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#115183 04-08-2010 11:49 AM
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David2 Offline OP
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I've read a couple of threads dealing with this issue but have a question or two for those of you who've gone through it.

Since shortly after the end of RT last summer I've had fluid buildup behind the drum in my right ear. Long story short my ENT has been treating it with nose spray (Omnaris) to try and dry it up. He also slit my eardrum and drained the fluid maybe 5 or 6 months ago. Naturally, it returned.

He tells me that the only other solution is to put a tube in, but that there's no guarantee it would stay in place for any length of time. Says he's seen some stay for 5 years and others fall out after 5 days. My RO tells me that she's seen the fluid dry up naturally (or maybe with spray help) after a long period of time, e.g. a couple of years.

So...

1. I'd love to hear about anyone's experiences with these tubes, especially if they worked well or not at all.

2. If you elected not to have the tube but to try other methods (whether what I'm doing or other), what were they and how did they turn out?

3. Opinions: does long term fluid in the ear (i.e. waiting it out the way I am and hoping it will eventually drain) cause any permanent damage?

Any other thoughts greatly appreciated.

Thanks, All.

David, Jr.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Hi David!

I've had this problem after surgery and I opted to let it run its course naturally as I didnt want to get a tube placed prior to radiation. I was told the radiation could possibly cause the hole to heal slowly or not at all. The fluid did go away but soon came back with any small amount of nasal drainage.

After treatment was over and I was tired of not being able to hear properly anymore, I asked for the tube and was surprised at how easy and small the procedure was. Unfortunately I've only had it for less than 2 months and was told that it looks like its starting to wiggle out. I was told the same as you about the timeframe. It helped clear the fluid out and I can hear again. If it indeed fall out soon, I will try to see what happens without it but I am aware that I may need a permanent tube if warranted in the future.


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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David2 Offline OP
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Thanks, Elizabeth. I'm sorry your tube is falling out. I wasn't aware there were permanent and temporary ones, need to ask my doc about that. Great that it cleared the fluid though. It seems logical to me that the further in time one gets away from the end of treatment, the less fluid ought to build up. Theoretically...

But if I've learned anything from the last year or so it's that nothing is certain!

Mainly I'm delighted to read that "scans all clear!" for you. Same so far for me, next one's in June.

David (er, El Secundo)


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Ive had tubes put in my ears for HBO. The first set lasted 1.5 years. The one fell out during a routine ear cleaning by my ENT. I recently had it reinserted along with a new one on the other side too. Its the easiest surgery Ive ever had, no big deal at all. You may feel slight amount of pain the day of surgery, nothing worse than regular tylenol can control.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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David, I had to have tubes put in and on replaced after 2 weeks. Now the right one is loose and the Dr will take them both out soon. I seem to have many earaches from them , not just in my ear but the whole area around the ear. I wish I knew what advice I could give but we are all different they say. Good luck with them and keep them from getting water in them when you shower. Some ear plugs work pretty good at this. Originally the tubes were for HBO because my ears wouldn't hold presure.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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David2 Offline OP
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Christine and Jim - thanks much for your contributions. Christine, the first time my ENT slit my eardrum to drain it he did it in his office with some local anesthetic. Said he'd likely be doing the tube the same way. I can't say it was a pleasant experience! But I have a pretty high pain threshhold after all this stuff. I was pleased to read how long yours stayed in.

Jim, sorry to hear about the earaches. Guess I'll have to see if and when the time comes. Something tells me my diving career is over...

D2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I was put under to have the tubes put in and the same for the one he replaced. I have no idea why or even if it would hurt except the Dr wanted me out because he said pain and much of it. maybe when he put the tubes in they let the air between my ears escape. LOL Dave, what type of driving are you talking about?? I drove myself to all of my treatments including rads and chemo. It was miserable but I had no choice. All interstate so if you are talking driving your car, it is possible for you to drive. But a semi I would exclude for sure.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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David2 Offline OP
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Boy Jim, that sounds like a bear...

Yes, it's unquestionably painful to have your eardrum cut open, even with a dab of Lydocaine or whatever they use. I expect the tubal insertion will be even more, er, uncomfortable. My doc told me "I think you can tolerate it." Easy for him!

Think you misread my comment there at the end, It was "diving", not "driving". I used to scuba in my wasted youth, haven't done it lately but always promised myself I'd get back to it. But I have a feeling that too is part of the past!

Thanks for responding again.
D


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I was very surprised to hear that others here had tubes falling out on their own. I had never heard of that and assumed it didn't happen as in Carol's case.

Carol had a right ear mastoidectomy at about age 14 after years of suffering from severe ear pain. She still has the same drain tube and hasn't had any complications from it (tube), but because of the type surgery she had, she is deaf in the right ear. I always wonder if her tube should have been replaced as she grew older.......I suppose "don't fix what ain't broke" would apply here.

After going through Carboplatin, she has difficulty hearing with her left ear. For a short time she was hearing well, like her ear "popped", but now can not. Her follow up appointments aren't until the end of this month, and right now Carol is opting NOT to have any surgery done on her ear. Hopefully by then she'll regain some of her hearing or if not, she'll be more receptive to whatever options she'll have (permanent drain tube). Carol did have fluid behind her ear canal but says she can't feel it now. She says the fluid is like a "sloshing" feeling.

With the "worst" tree pollen allergies this area has seen as far as anyone can remember, it doesn't help Carol with her sinuses or her after treatment issues.







CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died




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David2 Offline OP
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ElCee - so sorry to read about all of Carol's troubles. The sloshing feeling is familiar although to me if feels more like a shift in the fluid when I move my head far to the side. But it always comes back quickly to being blocked again.

Here's hoping she gets all her left side hearing back!
D.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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