ANA Discussion Forum
General Category => AN Issues => Topic started by: bpham on May 21, 2009, 01:29:39 pm
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After doing researches on this, I've concluded that I'm pretty much having a small CF leak in my ear somewhere (inner or middle ear). The symptoms seem to match most of what have been described in these articles:
"Other symptoms include neck pain and stiffness, nausea, diplopia, dizziness, hearing loss, photophobia, visual field defects, facial numbness, and, occasionally, radicular pain in the arms."
"Symptoms commonly include headaches, which are more severe in the upright position and are alleviated by supine or head-lowered below chest(Trendelenburg) positioning. There may also be nausea and tinnitus. Horizontal diplopia, change in hearing, tinnitus, blurring of vision, facial numbness and upper limb radicular symptoms (tingling) may occur."
http://emedicine.medscape.com/article/338989-overview
http://www.dizziness-and-balance.com/disorders/central/csf-leak.html
According to one of these articles, there is about 5-12% of TransLab AN would result in the leak with fluid in the middle ear.
I'm currently experiencing some headache, head sensitivity, pressure in the back of the head when laying down (I think due to the CFS leaks that causes less cushion on the brain against the skull, which I did not understand why), some numbness in the left face, some tingling in the left hand and now the whole arm, very bad tinnitus. In addition to this, I've been taking 5 different antibiotics with no results. With these I've concluded that I'm currently experiencing CF leakage.
However, I've also read a number of articles which say that most of the time, bed rest and drink lots of fluid would eventually heal it, but did not read anything specific about the leak in the ear because of the Translab surgery. Can someone tell me if you've experienced with leaks that repaired themselves without any surgery or treatment?
Also, my surgeon seems to be adamant about it is an infection not a leak...about 2 weeks ago and may be because at that time I was not sure what happened and did not explain clearly to him my symptoms, how do I tell him or explain to him that this is not an infection and may be that it is definitely a leak? He insisted before that I should have a lumbar puncture test because of my persistent infection, however, I do not think that this is necessary since the lumbar test also has some risk and if this is not necessary then I don't want to take it?
I thought that I got over this issue 1.5 year ago, but I guess I'm one out of 10 that get this issue with the translab method. In the mean time, I'm planning to take 2 weeks off and get as much rest as I can to see if that helps.
Thanks for any advise.
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You should call your doctor right away and explain your symptoms. I developed a CSF leak from my ear a few days after a retrosigmoid removal. It did not resolve itself and I was operated on while I was still in the hospital recovering from the initial surgery. A few weeks after that I thought I had another leak and was told to come to the hospital right away.
As you know, CSF leaks are serious. If your surgeon is unresponsive, do you have a primary care physician who could intervene on your behalf, or have you thought about going to an emergency room? I'm not trying to alarm you, but if it is a CSF leak, it needs to be attended to.
Good luck!!
staypoz
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I agree with staypoz, you need to get this checked out. The sooner the better. If it was me I would be heading to the nearest ER. Good luck and let us know how you are.
Patty
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Get it checked.
Simple litmus test will confirm CSF.
Get it sorted - All the best
Johno
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Went to HEI yesterday. Doctor confirmed that it is NOT leak. He asked me to bend down for 3 minutes and no fluid coming out from my nose. He sent me to ER across the street and got a lumbar puncture test, CT scan of brain, ear. Results were negative. He gave me another round of antibiotics and I'll be back next Tuesday to see him. At this point, no solution for the issues that I'm having. At least it rules out the possibility of having meningitis which was what he was more concerned with. I have to go with him on this one since he is an expert on this kind thing, which is AN related stuffs.
I'll ask him on other possibilities including allergies, autoimmune disorder, nerves cross-paths, etc.. next week. He is thinking that it is the fat that they put in the hole after the surgery that is infected, that is why the antibiotics do not have any effects. If that is the case, I don't know what they'll do, open it up and clean it??? Don't want to think of that possibility, scary...
In the mean time, i'm having some dizziness, some minor headache, but so far bearable. It might have been helped somewhat due to a couple of benadryl that I took yesterday that kind of knocked me out and I was able to sleep all night and whole afternoon today. What is really bothers me is the noise which seems to excite my AN ear and it in turn, I feel like it is swollen up and fluid is excreted more (just a feeling).
Thanks for those who replied to my post. I'll keep updated my status so may be someone else has/had same issue before.
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Went to HEI yesterday. Doctor confirmed that it is NOT leak. He asked me to bend down for 3 minutes and no fluid coming out from my nose. He sent me to ER across the street and got a lumbar puncture test, CT scan of brain, ear. Results were negative. He gave me another round of antibiotics and I'll be back next Tuesday to see him. At this point, no solution for the issues that I'm having. At least it rules out the possibility of having meningitis which was what he was more concerned with. I have to go with him on this one since he is an expert on this kind thing, which is AN related stuffs.
Thanks for those who replied to my post. I'll keep updated my status so may be someone else has/had same issue before.
No CFS leak to deal with is great news! I hope they figure out your symptoms for you sooner than later. I look forward to your next update.
Kate
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He is thinking that it is the fat that they put in the hole after the surgery that is infected, that is why the antibiotics do not have any effects.
Very good news that you don't have a CSF leak. I'm so glad to hear that.
Question about the possibility of the fat being infected, though. Is this a common occurrence? Did the doc say?
I am obviously not an expert in ANs, but I have never heard of this. And given the fact that your surgery wasn't recent - over a year ago if I read your profile right - I'm a little surprised that this could be a possibility this far post op. Now you've got me wondering if all of us who are "fatheads" might encounter something like this.
Can you give us any more details about this possible infection?
Thanks,
Jan
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I have a feeling that this is a rare occurence. I am now 8 yrs on internet for AN info and have never heard of it I am curious to hear how it happens. My CSF leak was thru the nose and they went back in thru the same incision and redid the fat but added more in eustachian tube. Also did some bone work and also removed the ear drum and put muscle over it. Has a special name for the surgery but I would have to look it up. Was a much shorter surgery and not in ICU then.
Univ of Iowa uses the current neurotology fellow for the open and shut and Gantz does the tumor.
Cheryl R
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Glad to hear that a CSF leak was ruled out, but sorry you are feeling crummy and uncertain about what happens next. I had a CSF leak, but it was at the incision site and I never did leak thru my nose. After all this time, you should be healed and should not have to worry about a leak! Keep us posted on what happens.
Priscilla
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Thank you to all those replied.
I can't imagine anyone has gone through so much like Cheryl and I'm complaining about mine!
Well, today and yesterday, I had some pretty nasty headache, especially today, but I went lay down and sleep and it was OK after that, don't know why. I could be because of the lumbar puncture which they say might give headaches afterward within 48 hours. Hope it does not happen tomorrow and this issue will go away by tomorrow, the Memorial day (wishing for a miracle).
According to him, about the fact infection, that this could be a fat infection and after 1.5 years, however, it is not impossible. I guess that is the reason why he wanted me to take the lumbar puncture test. The lumbar puncture test had me worried for a bit, but it turned out to be nothing much, I did not feel anything during the time when they took the spinal fluid out. Just a bit sore in the lower back yesterday and that is it. However, when they did the test, it was done in a state of the art system which has CT guided system which ensures that the needle goes where it is supposed to, otherwise, you know what might happen.
For some reason, now my right ear also seems to behave strangely. It crackles or clicks every time I swallow saliva or yarn and it seems like it also have some fluid (don't know that for a fact, just feel like).
Don't know what the doctor will do with this come Tuesday. Hope he'll do something to fix this soon, otherwise, I don't think I can work and I'm the only one who works to support the family.
I'll keep you all posted.
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I'm coming in late, but I hope the doc has some answer for you soon. Keep us posted.
Best wishes,
Wendy
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Thanks for the "medical opinion", Cheryl :)
I didn't think this was a very common thing - but I was surprised I've never heard of it before now.
Am really curious to see how this all turns out.
bp - hope you get some relief from your symptoms soon.
Best,
Jan
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Anyone here with a AN problem needs to talk about it and ask questions and see if anyone has answers or if they feel they should be seen by a dr. Over time there is a wide range of things we haven't heard of before.
I am lucky that I have had my ups and downs but I am also more fortunate than some to not have had some of the long term issues that many do. Having the facial numbness and headaches and long term dizziness or eye problems is very hard. These would bother me no end.
The whole AN experience is no fun and the other ANers are the only ones who really understand it esp once we get to the time where we look pretty normal but it sure doesn't always feel that way!
Cheryl R
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I forgot to add that the ear popping and weird noises is the eustachian tube not always closing or opening. I read about it a long time ago and posted but never looked it up again now. I have it on the left side after the last surgery. Never went away but I don't pay attention to it anymore and have to make sure and listen to see if it is still doing it. It is. My surgeon wasn't shook at all. Now why you have it is a mystery.
I am glad you have been checked out so well but am sure it is a worry to not know what will be done about the fat problem.
I know you will keep us posted. Good luck, Cheryl R
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The whole AN experience is no fun and the other ANers are the only ones who really understand it esp once we get to the time where we look pretty normal but it sure doesn't always feel that way!
Very well said, Cheryl ;D
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Forgot to ask, but when you had the CF leaks, did you have pressure in the back of the head when you laid down to sleep? I have it and it is very uncomforatble at bed time, which is why I lost sleep every night.
Thanks.
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Sorry I have to open this new thread since I'd like for more people to read this and see if they have experienced this before and can answer my question.
I've been having headache, fluid in the left ear (AN side), some tingling in the left arm and some stiffness in the left face and also some stiffness in the neck area. The fluid is the middle ear (left) seems to be there most of the time, and sometime I think I can sense it going down the throat, however, there has never been running out of my nose even if I bent down for a few minutes. I don't know if this is leak, however, I've been taking antibiotics (5 different kinds) in the last 2 months with no success.
The question is: yesterday I found out that if I slept with my head up with two pillows under my head, then I had some very uncomfortable pressure in the back of my head. This was how I slept in the past and this was how I was NOT able to sleep in the last 2 months. However, if I use only one flat pillow, and this with my head almost parallel to my body, then the pressure in the head is almost gone. I was able to sleep OK last night thanks to this.
Has anyone experienced this before and if you also had CFS leak? I'm thinking that may be I'm having a very very small leak that might not show up through my nose but it is going down my throat. I understand that the fluid is like water and if there was a leak, even if it is small, shouldn't it go through my nose after bending down for 2 minutes? May be the leak is so small?
I'll ask my doctor today if I can see him pending approval from my HMO.
Thanks.
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I had the drip out the nose leak and no other symptoms what so ever when had my CSF leak. Maybe a slight headache that next day when went back to hospital and put on bedrest for a day. No taste, no way felt different when laid down, Just the drip out the nose. It did it the next day yet so off to surgery. Actually surgery wasn't till evening as no OR room yet till then. I had odd tastes for a while in the throat afterward so was nervous that it was back but it quit and no more.
Wish I was of more help as is no fun to have such a worry. Cheryl R
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I'm not sure this will be helpful, but I'll recount my "leak" experience.
A week after my AN surgery, I complained to the surgeon that I felt like fluid was running down the back of my throat. Other than giving me a spinal tap (!), he pretty much dismissed it. A couple of days later, my head sprung an external leak. They re-opened the site and packed in another round of fat, and that seemed to solve the leak issues.
The really weird thing about the fat-packing procedure was that I was awake the entire time, morphine-assisted, of course.
Peace,
Verl
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Veri,
Interesting. I was given the spinal tap also due to my complain of stiff neck and headache among other things. The results was negative. I wondered what reason that they gave you the spinal tap? Currently like I said, even though I have fluid in my ear and host of other symptoms, especially the issue with head pressure when laying down (this prevents me from getting good sleep), I do not have any fluid sprung out from anywhere including the nose.
THanks.
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bpham,
I was told the spinal tap was done to rule out spinal meningitis, because if fluid can get out, germs can get in. I think your symptoms may also be symptoms of spinal meningitis (but I'm no doctor, so I'm not sure).
Peace,
Verl
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I definitely had spinal meningitis due to my leak. I couldn't sleep well because my leak was internal, at the incision. I had a large goose egg, so large that it was a big lump. Even though it was behind my ear, I couldn't lie flat in bed because of it. My other symptoms were the usual stiff neck, shoulders, headache, and pain in my spine when I walked. They did a spinal tap for two reasons: the first was to determine if there were white blood cells in the spinal fluid (yes) and the second was to relieve the pressure in my head. The goose egg disappeared when that happened They had to do it one more time and then the leak finally healed. I didn't have any fluid in my ear, but I was never really sure if the fluid wasn't leaking down the back of my throat. I'm guessing it wasn't since I had the big goose egg. This leak happened about a month or so after surgery, and the meningitis was diagnosed about two and a half weeks after that. My headaches were pretty bad.
Hope this helps. Some of my symptoms are the same, but I never had the tingling in the arm or anything going on in my face. Good luck with your diagnosis! As you can tell, it isn't exactly a precise science at all times. :-\
Priscilla
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Had the appt with my surgeon. He decided to drain the fluid from my middle ear. A hole was made in the ear drum and fluid was drained from it ( it only hurt a little bit and it helped to know that that ear is deaf anyway). He consulted with his partner on this before he decided to do it. He did show me the fluid in the clear tubing going to the suction machine and it has a yellowish color and not watery either so he said this is infection fluid and not CFS fluid.
After that, the next few days I felt a little better, not a lot though. Now after 10 days, I think i'm getting a little better even though it still is not a lot better. The longer it goes I think it is actually infection somewhere and it takes a long time to get better. At any rate, I'm willing to wait it out and see if it goes away and not thinking of any serious operation/surgery to fix this unless it get worse and intolerable. It seems any operation to fix something bounds to create other problems later on and usually there is no perfect fix for anything.
I'll see him in another week when the insurance approve for me to see him again, what a pain, but at least I'm able to see one of the best doctors.
Thanks.
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Are CFS leaks still possible this far out after surgery? Is it something we will always have to worry about?
I hadn't heard any discussion about this & surprised to see it.
Carolyn
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The CSF leak is usually fairly soon post op but there are occ cases of it being a longish time after. Many weeks to months. I think the long term ones happen when there is more an unusual situitation going on. Mine was 2 weeks. They think mine was due to the use of a new collidal implant that the hospital had changed to. Think cheaper! The surgeon said there was no scar tissue adhering to it and there should have been by 2 weeks. 2 other ANs got leaks also. So they went back to the more expensive product. Medtronic made the one that caused the problem and is a well known medical compnay.
The head will tell you if you are straining too much,even after the 4 week period of being super careful.
Cheryl R
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Mine was 1.5 years...but as time goes by I don' really know if I have leak anymore, actually, I don't know what is my problem (even the doctor does not know)...For now, I'm just gonna say I have infection and see if it will heal after a while. Actually, I have never had fluid coming out of my nose, just something that looks like mucus because it is kind of sticky (sorry...).
One thing that bothers me a lot now is the tinnitus, which I've had for the last 5-6 years, but currently since I've had this condition, it is getting to very bothersome when I talk on the phone or when I just have a conversion with someone. The noise actually sounds like bubbles and water fall and it it is excited by noise then I'm feeling like there is fluid coming out from the inner ear...however, I do not know if that is happening either. The other thing is my head is very sensitive to bumps, touch and motion. Also at night, there seems to be some pressure (or pain?) in the back of the head when I lay down sleeping.
The last two symptoms (head sensitivity and pressure), I've checked with people who have leaks (on the Brain Talk Community forum, there is one group specifically for CFS leak), some have leaks for over one or two years, they do not have those symptoms. They usually have headaches, neck stiffness, lost of balance/dizziness, but not the head sensitivity and pressure. These are the people who have leaks due to various issues, not just because of AN. There was one person who had the AN surgery about 20 years ago and he also had leaks right after the surgery, but some of them let it heal by itself by just resting. However, most got a procedure called "blood patch" to fix the leaks.
Can this be the fat infection like my doctor initially mentioned? However, he does not seem to mention that anymore and I guess that since I already got the spinal tap with negative result, he probably ruled that out because if the fat was infected, then it probably should have gotten the CFS fluid infected as well.
I'll keep update this post as to my condition.
Thanks to all those who have followed this and given me advises, etc...
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One more question.
if the leak is very small, fluid would come from the middle ear and then drip down the throat, not enough to go out the nose, correct? That is what I'm thinking...anyone with experience otherwise, please let me know. I'm concerning about this since my supposedly "infection" does not seem to go away after 3 months and fluid is still in the middle after it was drained 2 weeks ago. Just went to my family doctor and he said that it "seems" like fluid is still in there and I asked him "are you 100% sure" and he said he is NOT 100% sure but it seems like it and he told me to go back to the surgeon since he is the expert and knows lots more than him.
I'm still having issue trying to obtain insurance approval to go back to see him, every time :'(
Thanks for any input.
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My CFS leak in the hospital was a distinct salty taste in the back of my throat. When I leaned my head forward, it was a distinct...drip, drip. When I went back to get my staples out, I was concerned because I started getting a cold & sneezing. I mentioned the "collection" in my nose & the doc said no, it would drip, drip like a leaky faucet.
Hope that helps.
Carolyn
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I had an experience very similar to yours.
At about the 2 month point I started feeling like there was some fluid in my ear and perhaps dripping back into my throat. It was there virtually every day. I had no dripping out of my nose though. Just like you, I started thinking that maybe I had very slow leak. I called one surgeon and the 3 month point I had my follow up MRI and an appointment to see both my surgeons. They both looked at the MRI and I was given an examination of my ears etc... THey said there was no fluid and it was not a leak, but they did not have an explanation. I started thinking it was just a nasal/sinus issue, but I never had anything like that before surgery. It has been 4 months since then. It still recurrs from time to time, but not as often. I have noticed 2 patterns.
1. It seems to be worse after a sneeze a lot and hard (which worries me because I feel like I might be springing a new small leak after it healed). Then again, a sneeze could trigger a nasal drip too.
2. Sometimes temperature changes seem to trigger it. Like if I am in a very humid place after being in cool weather or something like that. Believe it or not, that makes me think it's like condensation building up in the ear....but why now and not before???
I also noticed that very occasionally I get the same feeling in the non AN ear.
At this point, since it is better than it was before I am operating under the assumption there is no leak and it's actually some kind of nasal drip that works itself into my ear area from time to time. Unless it get very annoying or there are other symptoms, I'm going to ignore it. But it is still in the back of my mind as a ??????
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Here is my latest situation.
After 3 month of seeing my surgeon, who insisted 3 weeks ago that I had infection, even when he drained the fluid from my ear, showed me the fluid and said "this is infection". A week ago, when I came back to see him, he did a 180 degree turn-around. He told me that I don't have infection and referred me back to my HMO's Neurologist, who probably would not know what the heck was done to my ear.
He also told me that my issue has nothing to do with his surgery. I was not there to complain about the surgery but because I trust that he knows that area best compared to any other doctors.
My conclusion is this: 1) He does not want to treat me anymore because the HMO started to make it difficult since he had to give them some reports as to why he needs to see me 2) Not enough $$ compared to other patients who probably will have surgeries done and he is extremely busy 3) He might know something like I have a leak and he does not want to do anything with it 4) He does not know how to treat my issues.
Anyway, I was a little disappointed with this doctor and I guess if he does not want to treat me then may be it is better to go to some other doctors.
Currently, my feeling changes day to day. Some days I feel better (ie. less headache, less balance loss, etc...) some days I feel worse. Stress definitely makes it worse and good sleep helps.
I hope that whatever it is, it will get better over time or I'll get used to it and move on.
From what I've learned from another forum (braintalk.com) there is a group for CFS leakers, it is better to leave it alone if possible (if I actually have a leak) and hope that it is going away.
I don't think I have fat infection like my surgeon initially diagnosed me. At this point, whatever he said, I do not have faith.
One word of advise. No matter how long your surgery was, don't exert yourself thinking that you're a normal person now. I think may be I did some heavy exercise which might have caused the leak.
Thanks for all of your supports and encouragement.
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Well if he changed his mind and said it's not an infection, did you ask what made him change his mind and what he thinks it is now????
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Was a culture done of any of the drainage to show it was not an infection? That should have been done to show if any bacteria growing in it. This is all quite a mystery and I don't have an answer. There also can be a lab test to show if is CSF. Mine was sent somewhere for a test called beta transferrin. This was from a big teaching hospital even. My leak was the clear drip from the nose though. Cheryl R
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The first fluid drain, culture was not taken. By the time that it was done, it was too late to ask (my fault). The last time I saw him, he indicated that there IS NO infection. I asked why there is no infection now and before there was? He said, he gave me 3 different strong antibiotics, Lumbar Puncture tests, CT scan of brain, and all were negative and my ear was not red, so there is NO infection and I asked him about one of my symptoms is some pain in the back of the head. He said, when did you have that? I stated that I told him about that symptom every time I saw him!!! At that point, I gave up on this guy. Why bother going to someone whose heart is not in it to treat you.
Before I left I did ask him to drain the fluid and get the culture again and he told me don't do it, it is not worth it because it is easy to get infection from that since my ear is not like normal rear and it is easily exposed to infection which is very serious. I wondered why he did it 3 weeks ago. This gives me some suspicion that he did not want to get the culture may be because it was CFS fluid (am I too paranoid?).
Anyway, he rushed me off and told me to see me in 4 years for checkup. Why should I see this doctor again when I can't trust his judgement anymore?
BTW, Cheryl, when you had the leak, did you have headache and specifically, was your head sensitive to the touch?
Thanks.
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I think at this point it's obvious that regardless of what the problem is, you need to see another doctor for an evaluation and peace of mind.
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There is a chance that once you had been on the antibiotics that the culture wouldn't work anyway as the meds may show no growth even if they were the wrong meds.
I had no symptoms of a leak what so ever. Just the drip from the nose. No headache,no salty taste. My leak was from the use of a new colloidal implant that just wasn't a right product for in the area to help hold it all together. 3 people ended up with a leak,. This was 2 weeks past my facial neuroma surgery and they said there was no scarring of the tissue inside to the colloid which there should have been. They went back to the previously used more expensive colloid. Medtronic made the new type colloid which is a well known medical company.
I am just very curious abouit the cause of your whole situitation. I can't say it is a leak for sure though. This is just a guess and only some slight knowledge from being AN experienced due my NF2 and 3 tumors and being a nurse but no experience what so ever with ANs and brain surgery prior to mine. Now a hip fracture or a gallbladder surgery could be of more knowledge.
Keep at it with the best dr you can find. Cheryl R
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Wcrimi,
You are correct, at that point there is no point talking to him. He told me to come back 4 years for follow up with the AN, but I'll request a different doctor who might be impartial to the MRI result.
Cheryl,
You're also correct that I'm guessing that I have a leak based on all of the symptoms and the fluid in the same ear with the AN surgery that just does not go away with no sign of infection. For now, I'm about 65-70% sure that this is a leak. Hope the 30% is right :)
For some reason, before I had the AN surgery, even though my tumor was only 1cm, but I almost had the whole facial paralysis and had to use steroid to prevent getting worse. After the surgery, I lost the hearing on the left, but the right also got affected. I was losing hearing and had to use 15days of steroid to bring it back. So somehow my nerves were very sensitive and different than most. Currently, my left face is stiff and my ear feels full. The right ear also is affected somewhat (clicking every time I swallow) and feel like there might be water in there but none as confirmed by 3 different doctors.
I'm asking my HMO to allow me to see a well known Neurosurgeon specialized on leak, but for now, I'm not in a hurry to see anyone yet since I want to take time and let it heal by itself. Anytime that I see a new doctor, they always want to have tests which may or may not be invasive. Anything now aday seems to have some consequences and warnings just like any medicine we take have some side effects.
I'll keep you posted. Thank you for following with my thread.
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I read your history and you had surgery at HEI? if so,then you have talked to them? Aren't they usually involved with the patient and if there such a problem then are they who you are seeing? It is definitely not the usual happening so may or may not be an unusual leak happening. I would want an answer right now too.
Cheryl R
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Cheryl,
Yes I had it done at HEI. Just one of those things that went perfect in the first year and a half. Don't know what's going on right now. Yes I did go back to my surgeon in the past 3 months until last week when he decided to turn me away and claimed that it is not the surgery that caused the issue. I did not come back to see him because it is related to the surgery, but because I trusted that he knew best about what was done and what is going on in there. If I went to another doctor, he or she might not know what was done and I would not feel comfortable. I was not back to blame him for the surgery but just to see if he could find out what is wrong and might be able to treat me. I guess my expectation is just too high and I was let down. May be he is an expert in one particular area but not other areas and do not know what the issue is.
I guess if I have to do it again, I would go back to HEI but select another doctor since HEI is still the best place for AN surgery.
Anyway, I'll be looking seeing some other doctor and let's see what will happen.