Author Topic: Guess what I got for my birthday . . .  (Read 7335 times)

6pick

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Re: Guess what I got for my birthday . . .
« Reply #15 on: August 01, 2010, 10:05:09 pm »
Thank you Connie,

Well, I saw Dr. Chang (Stanford) on Friday and came away relieved and pretty much convinced that radiation (CK) is the way to go.

One of my concerns was the difficulty of a follow-up surgery after radiation if needed. Dr. Chang said that regardless whether we "cut" or "nuke" first, a follow-up surgery is always more difficult in either case.

As for my concern about my "alien" resting against my brain, he says I have plenty of room so the swelling after radiation isn't a problem; it conflicts with the gentleman who gets paid by the people who do the MRIs, Adam Attoun . . . I think I'm going with Dr. Chang.

One interesting factoid he gave me is that might be of interest to others is, in his opinion, one of the most difficult things for patients to understand is that the symptoms are not related to the size of the tumor. Now I get why tumors can get so big: 4 cm, 8 cm. Wow. Mine's 1.7 X 2.5 cm and it bugs me. How can a tumor get to be 4 cm? I'm blown away by Jim's 4.5 cm and Satman's 8 cm beast.

The other thing he said is that it generally takes approx. 2 years to die completely, but if it dies too fast the symptoms get worse (they can be controlled with steroids), but the point is that there is a correlation between the tumor death rate and the symptoms.

And finally, for me, there actually exists a very slight possibility that my hearing could undergo some slight improvement. If I have the surgery, it's pretty certain that they'll do a translab and, as you know, my hearing loss would be total fer sure, fer sure.

So it looks like I'm going to focus on CK.



Phyl,

I really liked Dr. Blevins and felt perfectly comfortable having him do my surgery - if I was going to go that route. If I see him again, I will most certainly pass along your regards.

Thanks to all for your input. It continues to be invaluable. But most of all, it's really helps to know I'm not alone in this.

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

free2be

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Re: Guess what I got for my birthday . . .
« Reply #16 on: August 02, 2010, 06:39:21 pm »
No, Mark, you are by no means alone in this; that is the wonderful thing about this forum. Though we don't know each other, we understand and relate to our mutual situations in a way that even those closest to us can not "really" do. For that I am grateful. I don't know where I would be or what I would be doing if I hadn't found this forum to read, vent, and ask questions. It's wonderful to have a community like this.

Thanks to all of you,
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

6pick

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Re: Guess what I got for my birthday . . .
« Reply #17 on: August 02, 2010, 08:26:21 pm »
Here, here!

or is that

Hear, hear! (Sorry, that was too obvious   :D)
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

NE Farmwife

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Re: Guess what I got for my birthday . . .
« Reply #18 on: August 04, 2010, 08:11:37 pm »
I had CK with Dr. Chang a year and a half ago.  The only problem that I have is that I lost more of my hearing about 6 months post CK.  It is livable.  I would make that choice again.  I felt fine the week of CK and had no noticable side affects following treatment other than the hearing loss.
Diagnosed 11/11/2008   2.2 cm
CK at Stanford 01/12/2008
Facial numbness, hearing loss, lack of taste and tinnitis

6pick

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Re: Guess what I got for my birthday . . .
« Reply #19 on: August 05, 2010, 07:59:44 am »
Good to know. I asked the good doctor in my consultation (just for fun  ::)) if I might regain my hearing with CK and I was totally surprised when he said it was possible. Also, I accepted the total loss of my left side hearing when I accepted the ramifications of surgery. It's not something I would like but, as one of our "sisters in this" said, "it is what it is". However, now that I've made the choice to do CK, It feels good to retain some hope that my left side hearing might recover somewhat.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

leapyrtwins

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Re: Guess what I got for my birthday . . .
« Reply #20 on: August 06, 2010, 12:42:39 am »
6 -

IMO, Dr. Chang is a great choice.  I've heard nothing but great things about him.

Good luck with your treatment; hope all goes well.

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

6pick

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Re: Guess what I got for my birthday . . .
« Reply #21 on: August 06, 2010, 11:20:36 am »
Thanks, Jan.

Yes I, too, have heard only the very best things about Dr. Chang and believe me, it was one of the factors that helped me choose CK. Dr. Chang would have been present at my surgery if I had chosen to do that with Dr. Blevins, who I feel is an excellent Otolaryngology surgeon, however, I think that as much as I am not in favor of having atomic particles shot through my head, I'm even less in favor of having my skull cut open (and I have pure compassion for anyone who had or has to have that procedure).
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

free2be

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Re: Guess what I got for my birthday . . .
« Reply #22 on: August 06, 2010, 05:17:24 pm »
NE Farmwife and Jan,

Thank you also for chiming in with your "good vibrations" about Chang and CK. I have also made the decision to go to Stanford for Chang to perform CK. I think there are 3-4 of us, whom I have chatted with, that have made this same decision of late. I hope we don't overtax them out there. I'm glad I'm resolved and have a direction. I'm not concerned about the process much, just a bit about the aftermath, but I know it needs to be done and so we all just keep moving forward.

Best to all and keep us informed, Mark.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

 


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