Paranoid in Montana.....

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phrannie51
phrannie51 Member Posts: 4,716

I've been freaking for about a week.....and can't seem to contain it to myself any more.  I went to the Oncologist on May 22....all was fine....the same ol, same ol......decided to wait till August for another MRI.   Then, 4 days later my right ear (that actual ear) started tingling....pins and needles, without stop.  Strange feeling, but it hasn't gone away.  I got my heavy duty rads on the right side, so for a few days I told myself, maybe another gift.   Well, now it's seven days and my mind is telling me "oh no, you'd better get in and get scanned right away, something is definately afoot"....I actually dug deep in the cupboard and have been taking Lorazapam at night so I can sleep through the committee meeting I'm sure is happening in my head.

Anybody else have ear tingling as a result of rads?  I didn't have a dissection, so I can't blame it on that.

p

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  • PJ47
    PJ47 Member Posts: 376
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    H Phrannie

    What does your Onc. say?  It certainly could be a side effect of the chemo or the radiation.  Call and see what they say.  

    Hug to you,

    PJ

  • KTeacher
    KTeacher Member Posts: 1,103
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    Scans

    By the subject I thought it was scanxiety time.  Ears!  I have had so many problems with my right ear, especially since the abcess in the sinus, surgery and finishing rads and chemo.  Ring so loud I asked the ENT if I can change the ringtone!  Pain with loud noises, I am the one with ear plugs in in church.  Flights cause problems.  I see my ENT regularly, nothing seems to be noticable.  2 weeks ago while visiting my daughter in Portland, drainage.  2 weeks with a leaky ear!  My husband keeps asking me why I still have cotton in my ear.  I had an appointment scheduled for Friday but got a call from the doctor's office, he had an emergency.  (He really did, I haven't checked his carepage recently, he has a son in a coma, son was running a high fever and was rushed to the hospital).  Rescheduled for tomorrow.  If the doctor isn't in I will go to urgent care.  I really should have looked up a doctor in Portland, I have a few names now from people on the FB site.  I have been taking Gabapentin at night to help me sleep.  Glad you have some leftover medicine to help you.  Let us know what the doctor says.  I think a gift!  Sometimes ringing, sometimes it sounds like I'm at the beach, sometimes shrill, not fun.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    KTeacher said:

    Scans

    By the subject I thought it was scanxiety time.  Ears!  I have had so many problems with my right ear, especially since the abcess in the sinus, surgery and finishing rads and chemo.  Ring so loud I asked the ENT if I can change the ringtone!  Pain with loud noises, I am the one with ear plugs in in church.  Flights cause problems.  I see my ENT regularly, nothing seems to be noticable.  2 weeks ago while visiting my daughter in Portland, drainage.  2 weeks with a leaky ear!  My husband keeps asking me why I still have cotton in my ear.  I had an appointment scheduled for Friday but got a call from the doctor's office, he had an emergency.  (He really did, I haven't checked his carepage recently, he has a son in a coma, son was running a high fever and was rushed to the hospital).  Rescheduled for tomorrow.  If the doctor isn't in I will go to urgent care.  I really should have looked up a doctor in Portland, I have a few names now from people on the FB site.  I have been taking Gabapentin at night to help me sleep.  Glad you have some leftover medicine to help you.  Let us know what the doctor says.  I think a gift!  Sometimes ringing, sometimes it sounds like I'm at the beach, sometimes shrill, not fun.

    I've had the ringing in my ears since

    before I was even diagnosed....and it has never gone away.....If this is a sensation due to the gift of rads, I can certainly live with it.....it's the fact that it came on so fast, and hasn't left.....that has me doing mental backflips. 

    The day I was in to see the Onc, everything was just the same as it has been for the last year.....so a scan in August didn't phase me.....now this ear thing has me wanting a scan..........TOMORROW!!! Embarassed  I call and see if they can squeeze me in, and maybe jump start that scan for the next couple of weeks. 

    My problem once I get a case of of heeby jeebies is.....I can't tell where they end and a real "thing" starts.....I get myself so emotionally worked up.....I hate that about myself, but haven't ever found a tool to calm myself in times like these.

    p

  • donfoo
    donfoo Member Posts: 1,771 Member
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    shoot...

    I thought you had left the scanxiety behind. Since you had tinnitus pre-cancer, that says your ears were already not working 100%. Of course rads and chemo don't help but it is probably just old side effect coming back. Just the same, probably worth a call in the morning to report in. I'm sure you are fine.

  • Hondo
    Hondo Member Posts: 6,636 Member
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    P

     

    When my NPC came back the first thing I notice was my ear filling with fluid and my equilibrium was all messed up, it would come and go all day long. I am not sure about what your ear is doing but go by your feeling and call your doctor. It is always best to get it early if there is anything there to worry about. Also there are a lot of others things that can happen to the ear that is not cancer or your NPC coming back, one is fungus, or an infection, or just another side effect. I had them all and they all feel the sane so don’t worry until you see the doctor. I will keep you in my prayers that it is nothing but a bad ear ache.  

     

    Tim Hondo

  • katenorwood
    katenorwood Member Posts: 1,912
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    Put a call in

    Hey P,

    What I do when weird things pop up for no rythmn or reason is to put a call into my onc. nurse.  I'm going to be working with them forever with my dx.  I'm assumming you get rechecks with your ENT on things ?  Just to ease your mind give them a jingle, they don't mind ever. 

    I do get the pins and needles every day, but mine is from nerve damage due to the surgery.  Please let us know what they tell you.  Until you hear, got you tucked safely in my pocket .  Hugs sent !  Katie   

  • hwt
    hwt Member Posts: 2,328 Member
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    Put a call in

    Hey P,

    What I do when weird things pop up for no rythmn or reason is to put a call into my onc. nurse.  I'm going to be working with them forever with my dx.  I'm assumming you get rechecks with your ENT on things ?  Just to ease your mind give them a jingle, they don't mind ever. 

    I do get the pins and needles every day, but mine is from nerve damage due to the surgery.  Please let us know what they tell you.  Until you hear, got you tucked safely in my pocket .  Hugs sent !  Katie   

    P

    It's not like you to overreact so if your body is telling you something is amiss then have it checked out. Most likely nothing serious but nevertheless, no point in being anxious til August.  Since radiation, I do get a buzzing in my ears when I first wake up but then it goes away. 

    I am in the same anxiety boat with seeing my tongue pulsate and have my speech take a turn. I wake each morning and try to say the word "dip". For some reason, I have the most trouble with that "d". My real problem comes at the drive thru window at Dairy Queen because I like dip in my Blizzard!  The radiologist here in STL was no help so now I am seeing the old ENT/Surgeon on Wednesday. If I don't get answers there then it will be back to Mayo or to a Neurologist. I'd be lying if I didn't say I was scared.

    Prayers sent your way! 

  • Guzzle
    Guzzle Member Posts: 710
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    hwt said:

    P

    It's not like you to overreact so if your body is telling you something is amiss then have it checked out. Most likely nothing serious but nevertheless, no point in being anxious til August.  Since radiation, I do get a buzzing in my ears when I first wake up but then it goes away. 

    I am in the same anxiety boat with seeing my tongue pulsate and have my speech take a turn. I wake each morning and try to say the word "dip". For some reason, I have the most trouble with that "d". My real problem comes at the drive thru window at Dairy Queen because I like dip in my Blizzard!  The radiologist here in STL was no help so now I am seeing the old ENT/Surgeon on Wednesday. If I don't get answers there then it will be back to Mayo or to a Neurologist. I'd be lying if I didn't say I was scared.

    Prayers sent your way! 

    Good Luck

     

     

    P. On balance more likely a late side effect. Thinking of you and wishing the best as lots of others here will be .G.

  • Sara1234
    Sara1234 Member Posts: 121
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    Sorry

    To hear you are stressed did you get a doctors app...............Hang in there...........

  • jim and i
    jim and i Member Posts: 1,788 Member
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    Call your doctor dont

    Call your doctor dont continue to stress and lose sleep

     

  • phrannie51
    phrannie51 Member Posts: 4,716
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    I've got an appointment with my

    ENT on the 9th....a week away.  It's my regular monthyly appointment, so will hang in there and hope he can shed some innocent light on the sensation.

    p

  • KTeacher
    KTeacher Member Posts: 1,103
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    Infection

    Outer ear infection for me.  I will be getting ear drops.  Dr. said not to take generic, known to cause nerve damage!  Tear in the membrane also, might heal by itself or might not because of rads.

  • Robyn64
    Robyn64 Member Posts: 124
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    hello

    Hi Phrannie,

    Not really one to comment as my treatment hasnt started yet. But was given all this paperwork. Amongst it all it says... if you get ringing in the ears or numbness and tingling notify staff immediately. I think you need to let them know asap.

    I hope it all works out for you. 

    All the best Phrannie,

    Robyn xx

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Robyn64 said:

    hello

    Hi Phrannie,

    Not really one to comment as my treatment hasnt started yet. But was given all this paperwork. Amongst it all it says... if you get ringing in the ears or numbness and tingling notify staff immediately. I think you need to let them know asap.

    I hope it all works out for you. 

    All the best Phrannie,

    Robyn xx

    Thanks Robyn...

    The ringing in the ears at your stage of this journey, is something they truly want to know about.....it can be from the chemo......Mine started ringing before treatment, and have never stopped.....actually if they stopped ringing now, THAT would make me nervous.  I'm only a week away from the ENT....he always told me if there was a problem, he'd be able to catch it first....before a scan might....and I trust him. 

    I'm nearly 2 years out of treatment, and have seen the radiation gift keep on giving for years after it's over.  If it's just another gift, I'll accept it......(and click my heels, and do a Yee haw on the side that it's not cancer)..... Laughing  I can deal with just about anything rads throw at me, I just don't want to have to get back on the treatment bus.

    p

  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Thanks Robyn...

    The ringing in the ears at your stage of this journey, is something they truly want to know about.....it can be from the chemo......Mine started ringing before treatment, and have never stopped.....actually if they stopped ringing now, THAT would make me nervous.  I'm only a week away from the ENT....he always told me if there was a problem, he'd be able to catch it first....before a scan might....and I trust him. 

    I'm nearly 2 years out of treatment, and have seen the radiation gift keep on giving for years after it's over.  If it's just another gift, I'll accept it......(and click my heels, and do a Yee haw on the side that it's not cancer)..... Laughing  I can deal with just about anything rads throw at me, I just don't want to have to get back on the treatment bus.

    p

    {{{{{HUG}}}}}

    BIG hug to you, Phrannie.  Hang in there.  We need to invent another word for the anxiety that comes apart from the scans and frightens us like a bogyman in the dark!

     

    Deb

  • Laralyn
    Laralyn Member Posts: 532
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    Thanks Robyn...

    The ringing in the ears at your stage of this journey, is something they truly want to know about.....it can be from the chemo......Mine started ringing before treatment, and have never stopped.....actually if they stopped ringing now, THAT would make me nervous.  I'm only a week away from the ENT....he always told me if there was a problem, he'd be able to catch it first....before a scan might....and I trust him. 

    I'm nearly 2 years out of treatment, and have seen the radiation gift keep on giving for years after it's over.  If it's just another gift, I'll accept it......(and click my heels, and do a Yee haw on the side that it's not cancer)..... Laughing  I can deal with just about anything rads throw at me, I just don't want to have to get back on the treatment bus.

    p

    Hang in there!

    I know it's rough dealing with the uncertainty. When I started having trouble breathing, I was really scared about lung mets, and it turned out to be acid reflux. I think if I had a problem with my foot, I would find a way to tie that to cancer recurrance. We all feel that way. :-)

    I'm glad you have an appointment and hopefully the doctor can run a test to put your mind at ease. I'm betting it's another side effect, but let us know what you find out! 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
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    I've got an appointment with my

    ENT on the 9th....a week away.  It's my regular monthyly appointment, so will hang in there and hope he can shed some innocent light on the sensation.

    p

    Chances are........

    Though you wear that silly grin.... you'll be just fine. At close to two years out, you're closer to the threshhold of beating the beast then you were just 6 months ago. I had surgery so I have all sorts of sensations and lack thereof in my head and neck. How it feels varies day to day and sometimes new sensations pop up, hang around, stay, who the heck knows anymore. All I know is it's the "new normal". For us as survivors, anything we deem out of the ordinary, as ordinary as ordinary is, can raise a concern. I'm willing to bet my bottom dollar this is just one of the new ordinaries. I think we have our "new normal" and every day can be a bit above that or a bit below depending on the day and our bodies. This is probably just a small period of a "bit below". See your ENT and bring up the sensation. In the mean time. hold on to the clean and positive check up you just had. Focus on the large amount of positives as opposed to the one negative...  and maybe ask your GP for a chill pill in the meantime ;)

     

    Positive thoughts and prayers

  • Sara1234
    Sara1234 Member Posts: 121
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    I posted

    I posted for you try not to worry to much..................she pretty much went through what you said and was in pain to some pain meds she had in the house ...............all should be ok sending well wishes your way have a good wk and try not to worry ....................make the best out of the wk enjoy ..............It will be nothing I am sure..........................

  • phrannie51
    phrannie51 Member Posts: 4,716
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    I just want you guys to know.....

    how much better I feel when I know you have my back.....only here do I feel like I can expose what a chicken-sh#t I am....how neurotic I can get, yet know also that you all forgive me for my moments of crazy.  T, you've had your share of side effects.....and Laralyn....they kept you on the edge of your seat for months, and you got through that.  I've only got a few days to wait to see the ENT....

    Maybe he'll bump up the scan a few weeks, that's about all I think he can really do.....Thank you guys for being there.....it's SO much appreciated.

    p

  • Sara1234
    Sara1234 Member Posts: 121
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    I just want you guys to know.....

    how much better I feel when I know you have my back.....only here do I feel like I can expose what a chicken-sh#t I am....how neurotic I can get, yet know also that you all forgive me for my moments of crazy.  T, you've had your share of side effects.....and Laralyn....they kept you on the edge of your seat for months, and you got through that.  I've only got a few days to wait to see the ENT....

    Maybe he'll bump up the scan a few weeks, that's about all I think he can really do.....Thank you guys for being there.....it's SO much appreciated.

    p

    Chicken **** not lol

    Come on chicken **** I think not .................it's normal to freak out about stuff especially all that you have gone through.....it's normal........We all worry about our health......At the end of the day we all want the same ...............speak up to your ent and be demanding ..........no need to wait ........I am sure all is good when I spoke to hubbys employe today she was sooo scared she thought for sure cancer was back and then it was nothing ......................so stay calm relax and enjoy your week most important you could be stressing for nothing take some ativan and realx if  u want to talk pm i am here or I have facebook to ..............lol............