CFS leak question

[wcrimi]

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?

[Cheryl R]

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

[bpham]

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.

[wcrimi]

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. 

[Cheryl R]

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

[bpham]

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.

[Cheryl R]

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

[bpham]

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.