Author Topic: It is over & PattyCake is still here  (Read 3541 times)

pattycake

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It is over & PattyCake is still here
« on: March 21, 2008, 07:37:21 pm »
 :D  With deep regrets I am sending out a Mass Mailing for many thank yous - Prayers, support, food, little happy notes & good thoughts;  you all know what you did for us.  And it makes my cry to think of all your kindnesses. The day of surgery & ICU is better gotten from Joe - I don't remember a lot of it which is a very good thing. Typical of me, I got very nauseaus & had a hard time gaining energy for the come-back  Treatening to send me to rehab was a good move though :-)   Actually, once you get on your feet & get the walkers & cane the Steroids kick in. You think you are better than you feel. I had surgery on Friday March 14 at MassGeneral/MEEI with Barker & McKenna.  There just is no better team,  Barker seems always to be inventing new ways to get in & out of the brain without extra trauma.  I had the best care from the best Doctors, to all the Nursing staffs, to the PCAs.  A friend described it to me as looking for a place where they do these techniques 2 years before others try it out.  It was a big stretch for me to believe that medicine is not the same everywhere in the US - but there certainly are better places. I still cannot believe that I drove over 100 miles home OK - the tricks shared from here were to get a great Neck Support Pillow and a blindfold.  It really helped keep keep me calm.  The greatest pain I felt was just being wheeled down the floors in the wheelchair if you believe that?  I had not been aware of the quiet environment before I first felt movement.  Once on the road it was easy.  My neighbors organized a dinner calendar when we got home, which Joe resisted - but after all the local therapy, cleaning, medications etc... it has proved to be a godsend. I don't know the details till follow up visits - but generally was 1.8cm x 1.4 cm beforehand.  If you can believe the nerve of my body?  I was originally scheduled 2/1/08 - developed bronchial asthma flu thing & had to wait another 6 weeks. But I will add that it gave me daily lenten masses to keep me calm --- and if you have a chance or inclination --- try Reiki healing the day before. I was so calmed by the process  (Hartford Hospital uses this in the alternative Cancer Care). 

I hope you let me stay with you guys - I had a Meningioma - not an AN.  I had Retro-Sig because I really have decent hearing left (about 90% for sound.  Still need final testing in a few weeks for word recognition.)   They kept ALL of my nerves in tact - vestibular, facial & hearing.  My hearing is no better nor worse than it was before.  Easy to say now that it's over, but I do think the worry was worse than the surgery! I did not LIKE making all my own decisions -- and then I did not LIKE looking out of town for surgeons.  But Please strongly consider that if you are moving along these lines.  Meningioma has a higher recitivism rate - so I'll save Radiation for the next time if it comes back in several years (10%).  I have a gut feel so I just went with it for my later resort.  How great will medicine be by then!  When I'm on my feet I'll be happy to be a local advocate for questions .... I couldn't stay OFF this site when I was first diagnosed, then I had to get away from it because I got pretty scared.  But thank you all (especially Katie) for my last minute Q&A.  Seems like everyone's case is just a bit different & nobody wants to say too much - statistics are pretty positive though - and luckily I have so far been OK.  I know sliding backwards can happen - but then there's always the march forward again isn't there.  I livein mid-CT, try to get to Hartford Grps & occassionally to the Worcester breakfasts.  Thank you all, you are the ones who really know.  Everyone else wants to help - but you KNOW!!   HAPPY SPRING!!! 
« Last Edit: March 21, 2008, 07:40:03 pm by pattycake »
1.7cm x 1.4 - Surgery 3/14/08 - Meningioma
Mass General Hosp - McKenna & Barker - no facial problems
Persistent Headache pain remains

krbonner

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Re: It is over & PattyCake is still here
« Reply #1 on: March 21, 2008, 08:11:40 pm »
It's so great to hear from you.  And please do stick around!!

Keep resting, and keep letting others take care of you!

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Kaybo

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Re: It is over & PattyCake is still here
« Reply #2 on: March 21, 2008, 08:21:24 pm »
Glad you are on the road to recovery!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: It is over & PattyCake is still here
« Reply #3 on: March 21, 2008, 10:22:40 pm »
Pattycake -

Katie told us your surgery went well, but it's good to hear from you "in person"  :)

Sounds like you're moving in the right direction and on the road to recovery.

Keep up the good work,

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

Brendalu

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Re: It is over & PattyCake is still here
« Reply #4 on: March 22, 2008, 05:26:56 am »
Pattycake,
You sound great, no matter what your surgery was for.  Keep up the great recovery and let us know how it is going.  We are still her for support and I don't think anyone is going to give you the "boot"!
Hugs,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Jim Scott

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Re: It is over & PattyCake is still here
« Reply #5 on: March 26, 2008, 02:58:40 pm »
Hi, Pattycake:

I was very pleased to read that your surgery went beautifully and you're doing so well.  Mass General is a great hospital and you certainly had a top-notch surgical team.  The House Clinic may be more famous but it isn't the only place in America with superior surgeons and excellent care.  Thanks for coming back to share your positive story.  Meningioma or Acoustic Neuroma, you're definitely 'one of us' and always welcome here because we really do understand.  :)

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.