentioned she suspects allergies, which is weird, because I never had them before. I was on prednisone, It didn't do anything. Not sure about flixonase, but I was on nasonex, and that didn't do it either. Went through two bottles. Tried mucinex, nothing, one bottle of Zyrtec, and also tried Benedryl.

    I would try to put my head over steam, but even if I had access to a sauna, no can do. I don't do well in those things, or in high heat. I throw up then pass out. I wilt like a tiny blossom in a scorching dessert sun. I can barely stand a hot tub these days.
  • DrMary
    DrMary Member Posts: 531 Member
    #11
    sweetblood22 said:

    Michelle mentioned she
    Michelle mentioned she suspects allergies, which is weird, because I never had them before. I was on prednisone, It didn't do anything. Not sure about flixonase, but I was on nasonex, and that didn't do it either. Went through two bottles. Tried mucinex, nothing, one bottle of Zyrtec, and also tried Benedryl.

    I would try to put my head over steam, but even if I had access to a sauna, no can do. I don't do well in those things, or in high heat. I throw up then pass out. I wilt like a tiny blossom in a scorching dessert sun. I can barely stand a hot tub these days.

    Allergies come on
    at the weirdest times in life. Flixonase is probably the Egyptian brand name of the fluticasone spray we used; nasonex is mometasone - both are topical steroids. It would have to reach the ears through the nasal passages to work anyway, and you might be too blocked up for this to happen. Neither Zyrtec nor Benedryl are decongestants - they are antihistamines, and might actually make the fluid thicker. Have you ever taken Sudafed? If not, I'd ask the doctor first or wait until the appointment, but if you can take it without bad side effects, you might give it a try, along with sleeping as upright as possible and drinking lots of water (these are tips from my allergy doctor - they did help me at my worst, but I didn't have H&NC).

    Sorry you can't do sauna - not enough peasant blood, I guess. It seems like an awfully long time before Monday.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    sweetblood22 said:

    Eustacian tubes.
    I read about your tumors, and I really hope that mine isn't caused by some tumor or cancer returning. To be honest that is what I am pretty freaked out about. When she looks in there, she says she can see fluid in my ears. No mention of wax. Guess I will find out something Monday, I hope. I guess I shouldn't be nervous, but I am.

    Hi Sweet
    It is a common thing for the ears to become blocked; it does happen mostly in children but can affect adults as well. You might need to get tubes put in your ears to drain off the excess liquid.

    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #13
    DrMary said:

    Allergies come on
    at the weirdest times in life. Flixonase is probably the Egyptian brand name of the fluticasone spray we used; nasonex is mometasone - both are topical steroids. It would have to reach the ears through the nasal passages to work anyway, and you might be too blocked up for this to happen. Neither Zyrtec nor Benedryl are decongestants - they are antihistamines, and might actually make the fluid thicker. Have you ever taken Sudafed? If not, I'd ask the doctor first or wait until the appointment, but if you can take it without bad side effects, you might give it a try, along with sleeping as upright as possible and drinking lots of water (these are tips from my allergy doctor - they did help me at my worst, but I didn't have H&NC).

    Sorry you can't do sauna - not enough peasant blood, I guess. It seems like an awfully long time before Monday.

    Sudafed gave me chest pain,
    Sudafed gave me chest pain, irregular heartbeat and palputations. A few yrs ago my docs told me not to take it. My body doesn't like medications so much. I have to watch what I take. Apparently with a lot of Fanconi patients we react to medications easily and don't need as much as other 'normal' peeps. Even with OTC meds, I always started with the children's dose, which was often enough for me.

    Not enough peasant blood. Lol. You are probably correct there. Alledgedly my great grandmother's side, the Torrogrosso side, is descended from Spanish royalty. Like Ferdinand and Isabella. Would explain why I'm not exactly hearty stock. Lol. You know how all those royals intermarried. All kinds of blood disorders and the children weren't well. Actually, when they diagnosed me and my bro with FA, they actually asked if my parents were related. They aren't. Two very diverse backgrounds. Mom is from New Mexico, dad from NYC. My mom is French Canadian, Native American, and like UK countries in there too. Dad is Scillian. Who knows?!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #14
    Hondo said:

    Hi Sweet
    It is a common thing for the ears to become blocked; it does happen mostly in children but can affect adults as well. You might need to get tubes put in your ears to drain off the excess liquid.

    Hondo

    Hondo, both my doc and his
    Hondo, both my doc and his CRNP said to probably prepare myself to be getting tubes in my ears.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #15
    Sweetblood
    Dawn, so sorry you're still so messed up with this. Hope things clear up for you quickly. Cheers.

    Jimbo
  • arndog64
    arndog64 Member Posts: 537
    #16
    Jimbo55 said:

    Sweetblood
    Dawn, so sorry you're still so messed up with this. Hope things clear up for you quickly. Cheers.

    Jimbo

    Sorry you are still on the
    Sorry you are still on the pain coaster. Hopefully you can get some relief SOON!!!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #17
    sweetblood22 said:

    Michelle mentioned she
    Michelle mentioned she suspects allergies, which is weird, because I never had them before. I was on prednisone, It didn't do anything. Not sure about flixonase, but I was on nasonex, and that didn't do it either. Went through two bottles. Tried mucinex, nothing, one bottle of Zyrtec, and also tried Benedryl.

    I would try to put my head over steam, but even if I had access to a sauna, no can do. I don't do well in those things, or in high heat. I throw up then pass out. I wilt like a tiny blossom in a scorching dessert sun. I can barely stand a hot tub these days.

    Allergies
    My daughter suffered terribly with allergies (Pine and Oak) when she was little for several years.

    We always had her on Amoxicillin, it was basically that or tubes, and on growing kids the tubes tend to fall out often.

    Hoping you get some relief soon.

    JG
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #18
    arndog64 said:

    Sorry you are still on the
    Sorry you are still on the pain coaster. Hopefully you can get some relief SOON!!!

    Well I feel awful today, I
    Well I feel awful today, I think my luck ran out with eating all the yogurt. My stomach is killing me today. So, no luck with these antibiotics either. My ears are still clogged.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #19
    sweetblood22 said:

    Well I feel awful today, I
    Well I feel awful today, I think my luck ran out with eating all the yogurt. My stomach is killing me today. So, no luck with these antibiotics either. My ears are still clogged.

    You have probably developed
    You have probably developed resistance to all the antibiotics you are taking. I have not had had an ear infection in years and years and then only one time. I agree, it is miserable. Add to that the fear of cancer return and I can't imagine. I am praying for relief and speedy action by the doctors. Makes you want to wish an ear infection on those who are postponing treatment. LOL

    Blessings
    Debbie
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #20
    jim and i said:

    You have probably developed
    You have probably developed resistance to all the antibiotics you are taking. I have not had had an ear infection in years and years and then only one time. I agree, it is miserable. Add to that the fear of cancer return and I can't imagine. I am praying for relief and speedy action by the doctors. Makes you want to wish an ear infection on those who are postponing treatment. LOL

    Blessings
    Debbie

    I can't imagine I have
    I can't imagine I have developed a resistance to antibiotics. I have only been on them a handful of times in my life. :-/

    That, would truly suck. I hope that's not the case.
  • DrMary
    DrMary Member Posts: 531 Member
    #21
    sweetblood22 said:

    I can't imagine I have
    I can't imagine I have developed a resistance to antibiotics. I have only been on them a handful of times in my life. :-/

    That, would truly suck. I hope that's not the case.

    "You" don't become resistant
    the bacteria do, so you might have picked some up somewhere (rather than having your own native breed of resistant bacteria) from someone else who either has taken lots more antibiotics than you or taken them improperly (the first tends to lead to the second). What can happen is that someone will either not finish the full course of their antibiotic, or it might have been inaccurately prescribed. The few bacteria that might have been slightly resistant to that antibiotic then survive - if one of them gets together with another survivor (they do sometimes conjugate) or if one scoops up some loose DNA that will amplify the resistance gene, then you now have a more resistant strain. Do this a few more times and you have a really resistant strain. (This is why they are not OTC in many countries - the resistant bacteria can spread beyond the person who started them.)

    The good news is that they are not resistant to everything - if you do have a resistant strain, then the doctor can determine the right antibiotic to kill it after taking a culture. However, it could also just be that it is not a bacterial infection - it could be viral or have another cause - hence no relief from antibiotics.

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