NY doc visit

So, now to go over all the information that I know from our doctor visit.

First I want to point out that the TCI facility was much nicer than the hospital.  (Although our only experince at the hospital was in the MRI facility).

Next I want to point out that our visit was so awful because on the way Olivia started complaining about her stomach.  Well, we went back to the exam room and the PA started doing our medical histories for the doctor.  Five minutes after being in the room Olivia (who warned me that her belly was hurting several times) threw up everywhere!  All over me all over the floor the chair ....everywhere.  This event repeated itself three more times before the doctor came in.  So, by the time he met with us, the room smelled of deadness and Olivia was dressed only in a towel!  Fortunately, I wore a brown sweater vest over my white shirt so at least God was with me there.  We did have a blanket in the car that we were able to wrap olivia in on the way out the door.

Now, the actual visit with the doctor.  He came in and informed us right away that the flex extension MRI's look normal for both children.  Yay.  He then went over symptoms and said neither of them need surgery.  We asked about Olivia's Syrinx issues.  We also asked about the sacral dysgenesis that the other Neurosurgeon had mentioned.  The doctor looked at us and said "do I have those scans?"  Personally, I was totally annoyed.  He ended up leaving the room to look at the scans in his office.  He reappeared to inform us that Olivia had tethered cord but he wasn't concerned.  Umm.  Hello is this the same doctor that emailed me how concerned he was over her case and how it is complicated and how it can require more than one surgery?  Why, yes it is the same one!  So, imagine my surprise when after a little more discussion about symptoms he completely changed his opinion to surgery and then proceeded to tell us how he did it.  He actually does the decompression and uses a metal plate over the area he removes.  He also goes through the dura and uses the patients own "skin" inside the skull to patch the dura back so that their body doesn't reject an outside material.  We asked him to go over our scans with us, but he refused.  He said he had seen all he needed to (uh ok, we would like you to show us! Right??).

I was so glad to be leaving.  Obviously, being covered in puke not ideal.  But mostly, because I could tell that this doctor was confused.  I ended up speaking with other people that have been seen by him only to hear similar stories about him recommending immediate surgery and then the next year on a follow up telling the families that their child doesn't have chiari anymore and just "pretend it didn't happen".  Personally, my opinion is that this doctor probably has too big a case load.  He may be a genius surgeon, but I need to know that he will not do the wrong surgery on my kid, because he is mixing up other cases in his head.  I know that sounds like a harsh wording but I have no other way to explain it.  The sad thing is, I don't dare express this to most folks that have used him because I do not want to hurt anyone and also I don't think that my experience is the only one people will have.  Obviously, there are tons of patients who love him and he did good work on.  It just won't be our family.

So, the visit was good because I got to see the great TCI place I have wanted to see and I also go to meet with a great neurosurgeon who is well published with Chiari.  I am glad God opended my eyes to the truth for our personal situation.  TCI is NOT our path.  Next please!