Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 What good news MB! More God's Blessings please! MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beth Sent: Wednesday, January 06, 2010 1:50 PM To: Breathe-Support Subject: In my brothers words Just got an email from my brother , 's Daddy: "Hello all is out and resting in the ICU as planned..Everything went very well !!! The initial report is the tumor is what we expected.She will be released tomorrow morning.Yea !!!!!" I couldn't have said it better myself! Yea!!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.127/2603 - Release Date: 01/05/10 23:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 YEA > > Just got an email from my brother , 's Daddy: > > " Hello all > > is out and resting in the ICU as planned.. > > Everything went very well !!! The initial report is the tumor is what we expected. > > She will be released tomorrow morning. > > Yea !!!!! " > > I couldn't have said it better myself! Yea!!!! > > > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 WONDERFUL Dyane > > > > Just got an email from my brother , 's Daddy: > > > > " Hello all > > > > is out and resting in the ICU as planned.. > > > > Everything went very well !!! The initial report is the tumor is what > we expected. > > > > She will be released tomorrow morning. > > > > Yea !!!!! " > > > > I couldn't have said it better myself! Yea!!!! > > > > > > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 MB, God is so GOOD. I am glad she came through as expected and will soon be home. I can only imagine. Take Care and get all the rest you can I am sure your body will be happy for a relaxed rest.. Love ya. Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Beth - Hallelujah! I am glad to hear the good news. Enjoy your family's celebration! Stefani > > What good news MB! More God's Blessings please! > > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > Don't fret about tomorrow, God is already there! > > > > From: Beth > Sent: Wednesday, January 06, 2010 1:50 PM > To: Breathe-Support > Subject: In my brothers words > > > > > Just got an email from my brother , 's Daddy: > > " Hello all > > is out and resting in the ICU as planned.. > > Everything went very well !!! The initial report is the tumor is what we expected. > > She will be released tomorrow morning. > > Yea !!!!! " > > I couldn't have said it better myself! Yea!!!! > > > > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > -------------------------------------------------------------------------------- > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.725 / Virus Database: 270.14.127/2603 - Release Date: 01/05/10 23:35:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Beth, Wonderful news!!! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Beth wrote: Just got an email from my brother , 's Daddy: "Hello all is out and resting in the ICU as planned.. Everything went very well !!! The initial report is the tumor is what we expected. She will be released tomorrow morning. Yea !!!!!" I couldn't have said it better myself! Yea!!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 glad she is doing well and going home tomorrow, that is wonderful news what kind of tumor did you expect? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: In my brothers wordsTo: Breathe-Support Date: Wednesday, January 6, 2010, 4:50 PM Just got an email from my brother , 's Daddy: "Hello all is out and resting in the ICU as planned..Everything went very well !!! The initial report is the tumor is what we expected.She will be released tomorrow morning.Yea !!!!!" I couldn't have said it better myself! Yea!!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 has a condition called Neurofibromatosis, specifically NF1. It is a complex disorder that affects many organ systems but specifically causes tumors on peripheral nerves. Most of these tumors are benign but some are or can become cancerous. The doctors have been watching this specific lesion on 's brain for several years. It has recently started to grow which was reason for concern. The preliminary results from the biopsy show that it is an NF tumor and not cancerous though confirmation of that will take a week or so. It will be treated regardless with chemotherapy and possibly radiation in order to shrink it so that it no longer threatens her abilty to control the right side of her body and her cognitive functions. If, God forbid, it does turn out to be cancer or it becomes cancerous at some future date, full surgical with all it's attendant risks will have to be done. That's something my brother and sister in law would like to be able to avoid as removing the tumor would almost definitely damage her brain. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wed, January 6, 2010 7:39:22 PMSubject: Re: In my brothers words glad she is doing well and going home tomorrow, that is wonderful news what kind of tumor did you expect? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: In my brothers wordsTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 6, 2010, 4:50 PM Just got an email from my brother , 's Daddy: "Hello all is out and resting in the ICU as planned..Everything went very well !!! The initial report is the tumor is what we expected.She will be released tomorrow morning.Yea !!!!!" I couldn't have said it better myself! Yea!!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Oh Queen Bee..I can hear your Sigh of Relief from way donw here! Fabulous news.... GIO >> Just got an email from my brother , 's Daddy:> > "Hello all> > is out and resting in the ICU as planned..> > Everything went very well !!! The initial report is the tumor is what we expected.> > She will be released tomorrow morning.> > Yea !!!!!"> > I couldn't have said it better myself! Yea!!!!> > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 I'm so glad the surgery went well. I will be praying for all of you. Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Wed, January 6, 2010 6:53:56 PMSubject: Re: In my brothers words has a condition called Neurofibromatosis, specifically NF1. It is a complex disorder that affects many organ systems but specifically causes tumors on peripheral nerves. Most of these tumors are benign but some are or can become cancerous. The doctors have been watching this specific lesion on 's brain for several years. It has recently started to grow which was reason for concern. The preliminary results from the biopsy show that it is an NF tumor and not cancerous though confirmation of that will take a week or so. It will be treated regardless with chemotherapy and possibly radiation in order to shrink it so that it no longer threatens her abilty to control the right side of her body and her cognitive functions. If, God forbid, it does turn out to be cancer or it becomes cancerous at some future date, full surgical with all it's attendant risks will have to be done. That's something my brother and sister in law would like to be able to avoid as removing the tumor would almost definitely damage her brain. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wed, January 6, 2010 7:39:22 PMSubject: Re: In my brothers words glad she is doing well and going home tomorrow, that is wonderful news what kind of tumor did you expect? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: In my brothers wordsTo: Breathe-Support@ yahoogroups.. comDate: Wednesday, January 6, 2010, 4:50 PM Just got an email from my brother , 's Daddy: "Hello all is out and resting in the ICU as planned..Everything went very well !!! The initial report is the tumor is what we expected.She will be released tomorrow morning.Yea !!!!!" I couldn't have said it better myself! Yea!!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Queen MBee, The brain is such an awesome, but scary part of our bodies to come to grips with...so complex...it's the constant waiting to figure out developments that can take a toll on everyone. Do you remember my niece, Casey with the AVM..she's just had the follow up investigations to see if the Radiation treatment she had over a year ago has worked to shrink her Brain Stem AVM. Sadly it hasn't worked at all. She now knows that she's living with a Time Bomb in her Brain. She has done remarkably well this year in her recovery, returned to her work with the Comuting Organisation IBM who have been wonderful in setting up special work for her. Her physical limittions with movement, speech & vision are serious but she is an incredibly independant young woman & fiesty as all get-out! She's met a young man, they've moved into their own flat & are planning to marry. He incidentally has major repeat heart surgery in front of him (congenital valve problems)...they are a brave young pair. Casey is determined to live her life to the fullest, damn the future & what it may or may not hold! Now is NOW...no time for regrets! They are both insoirational to us all! GIO > > > >From: Beth mbmurtha (AT) yahoo (DOT) com>> >Subject: In my brothers words> >To: Breathe-Support@ yahoogroups. com> >Date: Wednesday, January 6, 2010, 4:50 PM> >> >> >Â > >Just got an email from my brother , 's Daddy:> >> >"Hello all> >> > is out and resting in the ICU as planned..> >> >Everything went very well !!! The initial report is the tumor is what we expected.> >> >She will be released tomorrow morning.> >> >Yea !!!!!"> >Â > >I couldn't have said it better myself! Yea!!!!> >Â > >> >Â > > Beth> >Moderator> >Fibrotic NSIP 06/06 Dermatomyositis 11/08> >Â > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 , I was thinking about Casey and her avm. They are such nasties to cope with and I'm sorry that the treatment did not do as intended. I'm happy though to hear that she has carried on and is meeting all these challanges head on so to speak. What a wonderfully brave young woman she is! I hope she and her intended have many many happy years ahead. Thank you for all the kind words and thoughts you've sent this way. Hugs, Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wed, January 6, 2010 8:15:45 PMSubject: Re: In my brothers words Queen MBee, The brain is such an awesome, but scary part of our bodies to come to grips with...so complex...it' s the constant waiting to figure out developments that can take a toll on everyone. Do you remember my niece, Casey with the AVM..she's just had the follow up investigations to see if the Radiation treatment she had over a year ago has worked to shrink her Brain Stem AVM. Sadly it hasn't worked at all. She now knows that she's living with a Time Bomb in her Brain. She has done remarkably well this year in her recovery, returned to her work with the Comuting Organisation IBM who have been wonderful in setting up special work for her. Her physical limittions with movement, speech & vision are serious but she is an incredibly independant young woman & fiesty as all get-out! She's met a young man, they've moved into their own flat & are planning to marry. He incidentally has major repeat heart surgery in front of him (congenital valve problems)... they are a brave young pair. Casey is determined to live her life to the fullest, damn the future & what it may or may not hold! Now is NOW...no time for regrets! They are both insoirational to us all! GIO > > > >From: Beth mbmurtha (AT) yahoo (DOT) com>> >Subject: In my brothers words> >To: Breathe-Support@ yahoogroups. com> >Date: Wednesday, January 6, 2010, 4:50 PM> >> >> >Â > >Just got an email from my brother , 's Daddy:> >> >"Hello all> >> > is out and resting in the ICU as planned..> >> >Everything went very well !!! The initial report is the tumor is what we expected.> >> >She will be released tomorrow morning.> >> >Yea !!!!!"> >Â > >I couldn't have said it better myself! Yea!!!!> >Â > >> >Â > > Beth> >Moderator> >Fibrotic NSIP 06/06 Dermatomyositis 11/08> >Â > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Beth, will be on my list for as long as she needs to be. Prayer works. ..Some day when I have the energy I'll tell you all about my family's battle 15 years ago. I believe to this day that prayer is what has enabled my completely perfect older son Adam to be the man and daddy he is today. That very long and very painful story will have to wait.  Your needs the all positive vibes now as she recovers. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Beth wrote:  has a condition called Neurofibromatosis, specifically NF1. It is a complex disorder that affects many organ systems but specifically causes tumors on peripheral nerves. Most of these tumors are benign but some are or can become cancerous. The doctors have been watching this specific lesion on 's brain for several years. It has recently started to grow which was reason for concern. The preliminary results from the biopsy show that it is an NF tumor and not cancerous though confirmation of that will take a week or so. It will be treated regardless with chemotherapy and possibly radiation in order to shrink it so that it no longer threatens her abilty to control the right side of her body and her cognitive functions. If, God forbid, it does turn out to be cancer or it becomes cancerous at some future date, full surgical with all it's attendant risks will have to be done. That's something my brother and sister in law would like to be able to avoid as removing the tumor would almost definitely damage her brain.  Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   From: Joyce T Rosenberg <pinkrockybeach (AT) yahoo (DOT) com> To: Breathe-Support Sent: Wed, January 6, 2010 7:39:22 PM Subject: Re: In my brothers words  glad she is doing well and going home tomorrow, that is wonderful news  what kind of tumor did you expect? Pink Joyce R (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com> Subject: In my brothers words To: Breathe-Support@ yahoogroups. com Date: Wednesday, January 6, 2010, 4:50 PM  Just got an email from my brother , 's Daddy:  "Hello all is out and resting in the ICU as planned.. Everything went very well !!! The initial report is the tumor is what we expected. She will be released tomorrow morning. Yea !!!!!"  I couldn't have said it better myself! Yea!!!!   Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Very inspiring story! wishing the couple ;all the best' Geeta > > > > > > >From: Beth mbmurtha (AT) yahoo (DOT) com> > > >Subject: In my brothers words > > >To: Breathe-Support@ yahoogroups. com > > >Date: Wednesday, January 6, 2010, 4:50 PM > > > > > > > > >Â > > >Just got an email from my brother , 's Daddy: > > > > > > " Hello all > > > > > > is out and resting in the ICU as planned.. > > > > > >Everything went very well !!! The initial report is the tumor is what > we expected. > > > > > >She will be released tomorrow morning. > > > > > >Yea !!!!! " > > >Â > > >I couldn't have said it better myself! Yea!!!! > > >Â > > > > > >Â > > > Beth > > >Moderator > > >Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > >Â > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 thanks for informing us about your neice's condition i certainly hope it is the NF and nothing worse i also hope that the treatment will shrink it so that she will be able to function Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: In my brothers wordsTo: Breathe-Support Date: Wednesday, January 6, 2010, 7:53 PM has a condition called Neurofibromatosis, specifically NF1. It is a complex disorder that affects many organ systems but specifically causes tumors on peripheral nerves. Most of these tumors are benign but some are or can become cancerous. The doctors have been watching this specific lesion on 's brain for several years. It has recently started to grow which was reason for concern. The preliminary results from the biopsy show that it is an NF tumor and not cancerous though confirmation of that will take a week or so. It will be treated regardless with chemotherapy and possibly radiation in order to shrink it so that it no longer threatens her abilty to control the right side of her body and her cognitive functions. If, God forbid, it does turn out to be cancer or it becomes cancerous at some future date, full surgical with all it's attendant risks will have to be done. That's something my brother and sister in law would like to be able to avoid as removing the tumor would almost definitely damage her brain. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wed, January 6, 2010 7:39:22 PMSubject: Re: In my brothers words glad she is doing well and going home tomorrow, that is wonderful news what kind of tumor did you expect? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: In my brothers wordsTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 6, 2010, 4:50 PM Just got an email from my brother , 's Daddy: "Hello all is out and resting in the ICU as planned..Everything went very well !!! The initial report is the tumor is what we expected.She will be released tomorrow morning.Yea !!!!!" I couldn't have said it better myself! Yea!!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 gina didn't know about your neice, never heard of AVM, glad she is doing well right now, may she continue to do well Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: In my brothers wordsTo: Breathe-Support Date: Wednesday, January 6, 2010, 8:15 PM Queen MBee, The brain is such an awesome, but scary part of our bodies to come to grips with...so complex...it' s the constant waiting to figure out developments that can take a toll on everyone. Do you remember my niece, Casey with the AVM..she's just had the follow up investigations to see if the Radiation treatment she had over a year ago has worked to shrink her Brain Stem AVM. Sadly it hasn't worked at all. She now knows that she's living with a Time Bomb in her Brain. She has done remarkably well this year in her recovery, returned to her work with the Comuting Organisation IBM who have been wonderful in setting up special work for her. Her physical limittions with movement, speech & vision are serious but she is an incredibly independant young woman & fiesty as all get-out! She's met a young man, they've moved into their own flat & are planning to marry. He incidentally has major repeat heart surgery in front of him (congenital valve problems)... they are a brave young pair. Casey is determined to live her life to the fullest, damn the future & what it may or may not hold! Now is NOW...no time for regrets! They are both insoirational to us all! GIO > > > >From: Beth mbmurtha (AT) yahoo (DOT) com>> >Subject: In my brothers words> >To: Breathe-Support@ yahoogroups. com> >Date: Wednesday, January 6, 2010, 4:50 PM> >> >> >Â > >Just got an email from my brother , 's Daddy:> >> >"Hello all> >> > is out and resting in the ICU as planned..> >> >Everything went very well !!! The initial report is the tumor is what we expected.> >> >She will be released tomorrow morning.> >> >Yea !!!!!"> >Â > >I couldn't have said it better myself! Yea!!!!> >Â > >> >Â > > Beth> >Moderator> >Fibrotic NSIP 06/06 Dermatomyositis 11/08> >Â > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Pinky Joyce..I posted about it well over a year ago now...it's a congenital Arterio Venal Malformation & can occur anywhere in the body. She was dreadfully unlucky to get hers in her Brain Stem. No warning..she just collapsed one night at her Parent's while watching Tele with them. The network of capilliaries between the arteries & the veins is missing in this spot & eventually the pressure builds up & causes a rupture. Brain Stem AVM's are mostly fatal in the first instance so that her recovery to this point is remarkable. Sadly it is only a matter of time before it'll happen again. It's too risky to perform surgery & they were hoping the Radiation treatment would make all the cappiliaries 'stick' together & block off the malformation. Not to be! She's living on 'Borrowed Time' but she shows such grit & determination to live on Her Terms & to the fullest! She's 21 years old. Life isn't Fair it just IS! > > > > > > >From: Beth mbmurtha (AT) yahoo (DOT) com>> > >Subject: In my brothers words> > >To: Breathe-Support@ yahoogroups. com> > >Date: Wednesday, January 6, 2010, 4:50 PM> > >> > >> > > > > >Just got an email from my brother , 's Daddy:> > >> > >"Hello all> > >> > > is out and resting in the ICU as planned..> > >> > >Everything went very well !!! The initial report is the tumor is what we expected.> > >> > >She will be released tomorrow morning.> > >> > >Yea !!!!!"> > > > > >I couldn't have said it better myself! Yea!!!!> > > > > >> > > > > > Beth> > >Moderator> > >Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Hi , we had been wondering about your niece for some time. Glad to hear that she is dealing with it but sorry to hear that the radiation did not work. The explanation that we received when out daughter had problems with AVM were that the capillaries between the veins and arteries were there from birth and should have normally separated as she matured, but had not. These capillaries could not handle the pressure difference over a long period of time. The rupture was in this area. Our neurosurgeon explained the difference in treatments as radiation and surgery. Radiation could take up to two years before it would be known if it was successful, but was not as dangerous as an operation. However, a successful operation would give more immediate results. The problem with radiation is that it cannot be as pinpoint as actually going in and operating. Fortunately, Becca’s AVM could be operated on, and she elected to have the surgery. We were lucky. The only side effect from the damaged brain area is that she has lost her peripheral vision on the right side. For a while that bothered her quite a bit, but she has grown accustomed to it. Additionally, she has experienced some short term memory loss, which has limited her in some of the jobs that she can do. Bob Dopher 67 IPF 04/07 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of grangi49 Sent: Thursday, January 07, 2010 8:41 PM To: Breathe-Support Subject: Re: In my brothers words Pinky Joyce..I posted about it well over a year ago now...it's a congenital Arterio Venal Malformation & can occur anywhere in the body. She was dreadfully unlucky to get hers in her Brain Stem. No warning..she just collapsed one night at her Parent's while watching Tele with them. The network of capilliaries between the arteries & the veins is missing in this spot & eventually the pressure builds up & causes a rupture. Brain Stem AVM's are mostly fatal in the first instance so that her recovery to this point is remarkable. Sadly it is only a matter of time before it'll happen again. It's too risky to perform surgery & they were hoping the Radiation treatment would make all the cappiliaries 'stick' together & block off the malformation. Not to be! She's living on 'Borrowed Time' but she shows such grit & determination to live on Her Terms & to the fullest! She's 21 years old. Life isn't Fair it just IS! > > > > > > >From: Beth mbmurtha (AT) yahoo (DOT) com> > > >Subject: In my brothers words > > >To: Breathe-Support@ yahoogroups. com > > >Date: Wednesday, January 6, 2010, 4:50 PM > > > > > > > > > > > >Just got an email from my brother , 's Daddy: > > > > > > " Hello all > > > > > > is out and resting in the ICU as planned.. > > > > > >Everything went very well !!! The initial report is the tumor is what we expected. > > > > > >She will be released tomorrow morning. > > > > > >Yea !!!!! " > > > > > >I couldn't have said it better myself! Yea!!!! > > > > > > > > > > > > Beth > > >Moderator > > >Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 i vaguely remember reading about it, but not really grasping it sorry the treatments were not successful glad she is living her life to the fullest Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: In my brothers wordsTo: Breathe-Support Date: Thursday, January 7, 2010, 8:40 PM Pinky Joyce..I posted about it well over a year ago now...it's a congenital Arterio Venal Malformation & can occur anywhere in the body. She was dreadfully unlucky to get hers in her Brain Stem. No warning..she just collapsed one night at her Parent's while watching Tele with them. The network of capilliaries between the arteries & the veins is missing in this spot & eventually the pressure builds up & causes a rupture. Brain Stem AVM's are mostly fatal in the first instance so that her recovery to this point is remarkable. Sadly it is only a matter of time before it'll happen again. It's too risky to perform surgery & they were hoping the Radiation treatment would make all the cappiliaries 'stick' together & block off the malformation. Not to be! She's living on 'Borrowed Time' but she shows such grit & determination to live on Her Terms & to the fullest! She's 21 years old. Life isn't Fair it just IS! > > > > > > >From: Beth mbmurtha (AT) yahoo (DOT) com>> > >Subject: In my brothers words> > >To: Breathe-Support@ yahoogroups. com> > >Date: Wednesday, January 6, 2010, 4:50 PM> > >> > >> > > > > >Just got an email from my brother , 's Daddy:> > >> > >"Hello all> > >> > > is out and resting in the ICU as planned..> > >> > >Everything went very well !!! The initial report is the tumor is what we expected.> > >> > >She will be released tomorrow morning.> > >> > >Yea !!!!!"> > > > > >I couldn't have said it better myself! Yea!!!!> > > > > >> > > > > > Beth> > >Moderator> > >Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Bob didn't know about your daughter, glad the surgery was a success, the losses that she is experiencing are a nuisance [for lack of a better word], but she has her life and you have her Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: RE: Re: In my brothers wordsTo: Breathe-Support Date: Thursday, January 7, 2010, 9:33 PM Hi , we had been wondering about your niece for some time. Glad to hear that she is dealing with it but sorry to hear that the radiation did not work. The explanation that we received when out daughter had problems with AVM were that the capillaries between the veins and arteries were there from birth and should have normally separated as she matured, but had not. These capillaries could not handle the pressure difference over a long period of time. The rupture was in this area. Our neurosurgeon explained the difference in treatments as radiation and surgery. Radiation could take up to two years before it would be known if it was successful, but was not as dangerous as an operation. However, a successful operation would give more immediate results. The problem with radiation is that it cannot be as pinpoint as actually going in and operating. Fortunately, Becca’s AVM could be operated on, and she elected to have the surgery. We were lucky. The only side effect from the damaged brain area is that she has lost her peripheral vision on the right side. For a while that bothered her quite a bit, but she has grown accustomed to it. Additionally, she has experienced some short term memory loss, which has limited her in some of the jobs that she can do. Bob Dopher 67 IPF 04/07 From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of grangi49Sent: Thursday, January 07, 2010 8:41 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: In my brothers words Pinky Joyce..I posted about it well over a year ago now...it's a congenital Arterio Venal Malformation & can occur anywhere in the body. She was dreadfully unlucky to get hers in her Brain Stem. No warning..she just collapsed one night at her Parent's while watching Tele with them. The network of capilliaries between the arteries & the veins is missing in this spot & eventually the pressure builds up & causes a rupture. Brain Stem AVM's are mostly fatal in the first instance so that her recovery to this point is remarkable. Sadly it is only a matter of time before it'll happen again. It's too risky to perform surgery & they were hoping the Radiation treatment would make all the cappiliaries 'stick' together & block off the malformation. Not to be! She's living on 'Borrowed Time' but she shows such grit & determination to live on Her Terms & to the fullest! She's 21 years old. Life isn't Fair it just IS! > > > > > > >From: Beth mbmurtha (AT) yahoo (DOT) com>> > >Subject: In my brothers words> > >To: Breathe-Support@ yahoogroups. com> > >Date: Wednesday, January 6, 2010, 4:50 PM> > >> > >> > > > > >Just got an email from my brother , 's Daddy:> > >> > >"Hello all> > >> > > is out and resting in the ICU as planned..> > >> > >Everything went very well !!! The initial report is the tumor is what we expected.> > >> > >She will be released tomorrow morning.> > >> > >Yea !!!!!"> > > > > >I couldn't have said it better myself! Yea!!!!> > > > > >> > > > > > Beth> > >Moderator> > >Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Bob, I'm sure your family gives thanks every day for the treatment that saved your daughter's life. There were 2 other young patients that came in at the same time as Casey..one died, one had successful brain surgery & Casey is the third story. It's wonderful that she is doing so well. love, > > > > > > > > > >From: Beth mbmurtha (AT) yahoo (DOT) com>> > > >Subject: In my brothers words> > > >To: Breathe-Support@ yahoogroups. com> > > >Date: Wednesday, January 6, 2010, 4:50 PM> > > >> > > >> > > > > > > >Just got an email from my brother , 's Daddy:> > > >> > > >"Hello all> > > >> > > > is out and resting in the ICU as planned..> > > >> > > >Everything went very well !!! The initial report is the tumor is what> we expected.> > > >> > > >She will be released tomorrow morning.> > > >> > > >Yea !!!!!"> > > > > > > >I couldn't have said it better myself! Yea!!!!> > > > > > > >> > > > > > > > Beth> > > >Moderator> > > >Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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