Author Topic: Newly Diagnosed in FL  (Read 12506 times)

Dolwin

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Re: Newly Diagnosed in FL
« Reply #15 on: July 27, 2011, 02:35:42 pm »
Well, good and bad news yet again.  Sometimes this process seems so frustrating!

I had my consultation with Dr. Golden at the MIMA Cancer Center here in Melbourne, FL this morning.  I really like her, and she was extremely informative on everything.  Went over any questions I had (I took the list from the ANA website along) and was great to deal with. 

She was also very honest, after checking my hearing quickly and showing us MRI images that show where the tumor is starting to press against the brain stem, she said that although a radiation treatment could be effective, surgical removal would be a better route.  Between my (relatively) young age and the fact that my hearing is already gone on that side, there aren't that many benefits to a radiation treatment.  She said that this type of tumor isn't likely to shrink much if at all after radiation (unlike a cancerous tumor) and with it already starting to put pressure on the brain stem removal would be the better approach.

Also, she advised that I should circle back with Dr. Paine and verify his familiarity with the procedure, and if he doesn't do many that I might be better served by seeking a doctor that specialized in skull base surgery.

It's so confusing when the surgeon says to go with radiation, and the oncologist says to go with surgery!   ???
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

Jim Scott

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Re: Newly Diagnosed in FL
« Reply #16 on: July 27, 2011, 03:12:41 pm »
Dolwin ~

Thanks for the update.  Your description of your consultation with Dr. Golden gives the impression that, as you noted, she is affable, knowledgeable and gave you good medical advice, based on facts.  This is, in essence, exactly what you want from a doctor consult, even if it isn't always good news.  It appears that surgery may be your best choice but that, of course, will be your decision.  I would be encouraged to receive a definite, professional opinion like this (from Dr. Golden) and I trust you'll put the information to good use as you pursue your attempt to find out your viable options.  As always, we stand ready to help, as needed.  Good luck as your 'quest' continues.

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.

Dolwin

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Re: Newly Diagnosed in FL
« Reply #17 on: July 27, 2011, 03:36:55 pm »
Thanks Jim.  I'm very thankful that all three of my doctors (ENT, Neurosurgeon, & Radiation Oncologist) have been great to work with and very honest in their opinions.  It's a tough decision, but I'm still leaning heavily towards surgery as my best option - especially after speaking with Dr. Golden today.

I looked around a little to see what I could find out about Dr. Medary & Dr. Fields in Orlando, but it's hard to find good info online.  Most reviews by patients/family members are on back-related surgeries which isn't that helpful.  I know Dr. Paine is a wizard with back-related surgeries as well.  But nothing on brain tumors of any kind, which is so frustrating!
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

leapyrtwins

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Re: Newly Diagnosed in FL
« Reply #18 on: July 27, 2011, 11:15:22 pm »
She said that this type of tumor isn't likely to shrink much if at all after radiation (unlike a cancerous tumor) and with it already starting to put pressure on the brain stem removal would be the better approach.

I'm not a doctor, but I'm confused by this comment.

Don't you have an acoustic neuroma?  Is this doctor saying that ANs don't "shrink much if at all after radiation"?

That doesn't make sense to me.  Lots of Forumites have had radiation that led to necrosis, which ultimately lead to shrinkage. 

The idea of your AN starting to put pressure on your brain stem making removal the better approach makes sense to me.

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

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Kaybo

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Re: Newly Diagnosed in FL
« Reply #19 on: July 28, 2011, 05:35:04 am »
I was a bit befuddled by that too... ???

K   ;D
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Dolwin

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Re: Newly Diagnosed in FL
« Reply #20 on: July 28, 2011, 08:35:24 am »
I was confused by that as well, and probably didn't put in enough of what Dr. Golden had stated.  She said that with a non-cancerous tumor such as an AN, you don't see the dramatic shrinkage like you get in a cancerous tumor.  She said it may shrink a little, but not much and it will continue to be a presence in that area.

A great quote from the ANA site itself regarding radiation:
Quote
Patients should understand that all types of radiation therapy for acoustic neuromas may result in “tumor control" in which the tumor cells die and necrosis occurs.  Tumor control means that the tumor growth may slow or stop and, in some cases, the tumor may shrink in size. In almost no cases have acoustic neuroma tumors been completely eliminated by radiation treatments. In other words, radiation does not remove the tumor like microsurgery can.
« Last Edit: July 28, 2011, 08:39:51 am by Dolwin »
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

Jim Scott

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Re: Newly Diagnosed in FL
« Reply #21 on: July 28, 2011, 01:35:09 pm »
Dolwin ~

Good point regarding AN shrinkage from radiation.  My radiation oncologist told me that although my radiated AN was showing signs of shrinkage, that it would probably never disappear - but that this was not a problem.  I think Dr. Golden made the mistake of putting the issue of tumor shrinkage in absolute terms, which is always a bit risky.   However, as you've surmised, whether the radiated AN disappears or remains in a dessicated state, it will be of no consequence to your health, and that's what counts.

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.

Dolwin

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Re: Newly Diagnosed in FL
« Reply #22 on: August 08, 2011, 10:10:04 pm »
Well, today was the big day.  I met with Dr. Paine this afternoon and we discussed more details on how he would handle the procedure as well as his past experience with AN and similar skull base surgeries.  I was impressed with his answers, and am confident in his abilities and experience.

So now I'm waiting for his office staff to get in touch with me to set the date - hopefully they'll call Tuesday or Wednesday this week.  *fingers crossed*
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

Dolwin

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Re: Newly Diagnosed in FL
« Reply #23 on: August 09, 2011, 11:11:12 am »
Well, it's almost official.  Spoke with Dr. Paine's office this morning, as we set the date for 8/25.  Unless something comes up with scheduling any of the pre-surgery appointments (CT Scan they mentioned?), that's the date for my retrosig.  Scared and excited at the same time.   :o
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

New girl

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Re: Newly Diagnosed in FL
« Reply #24 on: August 09, 2011, 01:21:21 pm »
Great news!  I am glad you found good surgeons that you are comfortable with.  I understand the scared and excited at the time time.  I am up for surgery at the end of September.  Good luck and best wishes!   :)  Keep us posted.
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

Jim Scott

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Re: Newly Diagnosed in FL
« Reply #25 on: August 09, 2011, 03:03:04 pm »
Dolwin ~

Congratulations on arriving at a surgery date.  I remember that weird mixture of feeling both excited and scared, too.  It's normal.  Just be positive and confident with your decision and that will help your attitude so that the excitement will overcome the fear.  I wish you all the best as you proceed.

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.

Andr3tti

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Re: Newly Diagnosed in FL
« Reply #26 on: January 14, 2016, 09:20:26 pm »
Hello all, I found this thread searching local doctors for AN. Dolwin, I also live in Palm bay and was diagnosed Nov. 2015. I saw Dr. Malis in Melbourne.  he referred me to a doctor in Gainsville, however he is not in our insurance network for I am looking local. some clients reffered me to Dr. Ho, however I think he may be the same level of ENT as Dr. Malis, whereas referring you to a radiologist & neurosurgeon.

Anyway, I was curious on the result of your surgery. the post I saw left off just before you were going to have it.

CHD63

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Re: Newly Diagnosed in FL
« Reply #27 on: January 15, 2016, 07:06:48 am »
Hi Andr3tti .....

Welcome!  As I am sure you noticed, this is a very old thread and some of the information contained in it is undoubtedly out of date.  Also, just so you know, this discussion forum does not send notifications to previous posters about new comments like Facebook does.  Since it has been almost five years since the last post was made on this thread, it is somewhat unlikely the original person is still checking for new posts.

That being said, the ANA highly recommends seeking treatment from doctors who have successfully treated many ANs in the course of their careers.  I would urge you to send for the free informational material from the ANA.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy

Best wishes.  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