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ear and nose fluid leaking after brain surgery
Hi-I just had a quick question, hopefully you can put me on some sort of path. I'm 20 now and last year I had a pilocytic astrocytoma removed from the left side (temporal bone area), September 2004; May of 2005 I started to have clear water like fluid draining out of my nose.(clear water type) (both sides) In october I fell down concrete steps and had blood coming out of my left ear, I went to the emergency room, they told me that I had scraped the inside of my ear with a Q-tip, and I had a tension headache...Ok I guess? so after that incident I started having fluid draining out of my ears, BOTH ears (which is odd I have been told)-just recently I started having pressure type headaches like my head is in a vice. So I went to the doctor (primary care) and now it's allergies. They have taken CT and MRI scans, and we've gone from allergies, to post nasal drip, to skull fracture, to ear infection, to CSF leak and they are thinking that it's allergies. My doctor told me that to diagnose this, it depends how much pain I want to go through. If there's nothing 'wrong' why would it be painful?? I am being extremely persistant (a little frustrated)My next thought is going to an ENT or allergist. So it has almost been a year now- and they are trying to convince me that this has ABSOLUTELY nothing to do with my surgery. I have no previous history of any type of allergies whatsoever. Am I being unreasonable, or should I keep looking for what is 'wrong'? I know this isn't a common thing, so I know that something isn't right-just to what degree...Thank you for your advice, anything helps.
Demi- Thanks for all your help, I apologize if I did something- I'm honestly not sure what happened... anyways thanks again. I'm at netscape.net (user name @)Thanks again and take care
HI PIXIE,
On my posting i dont know why demisguise is continally telling me I am wrong and scaring people. Let alone she is telling me not to post my email address. I have seen many people post there email address to each other so i dont know her hangups. If I scared you any way please forgive me . You can go read my posting on march 5th back and forth with demi. here is a website to go to on what and how a csf leak can happen
http://www.nlm.nih.gov/medlineplus/ency/article/001068.htm
i dont know why she is getting that way with me it is quite upsetting. I have been emailing someone they to were told to test with glucose test strips as CSF has glucose while musocuous doesnt. So demi is screaming at me telling me I am wrong, though ironcially she seems to be the only one upset. Also on the neuor forum the doctor did wrtie back to you to check you nose and ear drippings with a glucose test strip so I dont know why demiguise is getting all upset with this. The doctor also suggested it, That is what I said confused me too. Some doctors agree with the glucose testing others didnt. I apologize to you if demi is right. I have no way of knowing only that demi keeps getting nasty with me on my forum for what i dont know. it is quite upsetting but I just wanted to let you know I was only trying to give you the information I had doing lots of research myself. If you go to the site i posted above it tells you exaclty what I was telling you. She said I was scaring you and giving you misinformation I apoligize if I am but if you read that site you will see I said just what it did. I also said to search and see on these forums what others have said. Please forgive me for any misgivings I am truly only trying to help.
fran
On my posting i dont know why demisguise is continally telling me I am wrong and scaring people. Let alone she is telling me not to post my email address. I have seen many people post there email address to each other so i dont know her hangups. If I scared you any way please forgive me . You can go read my posting on march 5th back and forth with demi. here is a website to go to on what and how a csf leak can happen
http://www.nlm.nih.gov/medlineplus/ency/article/001068.htm
i dont know why she is getting that way with me it is quite upsetting. I have been emailing someone they to were told to test with glucose test strips as CSF has glucose while musocuous doesnt. So demi is screaming at me telling me I am wrong, though ironcially she seems to be the only one upset. Also on the neuor forum the doctor did wrtie back to you to check you nose and ear drippings with a glucose test strip so I dont know why demiguise is getting all upset with this. The doctor also suggested it, That is what I said confused me too. Some doctors agree with the glucose testing others didnt. I apologize to you if demi is right. I have no way of knowing only that demi keeps getting nasty with me on my forum for what i dont know. it is quite upsetting but I just wanted to let you know I was only trying to give you the information I had doing lots of research myself. If you go to the site i posted above it tells you exaclty what I was telling you. She said I was scaring you and giving you misinformation I apoligize if I am but if you read that site you will see I said just what it did. I also said to search and see on these forums what others have said. Please forgive me for any misgivings I am truly only trying to help.
fran
hi
Thanks for being so understanding. I know I find myself very snappy lately its just as frustrating because I dont want to be but when someone never feels good its hard not to. Grateful my husband is so patient. As for the crude comments my conclusion people who do that are so damn insecure and jealous. If people were happy and secure with their lives they would not make rude comments like that. I dont even know you and it made my stomach sink for you. I always truly wish people well wheter I know them or not, I dont know what is wrong with the rest of the world. As for the CSF leak I read what he posted. That was why I found it strange he said to test with glucose test strips. I was told it didnt mean anything. Though reasearch suggests otherwise. I tested postive over and over again. You can buy glucose test strips over the counter is most pharmacy departments and check it at home. Unfortutanelty I never could seem to collect enough fluid to bring to a doctors office for the beta testing. It is always filling up in my ears much more so than coming out my nose. Though I have to say my gut not to confuse you but your symptons sounds like a CSF leak. When I went to the last doctor his first question was did I have any type of head surgery, or sinus surgery. A csf leak can happen when there is a tear in the lining of the brain that surrounds the sinuses. When there is a tear it causes the CSF to leak out. From all my research fluid leaking is the major sympton. It can happen from surgery like you, after a severe sinus infection like me or spontaneous. One other test you can mention is a cisternogram, but find someone complety trained in this field. I did go as I had mentioned for the cisternogram twice I would possibly do it again if it would help. But do some research especially on the neuro fourm the people after us seemed to have major problems with the lumbar punctures which is how they do the cisternogram through the spine. But we must each make up our own decisions. I believe after my first cisternogram I know this sounds strange but after I had the test, fluid started draininng into my neck causing it to crackle doctors told me I was crazy. But who knows our own bodies better than ourselves. I hope so much we can both find answers and help each other. Again ignore anyone who wants to send or speak hurtful they are only jealous and insecure. I will leave you with a quote my grandfather raised me on.
"Take insults as compliments when it comes from the height of ignorance"
Plain english - anyone that insults you is so ignorant you cant take anything they say to heart.
wishing you well
Thanks for being so understanding. I know I find myself very snappy lately its just as frustrating because I dont want to be but when someone never feels good its hard not to. Grateful my husband is so patient. As for the crude comments my conclusion people who do that are so damn insecure and jealous. If people were happy and secure with their lives they would not make rude comments like that. I dont even know you and it made my stomach sink for you. I always truly wish people well wheter I know them or not, I dont know what is wrong with the rest of the world. As for the CSF leak I read what he posted. That was why I found it strange he said to test with glucose test strips. I was told it didnt mean anything. Though reasearch suggests otherwise. I tested postive over and over again. You can buy glucose test strips over the counter is most pharmacy departments and check it at home. Unfortutanelty I never could seem to collect enough fluid to bring to a doctors office for the beta testing. It is always filling up in my ears much more so than coming out my nose. Though I have to say my gut not to confuse you but your symptons sounds like a CSF leak. When I went to the last doctor his first question was did I have any type of head surgery, or sinus surgery. A csf leak can happen when there is a tear in the lining of the brain that surrounds the sinuses. When there is a tear it causes the CSF to leak out. From all my research fluid leaking is the major sympton. It can happen from surgery like you, after a severe sinus infection like me or spontaneous. One other test you can mention is a cisternogram, but find someone complety trained in this field. I did go as I had mentioned for the cisternogram twice I would possibly do it again if it would help. But do some research especially on the neuro fourm the people after us seemed to have major problems with the lumbar punctures which is how they do the cisternogram through the spine. But we must each make up our own decisions. I believe after my first cisternogram I know this sounds strange but after I had the test, fluid started draininng into my neck causing it to crackle doctors told me I was crazy. But who knows our own bodies better than ourselves. I hope so much we can both find answers and help each other. Again ignore anyone who wants to send or speak hurtful they are only jealous and insecure. I will leave you with a quote my grandfather raised me on.
"Take insults as compliments when it comes from the height of ignorance"
Plain english - anyone that insults you is so ignorant you cant take anything they say to heart.
wishing you well
No problem- we're all pretty tense/ frustrated, I snapped at my poor boyfriend the other day for no apparent reason other than everything that is on my mind...not to mention my b/f started a job recently (90 days almost up) and his friends at work decided to tell him what one of the co workers said about me- The only reason that I'm dating my boyfriend is because I'm so "retarded" from my surgery that I don't know any different and no one else would want me. My b/f isn't able to say anything, and I told him not to. The only thing you can do with those people is feel sorry for them. (just a side bar) Demi- your opinion telling me that you don't feel it's CSF is a great feeling, more so than the doctors. You're thinking outside my box, which is good. In the neurosurgery and neurology forum, I posted in there and the Dr. wrote something back to me, see what you think. FCAR- don't worry about it, this is my place to go when other people are really just getting on my nerves, i.e. above...we're going to get answers just unfortunately it is taking so long.
by the way demiguise open forum or not if you have things to say about other people go ahead. I am sure you meant somehting to the effect you cant beleive other people think they are in the same boat as you etc etc etc. Again to this I say when did you become an expert in reading people. How insulting to the many, many, people posting who might BELIEVE they have a CSF leak and who are in some sort of pain, discomfort and filled with frustration. All the while just trying to help themselves and FIND ANSWERS. Maybe also helping other PEOPLE TOO. How upsetting.
AGAIN PIXIE I AM SO SO SORRY FOR THIS Venting I am truly truly upset by this.
AGAIN PIXIE I AM SO SO SORRY FOR THIS Venting I am truly truly upset by this.
This is not the place to vent. But I like everyone else am out to find an answer and only wish others well. I never said I have what the two of you have. I know my problem started after a sinus infection and I have been left with a 24 hour headache and yes fluid that drains inside my head to my ears. It is a disntint pressure and I live in misery and tears everyday trying to figure out what is wrong with me and why doctors cant help me. No medication has helped me thus far. By the way if you eat something sweet than test the moucous in your nose with glucose strips by no means should it just show up with a high glucose reading I dont see the connection eating food and a sign of high sugar thru the nose. It is what it is. the doctor on this forum seemed to think that a glucose test strips signals CSF leaking if it turns the postive shade. Which I tested my muscous months on end and each and everytime I get a postive reading of the darkest color. I also have been told it can be very hard to diganose and that I do have the classic symptons. I have to say I dont know you at all but am very insulted and hurt to hear someone I dont even know make those comments or make comparisons to other people. I just wish people well inlcuding myself. And if in being on this forum people can help each other why not. Why would someone compare themselves to someone else. I dont know what you go thru and you certaintly dont know how I feel. but I can tell you I am always in constant pain my head, and ears never stop hurting. And yes when the fluid drains in my head I have to lay down becasue I get too dizzy and my ears ring nonstop. I hope you read this. If you read this Pixie I am quite sorry for venting. I just wanted to get my point across no one has a right to judge and say who is not like anyone else.
I looked at this forum as a basis for some help and understanding from other people I did not know this was a comparison forum to see who is worse off then others. Again to you Pixie if you are reading this I grealty apologize.
I looked at this forum as a basis for some help and understanding from other people I did not know this was a comparison forum to see who is worse off then others. Again to you Pixie if you are reading this I grealty apologize.
hi pixie you can email me directly. I have seen people post their emails, I am comfortamble with it if you are. it is
***@****
I know its so frtustrating to live this way then have doctors say good news nothing is wrong. If they felt my head they would know something is way not normal. Nor being close to it. Even my family finds it hard to belive I can feel this fluid. So grateful my husband beleives me. He never ever questioned me about it no being normal. He always tells me my gut intisnt is so strong that is why he keeps making me go to doctor after doctor when I just want to give up. That is also just as frustrating when no one believes you feel have what you have. I kept telling myself maybe doctors are right maybe it is mental. Than why does my headaches never disapper and why do I have all this fluid going into my ears that is such an unmistakeable feeling. I know when the fluid is there and when it isnt. My head never feels right and I am always in pain. I know as I said with the way my head feels and with all my heart it is not normal. I know what a normal head feels like and mine is not. Sorry I ramble out of frustration. My luck I have not yet been able to take one test when I feel the fluid building up. The fluid either drains way before the test or I feel it at soon as I leave the exray room. So annoying.
fran
***@****
I know its so frtustrating to live this way then have doctors say good news nothing is wrong. If they felt my head they would know something is way not normal. Nor being close to it. Even my family finds it hard to belive I can feel this fluid. So grateful my husband beleives me. He never ever questioned me about it no being normal. He always tells me my gut intisnt is so strong that is why he keeps making me go to doctor after doctor when I just want to give up. That is also just as frustrating when no one believes you feel have what you have. I kept telling myself maybe doctors are right maybe it is mental. Than why does my headaches never disapper and why do I have all this fluid going into my ears that is such an unmistakeable feeling. I know when the fluid is there and when it isnt. My head never feels right and I am always in pain. I know as I said with the way my head feels and with all my heart it is not normal. I know what a normal head feels like and mine is not. Sorry I ramble out of frustration. My luck I have not yet been able to take one test when I feel the fluid building up. The fluid either drains way before the test or I feel it at soon as I leave the exray room. So annoying.
fran
Oh I feel the fluid, it's like I feel something in my ear almost like crawling, and I'll move me ear and it's squishy...sorry only way to describe it. You know I have been wondering why doctors are saying different things also. It's hard to believe there's THAT big of a difference in opinion. But who are we right? Only the people that are suffering : ) It is actually amazing how many posts are for CSF or possible CSF; can those type of leaks be from sinus problems, some of them are suspected and such. Maybe I'm wrong- I feel like there hasn't been a throrogh search; I'm definately starting to second guess myself. Everything is looking fine, yet it isn't...this is so tiring- oh good news, this is NOT coming from my head. Ok great to know, so it must be gastrointestinal? Ya know no one and nothing are making sense. FCAR keep me posted on the appt. I'm starting to gain your mentality too, everything will show fine, and I'll be fine, and they'll send me home. Love this frustration
hi pixie so sorry. I know what you are going thru I have been going to doctors for over two years with no help. The only thing pushing me is my husband, I cant seem to get up and go anymore unless my husband pushes me to go. I have an appointment coming up the end of March. I am going to see what happens though with my luck nothing changes. Can I ask you a question, do you feel the fluid draining at all in your head. One of my worst symptons is that I actually feel the fluid draining in the inside of my head then filling up into my ears. My ears than hurt and ring. My neck even crackles. I live in NJ beleive me been to see Doctors in NY many times - I have such little respect for doctors. I am also confused. I read what the forum doctor wrote to you. He said to test the fluid for gluocose as I have done this and it tested postive on me I have been told it means abosultey nothing. I cant figure out why doctors are not all on the same page. Why glucose test strip for one doctor means something and to another it doesnt. Have you searched the site after our postings.It seems on this forum and neurology fourm other people seem to have our problem. take care hope to hear from you soon.
Well just as I expected- completely fine. I actually got the surgeon to say I don't know, but you should continue to have it looked at, ENT or internist...he honestly doesn't THINK that's it from my brain- the CT was fine, so maybe I'm wrong? but what else is there?
I look 100% 'normal' if that's the right word, I relearned how to use all my extremeties, walking, etc. The coordination in the left side is still screwed up (arm/foot) I can't wear specific shoes now(I used to be a fashion bug)...I lost the dorsiflxion in my left foot so when I walk my ankle doesn't flex enough to keep a shoe on- crazy right? I was in P/T for months and I think that's about it? or keep trying? I have about an 8 inch incision from the top of my ear (up a half inch)to the bottom of my ear(1/2 in.)My hair is still growing back- Ya know I actually was in court reporting before this happened, after my coordination got messed up, there was no way I could get up to 225 words per minute. That's a thing too, I can't stand!! My short term memory, I can be in the middle of a sentence and completely forget what I was talking about...I will be filling you in after tom. Thanks : )
I am glad to hear that your nerves take that long to regenerate- I have gotten quite used to it by now, and figure if it's the only thing that is lost, I'm lucky...but I'm glad to hear that most everything (?) came back for you- Well at my CT scan they did a coronal- but I wasn't lying face down, I had my head dropped down and back, chin up in the air, so Tuesday is the day- thank you for keeping me sane till then Everything is completely fine with you now...no lingering problems??
Well thank you- unfortunately my age knows how to work against me (blonde hair doesn't help) anyways...I'm writing this before my CT scan which I already have the feeling is going to be fine...can a CSF be this hard to diagnose or is it something else, am I pushing in the wrong direction? Maybe I can just deal with it? BTW : ) I recommended FCAR to this forum- she's having symptoms similar to mind and getting the run around worse than I am...I'm sure you will see her post
If this scan comes back negative- is that it?? Is there any for sure test that will 100% rule this out- And you can honestly have bilateral otorrhea with a CSF leak? Sorry for all the questions, talk soon
Thanks again~!!
If this scan comes back negative- is that it?? Is there any for sure test that will 100% rule this out- And you can honestly have bilateral otorrhea with a CSF leak? Sorry for all the questions, talk soon
Thanks again~!!
You've had a wild ride it sounds like...not a good one either. Getting my medical records does sound like a good idea, because when I came out and till this day, half of my face is numb- I have no feeling on the left side of my face or head and have no taste or smell...I was told that this would return but I got tired of asking about it, because some things we just 'lose from surgery'. So I actually just let it go. I'm 20 I was 19 when this happened, and that's honestly another problem, people act like I have no idea what I'm talking about, just cause of my age.. In physical therapy, I was told that I had a lot of scar tissue buildup that kinda limited my neck mobility---not a lot of inhibited mobility. Anyways like I asked before, even if they diagnose this after all these tests, how does this get fixed, I know it depends where it is, but chances are it'll need surgical repair? I think I might just live with it...I can't say thank you enough, my CT scan is tomorrow and the surgeon is Tuesday, I will keep you posted if ya don't mind : )
Wow!! You have given me more answers than they have- I appreciate it- They did a glucose test and it was negative and my nose isn't dripping enough for the beta test, the MRI's and CT's are normal...can it really be that hard to diagnose? Thanks for all your help Demiguise~! : )
Oh God, I am so sorry to hear about your story... I have been analyzing possible things, and the only thing that fits is a CSF; however, I have fluid coming out of both ears, as I said, which is 'completely complex' says Dr. and not a lot of drainage, with only MRI and glucose test, I have a CT scan on Saturday- but like he said it depends if I want to pursue this and how much pain am I willing to take? Sorry- that's BS...tell me what I have to do to make it right- Can you just live with this sort of thing, or is meningitis a big possibility. They're kinda being close minded telling me that this has nothing to do with the operation and that this is not coming from my head...should I go to an ENT or another surgeon----The kicker is I have the chief of neurosurgery at a hospital in Chicago, can the opinion really be that better? I feel like he's high up there and should know, and who am I to be telling him? (intimidating) I appreciate your novel- This support helps so much because I have my family kinda trying to put it off, but it's not their health, right? Thanks again for all your hard work, talk soon : )
Thank you for your support- my family is trying to tell me that I'm being neurotic. But you know yourself better than anyone right?
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