CFS leak question

[bpham]

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.

[staypoz]

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

[alwaysthere]

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

[Johno]

Get it checked.
Simple litmus test will confirm CSF.
Get it sorted - All the best
Johno

[bpham]

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.

[Kate B]

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

[leapyrtwins]

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

[Cheryl R]

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

[msmaggie]

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

[bpham]

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.

[wendysig]

I'm coming in late, but I hope the doc has some answer for you soon.  Keep us posted.

Best wishes,
Wendy

[leapyrtwins]

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

[Cheryl R]

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

[Cheryl R]

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

[leapyrtwins]

               
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