ANA Discussion Forum
Archive => Archives => Topic started by: Karla83401 on April 10, 2006, 09:07:43 pm
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Hi Everyone,
Well, I made it thru the pre trial litigation on my husband's death today. Talk about emotionally exhausted. I am in the market for an expert on myocarditis if anyone knows of one.
But on a bright side I heard from Dr. Brackman from the House today. He is e-mailing me info tomorrow and we are looking at scheduling the surgery for early to mid May. He thinks that we may be able to save some of the hearing in the affected ear but as fast as it is growing the sooner the better. I was so impressed after talking to him and feel so much more peace about facing all of this. My sister will be flying down from Alaska to be with me. My adult children are to emotional about me, especially after lossing their Dad, so I felt that my sister would be the best.
If there is anything that anyone can think of that I might need to know please chime in. I don't get on here are often as I would like but please know that each of you have become like rocks for me and true friends.
Karla
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Karla I say yes your sister def. needs to come down! Are your kids comfortable with her? If someone is closer than she is get them involved too! I took my son for pre surgery counselling. I also met with a trusted faculty member from his school to have support in place there in case any was needed.
Glad the pretrial stuff is over. Phyl has so many medical connections maybe she know someone! I know there is a guy here who is considered tops in a specific type of surgery relating to the heart as a friend of mine had surgery with him and came out here from oklahoma for it.
Revisit Kate's list on what you need after surgery....I did mine by trial and error and upon reading the list it was right on the money.
Keep us posted as you know we'll be praying for you, waving the magic batty wand, dancing in the streets.whatever it takes to get you through this in top notch shape!
Stay strong, I know you can do it!
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Karla,
Glad to hear you had a pretty good day. If it's an expert for trial, the only person I know is a former Spanish exchange student who's a cardiac surgeon, so I'm not thinking he'd count as an expert here. He did a 2 year study at UCLA though, but I'm sure there's lots of great heart experts around.
Did Dr. Brackman talk about approaches yet? Do you know which you will have??? I'm sure you feel relieved to know you will be in some of the best hands for this.
Other than Phyl's new glimmer of information about prune juice, I'm still looking for things to know too as I will soon follow you. Keep an eye on the phone thread for Friday, would love for you to join us!
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Hi Karla,
I do know a thorastic surgeon in NYC... my dad's SO's son in law! Let me get his last name for you. Dr. Nick ? Not sure where you are located but I hear Nick is top of the line. Let me see what I can find out for you. :)
Thrilled to hear Dr. Brackmann got you squared away and you are going to be on the road to good health very soon! We're here for you and cheering you on! I have learned this past week that the folks of this site are overwhelming amazing and we've got our cheerleader outfits and pom-poms already for you! :)
Hang in there... my mom's classic line... "this, too, shall pass!"
xo
Phyl
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You two do realize that if your scheduled at the same time with Brackman us wenches might have to take a trip west! Think the House could handle wench partrol? ;D
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I'm due for a trip west (especially San Jose/San Fran area) but S. CA works too... hmmmmmmmm....
Karla, will speak to my dad later today.. will get Nick's info for you. I know he's cardio-thorasic and need to get his last name... will advise.
Phyl
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Thinking about you Karla and saying a special prayer for you. Wish we lived closer so we could help you out.ÂÂ
matti
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Hi,
You guys are so wonderful!! Just getting the time to read your posts and now I am sitting here crying because I am so grateful to have all of you here. Finding you through this web site has been such a blessing in my life. It would be a blast to have you join me in this experience however do you think the LA area and the House are ready for such a wild bunch?
Thank you so much for checking into experts in the myocarditis field. It is overwhelming to be facing such a huge powerful organization as a teaching hospital by myself.
I am so relieved to be headed to the House and I feel at peace with being in their hands. Dr. Brackman sent me some info today for me to review about the different procedures. We have decided to wait until I get there to decide exactly which one to use. He is hoping to save my hearing in that ear so he wants to do some tests when I arrive. I should have the exact days by the end of this week and will let you know.
I have to head to a "Race, Class and Gender" class, Sociology 205 so I will close for now and check back later.
Thank you again for bring a sense of renewed hope to my heart!
Karla
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Ohh sounds like an interesting class. I did one on cultural diversity that was fun and educational.
You know as the saying goes..."we've got your back" You know we're all here for you!
Hang in there!
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Karla, tickled you are at peace.. that, truly, is all that matters! :) So many of us here at peace with our treatment decisions and regardless of who does what treatment, we do rally for each other! Know that even if I can't be in S. CA to cheer you on, I'm certainly here otherwise! :)
Will speak to Dad (as our fearless Capt'nDeb calls him, PapaPearl) later tonight... if not tonight, he'll be here tomorrow night for dinner (again!).... will get the info you need. Hoping Dr. Nick is someone who can help guide you.
Phyl
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Thank you so much for your efforts Phyl !! It amazes me how active you are so shortly after treatment. You have been in my thoughts and prayers.
I am really pleased to be working with the House and am so relieved to have made a final decision. I think that once I decided to go this way and put things in the hands of the Dr. Brackman, it was a huge relief. Now I am at the stage of simply just wanting to get on with it so that I can start the recovery process. The ringing in my left ear has gotten quite abit louder the past couple of days, my head feels really full and the "pinching" in the ear canal seems to be more steady along with a harder time hearing so I am kind of nervous that "tommy the tumor" has grown. I know that they said that it has grown about 5 to 6 times faster than normal so who knows, but I am not having any of the signs that would suggest that it is pressing my my brain stem. I also am not having any facial numbness, just a weird feeling in my throat when I swallow on the left side.
I have high hopes and am even signing up for a full load at college this fall. I am planning on setting up some review material from the classes that I have found the most fun to work on after surgery. I am hoping that this will stimulate the old brain.
I have been blessed with some really interesting and thought provoking classes this last semester and I hate to see it end. My Race, Class and Gender class has been very enjoyable and makes you rethink alot of everyday things in your life. I am hoping that my classes next semester will be as interesting.
A quick question for those that have already had treatment. How long is the normal period of time for not driving? I live about 15 miles for the nearest store or any other service so I am just wondering.
I will check back later,
Karla
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Karla--Can you Imagine the Wench Patrol hiting Seton Hall!! It was bad enuff when MJ (another sailor) and I were there together! You are placing yourself in the best hands in the world for this surgery.
About driving--I didn't drive for 5 months, but I had the advantage of having a someone do the driving. I probably could have driven if I absolutely had to in at about 10 weeks. Can you get a friend to get your groceries?
If you and Gennysmom could schedule your surgeries together--the wench patrol thing would be incredible! However I think she's thinking of August.
Keep in touch--hope you can do the Fri nite "date."
Captain Deb 8)
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Seton hall will never be the same!! I'm gonna be there for a 1 year/AN and BAHA check sometime Oct/Nov ..
Don't wreck the place yet!
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Can you imagine group surgeries? That would be stinkin' hysterical, a bunch of us crazy wenches banging around the walls and falling over. Karla, at least at house you should have like patients around you, I'm not expecting that at all. You guys will just have to wait till Karla and I are back up and functioning enough to travel, then we need to get back talking about that Vegas trip. I think we will all need to blow off some steam together!!!!
I wish I had the motivation to go back to school, but I keep filling in my extra time with volunteering. Good luck to all of you that are going that route!!!
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Hi Karla,
sorry for the delay but PapaPearl came through! :)
Dr. Nicolas Morrissey - vascular surgeon, NYC
Here's a link for him that I found.
http://www.nypvascularcare.org/abo_us_nmorrissey.html
hoping it helps! :)
Hang in there... just like me and the rest of the gang, we're all hanging tough! :)
xo
Phyl
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Hi Karla,
Wishing you the best through your difficult time but you are in great wench hands with this lot.
Just a question - what type of surgery are you having? I had middle fossa and pre surgery, found it really hard to hear on the phone but still could. Could also hear normal conversation (albeit hard). Post surgery, can't har on the phone and can hear conversations a little if people yell. yes, in theory they retained my hearing but it's not very useful.
Question you can ask is - if they are doing middle fossa or retris... will they take all the growth out or will some be left behind?. This is a key question that i didn't ask and after syurgery, I was told "we got it all out". 3 yeatrs later, it grew back and the ENT surgeon said -"we did leave the casing there". Well, I could have flattened him in his office. I restrained myself but I was rather annoyed when i was lied to.
It is hard over the phone but I would ask the Dr when he says, they are hopeful of retaining some hearing - get them to clarify what that means - will i hear conversation? will I hear on the phone? and will they take it ALL out.
Don't want to create concerns for you but best to ask now.
Larry
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Karla I didn't drive from August until December. The hospital gave me a driving test to make sure I was safe due to the problems I was having. I had trouble turning my head from left to right without the world spinning on it's axis. I still have it to some degree just not as bad.
Keeping you in my prayers that you'll be just fine!
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Sorry I have been gone for so long again... these darn headaches and earaches are kicking my behind. It is a struggle to keep up with school, kids, animals and trying to find the floor in my house.
I should be hearing from the House today and am prepared with a list of questions. I will not know for sure what exact procedure they will be doing until I get down there and we test my hearing one more time.
Larry, thank you so much for the questions about the hearing issue post treatment. I would have never thought of that aspect. I also did not think about them leaving any of the tumor behind. I will be asking those very questions.
I do have people who will drive to get my groceries buut it is school that I was worried about this fall. It is about 15 miles from my house also. Perhaps I will need to look into medical transportation to get me back and forth. I refuse, thus far, to give up on going back full time this fall. But I will adjust if I need to.
Pearl, thank you so much for Dr. Nick's info. I will be doing some research on that issue this week-end and really appreciate your efforts.
If I have missed thanking anyone or acknowledging a question, please forgive me....it is that darn Tommy the Tumor giving me grief again.
Hugs to all,
Karla
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Pearl, thank you so much for Dr. Nick's info. I will be doing some research on that issue this week-end and really appreciate your efforts.
Karla, if it's a small way that I can help, then works for me! :) Sounds like you are prepared, well informed and hoping your conversation with House brings you the answers you seek.
Sending you hugs and best wishes!
Phyllis