Author Topic: regrowth???? so lost right now  (Read 13726 times)

CHD63

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Re: regrowth???? so lost right now
« Reply #45 on: November 30, 2009, 01:27:33 pm »
Thinking about you so much, JO!! ..... hoping for the best!

Clarice

Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

tenai98

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Re: regrowth???? so lost right now
« Reply #46 on: November 30, 2009, 06:18:48 pm »
ok, put the news on another tread...
Doc doesnt know if regrowth took place as he had nothing to compare after surgery...He did explain that he left tumor behind to save the facial nerve and radiation is to follow....if I wanted it now, it would be gammaknife (his recommadation) but he said Ottawa has been granted permission to get a cyberknife machine and now they are waiting on funding and fundraising.....He said fundraising is low key right now so not to take away from the cancer fundraising....Next MRI is in May and then we will plan the radiation treatment....
And to end a great day, I received a Steve original in the mail!!! What more can a gal ask for!!!!
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

wcrimi

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Re: regrowth???? so lost right now
« Reply #47 on: November 30, 2009, 07:01:50 pm »
Jo,

It sounds like this doctor did not communicate the situation to you very well after surgery.

On a positive note, perhaps there is no regrowth.

Wayne
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

tenai98

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Re: regrowth???? so lost right now
« Reply #48 on: November 30, 2009, 07:19:51 pm »
Ya Wayne, I agree.....When I mentioned why the difference in size from one MRI pre surgery to another MRI post surgery....he blamed it on the way the radiologist read it...then when I asked him about the surgery transcript stating the he left two small strands of tumor behind and that the tumor was medum in size (1.8-2.0cm), he totally changed the subject going on to say how him and I talked about saving the facial nerve and doing radiation at a later date.  What I didnt KNOW was the size of tumor left in me....my way of thinking now is why did i bother going for surgery??? but then again, one doesnt know how sticky the tumor can be til the docs are in there....so now I STILL have a brain tumor and will have to go for another form of treatment....But again, its benign, i'm alive, I'm deaf, and I stagger...and life goes on...I'd rather be where I am now instead of like my sister in law waiting for a double lung transplant....and I know there are people worse off then I am....my condition is nothing compared to some.
JO ;D
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Tricia (horsekayak)

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Re: regrowth???? so lost right now
« Reply #49 on: November 30, 2009, 07:20:34 pm »
wow--what a rollercoaster ride this must be for you....sending you good thoughts!!!!
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington

moe

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Re: regrowth???? so lost right now
« Reply #50 on: November 30, 2009, 11:14:21 pm »
..But again, its benign, i'm alive, I'm deaf, and I stagger...and life goes on...I'd rather be where I am now instead of like my sister in law waiting for a double lung transplant....and I know there are people worse off then I am....my condition is nothing compared to some.

That's the spirit! I'm sorry too that you were ill informed after the surgery. Very confusing. So do you remember him telling you that you would need more treatment? Just a casual mis commuication! :o- oops
Ah well, at least you don't have to rush into anything right now. You can rest and enjoy the holidays. But all that stress and worry you went through.... You're a trooper.
 I'm SO sorry to hear about your sis in law who is waiting for a double lung transplant. I didn't know there was such a thing...I pray that she makes it through this.
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

tenai98

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Re: regrowth???? so lost right now
« Reply #51 on: December 01, 2009, 07:19:41 am »
yes Maureen, we did discuss radiation before the surgery took place. It was my understanding that if the tumor regrow we could go that way...Its still somewhat condusing for me as he told my sister afer surgy that he had to leave a small strand behind and when I got the surgical transript reports two small strands. And that it was sized at 1.8 -2.0cm. When I see my ENT on Dec 16th, I will be more prepared with questions....My ENT is a little more informative. The neurosurgeon also said that I can deal with the ENT from now on if I wanted too. And I think I will.  I like him better.
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

wcrimi

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Re: regrowth???? so lost right now
« Reply #52 on: December 01, 2009, 09:39:40 am »
Jo,

What is still not exactly clear to me is how big it was to START and how big is is now. 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

tenai98

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Re: regrowth???? so lost right now
« Reply #53 on: December 01, 2009, 10:14:41 am »
well according to the surgey transcript..it states 1.8-2.0cm post op.....and with this MRI its 1.6cm....guess it was bigger then originally stated on Nov'/08 MRI...coming in at 1.4cm....it is confusing....
My conclusion is I still have a brain tumor at 1.6cm and now need radiation in the coming yr...
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

mk

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Re: regrowth???? so lost right now
« Reply #54 on: December 01, 2009, 11:19:04 am »
That difference may be because of the way the size is measured. Neurosurgeons usually include in their measurements the tiny portion going inside the IAC. Therefore a tumor measured by the radiologist as being 1.4 cm in diameter (taking into account only the spherical portion in the CPA), can be easily 1.8 cm when incuding the IAC portion. This difference in measurement protocol  causes huge discrepancies and confusion.

The other thing is that for now there is no established pattern of growth. So maybe this remnant has been debulked (i.e. blood supply being cut off) and will never  grow. So you certainly need a follow up MRI in 6 months before deciding on further treatment. And given that your hearing is lost anyway, I don't think that choice of GK vs. CK would make a difference. They are equally effective in terms of control of the growth.

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.

Tumbleweed

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Re: regrowth???? so lost right now
« Reply #55 on: December 01, 2009, 01:57:34 pm »
Sorry I'm late to this thread.

JO, please try not to torture yourself about having surgery that resulted in residual tumor and regrowth. There is no way to predict outcome for any type of procedure treating an AN. We place our bets and must live with the consequences. As for your protein shakes possibly causing the regrowth, I doubt it. There is no established link between protein consumption and AN growth. I was on a low-protein diet for 5 months while in W&W, and my tumor grew 5x faster than normal! Since having CK, I've been chowing down a lot of salmon, and my tumor has shrunk much faster than normal! So I doubt there's any correlation between protein intake and growth rate. What I would be careful about is eating sugar. Although I haven't read any studies that correlate sugar consumption and AN growth, some research indicates that tumors in general are thought to grow in a hyperglycemic (high blood sugar) state. And radioactive isotopes used in imaging are often given with sugar in order to locate tumors, because the sugar (with the isotope tagging along for the ride) goes straight to any existing tumor in the body.

As far as the practical differences between CK and GK, as Marianna stated, you wouldn't see any benefit with one over the other as far as hearing preservation goes, because you are already SSD. But I would inquire as to whether your residual AN is encircling your facial nerve or only sticking to one side. If the latter, then there would be no difference between CK and GK. But if your tumor encircles your facial nerve, CK may possibly better preserve your facial nerve function because it would deliver less radiation than GK to the nerve itself. CK delivers only 15% higher radiation dose at the center of the "radiation cloud" than at the periphery, whereas GK delivers fully twice the dosage at the center compared to at the periphery. With both types of treatment, no attempt is made to avoid irradiating any cranial nerves that are in the way.

Hope that helps...

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