ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: wcrimi on February 18, 2009, 12:56:06 pm
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I mentioned previously that one of my post-op symptoms was a very clogged feeling in my ear on the AN side. Over the weeks, the general trend has been for a less clogged feeling, feeling clogged less often, and slowly improving hearing. That's all somewhat consistent with hearing tests I had done at the 5 week point that suggested that my bone hearing was better than my regular hearing. Even though Dr. Smouha coud not see any fluid issues, he said the fluctuation of the clogged feeling and the bone hearing test results were consistent with fluid being in there somewhere that would eventually dissapate. In the last few weeks (about 3) I have a new symptom almost every day. When I wake up I'll often have no clogged feeling at all. I can be like that for several hours, then all of a sudden I get clogged up. Nothing new there except that right after that I actually feel like something is draining into my ear (fluid). I can feel the moisture deep in there. It feels like I got some water in my ear in the shower or something. I'm not sure if whatever was clogging me up is finally draining out faster or whether I have a slow leak or something and have had that all along. I'm a little concerned, but I otherwise feel fine. I'm scheduled for a follow up MRI tomorrow and then will set up some appointments with Dr. Post and Dr. Smouha, but I'm wondering in the mean time if anyone else has experienced this. If not, perhaps I should try to move up my appointments to get examined. I don't want to ignore a slow leak, but I don't want to be paranoid either. When I was examined at the 5 week point Dr. Smouha was very pleased and said that he thought the probability of a leakage at that point was infintisimal. Any thoughts?
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I would recommend you call your doctor. I developed a CSF leak from my ear a couple of days post-op. I had a second surgery to repair the leak and a few days after being discharged from the hospital, felt as if my ear was leaking again. I went back to the hospital for more tests (scan and ear exam) and there was fluid, but it wasn't CSF and the doctor said it would dissipate, which it did.
Hope it's nothing but post-op junk!
staypoz
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The things is, I am over three months post op.
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I would call your doctor if there is fluid coming out. I had fluid coming out of my ear and it ended up being CSF leak. I had surgery 4-08-08 and the leak happened in July.
Karen
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There is no fluid coming out of my ear. It feels like there are a couple of drops of fluid deep in the ear. It feels like when you just got out of the shower and some water got in there. It's also not constant. Sometimes the feeling is there for an hour or two and then it goes away for the rest of the day. I have my MRI tomorrow. Maybe I should call him after that.
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Hey, Wayne...don't have any words of wisdom for you - just wanted to stop in to say "hi" and I do hope it's nothing serious you're experiencing. I will note, however, that over the last week or so I have noticed my ear feeling "fuller" than it has since early on post-op. And my tinnitus is quite a bit louder. No dripping, though, so doesn't sound like your situation, but just thought I'd commiserate a bit with you. Again, I do hope it's nothing of concern. How are things w/ you otherwise?
Let us know what the MRI and doc find,
Cindy
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Cindy,
For awhile, I felt like my dizziness when walking and active was starting to improve a bit, but then I had a couple of bad weeks. It's hard to pinpoint what could have caused it, but I had a few nights where I didn't get enough sleep. Maybe that was it. Yesterday I felt a little better. I've also noticed that the more time I spend on the computer, the worse my diizziness is when I walk around or go outside right after that. I actually feel better when I work because I spend so much less time on the computer during the day.
I think I'll get my MRI tomorrow and then call Dr. Smouha. I'll let him know what I am experiencing with my ear. I'll let him make the decision for when I should make an appointment. I was due sometime in early March, but maybe he'll push it forward. I also have to see Dr. Post after the MRI as soon as I can get an appointment.
On a positive note, despite the dizziness/wonkyheadedness, my balance still seems to be improving a little in ways I can measure.
One of my exercises is to stand heel to toe or on one leg with my eyes closed. A couple of weeks ago I could barely last a few seconds before having to grab on to something to prevent myself from falling. Now I sometimes last 20-30 seconds. Sometimes I still lose it quickly, but it's definitely improved. I am also walking a little better heel to toe while looking side to side. It's still tough and I lose balance frequently, but it is improving. I just wish the better overall balance would translate into less dizziness. I don't do any running yet, but I ran across the street yesterday (didn't see a car coming). I made it fine, but I think I would have a great deal of difficulty playing tennis like you. I could probably physically do it without falling, but I think the running would make me so dizzy I wouldn't enjoy it for more than a few minutes and would want to stop.
Have you tried any physical therapy exericises like I described to see what you can and cannot do?
Wayne
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I agree with Karen. Only an exam is going to reveal whether it's a CSF leak or something else.
Good luck!!!
staypoz
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My MRI results were sent to Dr. Post and DR. Smouha and they showed nothing unusual. I scheduled an appointment to see both of them on Tuesday March 3rd where they will be able to examine me and look at the actual MRI films (which I have).
Today I also called Dr. Smouha and told him that I've been feeling like I have water in my ear at times during the day. He said from the symptoms I described it wasn't very likely to be a CSF leak, but it could be, so we have to check it out. He said unless I have other symptoms like a headache, liquid running out of my nose or the surgical area, salty taste etc... waiting a few days until next week should be OK. However, if anything else happens to call right away and they'll take a look at it.
I really hope it's not a leak. I've been feeling pretty good this week otherwise, but the stress of worrying what's going on has been tough on me. Someone say a prayer for me.
At least my other health issues are OK. I had my annual checkup with my urologist for my kidney stones yesterday. I have one small one that doesn't need to be treated. Hopefully it will pass on it's own. So I'm good to go until next year. All tests perfect. I've been struggling with stones for a few years. We did a lithotripsy to get break up two of them and the 3rd passed while I was in the hospital recovering from AN surgery.
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At my 5 month post op appt. I was also feeling like my ear was plugged up a little, and wondered if it could be due to the sinus issues I had delt with before my appt. Doc looked at it good, asked if I had had a cold recently, and I replied no, but told him of the sinus issues. He said there was a little fluid in there, but wasn't concerned.
Good luck with your appt. I know for the first couple of months I stressed about a CFS leak big time (but that's my nature. :()
Cathy
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I'm glad that you have been in touch with your doctors and that you have been feeling pretty good. Take it easy and let us know how you make out next week. It's normal to feel stressed out, but it sounds like your doctor doesn't think it IS a CSF leak. Here's hoping it isn't and know that a lot of fellow ANer's are rooting for you!
staypoz
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I just got back from my apppintments with DR. Post and Smouha. My MRI result was perfect and I don't have a CSF leak. ;D
They aren't quite sure what I am feeling in that ear, but there is no fluid. Also, my hearing test showed improved hearing and voice recognition.
Both doctors feel that my dizziness should continue improving in coming months. Dr. Post was more optimistic in terms of timing and end result, but both agreed I would get better than I am now.
I am cleared to participate in any activities I like and don't have to come back for another year.
All in all this was a great day for me. ;D
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Great news! I'm sure that makes you feel much better.
Cheers
Neal
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Great news! Enjoy!!
staypoz
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Good news, Wayne. Every AN patient deserves to have a day they can call "a great day." Glad you had yours!
Steve
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Hello,
I am reading a lot about CSF leaks. What exactly is this? How is it repaired? Is it serious?
Vivian
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It's basically when after surgery spinal/cerebral fluid is leaking from the surgical area. I think I read somewhere where the probability is about 10%, but I'm sure that varies with physician skill. I don't think it's "serious", but it's serious enough to involve further procedures that give it time to heal or it must be repaired. I think if you search around on the message boards you will probably find more info.
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Thanks for replying so quickly. I am seeing my surgeon on Tuesday and want to make sure I understand all the pros and cons before and after surgery. This forum has been great. It's also good to see that whether some people have had slower recoveries, they are all recovering pretty well and most back at work. This is good news.
Vivian
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Vivian,
All recoveries are different. I was driving at about 4-5 weeks and working at 6 weeks. I still have some dizziness (at about 4 months), but it is improving very slowly. I'm not going to tell you it's easy, but my life isn't much different now than it was before surgery. All I can suggest is that you remain calm and bring a list of questions to ask your surgeon (there's one available at this web site). Everyone here will help you get through this the same way they helped me and the same way others before that helped them.
Can I ask how they diagnosed it?
Do you still have useful hearing on the impacted side?
Your tumor is quite small (a good thing).
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Hi. CSF leaks can be serious. You can leak from your nose, ear or from the site. I had four surgeries to fix it. I had from the nose and the ear. Was put in hospital twice for a lumbar drain. The leaks are very rare. I think its 5% of the people get them. My anatomy was against me. Meningitis can occur from having a leak. That is what was told to me by my doctors.
Karen
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Karen,
Did you leak from your nose?
If so, was it an almost constant running nose?
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Hi. Yes I was leaking out the nose and ear so much that I had to keep something stuffed in my nose and ear to soak it up. Not at the same time. It was first nose then ear.
Karen
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Hey Wayne,
My ear still feels funny and I've decided that since there is no medical explanation for it, it might be the nerves. Since I have trigeminal issues I figured that this could be the case. There is also some facial nerve stuff that could be the culprit. But nothings leaking that's for sure. So I've just accepted that my right ear might always feel clogged and strange.
Best,
Marci
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Thanks Marci. The symptom is diminishing a little, but it's still there. As long as my surgeons say there's no leak, I am comfortable. It's not a major inconvenience for me and won't be even if it never goes away. I'm feeling better every month.