ÿþ<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.01 Transitional//EN" "http://www.w3.org/TR/html4/loose.dtd"> <html><!-- InstanceBegin template="/Templates/vogtemplate.dwt" codeOutsideHTMLIsLocked="false" --> <head> <!-- InstanceBeginEditable name="doctitle" --> <title>Kaitlynn Stone</title> <!-- InstanceEndEditable --><meta http-equiv="Content-Type" content="text/html; charset=iso-8859-1"> <style type="text/css"> <!-- body { margin-left: 0px; margin-top: 25px; margin-right: 0px; margin-bottom: 0px; } --> </style> <link href="../../../vog.css" rel="stylesheet" type="text/css"> <!-- InstanceBeginEditable name="head" --> <script language="JavaScript" type="text/JavaScript"> <!-- function MM_openBrWindow(theURL,winName,features) { //v2.0 window.open(theURL,winName,features); } //--> </script> <!-- InstanceEndEditable --> </head> <body> <table width="90%" border="0" align="center" cellpadding="0" cellspacing="0"> <tr> <td class="pagetitle"><!-- InstanceBeginEditable name="toptext" --><span class="subtitle">Kaitlynn (katie) Stone</span></td> </tr> <tr> <td bgcolor="#0000CC"><img src="../../../gfx/spacers/1x1.gif" width="1" height="1"></td> </tr> <tr> <td>&nbsp;</td> </tr> </table> <!-- InstanceBeginEditable name="mainbody" --> <table width="90%" border="0" align="center" cellpadding="0" cellspacing="0"> <tr> <td height="19" class="maintext">&nbsp;</td> <td width="231" rowspan="17" align="center" valign="top"><br> <table width="130" border="1" cellspacing="0" bordercolor="#69C1F3" cellpadding="3"> <tr> <td bgcolor="#69C1F3" class="boxtitle" align="center">Your Story </td> </tr> <tr> <td align="right"> <p><span class="boxtext">You may have read other peoples stories and experiences and would you like to have your story published on www.veinofgalen.co.uk</span></p> <p><a href="../../../forms/familystoryform.htm" target="_self" class="boxlink">Tell Your Story</a> </p></td> </tr> </table> <table width="50%" border="0" cellspacing="0" cellpadding="0"> <tr> <td>&nbsp;</td> </tr> </table> <table width="50%" border="0" cellspacing="0" cellpadding="0"> <tr> <td>&nbsp;</td> </tr> </table> <table width="130" border="1" cellspacing="0" bordercolor="#69C1F3" cellpadding="3"> <tr> <td bgcolor="#69C1F3" class="boxtitle" align="center">Forum</td> </tr> <tr> <td align="right"> <p><span class="boxtext">The Vein Of Galen forum is there for you to leave messages and contact other people who have been affected by<br> Vein Of Galen</span></p> <p><a href="http://pub17.bravenet.com/forum/show.php?usernum=1447524782&cpv=1" target="_self" class="boxlink">Enter Forum</a> </p></td> </tr> </table> <table width="50%" border="0" cellspacing="0" cellpadding="0"> <tr> <td>&nbsp;</td> </tr> </table> <table width="130" border="1" cellspacing="0" bordercolor="#69C1F3" cellpadding="3"> <tr> <td bgcolor="#69C1F3" class="boxtitle" align="center">Gallery</td> </tr> <tr> <td align="right"> <p class="boxtext">Many of our readers have sent in photgraphs of themselves or their children </p> <p><a href="../../../gallery.htm" target="_self" class="boxlink">Enter Gallery</a> </p></td> </tr> </table></td> </tr> <tr> <td height="19" class="maintext"><table width="100%" border="0" cellspacing="0" cellpadding="0"> <tr> <td width="50%" height="149" align="center"><img src="kstone2small.jpg" width="144" height="115"></td> <td width="50%"><p class="faqheader" align="center"> Kaitlynn Stone</p> <p class="faqheader" align="center"> 17th September 2004</p> </td> </tr> </table></td> </tr> <tr> <td class="maintext">&nbsp;</td> </tr> <tr> <td class="maintext">&nbsp;</td> </tr> <tr> <td class="maintext">&nbsp;</td> </tr> <tr> <td class="faqheader"> Katie`s Story </td> </tr> <tr> <td>&nbsp;</td> </tr> <tr> <td> <span lang="EN-US" style="font-family: 'Arial','sans-serif'"> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Our daughter Katie rushed in to the world six weeks early on September 17, 2004. She weighed over 6 pounds and aside from a heart murmur detected in the hospital, she appeared perfectly healthy. After a brief stay in the NICU she joined her big brother at home and we settled in for what we thought would be the typical newborn relay race with sleepless nights and countless dirty diapers. Almost immediately I noticed what was to be the tell-all sign that our daughter was not a typical newborn, a nickel-sized vein in the middle of her forehead. </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <?xml namespace="" ns="urn:schemas-microsoft-com:office:office" prefix="o" ?> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Mothers spend hours looking at their baby s faces and I was no exception. Day after day I watched her plump cheeks, dark hair and teeny nose. I also watched the vein on her forehead as it slowly stretched out, mapped across her forehead and under her eyes. Meanwhile, routine trips to her cardiologist were growing increasingly worrisome as he announced her heart was slightly enlarged and not functioning as he would prefer. </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Every three months we visited our family doctor/pediatrician for routine checkups. On each of these visits I would mention the ever-increasing veins on Katie s face and was told on more than one occasion,  her head is big, her skin is thin, they will disappear. They did not.<span style="mso-spacerun: yes">&nbsp; </span>Instead, the veins, particularly on the right side, became so noticeable that strangers started began to stare and make comments. During Katie s one-year checkup, our doctor finally took me seriously. Upon my insistence he ordered a CT scan. He thought perhaps the plates in her skull were closing prematurely but after the CT scan and subsequent MRI we received the diagnosis that no one was prepared for, hydrocephalus and Vein of Galen Malformation.</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Early on we let geography be our guide in determining where we would go to have our daughter treated. Although his name was not one mentioned by our neurologist, we found a neurosurgeon familiar with VOGM in a state near us. Although he readily admitted he had seen few cases in his practice he agreed to treat Katie.<span style="mso-spacerun: yes">&nbsp; </span> His recommendation was to wait until she was older before proceeding with the first embolization procedure. We were sent back home with VOGM still looming over our heads. As the months went by we kept in touch with the neurosurgeon by phone and sent MRIs to him so he could monitor Katie s progress from afar. Each time he said we should continue to wait for treatment. Frustrated by his lack of a concrete plan we contacted another neurosurgeon in the immediate area and planned to visit for a second opinion. </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-size: 12pt; mso-fareast-font-family: 'Times New Roman'; mso-ansi-language: EN-US; mso-fareast-language: EN-US; mso-bidi-language: AR-SA"> <br clear="all" style="page-break-before: always" /> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">The day before our visit to the second neurosurgeon Katie developed a partial paralysis. Her neck was stiff and cocked to the right. Her right upper extremity was rigid. We drove for 3 hours to see the second neurosurgeon and then waited another 3 hours in his busy overflowing waiting room. When he finally saw us he announced swiftly and without much consideration that he believed her hydrocephalus had increased, causing her paralysis. He said we should immediately have a shunt put in to drain the excess fluid and then proceed with an embolization procedure. On our drive home we felt confused and exhausted.<span style="mso-spacerun: yes">&nbsp; </span>We now had one surgeon who wanted to continue to wait for treatment and another who, in our opinion, wanted to take a much more aggressive and drastic approach. </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Within 48 hours her paralysis had subsided on its own and a CT done by our local doctor confirmed that the hydrocephalus, although still there, was no longer an immediate issue. Relieved by her improved condition, but knowing she was still a very sick little girl I turned to the Internet for help. I had seen the VeinOfGalen/U.K. website early on and knew that parents often responded to the forum when others asked for help. I posted a long rambling message about Katie s diagnoses, her current condition and pleaded for someone to give us information we could use to save our daughter s life. Within hours, quite literally, our prayers were answered. </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman"> A kind man named Bill Isaacs replied to my message via the email address I d given on the site. Bill and his wife Elizabeth, whose son Liam had also been diagnosed with VOGM, gave me very detailed information about what their opinion of our situation was and the doctors they recommended we contact. Though we only communicated via email at first and then by phone, I felt a comfort with them I hadn t felt with any of the doctors, neurologists or neurosurgeons we had seen.<span style="mso-spacerun: yes">&nbsp; </span> Later when I learned their son passed away as a result of VOGM when he was just a few months old, I was struck again by their amazing selfless spirit.<span style="mso-spacerun: yes">&nbsp; </span>The Isaacs provided the names of two neurosurgeons/neurointerventional radiologists and we chose Dr. Berenstein at Roosevelt Hospital in New York City.<span style="mso-spacerun: yes">&nbsp; </span></span></span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">After receiving Katie s MRI films and our letter of explanation, Dr. Berenstein called us personally.<span style="mso-spacerun: yes">&nbsp; </span>He had a commanding presence over the telephone.<span style="mso-spacerun: yes">&nbsp; </span>In the past we had spoken to so many doctors who were only vaguely familiar with our daughter s condition and now finally we were talking to the man who literally wrote the book on embolization and using surgical glue to treat VOGM.<span style="mso-spacerun: yes">&nbsp; </span>He explained the procedure in great detail and told us quite frankly that our daughter needed to be treated immediately.</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman">In December 2006, just a few weeks before Christmas, we traveled from Kansas to New York City so Katie could have her first embolization procedure.<span style="mso-spacerun: yes">&nbsp; </span> We were terrified.<span style="mso-spacerun: yes">&nbsp; </span>The first treatment was a success.<span style="mso-spacerun: yes">&nbsp; </span>Dr. Berenstein and his entourage of surgeons/nurses/specialists are amazing at what they do.<span style="mso-spacerun: yes">&nbsp; </span>Immediately we were impressed by his honesty and his desire to communicate with parents about all aspects of the surgery/recovery process.<span style="mso-spacerun: yes">&nbsp; </span>He was positive without getting our hopes too high and he was never condescending.<span style="mso-spacerun: yes">&nbsp; </span></span></span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-size: 12pt; mso-fareast-font-family: 'Times New Roman'; mso-ansi-language: EN-US; mso-fareast-language: EN-US; mso-bidi-language: AR-SA"> <br clear="all" style="page-break-before: always" /> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">On the day of surgery he called us in to the operating room after the angiogram to describe just what his plan of action would be during the procedure.<span style="mso-spacerun: yes">&nbsp; </span> Although the waiting period during surgery was excruciating, we finally felt peace knowing Katie was exactly where she needed to be. </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman">After the December 2006 trip, we subsequently made four more visits to New York.<span style="mso-spacerun: yes">&nbsp; </span>Each time Dr. Berenstein and his team carefully and methodically closed arteries leading to the Vein of Galen, eventually shrinking it in size.<span style="mso-spacerun: yes">&nbsp; </span>In May 2008 we visited Dr. Berenstein and an angiogram revealed the vein was finally normal size.<span style="mso-spacerun: yes">&nbsp; </span>When Dr. B (as we affectionately refer to him now) called our cell phone for what we thought was to be the typical summons to the operating room, instead he said,  <i>there is nothing more to do</i>, <i>you are done with me now, you can go home</i>. <span style="mso-spacerun: yes">&nbsp; </span>We were stunned and so very relieved.<span style="mso-spacerun: yes">&nbsp; </span> We have a picture of Dr. Berenstein with Katie displayed prominently under a cross in our living room and on the frame is the word,  B<i>elieve</i>. <span style="mso-spacerun: yes">&nbsp; </span>It s a word we held tightly to after her diagnosis and now it means so much more.<span style="mso-spacerun: yes"> &nbsp; </span></span></span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman">Update: In September 2009 a follow up MRI (almost two years after surgery) revealed no changes in her VOGM.<span style="mso-spacerun: yes">&nbsp; </span>Once again, Dr. Berenstein called personally to give us the good news.<span style="mso-spacerun: yes">&nbsp; </span>In the future, Katie s follow up looks to be minimal with another MRI in two years, then five.<span style="mso-spacerun: yes">&nbsp; </span>As long as her hydrocephalus remains stable her prognosis is good.<span style="mso-spacerun: yes">&nbsp; </span>Although her future will include a restriction on G-forces, and some of the very prominent veins on her face may never go away, there should be no lasting effects of her malformation.<span style="mso-spacerun: yes">&nbsp; </span></span></span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman">Now when we tell the story about Katie, her diagnosis and our journey, we will forever sing the praises of God, Dr. Berenstein, Bill, Elizabeth and Liam Isaacs and the Vein Of Galen website.<span style="mso-spacerun: yes">&nbsp; </span>They paved the way for our daughter s recovery.<span style="mso-spacerun: yes">&nbsp; </span>We are humbled and blessed by their help.<span style="mso-spacerun: yes">&nbsp; </span></span></span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">When we ask Katie why we travel to New York she says,  that s where Dr. B fixes my brain. <span style="mso-spacerun: yes">&nbsp; </span>Yes, he certainly does.</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">I hope our story was helpful.<span style="mso-spacerun: yes">&nbsp; </span>It was important for me to post our journey because we are grateful this site exists.<span style="mso-spacerun: yes">&nbsp; </span> VOGM is mysterious with very little information.<span style="mso-spacerun: yes">&nbsp; </span>We wanted parents to know there <i>are</i> stories of hope.</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman">Please feel free to contact us.<span style="mso-spacerun: yes">&nbsp; </span></span></span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman">Contact information for Dr. Berenstein below.<span style="mso-spacerun: yes">&nbsp; </span></span></span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Dani, Doug and Katie Stone</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Email: danim.stone@yahoo.com</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman"> <o:p>&nbsp;</o:p> </span> </p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Dr. Alejandro Berenstein</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">Roosevelt Hospital</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US" style="font-family: Times New Roman">212-636-3400</span></p> <p class="MsoNormal" style="margin: 0cm 0cm 0pt"> <span lang="EN-US"><span style="font-family: Times New Roman; 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