Steroid question

[Tisha]

I called the NP on Monday because since my last CK treatment, the fullness came back hard and I feel sort of a vibration/thrumming sensation, and hearing is muffled/down.   I asked to be put on a steroid and told her that when I was on low-dose decadron for 12 days it did the trick in 12 HOURS!  Of course after I was off of it, the distortion came back until I had acupuncture a month ago.

Anyway, when I went to get my prescription, she prescribed medrol (prednisone) and it's not doing a good job.  I've been on it for almost 48 hours. The thrumming is almost gone, but the fullness and far-away hearing are still there.  I hear fine on the phone, though.  Listening to the radio is out, it sounds fuzzy.  I read on the internet that decadron is 4-5 times stronger than prednisone, so that's probably why she put me on it.

Do you think I should call tomorrow and let me know it's not doing very much, or should I finish the pack (6 days).  Also, if it doesn't help, is it safe to go on decadron right after?  I have an acupuncture treatment 1/31, but since I'm just out of CK treatment, I thought it best to do something that would chemically treat it.   Just at a loss as to what to do.  Any thoughts?

thanks

Tisha    Other than that, I'm doing well.

[ppearl214]

Hi Tisha,

Ok, here goes!

Medrol Dosepak (you got the 5 day pack, right?  Start at 6/day, then down in count to the last day, right?) is a VERY strong dosage of Prednisone. Now, Prednisone is different than Decadron (a different type of steroid). I happened to have been on both of them last month (December), so my experience with both is recent.

As you are still SO SO soon post treatment, you have learned that some of these things will crop up. I know you are staying on top of everything as well.  Muffled hearing can occur (did for me....) post radio-treatment, etc.  You may be running into some of the 'bumps' that sgerrard (Mod Steve) noted in your other thread about completing CK.

Be careful with the steroids. I know you just went off of them after your CK, but that was less than a month ago. Please make sure Chang's office is monitoring you closely, esp on the steroids.  finish the pack as you cannot stop on a dime when taking steroids (must be weaned, much like Decadron). Steroids need a few days to take full effect... it's not an overnight cure. I am on steroids for another issue right now (given to me this past Tuesday.. .and told by the docs that it takes a few days to take effect).

My thoughts... finish the Medrol Dosepak, keep Chang's office up to date with how you feel (that is one reason for the radio onc nurse.... she's your point of contact)...... and give it a little time.... hang in there, ok?

You can do it!
Phyl

[mk]

Tisha,

Prednisone may take a few days to work (at least it did in my case), so give it some more time. I hope your problems will resolve soon.

Take care,
Marianna

[Tisha]

HI Phyl,

Thanks for all the info.   Yes, I'm on the medrol 6 day pack.  From what you've said, and talking to another recent CK'er from December (who had no hearing issues going in), having muffled hearing is not abnormal right after CK.   She even said the docs told her NOT to take steroids right after, but they didn't tell me that.  So, since this seems to be a normal occurence, I probably shouldn't have started them...but now I have to see it thru.

I think I'll finish this up, then just go to the acupuncturist to see what happens with that.  I'm just pins and needles a bit, but hearing that the muffled sound is normal puts my mind at ease a bit.  Thanks for the pep-talk.

tisha

[sher]

Tisha,
I too have had this muffled sound off and on. I am alittle over 3 months post CK and I have enhanced tinnitus and balance issues which is normal with swelling which the MRI confirmed. Hang in there. My husband, said (thinking he was funny)... "Look at it as a pregnancy, you are awaiting a result." I laughed at first.. but we don't have control over the situation and just have to be patient.
(Which by the way is not one of my strong suits" Keep in touch and let me know how you are doing... it is nice to have someone else going through this.
Sher

[Tumbleweed]

Hi, Tisha:

The diminished hearing might reverse in time. I have lost 15 dB of hearing at one midrange frequency since having CK, but Dr. Chang told me I might recover that amount of hearing over time if the loss is due to inflammatory compounds -- from tumor swelling -- irritating my hearing nerve. That is, once the swelling goes down, I might get the 15 dB back. If the steroids don't do the trick for you, you too might recover in time anyway.

BTW, Dr. Chang told me 15 dB of additional loss post-CK wasn't considered abnormal. For that reason, he recommended against steroids in my case, saying he usually only prescribes them for more severe hearing loss. Because steroids use carries some risk, doctors are careful not to prescribe them unless they feel it is absolutely necessary. Therefore, you might not want to push them to give you Decadron immediately after you finish your Medrol pack (and they might not agree to prescribe it, anyway).

In the meantime, you might try taking the following supplements which are suspected to be potentially helpful in regaining hearing and/or reducing tinnitus:

Vitamin E (up to 1200 IU daily of the natural tocopherols; synthetic forms are only 2/3 as potent).
Niacin (increases blood flow to the hearing nerve).
Manganese (helpful in reducing tinnitus).

I also take curcumin (which is an extract of turmeric), a powerful natural anti-inflammatory and anti-oxidant that may (emphasis on may) help keep tumor swelling down.

I hope that helps. Hang in there, Tisha.

Warm regards,
Tumbleweed