Author Topic: I need input from CSF patients  (Read 3262 times)

Mimispree

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I need input from CSF patients
« on: April 05, 2015, 03:27:36 pm »
I don't know if I have a CSF leak or not.  My local clinic and my surgeon in Salt Lake City are of opposite opinions.

My local clinic told me the leaking in my ear is definitely clear and a CSF leak.  He said my eardrum is not perforated and when he did a halo test it was clear it is brain fluid.  In a email response from my surgeon's nurse, he said it's very rare and he's never had a patient with a CSF leak 8 months after surgery.  He also said it would be leaking out of my nose.  I was told to put my head in-between my knees for ten minutes and collect any fluid that may escape.  However, my nose is blocked due to the fat pack (from Translab surgery) and my ever-swollen sinus.  My local clinician said, "You can try it but you're not going to get any fluid because your sinus is so swollen.  It's leaking out of your ear because that's the path of least resistance."  I don't suffer from allergies nor do I get colds, but my sinus is ALWAYS swollen; every doctor tells me the same thing, but it doesn't bother me at all.  My clinician gave me an antihistamine to bring the swelling down so I can try to collect fluid.

After almost a week, I'm still waking-up with dried blood in my outer ear, and when I remove it clear fluid leaks out.  My ear drains all night while I sleep.  The antihistamines are working a bit and this morning there is a thin stream of dried fluid from my nose to the cheek. 

Otherwise, I feel great!  I'm still ridiculously dizzy, but my balance is getting better and my energy is MUCH better.  I really don't know what to think:  I've done some research and I have read that leakage from the ear does happen.  Could it be a coincidence that my swollen sinus makes the situation unusual?  I would really appreciate it if any CSF patients had a similar experience. 

(I did have leakage from my nose shortly after surgery but it stopped after a couple of days.  My eye has leaked almost daily since surgery, but I'm sure it's just blocked up tears.)

Thank you,
Michelle
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Cheryl R

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Re: I need input from CSF patients
« Reply #1 on: April 05, 2015, 04:11:39 pm »
Is their another ENT or dr you can see other than your clinic?      I am also not sure it is a leak because some of your symptoms are not leak but a strange ear sinus infection.      A leak would have no blood tinge.        But I think a ear leak would be all day too in a small amt.          This is not a usual leak if was one.     I wish there was a way you could see someone else.                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

rupert

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Re: I need input from CSF patients
« Reply #2 on: April 05, 2015, 06:12:21 pm »
I would just make an appointment with your surgeon so they can get a first hand look at it just to be on the safe side.

Cheryl R

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Re: I need input from CSF patients
« Reply #3 on: April 05, 2015, 10:05:37 pm »
Michelle is a 5 to 6 hr drive from her surgeon there in Utah.       That is why I wondered if a closer dr to see.
                                              Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

brianharte

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Re: I need input from CSF patients
« Reply #4 on: April 10, 2015, 01:52:11 pm »
I'm curious, have you been sleeping with your AN side facing down on the pillow?