ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kenneth_k on May 05, 2010, 12:11:09 pm
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Hello everyone.
It's been three weeks since I visited an ENT. The thing is I felt a warm fluid sensation - gushing - in the operated ear followed by fluid in the throat.
It happened a couple of times for two days.
The ENT admitted, she had no experience with AN's and had never seen an operated patient. She thougt I had a middle ear infection and ordered anti-biotics. She didn't know what to do if I actually had a CSF leak.
After a week, still fluid and warm ear sensations. After two weeks, still fluid and warm ear sensations. After three weeks, still fluid and warm ear sensations. Furthermore, I did some straining garden work, and now it started dripping out the nose.
I called the emergency room doctor, because it was in the evening. She asked if I had a fever or any pain. I didn't, so she told me to call me GP in order to get her to contact an neurotologist for an evaluation.
I did so the following day (today), thorougly explained the situation and asked for advice. Should I avoid physical activity or not? She promised to call me back.
She didn't, so I went to see her. She had not had the time but she felt I should take pay no special attetion to it and do whatever I wanted to do.
Totally unsatisfactory. In pure desperation I bought a glucose strip test kit. I went for a quick walk and tested the fluid comming out of my nose afterwards. It was positive. I know it could be a false positive (50% chance), but it could also bee CSF fluid.
I will reveal this information to my GP tomorrow and press on for clarification. If I get another turn-off, my wife wants me to call the emergency room in the evening, tell them about a possible CSF leak AND claim a headache. I probably will have one due to stress anyhow.
What do you guys think ???
A rather nervous Kenneth.
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I just made another post to another postie about his CSF leak
Read this
http://anausa.org/forum/index.php?topic=12421.msg143512#msg143512
You need to see a DR with experience. (You cannot count on that always in ER) You need a referral to a specialist ASAP.
Have you tried a perscription of diamox yet?
http://en.wikipedia.org/wiki/Acetazolamide
Hear is a CSF leak link to muse
http://www.umm.edu/ency/article/001068.htm
Here is an archive from past ANA posties who had the same problem.
http://www.dinagoldin.com/anarchive/csf.htm
HUGS
DHM :)
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Have you talked to your surgeon? They are the only ones who really know. I did not have this feel with my leak but then there can be several ways of feeling something when it is not going quite right. Do you have a drip from your nose if keep head bent over by your knees and you can drip like a faucet and accumulate some in a cup when keep bent over. That is how my surgeon checks for a CSF leak.
My surgeon does not do the glucose test. I have lots of nose running when active and get too warm and know many others who do also. I do know well how one can be very nervous when there is odd things going on and not sure what it is.
Cheryl R
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Oh Kenneth if there is fluid down your throat and out your nose my guess is that you are correct. Does the fluid down your throat taste salty? I also had a leak and it was salty to taste and only came out my nose when I leaned forward. Sorry if you are having taste problems as this would be totally a waste of time. However you should for sure try to lay low and relax and do not do any physical activity. I'm not sure why the Dr's have been so nonchalant. They need to take this seriously, call your neuro and get them to recommend someone to see.
Hopefully everything works out for you...don't take this lying down (unless you get a spinal headache, then you don't really have a choice)
Liz
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Well, I'm off to the hospital to see competent neurosurgeons. I will update when I'm back. Who knows what will happen. It may take a couple of days.
See you. Kenneth
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I'm back. That was quick.
They believe I have a small CSF leak due to a fistula. They will speed up the follow-up scan and change it from MRI to CT. (The waiting list is shorter). The result will be forwarded it to the specialists. They will decide, I they should do re-surgery or if the leak stops by it self.
This has been a most disturbing day.
Best regards, Kenneth
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Kenneth ~
I'm sorry to learn of this unwanted problem you're having but at least the source of the CSF leak seems to have been located and something can be done. Like you, I hope it doesn't require surgery but if it does, I'm sure you'll come through it in good shape (and leak-free).
Jim
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I'm back. That was quick.
They believe I have a small CSF leak due to a fistula. They will speed up the follow-up scan and change it from MRI to CT. (The waiting list is shorter).
Ken,
HUGS.
Please know that the MRI will expose your brain to less radiation than a CT scan. I recently did a CT on my sinuses and wish I had not. Try to be noisy about insisting on getting an MRI...
Here is a news video on the topic of radiation exposure from CT scans
http://abcnews.go.com/Health/CancerPreventionAndTreatment/ct-scan-radiation-lead-29000-cancers-researchers-warn/story?id=9340190
In the meantime lay low and try to reduce germ exposure. Also stay clear of salts and try to eat diuretic foods as to avoid water retention. Here is a list of diretic foods
http://www.everydiet.org/diet/diuretic-diet
There are probably better lists but that is the 1st one I googled...
Has anyone (ie DR) suggested Diamox yet to you?
DHM
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Great links, especially the "everydiet" site. Kenneth, isn't that always the way it works, the doctor is never in the office the day you need them. Heaven forbid I should need anything from my doctor's office except on Tuesdays and Fridays. Take care!
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Kenneth,
I'm sorry to hear you might have a CSF leak It's very disturbing that you had to work so hard to get someone to take you seriously, but hopefully things will move quicker now that you have a CT scan scheduled. In the meantime, try to relax and not overdo things.
Best wishes,
Wendy