CSF??

[Dabs4811]

I had a downturn of my condition -- increased dizziness, trouble sleeping, and taste changes.  Could this have anything to do with a CSF leak or is it just what sometimes happens after surgery?

Dee

[Kathleen_Mc]

Dee: I had trouble sleeping after both of my resections and found the dizziness increasing when I was too tired. I would check in with my surgeon though if I were you.
Kathleen

[Captain Deb]

Generally indicators of a CSF leak are headache, and clear fluid running from the nose or ear. My neuro suspected that I had one, but minus the drip-drip.  Had a CT and an MRI and zip--nada.  Healing after such a major surgery often has roller-coaster-like aspects--upturns, plateaus, downturns, and the like.  Hope you have found a good neurologist post-op or have access to your same surgeon or internist.  Contacting you Health care pro is the best bet.
Capt Deb

[Dabs4811]

Hi Capt. Deb,

Your comment reminds me of something I had forgotten.   Late last week I DID have several episodes of a leaking nose and wondered about it but then it stopped.  No headache, though.  I'll be in touch with the doctor tomorrow.

Dee

[nannettesea]

Good idea, Deb.  And remember, though it's very rare, it's possible you have had a "failed labyrinthectomy"--some of the nerves in AN ear might still be working, which is a bad thing.  They might have to run you through the vestibular tests once they verify whether or not you have a CSF leak.

Nan (Dizzy Diva)

[Cheryl R]

One can have a nose running esp when one is active or gets warm .     Try sitting with the head bent way over and see if there is a true drip with a pause between each drip.           I had a CSF leak 2 weeks after my March surgery and then did have to go back in to fix it.             I never had a headache or salty taste.               I did get a salty taste after the surgery which I continue to have and my surgeon says does not surprise him.         They tried me on bedrest for a day but the leak continued before they actuall y went back in.                                 They had switched to a new cheaper colloidal implant which is what they think caused the leak and now no longer use it.                                
They can only really know if it is CSF by doing a lab test called beta transferrin and takes a few days.                                               Cheryl R.

[Gennysmom]

I just went through a CSF problem and there would be a rapid drip out your nose when you tip over forward.  After, I had another alarm but wasn't dripping much, and learned that messing with the nerve can cause your autonomic nervous system to make your nose run....but it's much less than a CSF leak.  I had a headache before the leak for a couple days that was a harsh throbbing headache after I ate. 

[Crazycat]

I'm seeing my doctor on Friday for a possible csf leak. I have a persistent salty taste in my mouth as well as around my lips. May just be nerves and taste buds. The doctor said he doesn't think I could have a leak because of the shunt I have in. No dripping from the nostrils or sinuses. Haven't had a head cold in over 2 years! Staying in shape does have its merits!

   Paul

[Sue]

I have a persistant salty taste in my mouth and around the lips and I haven't had surgery!!  Obviously, for me, it's just the nerves going crazy.  And my drippy nose?  I always have that..

[Dabs4811]

Good Morning.  This is a summary of what has happened this week in connection with the seemingly downturn of my condition.   

Tuesday morning, called local ENT physician's office.  Receptionist said Medical Tech not available.  Did I want to leave message.  I left message saying basically what I've shared here. 

Tuesday night called my surgeon's emergency call-in line.  My home phone range about 15 minutes after initial call and it was the doctor-on-call.  She asked lots of questions and talked with me for what seemed to be about 10 or 15 minutes.  Her conclusion was that what I was experiencing wasn't anything to be alarmed about but I should contact my local doctor the next day.

Wednesday was wonderful — I felt much better, got to sleep earlier Tuesday night.  But friends, calling to see how I was doing and asking what the doctor had said, reminded me to call.  Called doctor's office after lunch and Med Tech said, "I don't remember getting a call from you."  So, I told my story again.  She said she would talk with doctor as soon as he was available, though he was in surgery, and it could be the next day.

Thursday — still hadn't heard back after lunch so called office again.  Was told, "Oh, we were just talking about you and discussing what to suggest."  Their said I should contact my surgeon.  When I told her the surgeon's office had suggested I call my local ENT, she didn't know what to say.  I ended the conversation feeling very alone with my issues.

Three days to respond to what COULD be a serious issue seems a little irresponsible.  I sat at my desk and got so angry I decided to call the local doctor's office back.  I shared with the receptionist that I was very angry and wanted to express it to someone.  She asked me share with her so I did.  Told her I was very upset with the delay in hearing from their staff and, bottom line, the next time I had a problem with my hearing, I would be seeking another physician's office. 

Well, I got some action then, but it was never really apologetic, never conciliatory.  I heard from the medical tech, then the office manager.  Finally received a call from my surgeon's nurse.  She was the first person I talked with who seemed to care.  However, since my surgeon is out of the office until Monday, I won't be hearing back from him until then. 

I would appreciate some reactions from my fellow AN Survivors.

Dee

[Laura]

It appears as though you are being run in circles! My mother in law is a retired nurse of 40 years and is VERY insistent that your doctor is there for YOU when YOU need him... regardless of his other patients! It's very difficult to make the decision to change your doctors but it sounds to me like you need to investigate a new doctors office. There are nurse help lines and such that will make recommendations and I'm sure talking to family and friends for referrals will help. After being with my PCP for 13 years I did just this and have switched to a new doctor effective September 1st.

Don't settle when it comes to your health; especially when it's something this serious.

[Crazycat]

Just returned from my visit with Dr. McKenna, ENT - neurotogist at Mass Eye & Ear Infirmiry in Boston.

He said that I did not have a csf leak and that the salty / metallic taste I was experiencing was most likely due to the regeneration of the chorda tympani nerve. He looked in my deaf ear for signs of fluid build-up and pressure - looked normal - and had me bend over in a sitting position to check for any drainage from my nostril of which there was none. I haven't has so much as a headcold in over two years, nor have I had to take so much as an aspirin in over eight months, even after having contracted M.R.S.A. while in the hospital.

  Aside from that he was very impressed with my recovery and physical condition. He was amazed at my progression from less than a year ago to my present condition. Seems that all that jogging and weight training pays off! All my doctors have been very impressed.
He also said that my facial nerve appeared to be functioning near 100% and that he'd like to show me off as a demonstartion to other AN patients as an example of how well things can turn out!!

  He also suggested that I ask my PCP about a vaccination called "neumovac" that is a vaccination for meningitis (among other things), which really couldn't hurt people with our condition. Exposure of csf can lead to meningitis.

  Next visit is in six months.

 Paul

[Captain Deb]

Paul deBall--well, aren't you just the AN poster Boy and a walkin' talkin' miracle and a reglar BEACON of hope for others with Whoppin' Big Tumors  (WBT's) I just saw the post where you suspected a csf leak and about freaked!

Dabs, I suggest you find an advocate of some kind--someone you can call about anything--mine is the nurse/receptionist in my Neurologists office. Even though there are a few other people there, I always ask for her. I see other docs as well, but she has even handled my dealings with them, forwarding records, handling prescriptions. She's incredible. One of the advantages of living in a small town I guess.
I am so sorry you got the run-around with the docs--that is a terrible situation and the stress must have been awful in not knowing what was going on.
 
Sue and the salty-tasters:
Of course you know that CHOCOLATE is the cure for that one! Temp0rarily at least!

[Crazycat]

Yes Deb, things are going well right now. But I ain't out of the woods yet. None of us are, really. Next MRI is in early November.


    Paul