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953RE: [Parenting Children with Moyamoya] Re: Jennifer

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  • lora beasley
    Feb 24, 2008
      I am glad to hear a parents perspective about Vanderbilt. I need to find a neurosurgeon to monitor Meadow after Dr Steinberg's 6 month follow-up appt in July. I am not sure what to do because we had kind of a devastating time at UAB. Meadow had surgery at 7 months old to repair a hole in the base of her skull, this is actually when she had her 2 strokes back to back. One on the left side, one on the right. I think that we were never given a good explanation about what happened. Even now, all I can recall the NS saying about the strokes is that there were some "abnormal vessels" at the sight where he did the surgery. I think she may have even stroked during surgery...because the first thing he said after the operation was "she may have suffered some neuro deficits". Those words still haunt me to this day. : (
      The 2 closest children's hospitals for us are 2 hours away...UAB and Vanderbilt. We are 2 hours north of Birmingham, and 2 hours south of Nashville. It is about 3 1/2 to Memphis, and 4 to Atlanta. I am not sure where to go. I want someone that has experience with basal encephalocele and moyamoya. That will be a hard one to find!
      Who do you follow up with now for neurosurgery?
      Lora


      To: parentingchildrenwithmoyamoya@yahoogroups.com
      From: jnokes5@...
      Date: Sat, 23 Feb 2008 21:38:11 -0800
      Subject: RE: [Parenting Children with Moyamoya] Re: Jennifer




















      Yes, we live close to Cookeville,TN , which is about a 4 1/2 hr drive from Memphis. It is east of Nashville. We actually were referred to a neurosurgeon at Vanderbilt when Paige was diagnosed with MM but he was extremely rude, telling her father & myself that it was our fault she had MM because we let originally took her out of Vanderbilt to St.Jude so they would do radiation for her optic glioma. She had chemo at Vanderbilt but her body couldn't handle it and when the tumor started growing again, the doctors told us that they wanted her to start losing her vision before they would try another type of treatment. Then the neurosurgeon wanted to wait until her MM worsened before doing surgery and she had already had 1 stroke. That's when I contacted Dr.Steinberg which is why the surgeon at Vanderbilt became so angry with me and told me it was my fault.I'm sorry, you asked one question and I went on & on about Vanderbilt. As you can tell, I have had bad experiences there with

      my daughter.



      Jennifer



      lora beasley <lorabeas@...> wrote:





      Do you live in TN? We are about 3 hours from Memphis. We live in northern corner of AL.



      Lora

      To: parentingchildrenwithmoyamoya@yahoogroups.com

      From: jnokes5@...

      Date: Tue, 19 Feb 2008 20:38:09 -0800

      Subject: RE: [Parenting Children with Moyamoya] Re: Jennifer



      Lora,



      Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the moyamoya.com message board. I believe that her daughter wasn't diagnosed until after her surgeries for MMD. Paige on the other hand was diagnosed at 6 months( long before her MMD diagnosis. I also have become really good friends with another couple whose 13 yr old daughter has both NF and MM. She too is Dr. Steinberg's patient. We were not able to get Paige's insurance to pay for her to travel out of state to see Dr.Steinberg but we were extremely lucky. Paige is a patient at St. Jude Children's Hospital in Memphis,TN for her tumor in her optic nerve and they set us up with a wonderful neurosurgeon in Memphis( Dr. Frederick Boop) who did both of Paige's bypass surgeries. Of course Steinberg was my first choice but I feel like we got the next best thing. Thank you so much for contacting me. This group and the moyamoya.com



      website have both been a huge blessing for me. Once again, I hope all goes well with your daughter. By the way, has she had any more problems since her surgery? Please feel free to contact me anytime.



      Best wishes,



      Jennifer



      Hi Jennifer,



      Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.



      Lora



      To: parentingchildrenwithmoyamoya@yahoogroups.com



      From: jnokes5@...



      Date: Tue, 19 Feb 2008 03:00:13 +0000



      Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya



      --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"



      <lorabeas@...> wrote:



      >



      > Does anyone's child have ocular malformations? My daughter has a



      visual



      > defect in each eye. She has optic nerve hypoplasia in her left eye



      > (which I have been told can be associated with MMD). In her right



      eye,



      > she has either a coloboma or morning glory (optic disc anomaly).



      > She also has other conditions other than just the vision.



      >



      > She is still doing well. It has been one month since her last EDAS



      for



      > bilateral MMD.



      >



      > Thanks,



      > Lora



      >



      Lora,



      My daughter, Paige, who is now almost 6 yrs old was diagnosed with



      MMD in early 2006 after suffering a stroke in December of 2005. She



      doesn't have any malformations however she has an optic pathway



      glioma(tumor in her optic nerve) but it was caused by another



      disorder called Neurofibromatosis which she was diagnosed with at



      age 6 months. I have learned alot about MMD since her diagnosis but



      I did not know that it also caused optic malformations. I wish you



      and your family all the best.Your daughter will be in our thoughts



      and prayers.



      Best of luck,



      Jennifer



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