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Author Topic: MGH and MEEI  (Read 28509 times)

SML

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Re: MGH and MEEI
« Reply #45 on: April 15, 2009, 10:54:41 am »
Joe,
Did you really remember being woken up in the OR like that? They told me before going in that they would be waking me up in the OR when they take the tube out. I said “oh no your not�! All they said was that they have to! I told them I had better not remember it then! I don’t remember it, thank god!!!
I guess as with anything, we can expect (although hospitals should have higher standards) the good and the bad. I was lucky enough to have all good nurses during my stay. I remember once after being moved from ICU, I did have to call during the night because the catheter didn’t feel right. They came right away and readjusted it saying sometimes it gets tangled, but did empty it while she was there.

I found my pain was worse while on the morphine. When they switched me to Percocet and Valium, it was better. I find myself still taking ½ pills of the percocet to help with the nightly headaches I’m getting. I’m hoping the headaches will diminish with a little more time. I hope, I hope, I hope!

I didn’t see your name on the list, but maybe I missed it, will we be seeing you at Maxwell’s?

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.

Joe Meehan

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Re: MGH and MEEI
« Reply #46 on: April 15, 2009, 09:20:35 pm »
Hi Scarlett, No one believed I remembered a thing. I told Barker I remembered him waking me up in the OR and repeated what he said to me. He said it thinking I'd never remember it I'm sure. I was told I'd remember nothing. I only stayed awake for about a minute and then it was off to lala land until I woke in ICU. I remembered it because it made such an impression. He was saying you have extensive palsy. I could see he was upset. He had a look of disbelief in his face. I was so out of it it didn't register until later. I remember looking around being amazed at just how many people were in the room all looking at me.....lol. I said to myself who are you people and why are you all staring at me.

Then I woke up in the ICU w/a very attentive pretty blond nurse who took great care of me. I humiliated myself several times by accidently hiking up my Johnny....LOL I'm a lot of things but not a flasher. I'm sure they've seen it all. I'm also sure it was the last thing she wanted to see. I hate those johnnies. I was scared to death one of my sisters would have to suffer that indignity. They didn't and I blame it on the Morphine and all the tubes sticking out of me. The Morphiine was awesome it made me very comfortable. I only had to ask for more once w/nurse Ratchet  >:(. There wasn't enough morphine that night in the hospital to suit me.

What where and when is the gathering at Maxwell's? I attended the meeting last summer in Waltham and met my surgeon Dr Gopen who recommended Barker. That trip made a huge difference.  I'd love to go if I can make it.

Barker wanted me to go see Gopen after my surgery. I did and he answered a lot of my questions. I didn't choose Barker for his bedside manner ; ) Gopen was young enthusiastic and answered every question I had thoroughly. I'm glad I went but it wasn't mandatory.
Logged
Retromastoid Mass Gen 7/30/08 Drs. Barker & Gopen
2.5 x 3.4 12hrs completely removed. 100% facial palsy but facial nerve intact.
75% return of movement as of 8th month, removed eye ingot 3/09 good progress.
Deaf R side, tinnitus, balance problems, muscle spasms, muscle tension headaches daily.

NancyMc

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Re: MGH and MEEI
« Reply #47 on: April 16, 2009, 03:05:45 am »
Joe,
What a horror story!  I couldn't respond at first.  That nurse should be fired.  Do they even request evaluations?  I did have a letter soliciting for the annual fund appeal when I returned home from MGH.  There were good or at least adequate nurses around, but they were inattentive to patients in a neuro ward if you ask me.  I'm sorry you had to hear and remember Barker's comments.  I'm going to request my surgical report on Monday to learn what actually happened in there.  I guess I got lucky in the OR, less lucky on the floor, but nothing unpleasant. 

Ask phyl if you can have the bloke's spot for brunch.  He has to work.  Go to the Maxwell's brunch thread and PM her.  Hope to see you there!

Scarlett,
Do we have a follow-up MRI at six weeks?  I'm just worried I won't get all the info necessary to plan the trip down and have last minute surprises requiring chauffeuring another 4 and a half hour roundtrip life-threatening drive plus parking.

aka 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 #48 on: April 16, 2009, 07:20:22 am »
Joe, here is the thread for the brunch at Maxwell’s in Worcester Ma this Sunday 4-19-09.

http://anausa.org/forum/index.php?topic=8592.90

PM  Phyl  (ppearl214) and see if she can fit you in. There is a link for Maxwell’s somewhere in there for directions. It would be great to see you there.

Nancy, as far as I know the 6 week check up is just to see Dr. Barker. I wasn’t told I’m going for an MRI. That’s a good idea about getting our OR reports. Who do we ask? Millie?

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 #49 on: April 16, 2009, 08:41:59 am »
Quote
Who do we ask? Millie?
 

 ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D

Surely, you jest!  No, Helen.  Did a nurse just take out your stitches and tell you that you're good to wash and drive and etc?  Or did you see Lee or his fellow?
Logged
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

Joe Meehan

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Re: MGH and MEEI
« Reply #50 on: April 16, 2009, 09:35:47 am »
She said a few very inappropriate things. I forget most of them. But she said them so sweetly. I chalked it up to..... this woman is clueless. Everyone else couldn't have been better. The staff on that floor was outstanding. I'm a fairly laid back guy. I went into the operation w/o any fear. I was joking in the pre op area w/all the nurses. If I hadn't been in such an agitated state that night I think I wouldn't have given nurse Ratchet a second thought. In fairness to her she may have had her hands full that night and agitated herself. I think they may short staff the floor at night, dunno? I saw Dr Barker the next day and he explained the nerve was intact and in time it would come back. I stopped worrying from that point forward. All I needed was info. Anyway I did make it thru. Now I can focus on my pain, balance and eye issues.....yippy

You have to call Millie for OR report. I believe I only had to ask her once for that! Poor Millie, I'm going to buy her a Franklin Planner for xmas.

I posted Phyl I'll PM her as well. I think I can make it. My sister lives right down the street I can visit her as well or bring her along if it’s possible.
Logged
Retromastoid Mass Gen 7/30/08 Drs. Barker & Gopen
2.5 x 3.4 12hrs completely removed. 100% facial palsy but facial nerve intact.
75% return of movement as of 8th month, removed eye ingot 3/09 good progress.
Deaf R side, tinnitus, balance problems, muscle spasms, muscle tension headaches daily.

SML

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Re: MGH and MEEI
« Reply #51 on: April 16, 2009, 10:22:41 am »
Quote from: NancyMc on April 16, 2009, 08:41:59 am
Quote
Who do we ask? Millie?
 

 ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D

Surely, you jest!  No, Helen.  Did a nurse just take out your stitches and tell you that you're good to wash and drive and etc?  Or did you see Lee or his fellow?
Nancy (no more FatHead?),

I thought that might make you laugh!!! ;D

I saw Heather Whitley to take my stitches out. She is just coming on board with Dr. Barker’s office. She was just getting set up the day I went in, so there was a bit of confusion as far as which room to go to.
 
She told me I could wash my hair the day after stitches are taken out. As far as driving goes, no one has told me I could or couldn’t (except for no driving while on the prescription meds of course). I have been doing little drives to the grocery store and back. Hasn’t been a big deal except at intersections. I take much longer now making my move out into traffic. The looking left to right still gets me, so I do it nice and slow. I may be aggravating people behind me, but… oh well!

Joe,
Glad you going to Maxwell’s. See you there!

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 #52 on: April 16, 2009, 01:02:04 pm »
Heather is the one I've been in touch with since home about post-op questions.  She is the most reliable, knowledgeable person I've been in contact with during this adventure.  But I'm going to McKenna for stitch removal, so not sure who I'll get.  No problem.

Can you believe we had brain surgery?

What's new on the job front?  You've been mighty quiet, and I don't want you going back to that place.   There must be new green jobs out there for which you would be perfect.

NancyMc (I got yelled at.)
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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 #53 on: April 16, 2009, 03:38:10 pm »
Hi Nancy (I must have missed you getting yelled at),

I might be calling Heather tomorrow myself if my (AN) earache doesn’t go away by then. I’ve still been getting severe headaches at night too, but they dissipate within ½ hr or so.

I have contacted my personnel dept and asked if they can “find� another position for me till I’m able to go back to my regular job. They have been very nice to me and if it’s possible I’m sure they will help me out. I know at this point I am not ready to do my QA job. Hopefully Dr. Barker will agree and give me the documents needed to extend my short-term disability. I will also ask him on the 27th if I can go through the PT evaluation to see where I stand. Maybe with documentation listing my limitations (hearing, balance, “wonkyheadedness�), they will be able to find a position more suitable for me in the meantime.

Scarlett

P.S. sometimes I can’t believe we had brain surgery, but all I need to do is touch my head or lay on that side and it feels like just yesterday.
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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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  • One year and all is well, almost.
Re: MGH and MEEI
« Reply #54 on: April 16, 2009, 05:25:36 pm »
Great news on the job.  I'm glad they are sympathetic to your situation.

I do notice the numbness around my ear, but I'm functioning almost totally.   I am a little worried about my different facial appearance, but I rarely see anyone, so it doesn't bother me too much yet.  I'll be seeing all my old acquaintances soon, so that should be interesting.

I have no pain, and it makes me wonder why.  Just lucky, I guess.  But I do have the facial asymmetry, eye issues, same SSD and tinnitus as before, and a sense of leaning to my good side when seated that is new.  I have this amazing feeling of being given a new lease on life as they say.  I didn't believe that I would lose mine, just thought that if it did happen, I had had a good one.

I am very happy with my results, almost enough to wish I had done it sooner when the tumor was much smaller and easier to deal with perhaps.  But then my children would have been less independent.  

This was good.

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

NancyMc

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  • One year and all is well, almost.
Re: MGH and MEEI
« Reply #55 on: April 21, 2009, 07:57:40 am »
So, Mili just called to tell me I have an MRI on Monday morning at 8:30.  I don't need an MRI for a year!
Logged
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 #56 on: April 21, 2009, 10:45:35 am »
What is with this girl? Did you talk to her directly? Did the Dr’s say they wanted one Monday? Dr. Barker told me one MRI every year for the rest of my life!!!  :-\
How did the stitch removal go? I bet your feeling so much better being able to wash your hair today. I know I couldn’t wait!

Don’t know what going on with me, but I had a continuous headache for the past three days. :( Nothing is working to take it away! Yesterday it was on the right side of my face and today it’s kind of an all over deal. I was hoping this surgery might take some headaches away, not give me more! Ah well, I guess it’s still early in the game.

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.

Joe Meehan

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Re: MGH and MEEI
« Reply #57 on: April 21, 2009, 11:20:16 am »
Hello,

Nice seeing you both Sunday. I'm so glad I went. I had a follow up MRI in six weeks. They just wanted to see if everything was healing up okay.

Scarlett I hope your headaches go away. They should as time passes.....unless you're me of course. I have gel packs that I wrap around the back of my head/neck it takes the pain away most of the time. Some respond to heat that doesn't work for me it as to be iced. My new pain medication of choice is Excedrin Migraine with Acetaminophen 250mg, Aspirin 250mg, and caffeine 65mg. I love the stuff I take it at night and it doesn't keep me awake although I am taking two 1/4 tabs of Diazepam and Cyclobenzaprine muscle relaxants that may counter the caffeine. Are you having any muscle spasms?

Since Dr Feel Good put me on Lyrica I haven't had a any train wrecks. Not sure if its working yet but I do feel better. I'll keep you posted. It is for inflamation of the nerves. He loves the stuff. We shall see.

Nancy you looked great. Don't worry your face will come back to life. Mine looked like that for months. I wore it proudly. You're one tough cookie.

Ps Molly sent me those Red Sox tickets!! My son will be away that night  :( but I'll take my friend or my brother both are rabid fans like me.
Logged
Retromastoid Mass Gen 7/30/08 Drs. Barker & Gopen
2.5 x 3.4 12hrs completely removed. 100% facial palsy but facial nerve intact.
75% return of movement as of 8th month, removed eye ingot 3/09 good progress.
Deaf R side, tinnitus, balance problems, muscle spasms, muscle tension headaches daily.

NancyMc

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  • One year and all is well, almost.
Re: MGH and MEEI
« Reply #58 on: April 21, 2009, 11:28:55 am »
Oh, poor Scarlett.  I'm so sorry.  I was just wondering where you were.  And for you, too, Joe.  I guess I should be more thankful about my pain free life, well, except when I look in the mirror.

I posted about my stitch removal on spa day thread.

Mili called me.  Took me totally by surprise.  That woman upsets you coming and going!  Maybe she actually plans to do that!
I asked McKenna specifically about MRI follow-up, and he said one year, etc.  (See thread.)
Logged
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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  • Posts: 204
  • If wishes were like horses, we would ride.
Re: MGH and MEEI
« Reply #59 on: April 21, 2009, 11:56:16 am »
Hi Joe,
It was wonderful to meet you too! I had such a great time.
I’m glad you’re getting some relief with the new meds your taking. Please do keep us posted with your progress. I was at the store and had the Excedrin migraine in my hand, but didn’t buy it. I thought the meds I had just taken would kick in at any minute. I had the icepack going yesterday to no avail. Maybe I’ll pick up the Excedrin next time I’m at the store.

Nancy, I’m off to your thread to read all about your stitch removal.

Scarlett
Logged
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.
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