Author Topic: What if it grew....  (Read 2530 times)

Pascale

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What if it grew....
« on: December 22, 2008, 03:40:56 pm »
I will be going to my 6 months post CK in MArch but I'm a bit worried..... I think everyone will know what I'm talking about when I refer to "put one feet in front of the other and walk with you eyes closed" -> test they make you do for balance <-  Anways, when I was asked to do that, I was fine, no balance pob....NOW I can barely walk!!!!  ??? I mean, I put one foot in front of the other then loose my balance and try again and one more time I loose my balance... :-\

Maybe it means the tumor grew and is reaching for the balance nerve????? ouchy...  :o

thanks for any input
2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

Jim Scott

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Re: What if it grew....
« Reply #1 on: December 22, 2008, 04:59:43 pm »
Pascale:

I can't offer a credible medical opinion because I'm not a doctor but it would seem as if you're having some problems adjusting to the loss of the vestibular nerve on the affected side.  I seriously doubt that your AN could re-grow so quickly after surgery as to re-involve the 8th cranial nerve.  An MRI will confirm that.  You may want to consider therapy for overcoming your apparent disequilibrium.  For what it's worth, it took me close to two years to be able to adequately perform the heel-and-toe walk with my eyes closed, so don't despair.  I think you'll be fine, in time.  :)

Jim  
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mark

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Re: What if it grew....
« Reply #2 on: December 22, 2008, 06:16:01 pm »
Pascale,

Since you had CK, you have not lost the balance nerve, but at only 6 months post treatment it is highly likely that you are experiencing some pressure related to temporary swelling of  the tumor as it reacts to the radiation or some cranial nerve irritation. The vestibular nerve is not typically in the "field of fire" for AN radiosurgery treatment, so I suspect that the inflammation or swelling is impacting the hearing nerve which is directly tied to the balance nerve. Like Jim, I have no medical credentials but that would be my best guess and it is certainly something that should be transitory in nature. Definitely it should be part of the discussion with the doctor during your MRI visit. He / she may feel a short course of steroids may me called for to address the issue. It is non uncommon for radiosurgery patients to experience some reactions over the first 18 months and more likely in the first 6 months, some more than others.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

mk

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Re: What if it grew....
« Reply #3 on: December 22, 2008, 08:02:52 pm »
Actually most ANs grow on the vestibular branch (aka balance nerve), of the vestibulocochlear (I don't even know if I spelled this correctly) nerve. Basically nerve VIII has two branches, the vestibular (balance) and the cochlear (or hearing). That's why AN is a misnomer and the accurate terminology is "vestibular schwannoma". So, by definition, your AN grows on the balance nerve, and has already caused damage. Over time our body may learn to compensate, that's why some of us don't have balance symptoms. But since radiation does not destroy  the nerve entirely, it is normal for radiosurgery patients to experience symptoms post-treatment.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Mark

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Re: What if it grew....
« Reply #4 on: December 22, 2008, 08:54:47 pm »
Actually most ANs grow on the vestibular branch (aka balance nerve), of the vestibulocochlear (I don't even know if I spelled this correctly) nerve. Basically nerve VIII has two branches, the vestibular (balance) and the cochlear (or hearing). That's why AN is a misnomer and the accurate terminology is "vestibular schwannoma". So, by definition, your AN grows on the balance nerve, and has already caused damage. Over time our body may learn to compensate, that's why some of us don't have balance symptoms. But since radiation does not destroy  the nerve entirely, it is normal for radiosurgery patients to experience symptoms post-treatment.

Marianna

Thanks Marianna, your explanation is much more accurate than the one I offered. I would still maintain that while the AN typically originates on the vestibular extension, the bulk of it extends through the IC into the cerebellopontine angle. Either way, the impact on the nerve of temporary swelling or direct irritation anywhere on the VIII nerve would potentially effect the balance

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Pascale

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Re: What if it grew....
« Reply #5 on: December 22, 2008, 10:32:07 pm »
hey all

thanks for the coments/explanation. It makes sensce. I just got so freaked because it's been only 3 months since CK...but I guess every case ia a case. I hope I do see necrosis when I go do my MRI  ;D

2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

sgerrard

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Re: What if it grew....
« Reply #6 on: December 22, 2008, 11:14:14 pm »
That's why AN is a misnomer and the accurate terminology is "vestibular schwannoma".

This seems as good a time as any to quibble about this.  :)

The VIII nerve is the vestibulocochlear nerve, and can quite correctly be called the acoustic nerve (or auditory nerve). It splits into two branches, the vestibular branch for balance, and the cochlear branch for hearing.

The term neuroma is a general term for a nerve tumor; a schwannoma is a specific kind of neuroma, arising from the schwann cells that encase some cranial nerves, including the VIII nerve.

Both vestibular schwannomas and cochlear schwannomas have been reported, although the vestibular schwannoma is more common. Both kinds can rightly be called acoustic schwannomas, as they are schwann cell tumors of the acoustic nerve. And both can rightly be called acoustic neuromas, as they are both tumors of the acoustic nerve.

While it is appropriate for a radiologist reading an MRI to identify the tumor type and origin as specifically as possible, it is perfectly acceptable to use the less specific term as well. They are in fact acoustic neuromas.

Ok, I'll stop now. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.