ANA Discussion Forum
General Category => AN Issues => Topic started by: Palace on January 30, 2007, 10:23:58 pm
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hello all...
as you know...I'm typing mostly left-handed since my rt. side shoulder surg, last Friday.
I wasn't nervous about that surgery, at all.
Tomorrow morning is the ENT doctor appt. early. (RE: fluid behind the ear-drum; not knowing if the prescribed drying pills worked or not along with the nasal spray) I'm very anxious tonight, worried and sad. I'm not "up" for the possible lancing of the ear-drum and more hearing loss. I'm surprised at myself. Usually, I'm quite brave. I feel so sad tonight and "very down" about this. I will be so happy tomorrow night upon my return home, if the doctor tells me that he doesn't need to do this procedure, tomorrow morning. I can't tell by the way my ear feels if he will be doing this or not.
I will be celebrating tomorrow night with a special meal if the meds worked and I escape this little surgery that is done in the office. Darn, I just had major surgery, last Friday and that hurts like heck. I was very brave through that surgery and will post soon, what happened. There were a couple of snags but, nothing really bad as, it turned out. I go back to the surgeon on Monday to discuss what the camera found and what was added to the list of the operations done that late afternoon. (last Friday)
A nurse from Sutter Hospital just called to check up on me. I got off the computer and took the call just now. The hospital gave me a size large sling and I needed a size small. (oh well, full of stories here on this surgery, to tell you all at another time when I can type) I don't do well with hunt and peck, left-haded.
The bottom line on that surgery Fri. was..........when I got to recovery, I was having mega trouble breathing. My voice was barely audible for hours. They kept me many extra hours. They ordered a chest/lung X-ray on the spot for possible pneumonia or ? I was gasping/wheasing for breath. It was scary and frightening but, I knew I was in good hands. After all the anatheisiologists and doctors calling each other back and forth and many hours later, they decided it was my "scholiosis" causing the problem. (no room to breath.........oxygenate the lungs with having anaesthetic) It was the curvature of the spine so, they released me once checking if I could lay flat and breath somewhat for ten minutes in that position.
I got released way late and my husband finally got to drive his big dog which had 50-60 stitches in him at the time.....home along with me all groggy, weird in the rain storm. The little red dog was bored to death after waiting about 12 hours for me, all total, to come home.
I'm just having a very hard time relating and thinking of tomorrow. If they don't have to take away more of my hearing and do this procedure, I will be back to a normal person tomorrow night. I know this isn't a big deal but, I tried to save some of the hearing with the Cyberknife, last year and now this. I want so much not to have my ear drum lanced.
Does anyone have any kind words or positive information on this subject? I'm still brave but, worn down. Would this be called surgery #22? (or would you even call it a surgery?) Most of my surgeries were big and major. (#21 was the shoulder surgery) It will be interesting on Monday to go over what they found and did in that shoulder with the water camera. It hurts so much, they must have done lots. I will begin physical therapy soon, for that arm.
I tried to lay down to sleep and just can't. I'm worried about this. I don't want them to cut if there is still a chance it could clear up later down the road. (or is it dangerous to let it go and the ear-drum would burst; probably?)
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Hugs to all,
Palace
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thinking of you Palace, and crossing fingers and toes too. Hope all goes the way you want it to go!
Ciao
Lorenzo
:)
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Hey Palace:
Sending out prayers & good thoughts to you this morning.
Don't blame you for being worried, you've been going through ALOT,
I know it gets tiring, especially when it's one thing after another, like what you're going through now.
Hang in there girlfriend,
Nancy
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Good Morning Palace,
I just read your thread. I don't have anything to contribute on the issue you are experiencing, I don't know anything about what you are experiencing.
I just wanted you to know I am thinking about you and wish you the very best today at your appointment.
Denise
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I tried to lay down to sleep and just can't. I'm worried about this. I don't want them to cut if there is still a chance it could clear up later down the road. (or is it dangerous to let it go and the ear-drum would burst; probably?)
I'm so sorry you're having such a hard time with this. I completely understand and am sending lots of hugs your way!
As for the bursting ear drum, the answer to how serious that is is "it depends." As a kid I had *tons* of ear infections (alway in the non-AN ear, btw). My eardrum burst several times, but usually just a small rupture that repaired itself. When I was 6, however, I had a rupture that took out 1/3 of the eardrum and I needed surgery to fix it. The result of that surgery was very mild high tone frequency hearing loss in my non-AN ear.
I'm not sure I'd be comfortable letting the fluid build-up go and chancing the outcome of a burst eardrum. But that's me given my particular history. You do what you're comfortable with.
Good luck!
Katie
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Hi and sorry to be late on the post....but I did have said little proceedure performed several years ago, and really it was no biggie....really, sounds horrid, but in reality the worst part was the numbing fluid they put in your ear first..they tell you it stings a little...let me tell you..it stings alot!!!, but not any worse than say going to the dentist, and then as soon as they poke that wonderful little hole, you feel like a gallon of water is draining from your ear..auuuuhhhhh,, what a relief....it is really so microscopic that you dont even need to clean your ear out, but it will feel alot better and it never hurt after that from the "poked hole" so don't fret. I wish I had seen your post before, to reassure you, but in case you get this in time, no need to fret. It does sound just awful, but in reality it is actually better than going to the dentist I assure you, and although I don't imaging most of us are thrilled with going to the dentist, we have all lived through it and for most of us without major pain or anything......good luck and let me know
Ceeceek
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Cons. Fluid behind the Eardrum data:
*The (ENT) doctor comes in, promptly gets the gloves on and is ready to (look in the ear) and to do the procedure. (takes the look and finds the fluid there) This doctor told me before, when I called about the extreme pressure I was still having a couple of weeks ago, that most of his patients take the meds I was given and it would drain within about three or four weeks, at most. He was not really ready to consult with me or have a discussion. I asked the question right away about how long it might still be possible to have it drain, on its’ own. He told me the two extra months and I promptly told him, I’d give it more of a chance. (meaning another eight weeks) He takes the chart and begins to exit the room. So, my time was up and that was about it. I sat back down and began to inform the doctor that I HAD some questions to base/make my decision. I wasn’t really decided but, I could see I needed to inform the doctor that I need information to justify the proper decision. I couldn’t just walk out. I need much more information than looking and finding out yes, there is still fluid. Well, I can feel it and yes, I could have told him however, I wanted him to look in there. He was informing me a few times, “You aren’t going to die from this.� Well, no………I’m aware of that but, I would like an intelligent conversation to make the decision and feel good about it. The doctor said that it would drive him nuts if it were him and he would probably have it cut, very soon. Here is the information I learned from the doctor with his hand holding the chart in the operatory doorway…..
1. It can take as much as, two more months for estuation tube to drain on its’ own. (so, hearing that, I opted for no lancing and no tube placed) The tube would be in there so the doctor said, about a year or so.
2. I won’t be able to take a plane while I have this fluid behind the Eardrum. We have no trips planned, anyway.
3. If I catch a cold, then fluid in there would almost always, “harbor� bacteria.
4. Continuing allergy spray can help with the possible drainage of fluid, issue. (work towards my goal of not having the procedure done, if possible)
5. To hold your nostrils pinched closed and gently blow air pressure a few times a day, helps to have the fluid drain, if it is at all possible to do so. I’ve been trying that for this one-month period as, the audiologist informed me about that “trick,� before.
6. If I had the Eardrum lanced then there is a slight chance that the hole might not close. (very rarely does this happen)
7. What a person such as myself who has had Cyberknife will endure with the fluid behind the eardrum, is about 10 percent or more, extra (not permanent) hearing loss. This is just what you experience with the fluid behind the eardrum. By lancing it, then there is some permanent hearing loss of certain tones/pitch.
8. A person who has had the radiation (Gamma or Cyber) may have scar tissue in there, helping block the fluid behind the eardrum.
*Now, I respect the doctors time and knowledge but, we can’t get everything, online!
I called Stanford when I got home to let them know what was going on. They (Stanford) had me go see the ENT doctor (and audiologist) in the first place when I reported added pressure and ear-pain. (that was a few weeks ago when I had the hearing test once again and they found out that it was fluid behind the eardrum) I believe the radiologist (and or the surgeon) will be contacting the ENT doctor to discuss my case. I feel better about all this than I did last night when I wasn't sure what would happen.
Oh, I did stop by the surgeon’s office and they fitted me for the proper sling but, I only need to wear it two more days, anyway. I signed more papers for this company (slightly different type than the hospital gave me) and they will bill my insurance company.
With that, I thank all doctors that have worked on me, for their time an effort.
Regards.
Palace
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Hi Palace,
Good to hear your arm needs the sling only two more days. Best wishes for recovery from that op.
I didn't realize you were questioning/wondering having the eardrum done to relieve that pressure and fluid? Wanted to let you know I've had tube(s) in my ears for a couple of decades lol ....i was always much relieved and happy to get that done because 1) it was great to hear again..well that was before my An and loss of hearing in one ear .. ;D 2) yup, i could fly anywhere and never have my ears pop which was wonderful 3) I felt nothing during the procedure ( I have had two talented ENT's) 4) what a relief to have the pressure gone.
It's a really easy procedure for me. Just wanted to let you know.
Cheers,
Windsong
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Sorry to see you going through all this stuff Palace. Stay strong and keep the faith!!
Your buddy......Paul
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Stanford called.....
They said that the fluid isn't from the radiation but, from the tumor being there. (the fluid behind the eardrum)
Right now, I'm going into the fourth day of "sick to tummy," diarrhea and feeling of my colon/stomach area being carved up 24 hours a day.
For anyone interested in this subject, I was given two prescriptions for the pharmacy. I got into the local medical clinic. It was that or emergency again, today. I can't take my pain meds or sleeping pills, obviously. I can't hold anything down. The physician today gave me Dicylomine 10mg for pain and Promethegan 25mg. While having consultation at the clinic, they gave me a anti-nausea shot.
This was my week and I'm enduring the shoulder pain. I don't feel releif for the shoulder with the new pain meds. It did cut the tummy pain in half or I wouldn't be trying to post to the list.
I do need to get off the computer.
Thank you everyone for your help....(and private emails)
This has been HELL since, early Tues., PM.
Regards,
Palace
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;D
Hello:
Well, I made a "remarkable recovery," and I'm back with you on the forum. I'll read the posts but, I will ask the surgeon if it is OK to type, when I go to the appt. on Monday. It hurts LOTS to type because, I'm not taking the pain meds at all. My stomach and colon couldn't take all the pills, and stuff.
What I'm on for is to mention that when I do the sort of blowing while holding the nose-thing the doctor said I need to do to open it up. I'm getting that bubble sound which means it is opening up somewhat and draining. I will try the nasal sprays again daily once I feel up to it. Heck, I was at the doctor's just yesterday for the anti-nausea shot and I'm amazed that I went from laying on the floor with knife stabbing tummy and colon pains and the bathroom trips to feeling almost normal now. The three days of dying may have opened the ear canal. (just kidding) Anyway, I'll keep you posted to let you know if I can beat this thing and not have the eardrum lanced.
I'm thinking of all of you but, it is a "killer" on the arm without the pain meds. I'm doing it without. Physical therapy will be painful, too. I hope my tummy can take the anti-inflammatory pills by then.
Thank you for your support; I can hardly type these last few lines. I'm using the right arm now but, it is soooooooo painful to type. (almost impossible) Anyway, I'm with you guys and gals just lurking for now. It will be a couple of months before, I really can respond.
Thx for being there for me and I hope I have helped others in the past,
Palace 8)
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Hi Palace
I haven't been on in a few days...how so unlike me! LOL
My son had his ear plugged up when he was little and they wanted to do ear surgery to which I declined. There was a chance is I left it too long he could be permanently deaf he was partially at that time. I think if i remember correctly within in 3 mos it cleared up on it's own. Hopefully you're situation will resolve on it's own very soon!
Good Luck with the thearpy. I think I spent my last two years in therapy and hated it! LOL I know it does help though.
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Palace,
So sorry to hear that you've had to go through so much. I know after my AN surgery, I was given one of those shots because I became so nauceous and the doctor didn't want me to throw up! It worked so fast I couldn't believe it. Maybe you can use cold or heat (probably cold) to help with the pain? Hopefully the doctor will have some answers for you. I hope you are feeling better ASAP! Take care and we'll be thinking of you.
~Karen
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HELLO FRIENDS:
;D I'll see the ENT the end of March or in early April for the final news whether it fianlly drained on its' own. If not, I will have the little surgery done.
I'm a bit exhausted on surgery right now after having Cyberknife one month, shoulderer surgery the next and that big stomach flu strain happen to me four days upon arriving home from the shoulder surgery and now the torn Vitrea behind the eye.
Thank you for all you information on this subject. Are there anymore people that had the little slice to to open behind the eardrum with the little drain insurted for a year or so?
Dropping out...........for a long while........Pal ;)
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Hi Palace - I'm sorry I don't know anything about that, but just wanted to let you know that I am thinking of you, and wishing you well. Hopefully this will be behind you soon. You need something to look forward to. Any vacation spot you'd like to go to once you are better? Bless you. We are all rooting for you!!
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Palace, You will be in my prayers. I want life to be still for you. Spring is coming!
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Palace,
I hope all is going better for you. You have been in my thoughts.
Take Care
Denise
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Palace,
Keeping you in my thoughts and praryers. Between you and the doggies, I don't think you have had a moments rest in the last couple of months. I am worried about you, but I know your hubby is taking good care of you.
hugs and :-*
Cheryl
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Palace, you don't say what the fluid behind your eardrum is. I had a similar problem but the fluid filling up my ear and draining down my eustachian tube was CSF. I didn't know I had this leak until 3 months after my initial AN surgery because the fluid was not coming out my nose, which I would have noticed sooner, but was draining down my eustachian tube.
To verify this the ENT surgeon poked a hole in my eardrum (after numbing it) and drew out fluid in a syringe. He knew right away what it was and said he would have to operate ASAP to stop the leak. He warned me that the needle puncture of my eardrum might let bacteria in and I was at risk for getting meningitis. He operated 2 days later, which was the soonest he could get my neurosurgeon's help to place a spinal fluid drain in my back.
I DID have meningitis by the time I got to the hospital. I threw up in the car all the way there. The operation obliterated my already deaf left ear. The ENT surgeon had told me it would be impossible to find exactly where the leak was coming from so he would have to do major surgery. He removed 2 of the bones - anvil and stirrup I think. He put bone wax, fat, muscle and some synthetic stuff in my ear and eustachian tube to block out the CSF and replaced my eardrum with a flap of skin. I was in the hospital for 5 days, 3 of which were spent draining spinal fluid every 6 hours. I had massive amounts of antibiotics for the meningitis. They even put a PIC line in my arm so I could continue intravenous antibiotics for several days after I got home.
This past summer, 9 months after my ear surgery, something started to drain out of my ear. I thought there's nothing there. How could anything come out? I wasn't really worried though because I knew it wasn't CSF fluid. I was more like drainage from an infection and it smelled terrible. I didn't go to the doctor about it for months. It didn't hurt, only itched sometimes. When I finally went to my local ENT doctor this month he suctioned the "stuff" out of my ear to culture for a bacterial or fungal infection. His office called me back later and told me I had a "perfuse" MRSA infection. I asked what "perfuse" meant and they said "a whole lot". They explained that MRSA is the kind of infection you hear about hospitals having such a hard time with. It is antiobiotic resistant and very hard to get rid of. MRSA stands for "methycillin resistant staphyloccocus aureus". So now I am putting an antibiotic cream called Bactroban in my ear twice a day.
What worries me is that this bacteria is closely related to the bacteria that causes the "flesh-eating disease" (necrotizing fasciitis). Usually this disease is caused by a Strep infection but Staphylococcus aureus has been know to cause it too. If I get that in my ear I'll probably be dead in a day.
Maybe this story will make you think that having a drain in your ear for awhile doesn't sound so bad.
Seriously though, I hope you don't have to have ANYTHING done!