chiari surgery on my daughter end of July

[syddog]

Well, we met with two surgeons who looked at my 13 year old daughters MRI and flow study.  they discussed all her symptoms and both suggest surgery.  thy said "its something that will liekly have to be done at some point". They said they "can not guarantee she will be better but can promise she wont be worse and it's her best chance at regaining a quiality of life".  I trust both surgeons.  They do say they need to open the dura.  Im in a panic because I dont know what to do.  It seems I've herad mostly bad stuff about the decompression surgery outcomes but perhaps Im worng.  She still has some good days where she smailes and laughs and I am terrified she coudl lose that.  They said many of her symptoms are chiari like and some arent.  She had constant daily head pain which one dr said is not typical of chiari. She had painful episodes with shaking and numbness.,  Shes always dizzy.  i welcome ANYONES thoughts and advice.  I want to dot he surgey, if we do it, this summer so maybe she can return to school in the fall.  

[selmaS]

  Keep in mind, the NS only gets paid the big bucks when they operate....this is what they  are set to do...surgery, and if u do not want it...then they have no need to see u....so, many may be eager to offer surgery, but it doesn't always mean they r the best ones to go with.

  "selma"

[syddog]

Well I have just read a lot about how some peoples symptoms have worsened.  they have looked into odontoid and tethered cord but not EDS.  The neurosurgeons we are using, as we are choosing between two, are both very highly recommended. both have done over 20 yrs of decompression surgery but when i asked them if they are considered specialists they both responded with some sort of comment about how it is their most common ped neuro sugery.  So I dont think they are "specialists" teachnically. The neurologist doesnt think the chiari is the issue but the neurosurgeons both seem to listen to my daughter whereas our neurologist seems to simply placate us.  the NS say we need to move forward with surgery...well, they said they think it may make a significant dfference.  

[selmaS]

  Hi...well I can only assume ur DD has a Obstruction to her CSF since u did not say, but said u discussed the flow study and both Drs r suggesting surgery.....

May I ask what areas they felt required surgery...is it just the flow?...does she have other issues?....Did they look at the odontoid....tethered cord, ehlers-danlos? I asked bcuz of the constant pain...and the Drs didn't feel it was chiari related.

If they open the dura, did they mention what type of patch they would use?

May I ask y u feel she may lose the ability to enjoy some days?What exactly is it u fear...a failed surgery perhaps?.....


  R u sure these r the right NS's for ur DD?

     "selma"

I had the PFD and I still smile and enjoy life, so I am not sure what u mean...yes, it is possible to have this surgery and have an  adverse reaction or effect....there is no way to know b4...but having the best experienced chiari drs is one way to put ur mind at rest, bcuz not having surgery if there is compression and or an obstruction can cause the same problems.