CFS leak question

[bpham]

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.

[bpham]

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.

[Cheryl R]

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

[vjgfamily]

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

[bpham]

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.

[vjgfamily]

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

[msmaggie]

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

[bpham]

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.

[heyct]

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

[Cheryl R]

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

[bpham]

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...

[bpham]

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.

[heyct]

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

[wcrimi]

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


 

 

[bpham]

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.