Author Topic: Newly diagnosed  (Read 11107 times)

mk

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Re: Newly diagnosed
« Reply #15 on: January 30, 2010, 02:26:11 pm »
Hi,

I was preparing an answer for this thread and I just realized that you have done your search already.

So yes, I want to reiterate that I have checked and double checked what is the relevant measurement for radiation. I have also asked the Drs at the Cyberknife forum. The general consensus is that the portion that is located in the CPA is relevant when judging the cutoff for radiation. BUT the shape can also be important - the less spherical it is, the more difficult it is to map treatment. So only a qualified radiation oncologist can judge each individual case. Also, it is my personal observation from reading posts on this forum that neurosurgeons will tend to report the largest size (including the portion inside the IAC), whereas radiation oncologists may report only the portion in the CPA. This can be the cause of big discrepancies in the reported size and a lot of confusion.

I can see Tumbleweed's point about your husbands' measurements: An "additional" 1.3 cm seems a bit too much. For example my AN (which I consider "large", is 2.9 cm in the transverse direction with "only" an additional 0.5 cm in the IAC.). So I wonder how exactly the radiologists measures the additional 1.3 cm. As mentioned before, the only way to figure this out is to talk to a qualified specialist. And I will agree with TW, the sooner the better, given the uncertainty about the size.

All the best,
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.

SHunter59

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Re: Newly diagnosed
« Reply #16 on: January 30, 2010, 08:29:59 pm »
Thanks Marianna. I will come back after the appointment on Tuesday and let everyone know what happens. Hopefully we will be able to get a referral to the docs at the Gamma Knife Center sooner rather than later.
Left AN 1.7 x 1.5 x 1.4 cm diagnosed 1/19/10, SSD left ear
GK 3/11/10 performed by Dr. McMenomy of OHSU and Dr. Bader of the Gamma Knife Center of Portland.

opp2

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Re: Newly diagnosed
« Reply #17 on: January 30, 2010, 08:59:55 pm »
Took me off guard to see my name and Marianna's post here.

I was turned down for radiation Shunter, due to the size of my an and the location. However I did send my discs to a radiooncologist in Illinios on the Cyberknife forum (Clinton Medbury) and he advised that they would recommend radiating the tumour.

It depends on the doctor and the size.

All the best of luck and good searching,

Nikki.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Tumbleweed

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Re: Newly diagnosed
« Reply #18 on: February 03, 2010, 02:55:01 am »

I can see Tumbleweed's point about your husbands' measurements: An "additional" 1.3 cm seems a bit too much. For example my AN (which I consider "large", is 2.9 cm in the transverse direction with "only" an additional 0.5 cm in the IAC.). So I wonder how exactly the radiologists measures the additional 1.3 cm.
All the best,
Marianna

A couple things might be going on here that led to the 1.3cm measurement for the IAC. First of all, the length of the IAC can vary quite a bit from person to person. If I remember correctly, 1.3 cm is about the maximum normal length, and measurements well under 1.0 cm (as low as 0.6 cm, if I remember correctly) are also normal. So SHunter59's husband just might have an IAC that's on the long side of normal.

Secondly, not all ANs completely fill the IAC as they balloon out in the CPA. In particular, an AN that originates in the CPA may not grow laterally completely to the extent of the fundus (the bony partition separating the IAC from the labyrinth), or lateral extent of the IAC. My medium-size AN was about 2 mm away from the fundus of my IAC when it was first diagnosed. So it's possible for an AN to extend only 0.5 cm into the IAC and not completely fill it.

Unless I'm mistaken, the single greatest factor for determining whether or not radiation can be applied to an AN is how much the brainstem is involved (i.e., in the way), and not necessarily the volume (someone please correct me if I'm mistaken). This is why I stressed that it's important to find out the overall measurement, including that portion which is inside the IAC: if the total transverse measurement is close to 3 cm, the patient may be close to the threshold for being denied radiation treatment.

Best wishes,
TW
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

SHunter59

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Re: Newly diagnosed
« Reply #19 on: February 03, 2010, 08:46:15 pm »
Happy to report hubby is a good candidate for gamma knife, please see post "Good news"
Left AN 1.7 x 1.5 x 1.4 cm diagnosed 1/19/10, SSD left ear
GK 3/11/10 performed by Dr. McMenomy of OHSU and Dr. Bader of the Gamma Knife Center of Portland.

kford

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Re: Newly diagnosed
« Reply #20 on: February 09, 2010, 10:05:05 pm »
Your husband's AN is considered on the small size, which is a good thing. It was caught early. They grow very slowly. My AN is 3cm in size and I was told that I probably had it for 10 years before diagnosed. Gamma Knife is a good option since it is so small and he probably will recover fairly quickly since there is no surgery involved with Gamma Knife.
Gamma knife procedure 1/25/08 for a 3cm AN. Left facial weakness after contacting Ramsey/Hunt Syndrome. (They say) No hearing in left ear.

SHunter59

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Re: Newly diagnosed
« Reply #21 on: March 05, 2010, 11:42:00 pm »
Hi all, just wanted to give an update. Hubby had his consult with Dr. Bader at the Gamma Knife Center in Portland and we had our tour of the place. They have the fairly new Perfexion machine here and it was quite surreal standing in the room with Dr. Bader checking it out. The staff are all great and the Doc didn't speak down to us but was very open and friendly. He said that this was definitely the way to go and if it were him he would choose this option every time, no question. So, hubby's Gamma Knife is scheduled for this Thursday March 11th and at this point, while not actually looking forward to it, he's not anxious at all, but wants it over with. I think more than anything he's looking forward to having a 5 day weekend, LOL...I will come back and let everyone know how things go after it's all over with  :)
Left AN 1.7 x 1.5 x 1.4 cm diagnosed 1/19/10, SSD left ear
GK 3/11/10 performed by Dr. McMenomy of OHSU and Dr. Bader of the Gamma Knife Center of Portland.

sgerrard

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Re: Newly diagnosed
« Reply #22 on: March 06, 2010, 10:40:08 am »
Sounds good. It will be easy, nothing to worry about on the day of treatment. I put your treatment date on the AN Calendar, too.

No word on the next Portland group meeting yet. I better get on that I guess...

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.

moe

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Re: Newly diagnosed
« Reply #23 on: March 07, 2010, 11:44:02 am »
Good luck this  week. Should be a "piece of cake" :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Tumbleweed

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Re: Newly diagnosed
« Reply #24 on: March 07, 2010, 08:15:43 pm »
Best wishes for your husband, and to you. We'll all be pulling for you.

GammaKnife is an excellent treatment choice. Your husband should rebound really quickly, and may not notice any side effects at all from the treatment.

Please let us know how it goes.

Best wishes,
TW
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

SHunter59

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Re: Newly diagnosed
« Reply #25 on: March 12, 2010, 06:22:29 pm »
Hi all, well hubby had his Gamma Knife yesterday and I can't say enough good things about it. It was a piece of cake from start to finish, the doctors, nurses and staff at the Gamma Knife Center of Portland were fantastic. We were only in the place about 3 hours from start to finish, hubby declined the relaxing medication, he said he didn't want to feel drunk all day and wasn't anxious about the treatment, he just wanted it over with, LOL...Since they didn't have to wait for the meds to take affect we were only in there about 1/2 hour when Dr. McMenomy came iin to fit the frame. He didn't ask me to leave but when he started opening syringes I decided it was about time to scurry away, while not squeamish I really didn't want to watch so I went back to the waiting room until he was done with everything and hubby had been for his MRI. His actual time in the Gamma Knife machine was an hour and Dr. Bader had said that his tumor was a good size for the planning, which didn't take them long to do. Hubby is doing fine today and aside from a slight headache and two little spots on his forehead(our daughter has zits bigger) you wouldn't know anything had happened. There were two other patients of Dr. McMenomy getting treatment yesterday also, both Acoustic Neuroma patients, must have been AN day at the Gamme Knife Center, LOL...Since everything went so smoothly I HIGHLY recommend this avenue of treatment to anyone out there who still may have concerns. Hubby feels exactly the same way, he had some dental surgery a few months ago and said that was harder by far. Again, thanks everyone for your help and support, I guess hubby can be called a Postie now :)
Left AN 1.7 x 1.5 x 1.4 cm diagnosed 1/19/10, SSD left ear
GK 3/11/10 performed by Dr. McMenomy of OHSU and Dr. Bader of the Gamma Knife Center of Portland.

Jim Scott

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Re: Newly diagnosed
« Reply #26 on: March 13, 2010, 12:50:05 pm »
SH ~

Congratulations to your husband on his trouble-free Gamma Knife treatment.  Yes, he certainly is a 'post-toasty', now.  :)

Most guys like to just get these kinds of things over with and apparently that is exactly what happened, yesterday, in your husband's case.  Bravo to him - and to you, too, for your steadfast support. 

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.