Looking for a Dr/NS for my dd12

[maddy2815]

Hi. My dd12, she was 11 then, was dx with CM last September. The ns led me to believe that there was nothing to worry about because it is only a CM1. She has started to get Chiari type headaches, in the back of her head a month ago. She never had headaches before. I am thinking the ns doesn't know much about CM and I want to find one more experienced with CM. I am thinking I should ask for. CINE-MRI also. I live in NYS about an hour north of the city. I am willing to travel a little bit. I am cautious about going to the Chiari Institute, as I have found some less then glowing information about that place on the web.  I hope that someone can provide me with some information. I want to make an appointment as soon as possible. Thank you.

[stactheacetx]

I completely agree with you. I just got done with a second opinion at a NL here in Houston. When she examined me she said after seeing my MRI results she did not expect me to look the way I do. My scans are in line with someone who should have speech problems, vision problems, severe headaches, extreme clumsiness. I only have headaches and slight nerve issues on the left side. So that goes to show you not matter how big the syrynx and herniation is symptoms don't always line up. My syrinx is 18cm 4mm wide and 11 mm herniation. You are your childs best advocate.

[Rsh426]

I live in NJ and just had surgery (still in the hospital, in fact). My surgeon is Dr. Rekate, the head of TCI, and I really like him. I got my first opinion from chief of NS elsewhere and wasn't comfortable. when i looked for a second opinion, i found TCI. I find Dr. Rekate's manner to be very calming and reassuring,but also very knowledgable. I wasn't ready for surgery when I first saw him, and he didn't push. Then I lived with the pain a while longer and decided to do it.  I can't say much about life after surgery yet, but I'm looking forward to finding out how it's going to be. Post-op hasn't been as bad as I feared.  The hospital is on Long Island and my insurance covers. I wish you the best as you and your daughter make this decision

[selmaS]

  When I went the NL's worked with INS...and I know there is one NS that does, I do not know him as he came after I was there....I prefer the NS I had of course,,or Dr B,.....only bcuz I feel I know them.

We have had few that went to the new Dr....he is also the head of TCI.....

Good Luck and do let us know what u find out.

[maddy2815]

I am going to go ahead and get an appt at TCI. I'm running to the library now to printout the paperwork. No printer at home right now. I see they may take insur. I hope they take ours.

[selmaS]

  I know what u mean, my mom took me to the Drs when I was an infant and said her head looks mis shaped...his reply was ...be happy she is a girl, her hair will hide it.....

Not ALL Chiari specialists work with INS...but, if u appeal to urs u may get most of it sent to u to cover the cost of going.....but be prepared u may need to pay out of pocket for the initial visit.....

Many of the NS's that do not work with INS is bcuz they do not have their hands tied by the INS comp as to what they can and can not offer in the way of help.....many still follow much of  the protocal for medical INS so that testing is covered by the patient....so they still have hoops to jump thru....but it dose minimize how many.....

Not all with Chiari need surgery or right away.....so take ur time and find out how her chiari is affecting her overall health.

[maddy2815]

Thank you Selma. I appreciate hearing that. You are probably right. There is always another side to the story. It is just scary. Then I need to find a Dr that will take our insurance. I am not thinking about surgery. I want to keep an open mind but my dd refuses to get her finger pricked for blood work at the Dr's office so I could not imagine her getting brain surgery. :(( Went to our pediatrician that I had respected til now. I had hoped to talk with him about my daughter's headaches and CM. Maybe he could help me find a good neurologist. He said, "Don't give your daughter anymore reason to have a headache than she needs to." What?!!! It didnt sink in til later just how offensive that comment was. Then he said that her Chiari, wasn't that severe. Immediately i responded to that, thanks to the research I.have been doing. It doesn't matter what the measurement is. Some with a small measurement can have more severe symptoms than a person with a larger measurement. I have it in mind to write a letter to this Dr. He has always been very nice and I don't think he realizes how much he offended me. Maybe i provide.him with some good web sites so he can educate himself about CM.

[selmaS]

  Hi and welcome to the Chiari forum.

U may find less then glowing info on all the Chiari Drs if u dig enuff and the reason is that main stream Drs even some NL and NS's do not feel Chiari is something to be concerned about....I went to TCI while all that stuff was going on that u r referring to, I had the best care and am very happy I went....

U should research Drs, meet a few, educate ur self sou can find the right Dr for ur DD...both u and ur DD need to be comfortable with which ever Dr u do choose to go to.

We do have a list of Drs, it is not a referral or endorsement....it is here for u to use as a tool to research Drs.

http://www.medhelp.org/health_pages/list?cid=186

If u have ne questions all of us here are willing to share what we do know...and support u neway we can.