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Update...post angio (Read 2442 times)
nopi98
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Update...post angio
Sep 15th, 2008 at 1:16pm
 
Well the last time I posted I said that my angio/arteriogram were coming soon.  Well I am back with so/so to bad news.  First the so/so news....it looks as though my arteries are of average size...so it will be up to Dr. Barrow if I'm a good candidate for the bypass surgery.  But now for the bad news.  They also found an aneurysm.  A small one, but one none the less.  Its been my experience that aneurysms no matter the size are bad.  But I'm told that it is an underlying effect of the MMD.  And that after the bypass is performed (God willing) it will alleviate itself. 

I have to say...that my experience at Emory was poor...to put it lightly.  I've been told and have read from many sources how nice everyone is and how helpful everyone can be.  Short and sweet....I didnt experience that at all.  But I'm not going to complain about spilled milk.  If I can get the help I need there...then they can be as rude and unorganized as needed. 

Anyway...I have a question:  Has anyone who has had the surgery had the experience of the actual MM veins alleviating themselves?  That was something else I was told.  Some patients experience that...some dont.  I just want to know if any of you have been fortunate enough for that to happen. 

My family and I need your prayers now...more than ever.  I find myself at a loss for what to do.  But I know prayer is always something I can do.  I'm looking for my miracle that alot of you have already been blessed with.  TO be honest...I'm not scared to die...I know where I'm going.  I'm just scared to leave my family behind.  I'm scared to not be there for my wife and kids.  I love them more than I can ever explain.  More than there are words to describe it. 

Thank you all for your continued support.  I am at the beginning of this road right now...but with God's grace maybe I can look back on this 30-40 years from now and think how silly I was for worrying the way I did.

God Bless.
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russan1959
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Re: Update...post angio
Reply #1 - Sep 16th, 2008 at 3:50pm
 
My post op angio showed a reduction in the "puff of smoke" effect on the films. This indicates a reduction in the MM vessels. Its been 8 years since my strokes and surgery. I had / have nearly full function pre- and post-op.  I hope all goes well with you.


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EmilysMom
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Re: Update...post angio
Reply #2 - Sep 17th, 2008 at 11:28am
 
My six year old daughter had her surgery two years ago. On her one year post op angio it showed that her left corotid artery has now opened up almost completely.
However, she unfortunately also developed an aneurysm also because of the pressure she had on her corotid artery. Her surgeon in NYC and her surgeon here in Charlotte, NC has guaranteed me that she will need more brain surgery in her childhood because of the aneurysm. She is monitored closely and she will be operated on when the aneurysm grows to a certain size. I am thankful that I know this information because most people find out about having an aneurysm after it's too late. It is also, hard knowing and thinking about it on a daily basis that my little six year old sweet daughter has an aneurysm at such a young age and will need more brain surgery.
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nopi98
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Re: Update...post angio
Reply #3 - Sep 17th, 2008 at 1:02pm
 
Russan...thank you for your reply.  It is definitely encouraging reading that.

Emilysmom...for the news you have gotten, I am truly sorry.  As you have read, I am dealing with a very similar situation, however I know that doesn't ease your particular situation.  Although amidst the bad news there was the good news...which can be viewed as no less than a blessing.  Please know that I will pray for you and your daughter. 

By all means...anyone else reading this, please respond as to your particular situations.  I would like to know if the surgery has been a benefit to you.  Or even if it hasn't.  I would just like some feedback.

Thank you again guys.

God Bless.
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Shan
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Re: Update...post angio
Reply #4 - Sep 17th, 2008 at 1:58pm
 
Hi Fred (nopi),

Sorry to hear about your experience at Emory.  unfortunately, we all are disappointed throughout our lives and especially when it comes at a time or situation like yours, it's even harder to handle.  I just read in another thread of a member who was complaining that it took Stanford 3 weeks to get back to her with their opinion on her situation.  For whatever the reasons may be that we experience these "bumps" in our path, it's more important than ever that we continue to seek His guidance and ask for patience and understanding... (I know that you are of great faith  Wink and already know this..)  We are all human...we are all entitled to our opinion...and at the same time, we are all not perfect.  ;Grin  

Continue to do what you're doing...if you feel it necessary, seek advice from MM experts of what they think about the aneurysm they recently found... You can also ask other MM specialists their thoughts about your concern of "MM veins alleviating themselves" after surgery.

I had an emergency double by-pass and EDAS on my right side in 2005, and thank God, I am doing fine.  ;Grin  They are monitoring my left side, but so far, I am unilatteral.  I truly believe that without my surgery, I would not be here today, or my chances of having experienced a severe stroke by now would've been extremely high.  That being my opinion.  I was experiencing TIA's at the time and was misdiagnosed/not-diagnosed.  I was put on blood thinners, but it wasn't helping.  I was told that my collateral veins were helping...but I believe that due to the TIA's I was experiencing, it evidently was not enough.  Embarrassed

I too have a family and understand you not wanting to leave them behind.  I also know that there is a place after this life that is more beautiful and peaceful than here..and just like you, I am scared to leave my family behind.  All I can say is...through your Faith, "lean not unto your own understanding.."  Deep down inside, you know that they will be blessed and well taken care of when that time comes.  However, more importantly, at this time, I believe you should stay focused and use your energy to take care of  yourself as you plan/prepare your medical treatment.  

Bottom line, if you are not satisfied with your current medical team, I would advise that you seek additional opinions from other MM experts, especially as an aneurysm now comes into play.  You have a choice.  It's your body..your life.  Second, stay on top of your situation as things could progress.  Third, I pray that you try not to worry, though I know it is not easy.  I've been there, done that.  Continue to let your Faith help you and your family through this.   Smiley

Know that we're all here for you and your family!  We will keep you and your family in our prayers.

Take care,
Shan
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« Last Edit: Sep 17th, 2008 at 3:11pm by Shan »  

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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