Author Topic: severity of facial paralysis.  (Read 3815 times)

claireb

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severity of facial paralysis.
« on: June 12, 2007, 03:02:11 am »
does facial paralysis happen to everyone who had a large AN?  if the patient is already experiencing half facial numbness, half tongue numbness, difficulty in swallowing and a feeling of heaviness on the eye ( the AN side), will these remain there after the operation? this plus the balance issue is my mum's biggest concern. she is a very shy person and we are scared that if her face will be paralyised after op she will fall into a depression and will not want to see anyone or go out anymore. 
Claire 

Kathleen_Mc

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Re: severity of facial paralysis.
« Reply #1 on: June 13, 2007, 07:19:17 am »
I don't think it's the size of tumor that determine's facial issue's rather the nerves involved and the skill of the surgeon. Balance is almost always a problem post op particularly if it's a problem pre-op. Swallowing was not a problem of mine but I did end up with the facial issue's, over time aceptance and thankfulness that at least it's not as bad as it could be helps.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

krbonner

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Re: severity of facial paralysis.
« Reply #2 on: June 13, 2007, 08:41:06 am »
Size of tumor is really not a good indication of the chances of developing facial paralysis.  I've personally met one person (CrazyCat) who had an extremely large, life-threatening AN but he doesn't have paralysis (I believe he does have some numbness, but nothing that's obvious to an observer).  I know of others who had very small ANs removed (3-5mm) and now have facial paralysis.  There's just no guarantees.

If I remember, you aren't able to travel to London with your mom for her surgery.  When she goes and meets with the surgeon, make sure she (or others who are with her) stresses the importance of facial nerve preservation to her.  When I talked to my surgeon, I stated (emphatically) that I would rather he leave a bit of tumor behind (which can then be radiated if needed) than compromise my facial nerve.  Fortunately, my AN was positioned in a way that made it possible to remove the whole thing without any damage to the facial nerve.  Of course, even if the nerve is monitored during surgery and survives intact, that can't guarantee a particular outcome (as many here will attest to). 

Before my surgery, the hardest part for me was not knowing what the outcome would be (facial nerve, balance, vertigo, headaches, etc.).  It's brutal not knowing.  I'm glad your mother has such a caring, supportive family that will help her through this regardless of the outcome.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Raydean

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Re: severity of facial paralysis.
« Reply #3 on: June 18, 2007, 03:15:53 pm »
I think both the size of the tumor, position of the tumor and the experience of the treating medical team all plays a part in the possibility of facial paralysis.  Large/giant tumors have over time, in some cases stretched the nerve beyond it's ability to come back.  The nerve may very well be intact, but so scarred and stretched it just doesnt recover.  Some of the larger tumors have been hosted for 25+ years.  That's a long time to be applying pressure. I am not a doctor, but some of the symptoms you mention currently being experienced  indicate that there is nerve involvement at this time   Statistically, large/giant tumors tend to have more outcomes.
But it does not mean facial paralysis is a sure thing. 

I think the most critical factor is the experience of the medical team. You want a medical team that has vast experience in the treatment of AN's.  It's important to ask how many they havtreated over the years, and if the tumor is large how many within your size range and what were the outcomes. As other's has mentioned it's importent that you communicate before treatment what your priorities are. That's it's ok to leave a small portion of tumor in, if it increases your facial preservation odds.  For  some surgeons their priority maybe total tumor removal.

You could consider having a EMG (hope I remember the right combo of intials) This test measures
nerve response or the lack of response.  This would give you an idea where you stand.  This test is done monthsfollowing treatment and is a useful tool in deciding options.

Know that you and your Mom will be in our thoughts and prayers.  Your love for your Mom shine thru your posts.  Your support, love and acceptence will help immensely.

Hugs
raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.