Suffered hearing loss after WBR? UPDATED

[Guest kathleen]

Am I crazy or is hearing loss common in people who have undergone WBR? Please respond. My Mom finished WBR on June 7. Since that time her hearing has declined significantly. I'm sure I have read about this.

The radiology nurse I spoke with insists this is NOT a side effect of WBR...............She acted like I was off my rocker. In her 15 years she has NEVER heard of this.............

Has anyone or someone they loved experienced this?

Thanks!

Kate

[MsC1210]

Hello Kate

Further down in this forum, Debbiethewife has a post about chemo and hearing loss. You might read that and perhaps contact her. Not sure if that is of any help.

Wishing you all the best and sending prayers and positive thoughts for you and your Mom,

Chris

[mamasbabygirl]

You are not nuts. My mom also suffered hearing loss after WBR. She had to get hearing aides, but didnt wear them very long bc they whistled all the time. Her hearing is pretty much back now.

[Don Wood]

My wife, Lucie, did not have WBR, but she had her skull radiated on the right side and she lost some hearing in that ear. Don

[Connie B]

No Kate your not nuts! I will add this, that chemo also adds to hearing loss. But, it's better then the alternative!

[Carleen]

I can't believe that nurse saying she never heard of it! Keith had WBR and was told that hearing problems could develop. He did have hearing problems due to Cisplatin but really not too much with the WBR. He did ask me to repeat myself a lot following the WBR, but who knows, he never complained of it. I've heard of other people with radiation having the problem, some temporary due to swelling that goes down in time, one permanent due to burning/scarring on the delicate inner ear stuff from the radiation.

I'd talk to her onc about it, not the nurse. Maybe the she hasn't gotten out enough.

[hopefuldoctor]

My father is currently undergoing WBR. Hearing loss, as well as visual changes are common side effects of the radiation. You may want to visit the Memorial Sloan website or search some journals on pubmed. They offered the most information on this.

Hope this helps!

[dchurchi]

Kathleen,

you are not nuts. My husband had WBR and now the hearing in his left ear is almost

completely gone. Alan also has issues with short term

memory and has trouble recalling words, but his tumor

is completly gone so we are willing to deal with what

we consider minor set backs.

Prayers for you and your mom.

[Guest kathleen]

It is so frustrating. The nurse that told me that hearing loss was not a side effect called back. The radiology oncologist doesn't think the hearing loss is caused by the radiation. It could be one of two things:

1) there is tumor activity again

2) there is a fluid build up

They will not do anything for the tumor, once radiation is done they cannot do it again.

There is a steroid she can take for 7 days. I am tired of her taking medicine after medicine! She has been thru so much. During radiation she was on decadron. I told the nurse how she was on decadron. This same nurse tells me that the decadron didn't affect mom at all it was the tumor reacting to radiation! I beg to differ! Once the decadron was tapered off she was much better!!!!!

The new steroid she would take for 7 days is called MEDROL (sp?) Anyone familiar with this? They said it could help with the fluid build up..........

Hearing aid will not help.

Please let me know your thoughts and experience.

Gosh - what would we all do without this message board and all the wonderful people on it? I hate doctors and nurses!!!!!

This nurse told me that the hearing loss was probably from the CISPLAT Mom took. MOM DIDN'T TAKE CISPLAT ---------------SHE WAS ON TAXOTERE!!! the nurse said she was sure she saw it on her chart - I said look again.

It makes me want to scream! We are in Madison Wisconsin - where health care is supposed to be top notch!

Thanks for letting me ask questions and vent all at once

xoxo

[Linda661]

Kathleen:

I can't really offer anything on the new steroid mentioned or WBR, but I can sure relate to what you're going through with the medical community! Research and advocacy to find out the truth about what our loved ones are going through and what they are enduring for treatment is so, so important for just the reasons you are going through now.

Your observations of how meds/treatments are working or not working and changes in your mom ARE THE MOST RELIABLE SOURCE OF INFORMATION (other than mom herself). You are not off your rocker and your efforts to get to the bottom of issues help make a real quality of life difference to your mom.

Linda