Author Topic: This Week 7/18/10 in the AN World  (Read 3401 times)

Rich56

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This Week 7/18/10 in the AN World
« on: July 18, 2010, 12:49:47 pm »
Congratulations Lisa (turbomom) as our new Postie.  We’re happy to read that “Wilson” the AN was successfully evicted via your retrosigmoid surgery on 7/7, and hope that your recovery goes very smoothly.

LAST WEEK:

Anne Marie (yardtick) we’ll keep our fingers, toes, arms, and legs (not our eyes, they might stay that way) crossed that the Lyrica your neurologist prescribed finally gives you some relief from those **** headaches.

JO (tenai98) that’s great news that you were able to get your MRI moved up to last Friday 7/16.  We home the results come back with good news.

THIS IS A BUSY WEEK:


Monday 7/19:

Greg’s (grega) BAHA Gotcha day has finally arrived.  Greg we hope that your BAHA experience proves to be everything you’ve hoped it would be.

Cindy (cin605) has her 2 year MRI.  Good vibes will be sent your way for clean MRI results.

Margen (margen) has an appointment with Jackie Diels.  We hope your appointment goes well also.

Tuesday 7/20:

Rab (RAB) is going for another hearing test.  Rab we understand that everything was going so well following your GK treatment, and now there are concerns with your hearing.  We hope the steroids that they put you on work, and that the results from the hearing test are encouraging. 

Wednesday 7/21:

T (sweet t) begins CK treatments.  T we hope that then CK is successful and that no further action will be needed.

Susan (skamper) has an appointment with her ENT.  Susan we hope that you get good news as well at your appointment.

Thursday 7/22:
Mei Mei (Mei Mei) has an appointment with the anesthesiologist.  Mei Mei we know you’ve been having a terrible time with headaches and that the nerve block has not helped.  Hopefully the anesthesiologist will have some good news on how to get you some relief.

Danielle (inmaine724) has an appointment at the Massachusetts Eye and Ear Infirmary in Boston.  Danielle we found everyone at MEEI & MGH to be very nice, and we trust that you will as well.  We hope that your appointment goes very well, and that you get answers to all your questions.  I’ve lost count now how many times we’ve been into MEEI & MGH.  Do yourself a favor, park under the YAWKEY building and walk over to MEEI, not in the little parking lot across from MEEI which is super cramped and full of bird droppings.  When you pay for the parking tell them that you are a patient and the cost will be cheaper, usually $8 or $9.

Thought this is not AN related, one of our AN family members just received some great news.
Jacqui’s (kiwi) news is that “I have just found out I am pregnant with my first child!!”
Congratulations Jacqui.

We are hope that “everyone” has a great week,

Rich & Scarlett
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

Jim Scott

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Re: This Week 7/18/10 in the AN World
« Reply #1 on: July 18, 2010, 02:16:15 pm »
Rich ~

My usual thanks for another informative weekly update.

My thoughts and prayers for all those experiencing various procedures this week, from testing to CK treatments to MRI scans to BAHA processor inaugurations to those trying new medications. and of course, again, congratulations to Jacqui on the impending addition to her family.  I hope all those struggling with pain will find a path to relief and that we can all enjoy a great midsummer week.

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.

grega

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Re: This Week 7/18/10 in the AN World
« Reply #2 on: July 19, 2010, 02:51:54 pm »
First ... Wishing the best to all who are facing procedures this week.  May you realize that thoughts and prayers go out to you from so many on this forum .... and that's very good!

Thanks Rich & Jim for the well wishes.  Yep, got the demo of a "Baha 3" today .... slight upgrade to the BP100, as was described by Cochlear's traveling audiologist in the mid-Atlantic region at my appt today.  I'll have the demo longer than I expected (due to appt calendar conflicts with my audiologist).  Programming and fitting of my unit will be in mid-Aug, so I'll have plenty of time to play around with this demo.

But it is pretty neat what it can do.

Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

dalern

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Re: This Week 7/18/10 in the AN World
« Reply #3 on: July 19, 2010, 07:26:45 pm »
Rich,
I love that you are doing this.  You are really terrific for keeping up with all of this.  The updates are wonderful.  Hope Scarlett is doing well.
~Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

sweet t

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Re: This Week 7/18/10 in the AN World
« Reply #4 on: July 21, 2010, 09:32:09 pm »
Rich and Scarlett,

Thank you so much for your well wishes - I can't tell you how much it really does make a difference.  Thanks!

My CK ended up being moved up to yesterday (Tuesday, July 20th), today and tomorrow.  On my first day, when we were taken to the room where I would lay for treatment and saw the robot - I started crying - I think it was the first time that I let my body feel wholeheartedly that I have a brain tumor and that I was about to receive radiation treatment for it.

and then came the preparation of laying down.  was kindly offered warm blankets, but then i was strapped onto the table - two straps across my arms/body.  it would have been nice to be given the heads up about the straps - it definitely felt surprising and a bit suffocating at first.  and then the putting on of the mask, which thankfully I am not claustrophobic.  The making of the mask is one thing, the wearing it for about an hour is another - and crying quietly for a little bit at the beginning didnt help - tears would just run down my face into my ears.

i have to say that oddly, when i could see the ck machine at my face, i sorta expected to see a ray of light (the radiation) go towards my head.  of course, that didn't happen, but i did feel like i was in a scifi movie.

making my own cd mix made a huge difference - i just let myself be lost in the music and then before i knew it, treatment for the day was over.  treated myself to a double hot chocolate in the lobby area and my friend drove us home.

i felt pretty tired on the way home, and then a few hours later, the right side of my face went numb, my jaw hurt on the right side, my ear felt popped (could not unpop it) and the ringing in my ears got worse and louder.  told the radiation oncologist (dr. wara - which I cannot say enough good things about - he is absolutely phenomenal - within all of my medical experiences - he has the most amazing bed side manor and ability to share information and receive questions with compassion.) and the neurosurgeon (dr. tse) and they decided to give me a dose of decadron (steriods) after treatment today - to reduce the symptoms that i was experiencing from early onset of probably swelling.

after today's treatment, my symptoms were worse within the hour after treatment, took two tylenol, took away some of the discomfort i was having and then i passed out for a few hours.  when i woke up the pain had subsided and the decadron also started to kick in - feeling pretty good right now.  slight numbness feeling still there, but no where close to where it was, the ringing has also lessened.

one more day to go...

i hope that it was okay that i wrote all of this out on here... for some reason or another, it makes it feel more like reality that i can deal with - rather than an experience that i just keep to myself...


suboo73

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Re: This Week 7/18/10 in the AN World
« Reply #5 on: July 22, 2010, 05:58:49 am »
Hi Rich!

Thank your for the consistently wonderful updates - it is so much clearer and detailed than simply reading the calendar.
I know it takes alot of time, and i appreciate it very much!
[Hi to Scarlett!]
---------
My sister - BigSister - had her two year (already?) MRI this week, as she continues in W & W.  Results will be revealed the first week of August.
I put a posting under W & W - but maybe should have placed it under "AN Community" (?).
I don't know how much time she reads on the Forum - numerous issues including other health issues, employment and caregiving have dominated her life particularly in the last six months.  -- Anyway, i wanted to add this note as an update.
--------------
Sweet-t -  Thank you for writing down your thoughts! As someone in W & W who would most certainly consider CK as a treatment option, it is good to read about the experience.  I pray your final treatment today is uneventful.  Please continue to update - maybe under another 'topic,' maybe Radiation or Post-Treatment?

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Vivian B.

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Re: This Week 7/18/10 in the AN World
« Reply #6 on: July 22, 2010, 02:13:06 pm »
Thanks for keeping us updated.

Good luck and good wishes to everybody!

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

leapyrtwins

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Re: This Week 7/18/10 in the AN World
« Reply #7 on: July 23, 2010, 10:06:08 pm »
Wanted to add a late entry to this week's recap; I just put it on the AN calendar a few moments ago.

Icebowlpacker's wife, Linda, had retrosigmoid surgery yesterday for an AN that was approximately 2.2 cms

Her surgery was 9 hours and it was performed by two docs very near and dear to my heart (Battista & Kazan).

Please keep Linda in your prayers - along with everyone else who had, or is having, treatment.

Grega - huge congrats on your BAHA Gotcha Day!  Hope it was as amazing as mine was  ;D

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

jaylogs

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Re: This Week 7/18/10 in the AN World
« Reply #8 on: July 24, 2010, 04:33:16 am »
Rich, again thank you very much for the weekly synopsis.  It's always good to keep these things in one nice package! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston