Radiosurgery failure and Facial Weakness

[Darlene]

Hi Everyone,

Greetings from snowy/ slushy New Jersey!!

I was out reading some studies and some threads and I have a  couple of questions.  If you have radiosurgery failure and opt for surgery is there a high possiblity of facial weakness following surgery?   I read a study that I believe said 100 % chance of facial weakness.  How exactly is facial weakness defined?   

Thanks for any help!

Darlene 

[Tisha]

Do you  mean facial weakness from surgery specifically after radiation?  Not sure about that.  I do know that I was told 85% chance of temporary facial paralysis (that I've since found out can last for years) and a 15 - 20% chance of permanent facial paralysis.  This was the statistic of surgery without any radiation beforehand. 

Tisha

[Darlene]

Tisha,

Are those statistics for all AN surgeries or are they case specific?

I was reading about people for whom radiosurgery had failed and then decided to have surgery.  The abstract I read said 100% chance of facial weakness.  I know that can't be true, A thread I read from "Crystal" stated a 90-95% chance in her instance and it turned out she had none.

 Is facial weakness the same thing as facial paralysis- for some reason weakness seems less severe than paralysis to me.

Granted I understand that rates of failure for radiosurgery are very low, so more than likely I wouldn't need to be concerned. Does anyone know if any research has been done that speculates exactly what may be the likely cause for these failures or is it just random- kinda like getting an AN in the first place. 

It is funny when I first learned about my AN, I was concerned about my hearing- then I was willing to live with out the hearing but no permanent facial paralysis and although that ranks high on my list of concerns the permanent dizziness would seem to be pretty crucial for quality of life.  This decision making thing is really tough.   

Thanks for your help. 
Darlene

[sgerrard]

Darlene,

There was a study by a Japanese group of 15 or so patients who had Gammaknife, then had surgery later after regrowth. It is hard to find a study with more cases, since regrowth doesn't happen that often. While they did report the dreaded "stickiness" in most cases, they found that about 25% had facial weakness or paralysis afterwards, not permanent, but the slow to recover kind. If you say the chance of regrowth is 4%, that works out to about a 1% chance of radiation - regrowth - surgery - facial paralysis. Not a bad risk.

I liked Kathleen's case (Kathleen5306), where she had surgery at House after regrowth, and they said it took 45 minutes longer to do the surgery, there were no problems, and they left the stickiest bits behind, realizing that they were sticky because they were radiated and dead.

As for the cause of regrowth, I can only surmise that Dr. Chang at Stanford, Dr. Medbery in Oklahoma, and other top radiation oncologists would dearly love to know what makes some of them regrow - either to identify the problem ones beforehand, improve the treatment, or prevent it happening afterwards. As far as I know, no one knows.

Steve

[Tisha]

When I read facial weakness it is facial palsy to me.  I also agree with Steve..the failures are so rare with radiation that there probably aren't many statistics at all.  It's hard enough getting our hands on overall studies.  I don't think they know why the fail.  This is a good questions to ask the doctors.

Dr. Chang told me (in order) after doing numerous surgeries and radiation the following are indiciative of the quality of life for an AN patients 1)tumor control 2) facial palsy 3) dizziness 4) hearing.     I was exactly like you.  I was horribly distraught when I thought there was a chance I'd lose my hearing.  Then I told my Mom I would rather be deaf than have facial palsy.  Then decided Dr. Chang was right because what good is all of that if you can't even get up!  Anyway, if you are a candidate for CK, the stats are 98-99% tumor control, 99% no facial palsy, dizziness:  2/3 stay the same as they are now, 1/3 get better, 5% get worse, hearing preservation is 80%.  The 20% that don't retain level 1 or 2 hearing, lose on average 12 db.  Only a few lose it completely.  I thought that you lost it completely, and was so relieved to find out you didn't.   These all were good odds to me.

Good luck with your decision.

Tisha

[Darlene]

Thanks those are really good statistics!   Because you only have a 1/100,000 chance of getting AN in the first place any and all percentages seem so much more likely to possibly happen.  I know I have to try and keep things in perspective, lightning doesn't usually strike twice in the same place.    Thanks for the information.   

Take care,
Darlene