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Author Topic: MGH and MEEI  (Read 29993 times)

SML

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Re: MGH and MEEI
« Reply #15 on: March 03, 2009, 12:58:17 pm »
Hi Nancy,

I haven’t received anything from Millie yet.  When I talked to her last Thursday she said she would be mailing it out. As far as I know, pre-op is still set for March 9th.  I’ll be stopping by the post office to see if it’s there today.

In an earlier post I said I was having the translab surgery. I think I got my surgery types mixed up. Dr. Barker described the cut as looking like a question mark. That is retrosigmoid right? I can’t recall him saying the name of it, but that day I was in a bit of a fog! I’ve just been trying to put all the pieces together from reading on this site.
Thank god this forum is here!

Do you have days when you can’t wait to get it over with and days when you dread it coming? I’m having a “dread its coming� day! :-[

I wish all the best for you and hope all your delays are over.

Scarlett
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

NancyMc

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Re: MGH and MEEI
« Reply #16 on: March 04, 2009, 08:10:04 am »
Scarlett,
I suppose dread dominates my thinking, but of course, as soon as my surgery was cancelled, I was all about getting it over with.  ::)
I am a total control freak (you can read my rant in a previous thread and all the comfort the forumites poured on my wounds), and the change of date ruined my plans to visit my son in Scotland for his 21st birthday, so that was my major focus.  Like most, I know my life will be impacted by the surgery short term in some degree that is likely to prevent long term impact of a greater degree.  Therefore, I must proceed.  But I often wonder if perhaps the tumor never would cause any problems other than the loss of hearing, tinnitus, and balance compensation that I experience now.
It sounds as though translab is the approach Dr. Barker is describing.  Do you have any hearing?  My test showed that none was left, therefore, translab would be the preferred approach to save facial function.
Do you live near the hospital or at some distance?  I have a two-hour drive and require housing arrangements for my friend, further complicating scheduling.
I hope all goes well with your surgery.  Please share your experiences going forward.
Millie sure adds to the stress level, doesn't she?
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

SML

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Re: MGH and MEEI
« Reply #17 on: March 05, 2009, 12:37:41 am »
Nancy,

I called Millie Tuesday to ask if she mailed my papers yet. She said she had them in her hand and was going to get them right out!
Maybe this is just a test for patience.  ??? From what I read, that is a major requirement in recovery!

At the time of diagnosis (Nov.12th), I had 80 % hearing left. I know I don’t have that now. I can’t hear much out of it at all.  I live about an hour and a half from MGH. My husband plans on driving in and out every day. I hope we are done with the snow by then!

I will keep you posted and I hope you do the same.

Scarlett
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

sgerrard

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Re: MGH and MEEI
« Reply #18 on: March 05, 2009, 01:05:16 am »
Hi Scarlett,

If the date is confirmed, you should put it on the AN Calendar, so we can wish you well. See the link in my signature line below. Same goes for Nancy as well.

You both seem to like Millie!  ;)

Steve
« Last Edit: March 05, 2009, 01:42:34 am by sgerrard »
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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.

NancyMc

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Re: MGH and MEEI
« Reply #19 on: March 05, 2009, 12:34:20 pm »
Steve,
Personally I would hate to jinx my latest surgery date by carving it in stone.  Jim had to deface the calendar when I was bumped.  I couldn't muster the courage to do it.  I was crushed.  Millie . . . well . . .  It must be a volunteer position.

Scarlett,
I have the huge advantage of a rehearsal through you.  Please let me know if you ever receive the package  ;) and what it contains.  Are we supposed to get the Rxs for eye gel, etc like other patients have reported?  I'm really not a last minute sort . . . patience of a 2-year old.  I live in the boonies with few retail outlets close at hand and a health insurance policy that requires I drive 2 hours for health services.  We'll have snow until May again this year, but I'm feeling pretty good about the Boston weather by April.  Enjoy this weekend's warm-up.
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

krbonner

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Re: MGH and MEEI
« Reply #20 on: March 05, 2009, 03:07:22 pm »
Nancy,

Any prescriptions I needed were given to me before being discharged from the hospital.  But I didn't get any before the actual surgery.

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

SML

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Re: MGH and MEEI
« Reply #21 on: March 06, 2009, 12:02:34 am »
Nancy,
Here it is Thursday night/Friday morning and still nothing from Millie. I’ll wait till I stop by the post office (I have a P.O. Box) tomorrow and call her again if I have nothing. I believe it’s just a when and where I should report paper. No eating after midnight etc.. etc.. etc…
I'll let you know.

Millie is pleasant enough, but I think a bit (a lot) overwhelmed at times. I think they need to hire more office help. ;)

I will add my name to the list, thanks Steve. Surgery is set for March 18th barring any complications.

Scarlett
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

NancyMc

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Re: MGH and MEEI
« Reply #22 on: March 06, 2009, 01:53:17 pm »
Complications?  What's that?

I think my papers were going to relate to the pre-op schedule for MRI, chest xray and bloodwork.  Do you know when to be where next Thursday?

Thanks for the info, Katie.

Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

SML

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Re: MGH and MEEI
« Reply #23 on: March 08, 2009, 01:29:13 pm »
Hi,

That pre-op package that Millie said was in her hand and was on the way to mail to me on Tuesday never came. I called her again Friday, and was informed that my pre-op tests have been postponed until 3/16/09. I lost it, and read her the riot act! She was all apologies, and said she’d make it up to me.

This is the 2nd time they postpone pre-op and waited for me to call them, they never called me to tell me when my surgery date was either, I had to call them, she forgot! I am the one who has been doing all the calling!

Millie finally e-mailed the instructions to me late Friday afternoon.
It’s pretty basic:
1.   7:00 a.m., report to the Pre-Admission Testing Area in the Jackson Bldg. for a urinalysis.
2.   9:30 a.m., MEEI for a Hearing Test.
3.   then the Yawkey Bldg. for a Chest X-Ray.
4.   and finally to sign the consent forms with Dr. Barker, still in the Yawkey Bldg.
5.   Surgery scheduled for 3/18/09 at 6:00 a.m., Wang Bldg., no eating or drinking after midnight the day before.

I’ve have had surgery once before, and they were all over me. Read this information, go give blood on this day, stop taking aspirin, load up vitamin C, etc… I felt they cared.

This time, no one calls, no one seems to be one top of anything, and no one seems to care!

I know I have the right surgical team, but the lack of correspondence, and their nonchalant attitude has me feeling very uneasy. 

With this life altering surgery only a week and a half away I’m wondering,  Is this normal  ???

Scarlett
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

krbonner

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Re: MGH and MEEI
« Reply #24 on: March 08, 2009, 02:01:03 pm »
In the pre-admission testing, that's when I met with a nurse to go over my history and get all the information about prepping for surgery.  That's also where they did an echocardiogram and a couple other routine tests.

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

NancyMc

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Re: MGH and MEEI
« Reply #25 on: March 08, 2009, 02:56:03 pm »
OMG!  Well, that's the same experience I've been having.  Did you read my thread when I was cancelled?  Lori's drop everything and drive by for brain surgery comment hit the target!  Really, with all the highly skilled people out of work out there, she could be replaced.  If I treated my clients as an architect in that manner, I would have been fired!
Thank you for losing it with Millie.  That may help my situation . . . unless she thrives on being lambasted.  Don't you have to have another MRI pre-op?  I guess mine was so long ago in October that he wants a newer version and in his tube not the wide body that I like up here.  I wasn't planning on being there at 7:30 for testing, but I suppose it's possible if we get up at 4!
Ai!
Thanks for filling me in Scarlett.
Keep me posted.
So, is she still going to mail that package that's been in her hand for five days?
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

SML

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Re: MGH and MEEI
« Reply #26 on: March 10, 2009, 11:11:40 pm »
Hi Nancy,

How close to your surgery date were you when they cancled? I’m thinking I will not call the office between now and then so that they can’t cancel on me! ;D

Don’t know if I will get anything else in the mail or not. I chose the 7 am time. I’m sure you will be able to choose a time that works better for you.

Thanks Katie,
I need to relax a little about this huh? I had a friend come talk to me this weekend about how different the big hospitals are compared to the local ones. She is an ICU nurse at Brigham and Woman’s. She also told me I’m in good hands. I guess I need to hear that often, as time gets closer! :-\

Scarlett
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

NancyMc

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Re: MGH and MEEI
« Reply #27 on: March 11, 2009, 06:16:46 am »
Hi, Scarlett.
It was about ten days.  Here's the thread.  http://anausa.org/forum/index.php?topic=8765.0
I think you have a plan there!
I was considering calling Millie to beg her not to change my date again.
Unfortunately, I watched the Oprah regarding hospital mistakes yesterday.  Don't watch it, but the bottom line is to be in a hospital like MGH where they are likely to have all the belts and suspenders necessary, i.e., backup plans out the wahzoo.  But do be sure to mark yourself.  Dr. Barker said the patient makes the mark on the correct side.
I believe we are at one (two) of the best facilities available.
I'm right behind you.
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

krbonner

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Re: MGH and MEEI
« Reply #28 on: March 11, 2009, 06:27:24 am »
Quote from: Nancy McDonald on March 11, 2009, 06:16:46 am
But do be sure to mark yourself.  Dr. Barker said the patient makes the mark on the correct side.

In the pre-op area, the morning of surgery, the nurse asked me about 47 times which side was being cut open!  LOL!  And I had to sign several pieces of paper saying I agreed that it was the correct side.  And then the nurse wrote "YES" behind my ear with a Sharpie and I had to sign a paper saying she wrote on the correct side!

Regardless of all the drama that's going on now, that surgical wing at MGH is a well run, well oiled machine.  I remember being wheeled from pre-op to the operating room through hallway after hallway after hallway of operating rooms.  It was truly amazing.

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

EJTampa

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Re: MGH and MEEI
« Reply #29 on: March 11, 2009, 08:58:13 am »
During my Pre-op on operation day, they came around with their little sharpies and said lets see...nope, you don't need marking.  I said "Mark me!".  That's all I would have needed...wake up with the wrong side operated on.
 
I let her mark it, but I was fully aware that she was marking the right ear.
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.
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