Author Topic: Tumor size from CD  (Read 6379 times)

Rivergirl

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Re: Tumor size from CD
« Reply #15 on: August 07, 2008, 07:40:48 pm »
Thanks Tumbleweed, there isn't a day I don't learn something new about these darn things.   

I have another question: Why are so many here choosing CK? my understanding is it is not 100% and may damage more of the hearing and if you have regrowth it is alot harder to re-treat. 

And what is the benefit of having a CAT scan? My Dr. is also looking at ruling out a condition called something, something dehiscence, as anyone else been worked up for this?

I am glad so many of you have honorary medical degrees.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

sgerrard

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Re: Tumor size from CD
« Reply #16 on: August 07, 2008, 10:35:33 pm »
Hi Rivergirl,

Surgery and radiation both fail occasionally, and both fail at about the same rate, around 1-2%. Fairly recently, for instance, Carrie (CMP) had a regrowth after surgery, and Kathleen had a regrowth after radiation. Stanford has had about 1 failure in every 100 cases treated with CK.

Radiation is gentler to nerves than surgery. For hearing preservation, it is somewhat better, depending on which surgery you compare it to; for facial nerve, it is distinctly better, with very few cases of facial nerve issues after treatment. It has the best chance at preserving hearing for smaller tumors, as well as avoiding facial nerve issues.

The "what if it regrows and is harder to treat" argument has been discussed numerous times on the forum. First of all, the chance of it happening is small. Second, "harder to treat" doesn't mean much, unless it means facial nerve damage or some other side effect. Kathleen just sailed through surgery, apparently with facial nerve function in great shape. One study put it at about a 25% chance of damage. Multiply that by a 2% chance of regrowth in the first place, and you are talking about a 0.5% chance of a facial nerve issue - not enough to worry about.

Which is why I think so many here are choosing CK. :)

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.

Tumbleweed

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Re: Tumor size from CD
« Reply #17 on: August 07, 2008, 10:52:10 pm »
I agree with Steve, but will add that, IMO, the chance of hearing preservation is greatest with treating large tumors with radiosurgery, too. That's because a large tumor virtually always requires either a translabyrinthine or retrosigmoid surgical approach. Translab destroys all hearing structures on the affected side, leaving the patient deaf. Retrosigmoid surgery for a large tumor almost always results in complete loss of hearing (although there are exceptions).

Here is an excerpt of a post I wrote a few months ago, before receiving CK. It goes into more detail comparing surgery with radiosurgery (both GK and CK):

With surgerical resection (cutting the tumor out), you run a much higher risk of damage to facial nerve function compared with radiosurgery's results in that regard. For example, with my size tumor, I stand about a 31% chance of permanent ipsilateral facial paralysis with surgery, but only 1% chance of same with GammaKnife or CyberKnife treatment. Resection also poses other risks: roughly 10-15% chance of chronic headaches (thought to be due to bone dust being left behind inside the cranium after the operation), a slight chance of cerebrospinal fluid (CSF) leakage, and (very rarely) cognitive or behavioral changes (memory loss and personality changes). And in many cases, surgery involves cutting the vestibular (balance) nerve, whereas radiation treatment preserves the anatomical continuity (but not always full function) of the vestibular nerve. So I personally think you're on the right track with choosing some type of radiosurgery (one-time radiation treatment) or radiotherapy (fractionated radiation treatment, or that which is split up into multiple smaller doses). That said, radiosurgery/radiotherapy only (hopefully) kills the tumor and does not remove it (like resection would). The recurrence rate for surgery and radiation are about the same (cited to be roughly 2 to 3% in most studies).

As for radiosurgery, GammaKnife (GK) and CyberKnife (CK) are both more accurate than standard FSR (fractionated stereotactic radiation) such as Novalis. CK is also a form of fractionated radiotherapy, but its accuracy gives it a leg up on standard FSR.

CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue August 8,2008 P.S.: and especially to the vestibular nerve, which runs down the center of the internal auditory canal and therefore receives a full hit of radiation if the tumor fills the entire IAC. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK. Furthermore, GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)

Best,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Omaschwannoma

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Re: Tumor size from CD
« Reply #18 on: August 08, 2008, 09:16:11 am »
Thanks Tumbleweed, there isn't a day I don't learn something new about these darn things.   

I have another question: Why are so many here choosing CK? my understanding is it is not 100% and may damage more of the hearing and if you have regrowth it is alot harder to re-treat. 

And what is the benefit of having a CAT scan? My Dr. is also looking at ruling out a condition called something, something dehiscence, as anyone else been worked up for this?

I am glad so many of you have honorary medical degrees.

It was suspected I had a temporal dehiscence when I complained to my doctor of oscillopsia, but this was ruled out as the MRI showed inflammation and hemorrhage in the inner ear.  After 2nd surgery transcanal labyrinthectomy my surgeon noted "significant facial nerve prolapse/dehiscence." 

What do your doctors feel is dehiscent? 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Rivergirl

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Re: Tumor size from CD
« Reply #19 on: August 08, 2008, 03:43:17 pm »
Tumbleweed, that was a great narrative, thanks.

Arushi, I do believe it was sub cranial dehiscence because when I cough or sneeze I want to lay on the floor where it is safe. I think it could be the tumor is a tube shape and fills the canal, perhaps it has itself pretty close to alot of the vestibular nerve.  I ok with ruling it out though, he tells me it is fairly new diagnosis and rare (oh, I feel so special).  What is oscillopsia? and was the hemorrhage caused by the AN?
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Tumbleweed

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Re: Tumor size from CD
« Reply #20 on: August 08, 2008, 10:00:11 pm »
Tumbleweed, that was a great narrative, thanks.

What is oscillopsia?

Oscillopsia is a sensation that everything in your field of vision bounces up and down, most noticeable when you walk. Before I knew it had a medical name, I used to call it "shaky-camera syndrome," because everything bounced around like the view you get when you walk briskly or run with a camera and you're looking through the lens at the image. In my case, it was caused by severe damage to the vestibular nerve by the AN. It lasted 2 or 3 months, perhaps longer, and eventually went away as my balance systems compensated for my loss of vestibular function.

Dehiscence is the splitting open of a structure along definite structural lines (like a pea pod, for example, splits open when it ripens). If I remember correctly, dehiscence can be intracanicular, or pertaining to the internal auditory canal. I'm not sure what causes it, but obviously it can cause problems for the cranial nerves (facial, vestibular and hearing nerves) that run axially along the inside of the canal.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Omaschwannoma

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Re: Tumor size from CD
« Reply #21 on: August 14, 2008, 11:48:02 am »
Rivergirl,

Never did find out what caused the hemhorrage, don't think the doc knows this either.  My tumor had been removed three years prior, so not sure why these problems occured only to repeat what doc thinks might be autoimmune response?  Who knows! 

Tumbleweed,

Great explanations on oscillopsia and the dehiscence can also be present in the temporal bone too.  I think some say it's caused by trauma to the head.  Again, who knows for sure! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear