Author Topic: novalis???  (Read 4966 times)

neuroma_racer

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novalis???
« on: December 30, 2009, 10:10:14 pm »
how does novalis compare to GK or CK?
thx
jesse
mild hearing loss - 12/'09
left 4x5x7mm, intracannicular schwanomma
MIDDLE FOSSA surgery 4/'10, Dr John McElveen, et.al.
was actually a FACIAL NERVE NEUROMA
hearing worsened 4/'12 - Tumor quadrupled to 9x9x15mm
cyberknife 8/'12
1.5yr MRI shows shrinkage % 85% necrosis
LEFT hearing & tinnitus SUCK

leapyrtwins

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Re: novalis???
« Reply #1 on: December 30, 2009, 10:23:10 pm »
Jesse -

put "novalis" in the search box under your user info and you'll find lots of posts about Novalis.

Kate (user name KJ) just completed Novalis treatment recently http://anausa.org/forum/index.php?topic=11408.0

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

KJ

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Re: novalis???
« Reply #2 on: January 03, 2010, 06:10:24 pm »
Hi Jesse,
I a newbie, so I don't know much about GK and CK. Others who have gone that route may be able to shed more light.  I had Novalis Fractured Steriotactic Radiation (FSR) treatments over a twenty six week span.  My AN was small; only 1 cm and I wanted to preserve as much hearing in my affected ear as possible. This was the treatment that was recommended to me. I think, but I am not sure, that GK and CK run a greater risk of destroying hearing, assuming you still have some.  Read my weekly updates if you want to know what FSR was like.  I have been out of treatment for a week and a half now and I am feeling fine.  I do have occasional balance issues and my hearing is not as good as I had hoped it would be, but the doctor tells me to be patient and wait.  It takes a while for the swelling to go down, then we will know what we are dealing with.  I wish you well on your journey.
KJ
58yr, married, no children.  Recently diagnosed with 10mm AN on left side.  70% hearing loss, tinnitus, some balance problems.  Previous mastoid eardrum replacements in both ears resulting in 60% loss on right side.  Currently considering treatment options.

james e

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Re: novalis???
« Reply #3 on: January 19, 2010, 04:02:36 pm »
I have an appointment Jan 20 with my ent. They have a new Novalis tx being installed as I type. It will be up and running March 15. This site has provided me with lots of questions that I need to ask and they need to answer about the Novalis. Is it normal for there to be multiple treatments rather than just one?

ppearl214

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Re: novalis???
« Reply #4 on: January 19, 2010, 04:17:52 pm »
Is it normal for there to be multiple treatments rather than just one?

for small to medium size AN's (typically up to approx 3cm)... the answer is yes.

Will try to help the discussion here.

In doing radio research (regardless of which radiation protocol is being researched ie: Novalis, CK, GK, Proton, Trilogy, etc), there are keys that you want to review in your research.  (As Jan noted, suggestion is to go to the ANA Discussion forum home page... top left, use the "Search" option and type in what you seek... LOTS of discussions here in the past years regarding all of these treatments).

In pitting one form to another, you want to research "total accuracy" of each treatment. Novalis publically touts that they have a 2mm total accuracy.  CK notes total accuracy of approx 0.85-0.87mm.... approx same for GK as CK.....so, all in all, in doing your homework, keep "total accuracy" in mind.  (for me, as part of my decision-making process... total accuracy was key.. if they were going to zap my head, I wanted to make sure the beam hit the target.... but, not to say that Novalis hasn't helped others as well... it most certainly has).

then, you have to look at the AN situation... where is it located? In the IAC?  Touching/pressing on the brainstem? current symptoms and potential after affects post-radiation?  what is the hearing level at time of radiation and is hearing preservation a key priority to the treatment choice?

these are just a few off-the-cuff notations but the overall picture will have more to contribute to your decision process.

Many here have had many of these radiations... some successful, some not.  All of us are more than happy to help answer questions or share our experiences if need be.

Just remember, we are all in this boat together... the oars/paddles are plentiful and we're here to help.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

james e

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Re: novalis???
« Reply #5 on: January 20, 2010, 04:46:30 pm »
I would like to know your source for this accuracy information. What I can find is that the beam shaper is 2.5mm and the precision is .5mm isocentric precision. I have an appointment with the radio doc on Friday and I'll find out some more. You have me a little scared because I am planning on using the Novalis tx.

ppearl214

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Re: novalis???
« Reply #6 on: January 20, 2010, 04:55:11 pm »
I would like to know your source for this accuracy information. What I can find is that the beam shaper is 2.5mm and the precision is .5mm isocentric precision. I have an appointment with the radio doc on Friday and I'll find out some more. You have me a little scared because I am planning on using the Novalis tx.

James,

First, please accept apologies as the intent was not to scare or make your nervous.  Novalis is a good machine to use in the treatment of AN's and as I noted previously, there are those here that have  been treated sucessfully.

As you note, the Novalis website (http://www.varian.com/us/oncology/radiosurgery/novalis_tx.html) is noting the 2.5mm... yet, the smaller the mm, the better "total accuracy" (hence, my comments regarding Gammaknife and Cyberknife.).

Please by all means meet with the team and let me/us know what they say...... again, my apologies.  I also recommend doing a "Novalis" "search" here on the forums for add'l info.

PHyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

james e

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Re: novalis???
« Reply #7 on: January 20, 2010, 06:15:00 pm »
What is the beam shaper? Is that the accuracy or is that the size of the mechanical thig-a-ma-bob that really produces the beam? I would think that the 0.5mm is the accuracy.

ppearl214

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Re: novalis???
« Reply #8 on: January 21, 2010, 07:01:09 am »
Hey James

I went to the forums home page (where all the subforums are listed) and did a "search" option for "radiation accuracy".  I found multiple pages of responses and multiple discussions/threads discussing all forms of radiation (ie: FSR, CK, GK, Trilogy, etc) "accuracy". I looked at a few that discussed the "thing-a-ma-bobs" :) and too many threads to quote.  You may want to try to do the same "search" option that I note here to see the discussions to help with your info research.

I did find this thread, amongst many, that may be of interest....

http://anausa.org/forum/index.php?topic=3704.0

Please look for Mark's response in this thread (scroll down). Mark is kinda our in-house radiation guru as he is well versed on radiation technical protocols (I'm definately not a technical kinda person) and makes many references in many of the "search" threads regarding total accuracy in radiation protocols.


try the search option. I am a firm believer of being "well armed" with info/questions in going to meet any medical teams (regardless of ailments) and that way, you can weigh out info from your research in comparison to what the drs tell you/us.

Just my 2 cents... no big deal.  Hope this helps.

Phyl
« Last Edit: January 21, 2010, 07:03:26 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

james e

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Re: novalis???
« Reply #9 on: January 22, 2010, 09:52:15 pm »
I read the Novalis site and it clearly states that the accuracy is under 1 millimeter. I spoke with the oncologist today and he agrees that it is also better than 1 millimeter. He also said that the most important problem is combining the CT and MRI into an image and keeping the fidelity from there into the Novalis or any other device. He said that as still as the patient is during the CT or MRI, they move, and this will cause some difference between what is really in your head, and what really gets recorded on the CD. Even if you DID NOT move, just your heart beat will make a difference. He said the variations between the different "pages" of the images will vary. This is one of the reasons that so many people are involved in making the final selection of what gets zapped and what does not. The Novalis or the GK accuracy is not the source of the largest problem here. They  pretty well hit what they shoot at, not just some 2.5mm shotgun blast. Just deciding what to shoot at...the MRI and the CT may not perfectly match up, is a larger source of the problem.