Lost ear.

[foreign boy]

On wednesday evening lost all hearing on right ear suddenly. Called emergency medical service who tolds me to phone my hepatologist at hospital in the morning. Got him a 11:30. At 12:00 he was sending an ambulance so that i could be seen in emergency in neurosurgery. They found 95% lost of hearing at right ear (I do not hear 103 db at any frequency !) and a big suspect mass in the brain. They wanted immediate hospitalisation and huge perfusion of corticoid and vasodilatator and stop interferon during 10 days. I declined (they were litterally more than angry) and went back to see my hepatologist. We agreed to reduce Pegasys from 180 to 135 during 2 weeks and to take normal dosage of corticoids and vasodilatator per os during 10 days. He suggested that he will ask for nuclear imagery in one week, and told me he would, if he was me, refuse brain surgery.He suggested to stop any agressive treatment and to refuse any ressucitation. He proposes to continue with the Pegasys and Copegus treatment which relieves pain from my fibromyalgia and cryoglobuninemia, and made up the dose of morphine to 120 mg/day. In his opinion chances are 90% that i get back hearing within seven days. What d'you think ? Which decision should you take ? BTW he is anxious because he thinks that surgery could get me blind. Thanks. By the Way the good news is that my 12 weeks PCR came back UNDETECTABLE !

[foreign boy]

Well the "thing" seems too big to be clearly guessed at. When cortisone will have reduce the "thing" a new nuclear imagery should be helpful to determined what it is, and if it needs to be removed, what are the risk.

I've clearly choosed the option "no emergency room, no surgery". It's not that easy to have your decision respected (ahem, sorry I live in France :-)) if you get unconscious, and that get me anxious.

Yes I've seen the hospital psychiatrist many times. She does not think I am depressed at all, but realistic. She understand that, this time, I believe "too much is too much" and that, if things turn bad, the doc have to accept not to cure and concentrate on relieving pain at any cost (even if it shortens life).

I see her again on Monday and the hepatologist on Wednesday.

I thought hepatitis was a liver disease. Funny to see all the virus can do (very rarely hopefully) and kill you.

BTW PCR neg as you now, and liver back from F4-A3 two years ago to F2-A1+ now !

A new illness: braintitis ? Lol.

I am happy on this forum because you can discuss of end of life with no problem. In France it is imposssible to speak of your eventual death, even with most of doctor. A study shows that in France 85% of doc refuse to talk of his end with the patient. This is, in my opinion, a shame. If there is a time when doc is here to help, it's at the end stage when the patient is conscious.

[audreywald]

But what is in your brain? Isn't that more immediately dangerous to your life than hep C?

[Amerabrit]

Good luck with your tx choices & outcome, you are very brave.  I will be watching for good news from you in the future.
Stay strong.

Good Luck to you, too Cindee..

[foreign boy]

Well, I've had so many tough problems with HCV that I only trust my hepatologist who is also a human being ! He is a worldwide known doc (poynard hepatitis in google ...). I've no pain problem, they have no problem to prescribe necessary dose of morphine, and knowing that is such a great relief psychologically that i reduce the dose in real life ! I do not mind to loose hearing. But the idea to have something in the brain is terrifying. They think that cortisone will make the virus back. We had decided to go on for a 72 weeks treatment in the first place, well this is going to be a two years treatment ....

[cindee]

I think Scott is right on the $. I'd listen to my liver doctor first and foremost. I have a question for you.....I think I will be starting my second round of combo in June. I did 48 wks of combo and at 4 months post tx blood work I found out I replased. Anyway my question is, I am also on morphine 30 mg 2X a day and a break-though pill, diludid 1X a day. When I start tx again do you think I will be able to go off the morphine? Or will I continue to take the morphine as well. I am going to a new doctor, who is a hepatologist. I haven't seen him yet and was afraid he would freak about the morphine my pain specialist is giving me. TY in advance for any info you can give me. And congrats on the 12 wk blood work!!!!!!!!! Please, keep us informed on your hearing. Sincerely, Cindee

[twotells]

I don't know a thing about a brain mass- it must be frightening.  But since you mentioned cryoglobulinemia, which caused me alot of trouble, I thought I'd mention that I got a Lymphoma drug for that called Rituxan (or Rituximab).  My understanding is that it is proving to be valuable in the treatment of cryoglobulinemia- it worked well in my case, knocking my cryocrit down from >7 to ~3.  My cryocrit then went down to a trace, where it has been for a year.

You have my prayers, God Bless,  Dave

[cuteus]

my brain and hands are both slower lately, but I guess my brain is still faster.  it should read they don't see the relation between the meds and the eyes.      and we HAVE good news....


I hope your pain is greatly relieved by the increase.

[cuteus]

why did they want you to stop inteferon? are they suspect of it causing the brain mass? i know it can cause hearing loss. 10 days without interferon if you just had your shot, it is one missed dose only, they said ok to the riba? That is a tough decission, if they thought the med caused the mass, I would stop it. if they want to stop it so that the other meds work better, that's another story. I can't remember the details of your liver condition, but if your hepatologist suggested to continue tx, I would give more weigh to his statement, though I don't think they can be experts on other bodily reactions from the meds, gee, they see a relation between the meds and my swollen, red eyes.

congrats on 12 wk PCR....what do they say: " we good news and.....and bad news"  ,,,lol
You be well and keep us posted

[honey1616]

Man Oh Man Oh Man.....You are one tough person!  Me?  Brain Mass?   I would be screaming stop the "Interferon".  I am cautious and would want to know exactly what was what before proceeding with anything but the emergency at hand. Good Luck with your decision..