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Author Topic: Date set/Greg's update  (Read 10717 times)

CHD63

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Re: Date set/Greg's update
« Reply #15 on: June 17, 2009, 08:53:27 pm »
Greg .....

Did not get in here before your big day, but glad to hear all went well.  Not having had any GK or CK experience, I can only say I pray all goes equally well for you in the days ahead as it did today.

Clarice
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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

4cm in Pacific Northwest

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Re: Date set/Greg's update
« Reply #16 on: June 17, 2009, 09:19:00 pm »
Greg,

I just caught this post. This is GREAT news that you came to a decision and that are able to be not too far from home-  for treatment.

I am so pleased you are at peace with this.

If anything comes up do not hesitate to PM us Oregonians… we can be there for support.

HUGS,

DHM

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4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

sgerrard

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Re: Date set/Greg's update
« Reply #17 on: June 17, 2009, 10:56:11 pm »
Glad to hear you got it done, Greg. You are a postie now. Resume living. :)

Hello to well behaved Dimitri, and your wife Amber too. Come to the next Portland ANA meeting in September, and tell your story like the seasoned veteran you will be.

Steve
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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.

Jackie

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Re: Date set/Greg's update
« Reply #18 on: June 18, 2009, 01:12:50 am »
Hello Greg,

Congratulations on making it through to the other side. Glad you and Amber and Dimitri can get back to living your lives again!!! Hope you see no more issues!!!
Blessings always,
Jackie
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9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Vivian B.

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Re: Date set/Greg's update
« Reply #19 on: June 18, 2009, 05:17:43 am »
Hi Greg,

I was thinking about you on my way to work this morning. Glad you posted an udpate and that things went o.k. I wish you success.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Mickey

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Re: Date set/Greg's update
« Reply #20 on: June 18, 2009, 07:47:53 am »
Hi Greg! I`m glad that you GK experience has gone well. Sounds like your on your way to a nice recovery. My AN is approx. same size as yours. I`m W+W for as long as I can feel good with having no change in AN size. If I was to do anything it would probably be the same as what youv`e done. I`m interested in your experiences and sure that you will be fine. Prayers are with you, Best wishes, Mickey
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Sefra22

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Re: Date set/Greg's update
« Reply #21 on: June 18, 2009, 09:04:33 am »
Congratulations Greg! Isn't it great to have the experience behind you? I hope you continue to feel good & don't push yourself too hard too fast.

Lisa
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Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

Jim Scott

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Re: Date set/Greg's update
« Reply #22 on: June 18, 2009, 02:23:54 pm »
Greg ~

Thanks for your positive and affirmative update.  I'm very pleased to learn that it was a relatively trouble-free GK experience and that you're ready and eager to get on with your life and put the AN experience behind you, while realizing that it is always going to be a part of your life in some measure.  I wish you clean MRI scans and a great life as you and your family move forward.  :)

Jim
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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.

Keri

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Re: Date set/Greg's update
« Reply #23 on: June 18, 2009, 09:57:30 pm »
Hi Greg,
I just found your post as well. I'm glad it's over and that you're doing well. I hope and pray for no side effects either.

Keri
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

eab

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Re: Date set/Greg's update
« Reply #24 on: June 19, 2009, 02:15:32 pm »
Greg,

Congrats on getting it done! I hope you are still feeling well.

I am on the fence between GK & CK, so it's great for me to hear about your experience.  My thanks for your updates!
Good luck and keep us posted!

Beth
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Left side AN 2.5x1.7x1.5cm, limited hearing loss, limited tin., good balance
GK 7/6/09 Hoag Hospital; MRIs at 2, 6 & 12 months show no change in tumor size - hearing etc. same as before GK.

GRACE1

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Re: Date set/Greg's update
« Reply #25 on: June 24, 2009, 02:04:37 pm »
Just read of your GK experience.  Sounds a lot like mine.  I am so glad for you.  Keep us posted.

Grace
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Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

Greg M

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Re: Date set/Greg's update
« Reply #26 on: July 26, 2009, 03:38:52 pm »
Hi everyone, I haven't been on in a while. Thanks everybody for all the positive vibes! For those of you who I have talked to through P.S., feel free to write me with any more ?'s.

Well i am feeling good, with only an increase in tinnitus. Thankfully so far it is bearable. I do feel a tad bit of pressure back there once in a while. Other than that I feel the same as when I went in. My hearing seems the same, I am counting my blessings day by day, that's the only thing for me to do.

So my neurosurgeon is retiring, which is great for him and I'm happy for him. I'm now thinking what I should do. I'm only 6 wks out of treatment and I have to see a new neurosurgeon. They transferred my file to the doctor under my recent surgeon. He has GK experience as he worked along side my doctor(I don't know how much). I kinda wish he was there during my treatment  so he knows exactly how things went down. So my question is can any neurosurgeon qualified in treating AN's look at MRI's and determined if it is a successful or not? I mean even if they did not do the treatment? Another ? is can a neurosurgeon who does not do GK's be a good candidate to read my MRi's in the future and determined whats what? (the doc that i am thinking about does AN surgery just not Gk's)

Well thanks for your time, blessings Greg
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diagnosed 1-9-09 1.3cm LF side AN
some tinnitus, high frequency hearing loss
GK 6-17-09 @ GK center of Portland
Dr.Bader & Dr.Wayson
Time will tell......

sgerrard

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Re: Date set/Greg's update
« Reply #27 on: July 26, 2009, 04:51:08 pm »
Hi Greg,

Sounds like it is going well, all things considered.

As for changing doctors, I think during the first year or so, having someone who is familiar with the typical course for radiation patients is important. Otherwise swelling might be taken ass a sign of growth, causing unnecessary alarm. Once the tumor is stabilized, any doctor familiar with ANs should be able to determine if it is still stable or has started up again. Having a doctor familiar with swelling issues would also help if it rises to a level needing temporary steroid treatment. Based on the two you mention, I would go with  the one who worked with your original doctor, at least for a while, unless he seems too green.

I hope it works out.

Steve
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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.

mk

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Re: Date set/Greg's update
« Reply #28 on: July 27, 2009, 01:42:36 pm »
Hi Greg,

I am glad that everything is going well. Don't worry about the odd pressure/fullness etc., I found that everything went away after a few months and even tinnitus has been reduced to nothing.
 I agree with Steve that it is important to have a radiation oncologist who is familiar with how these tumors are supposed to behave after radiation, knows when steroid treatment might be needed etc. A simple neurosurgeon who is not familiar with stereotactic radiosurgery may not know all the intricacies.

Having said this, my experience is that the most important thing is to keep your own control of everything. Unless you have a doctor that you can absolutely trust, I would never listen blindly to what each doctor says, because they may have very different opinions. I did this initially and the different opinions drove me crazy. So keep track of all your MRI reports measurements etc, read your own MRI images if possible, and ask as many questions as you can.

Wishes for continued wellness
Marianna
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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.

Jim Scott

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Re: Date set/Greg's update
« Reply #29 on: July 27, 2009, 02:44:56 pm »
Greg ~

For what it's worth, I agree with Steve...stay with your current doctor's successor - for at least a year or so. 

My neurosurgeon got antsy when he saw my remaining AN swell a bit, 6 months after completion of my my FSR.  Even though I had no symptoms, he ordered yet another MRI for 3 months later.  That MRI showed that the swelling had subsided and all was well, except for my large co-pay on the 'extra' MRI scan.  I'm now on an annual basis for MRI scans. 

I believe that a competent neurosurgeon who has had at least some experience with acoustic neuromas would be qualified to read an MRI report and view the images with a comfortable degree of reliable expertise.

Jim 
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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.
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