This is amazing!! A regular Neuro who believes!!!

[xmelax35]

I am finally past all of my appts needed for surgery. It is a long story why, but I was required (ins reasons, I guess) to go to a NC board Certified regular Neurologist, to get a 2nd opinion, exam, & have him look at my CT Scans.  He did not have my exact opinion of my neurosurgeon, but he had some of what he wanted...he was not allowed to have the exact opinion of my surgeon's findings...weird but true. The neuro came back and was shaking his head (we could see him in the hallway looking at the photos and shaking his head there too). He said talked to me and asked what was going on and etc..the history. Did an exam, then told me what he saw. He couldn't believe what he saw. He was flabergasted.  The neuro said that the surgeon who did my first surgery, it was like he started it and went almost half way then just stopped. He never finished it. The previous surgeon did only one half of my head (decompression) and stopped in the middle of it. He asked us if we knew why he did that, and we said that prob because we were just happy to find someone who was willing to try and help do something that we really didn't research him enough. To find out he was not a chiari specialist. So evidently that is why it is so messed up and got all messed up in there.

So since there was only half of it done, it is just messed up in there.  He definitely could understand why I am in pain.  He told me that because of everything going on in there (the brain) that this surgery may not get rid of all of the headaches. I have them every single day of my life! they never go away. I have learned to live with some of them (I get 5 different kinds).

Anyway, I was just shocked that he believed and actually looked at my CT's. No other neurologist has ever looked at the films but for a second, nor do they believe in Chiari, or even agree with a surgeon or surgery. He thinks I need to get it done. He is sending his opinions to Dr. Rosner. So now maybe I am on the road to some relief.  I am still going back and forth about the cutting out the cerebellar tonsils though.

Oh and this neuro was concerned about my headaches and weather they found anything that worked on me or not. He was caring and very nice! Well worth the trip to West Virgina to see him!

I am already scared because of how dangerous this surgery is going to be (he has to go up and under stuff working around stuff to get where he needs to be) it is really messed up in there. So this is scary.  My husband said his worst fear is going there and coming back w/o me! He is afraid too. He is scared of something happening to me. Have never heard him say anything like this before.

[selmaS]

  Ask for written docs on all of it...keep records and consult a lawyer.....

       and keep us posted.

         "selma"

[xmelax35]

p.s. they said that you have like a year or 2 (maybe it was 2) after you are told  by doctors what is wrong - after having a diagnosis. So I guess a year or so from this point.

[xmelax35]

It is ironic you mention that, because...someone else said I should (someone in the law area) just hearing my story. I wasn't even talking to them for advice, just a relative and they said that.

[selmaS]

  It just boggles the mind...I wonder if u could get the other Dr on malpractice?? Cuz it sounds like the other drs r saying it was.

So glad u r getting the info u need for the ins to move forward to get this fixed.....and I am sure with a good Dr u will be in good hands.....

And I know it is scary.....

  Hang in there and keep us posted

[Sheri817]

I am soo sorry to hear that you have had to go thru all of this. So sad that we have insurance and still have to go thru all of this mess. I pray that God will send an answer to you ASAP. I also pray that your new surgery will go without any flaws and you will have a speedy recovery and much relief!..

[linnielou232]

It blow's my mind that a surgeon would go in and do a half of a surgery.  I have never heard of this before.  I know the procedured you have to go through because of ins reason's, but have never heard of what you have gone through.  I hope for the best for you and I pray that you get the answer's you need to find.

[xmelax35]

p.s.  This is funny: He was approved by the NC Medical Board (they said he was indeed NC Board Certified). Well, we went and were in the room and his nurse asked us why we were there (she wasn't happy to be working, I think). We told her I had Chiari. She said, "We don't do Chiari here". We told her it was only a one time thing. One time appt, needed a nc board certified neuro. She said in a tone," He isss not NC Board Certfied". We told her that we were told he was by the Medical Board of NC. She said, "Ohh no, he is not, he does not have a license for NC, he never has. No ma'am....etc... As my heart sank in my stomach, thinking wasted trip.  We told her again, and she shook her head and said nope. She went out in the hall and told him that were were told and that she told us he was not. He told her that he was, and she said, "You are???" She said, I didn't know that." He said, I am certified all over the place.  She said, well I learned something new.

Also, he was very well associated with what Chiari was. He even knew of a specialist who takes care of it and told us where he was. I pretty much sure of who he was talking about and I told him that we would have to come up with a lot of money ahead of time to see him and they'd reimburse from ins later - I knew that doctor was more expensive than any others (he said, well, most of them are very expensive) :D. Otherwise, NC was easier.