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Author Topic: Date set/Greg's update  (Read 10178 times)

Greg M

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Date set/Greg's update
« on: June 12, 2009, 12:29:14 pm »
Hello everyone, I have a date with the Gammaknife machine on June 17th. It's not the most ideal date but beggars can't be choosers. The insurance came through, I am blessed for that. I am thankful for all the info and companionship you all have given to me over the last 5 months. This was the most difficult decision of my life, well the naming of my son was a bit more difficult. I am looking forward to move on with my life, and accept my future as it is. What will be, will be, what is, is. To all of you who are in the decision process, it is a process. Be patient with your self, go deep on this one and what ever feels right, know that it is all you really can do. Go with your gut and believe in yourself that you can beat this thing because you CAN. My thoughts and prayers are with everyone. Peace through love Greg
« Last Edit: June 17, 2009, 07:35:18 pm by Greg M »
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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......

Sefra22

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Re: Date set
« Reply #1 on: June 12, 2009, 04:32:00 pm »
June 17 is going to come fast! I believe you'll be happy with your decision, I know I am with mine. I was all set to have surgery,date and all, then I found out about GK. The surgery recovery time was something I agonized over, but with GK, I was back to work within a couple of days.
Good Luck to you, and let us know how it goes.
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

leapyrtwins

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Re: Date set
« Reply #2 on: June 12, 2009, 06:09:39 pm »
Congratulations on the date, Greg.  Did you put it on the AN Calendar, yet?

I'm glad the insurance company came through; I know from personal experience that AN treatment - of any kind - isn't cheap. 

I'm confident things will work out for you and that you will move on with your life just fine.  I can also tell you that "going with your gut" is actually a very good way of making important decisions; it's worked for lots of us.

Please make sure you come back to the forum and give us an update on your procedure.

And now you've aroused my curiosity, what did you name your son?

Jan
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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

Greg M

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Re: Date set
« Reply #3 on: June 13, 2009, 10:24:19 am »
Thanks Lisa & Jan, it is coming up fast. I just found out about the insurance on Thursday. I have yet to put it on the calender, not sure on how to do that. So after having this thing zapped, am I a brain tumor survivor?? Sounds a little weird to me.

I am nervous about going in, with hardly no symptoms as of today. It makes the whole process of getting treatment harder, but I do want to stop it in its tracks so treatment and the GK makes sense to me.

I was planning to work the next day, I am wondering if that is such a good idea?? I am a baker so I have to be at work at 5am, it's not high production or stressful work place but I wonder if I should take a few days off?? any suggestions?
 
Naming our son was a difficult decision, here is the out come- Dimitri Kanyon Menkiena


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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......

Jim Scott

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Re: Date set
« Reply #4 on: June 13, 2009, 01:54:05 pm »
Hi, Greg ~

Congratulations on conquering the insurance dragon and having a firm date for your GK.  I took the liberty of posting the date on our AN Treatment Calendar: http://my.calendars.net/an_treatments/d17/06/2009?authenticate=&display=M&style=B.  I didn't have any details so feel free to edit as you wish.

I would advise taking the following day (or two) off from your bakery job, more as a caution than anything.  Better to be off than come in, not be up to the work, and having to leave, possibly setting back your recovery and probably inconveniencing your co-workers to some extent.  Everyone reacts to their radiation treatment just a little bit differently.  You won't really know your reaction until it happens, so I suggest taking the conservative approach.

Your son's name is fine, a nice mix of ethnicity.   As you know, Dimitri is Greek in origin and coupled with an equally unusual middle name, he'll do well with it, I'm sure.  Of course, if he's like most kids, around age 14 he'll just want to be called by a nickname, but at least you started him off with a solid first and middle name.  :)

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.

sgerrard

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Re: Date set
« Reply #5 on: June 13, 2009, 06:32:32 pm »
Glad to hear you have been able to arrange treatment, Greg. I am curious, is this through the Oregon Health Plan, and are you going to the GK center in Portland?

I was fine immediately after radiation treatment, but I think sometimes people need a day or two - perhaps more often after GK since it is all in one day. I didn't really feel anything until a couple of months later, when a little something came along.

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
« Reply #6 on: June 14, 2009, 12:16:34 am »
Hello Greg,

I am so happy for you ,first that you made a decision and second, that the insurance came through for you! You have great support in your wife and your adorable Dimitri. Such a very well behaved little boy! May you have a very successful turnout to your Gammaknife experience on the 17th. I hope your journey will be a blessing to you and your family, and may you go forward and prosper. Thinking of you and sending you prayers,
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???

Greg M

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Re: Date set
« Reply #7 on: June 14, 2009, 11:24:30 am »
Thanks Jim, Steve and Jackie for your thoughts and prayers. I am going to take the week off of work, it would be a good break and i can just chill out after wards.

Yes the insurance is OHP and I'm having it done at the GK center in Portland. Dr.Bader is the radiologist and Dr. Wayson is the neurosurgeon.

Is there anything I could do to help with swelling besides steroids (herbs or what not)?? That's of course if there is any swelling!! 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......

Vivian B.

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Re: Date set
« Reply #8 on: June 14, 2009, 11:34:29 am »
Hi Greg,

I'm glad you have a date and it is a lucky date, it is my son's 18th birthday. Good luck and best wishes. By the way, I have heard very good things about the Gammaknife treatment, after all it has been around since the 1960's and has come a long way. It will be good. Please let us know how you are doing.

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.

mk

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Re: Date set
« Reply #9 on: June 14, 2009, 06:10:02 pm »
Greg,

good luck, I am sure you will do fine.
On the issue of swelling, of course no one really knows if there is anything that can be done to prevent it. I didn't take any steroids, other than one shot IV right after my treatment. I took a daily dose of curcumin, a natural antiinflammatory. I am not so much the natural herb/supplement person, but I thought it wouldn't hurt. I didn't have any swelling as evidenced by my subsequent MRIs, but of course there is no way to know if the curcumin actually played a role.
I also saw your question about taking the day after treatment off, I would say definately yes. You will be physically exhausted after a very long day, and you certainly need to give some time to your body to recover. I would say take it easy for a few days, try to rest as much as you can, even if it is taking 10 minutes off work to relax.

My best wishes for a successful outome.

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.

Sefra22

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Re: Date set
« Reply #10 on: June 14, 2009, 07:39:56 pm »
Hi Greg,
I am glad to hear you are taking some time off after the procedure. Like Marianna, I was only given one dose of steroids immediately after treatment. 4 months after treatment I experienced some vertigo, and Dr. Noren prescribed a steroid. I was told to get the prescription filled, but not to take them unless the vertigo became severe. My pharmacist told me that one you start taking them, you have to be weened off, as there can be a lot of side effects. I never did take them, and the vertigo episodes only lasted a short time.

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

GRACE1

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Re: Date set
« Reply #11 on: June 15, 2009, 07:05:16 am »
So glad your insurance came though.  Taking at least a couple of days off after GK is a good thing.  I had my GK in Dec 2006, have done very well since, and have never regretted my choice.  My prayers are that you will have the same experience.

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
« Reply #12 on: June 16, 2009, 10:45:26 pm »
Thank you Vivian, Marianna, Lisa,Grace and everyone on this forum I have yet to talk to. Thank you for all the wonderful thoughts and prayers. I will keep ya up to date on how things went and are going. Blessings to everyone. Greg
Logged
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......

Jackie

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Re: Date set
« Reply #13 on: June 17, 2009, 12:18:42 am »
Greg,

Your big day is tomorrow and special prayers are going out for you for a super successful Gk treatment and a speedy recovery with no side effects! We'll be anxiously awaiting news!! Take good care....
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???

Greg M

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Re: Date set/Greg's update
« Reply #14 on: June 17, 2009, 07:56:09 pm »
Well everything went well and i feel pretty much normal. I took a nap when I got home, feeling good enough to hang with the 3 yr old! I went in at 7am and was finished at 10:30am. Went by really quick, the head frame was tight! It felt good on the AN side though, kinda like acupuncture but X10. They said it took 6 positions to completely fill the tumor. I was the only patient of the day so I felt like I had the place to myself and I had every body's attention. My family was there (my wife Amber and son Dimitri). Dimitri brought a lot of light. Now it's a waiting game, have MRI's was in a while and live life. Every day a new day, say your blessings and give thanks. I pray any side effects will be none or minimal. It does feel quite good that I can start to put this thing behind me, but as we all know having an Acoustic Neuroma, our lives are changed in some way for ever. I pray everyone here well in there journey, for that it is. I will keep ya updated on any changes, for I might have some ?'s. If any one is thinking about getting the Gammaknife treatment I would be happy to talk to you about my experience. Thanks again for everything. Peace through Love Greg
« Last Edit: June 17, 2009, 08:05:26 pm by Greg M »
Logged
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......
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