Chiari Malformation diagnosis

[Christianmom7]

My 17 year old daughter was just diagnosed with Chiari malformation and a syrinx. We just went on Sunday to Emory Hospital for a spine mri as well as a flow study test. We are meeting with her neurosurgeon again on Thursday to go over her results. My question to anyone out there is does the surgery always improve the symptoms. I know that in most cases it stops the progression of symptoms, which is very important when a syrinx is involved. From what I read, surgery is NOT a cure but can help with the symptoms and progression only. My daughter is being seen at Childrens Hospital in Atlanta, Ga. We have also been told about a specialist in Orlando , Fl. Is anyone familiar with a chiari specialist in the South? Has anyone on here used the neurosurgeons at Emory University? I am just very cautious about anyone operating on my childs brain and spine, but my daugher has debiliataing headaches, dizzyness, and low blood pressure. After seeing 8 specialists and ruling out everything known to mankind we have a diagnosis. Which is shocking to me because her initial mri was read as NORMAL by a radiologist , but was read as major chiari with a syrinx by a neurosurgeon and another radiologist. Please help and God bless for your time and help.
Amy

[Viva001]

I know that Duke has a pediatric Chiari specialist.  My NS refers to him.

[Viva001]

I forgot to mention that Duke is studying the genetic factors in Chiari.

[selmaS]

  Hi and welcome to the Chiari forum.

I am not aware of a Chiari Dr in Orlando, in Miami yes, and I know there are Drs in NC....and Baltimore , MD area....do look to our Drs list to do some research on Drs, keeping in mind not all on our list may be true chiari specialists and may treat children....or work with ur ins.

The list is also not a referral....we all must see a few Drs to find the right one for us.

Not sure what is meant by major Chiari??? it is either chiari or not, chiari is the malformation of the skull, the herniation is not chiari and that may be large causing the CSF obstruction, but it is the verbage that is odd.

As for the radiologist saying it is "normal" or clear...this happens often as many do not feel  chiari can be symptomatic that is bcuz of what they were taught in medschool....

Has ur DD been checked for tethered cord, ehlers-danlos, sleep apnea,ICP and POTS.....

  Since u mentioned the low BP I had that too, and mine was associated with my EDS dx as well as chiari, so do take the time to get all related issues dx'd b4 u consider surgery as some can affect how she feels and heals post op.Did they do a thoracic and lumbar MRI?

I had surgery, yesterday was my 3 yr anniversary and each yr that has passed I have seen marked improvements....I am very happy I had the surgery....I did not have post op set back, but my Dr did a lot of the testing b4 to know what additional issues I had and took precautions,

With precautions, I mean since I was dx'd with EDS I am prone to reject foreign matter, so my own pericardium was used as a dura patch, no staples or stitches, glue and sterri strips were....

Ask lots of questions and continue to add to what u know about chiari, it sounds like u have done some research already.

Many of the member s here do have their surgery experience posted in their journals....some u may have to send a friend request to view, but u click on their names and it takes u to their profile page, and u will find the journals there.

What happens post op, is really up to how much u and the Drs know about ur DD's condition b4 surgery is done...it will cut back on the set backs....but u just never know how her body will respond to the surgery itself....or how she will handle it....the more relaxed u r, the more she will be, that can help.

  

[Rahe28]

Well, Selma covered everything I would have said, and then some. All I can do is to stress to you the need for a true specialist. It really will make all the difference. What a wonderful mother your daughter has to advocate and keep searcing for the answer for her. That is truly a blessing. Welcome to the forum. You will definitely find support and help here. I only "thought" I knew about chiari until I came here. Best wishes to you and your DD. You will both be in my prayers !