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My Journey With Chiari Malformation

Another hurdle

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Diagnosis and the Doctor Search
Consult with Dr Milhorat
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Posterior Fossa Decompression Surgery
Another hurdle
Surgery 2, and Life After!
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The fight continued

I had my six month follow up MRI done locally.  I was feeling pretty good, but still complaining of not being able to look down/bend down without getting dizzy.  After all the symptoms I had prior to surgery, I considered myself a success!  I still do.

However, my new MRI showed that my cervical stenosis had progressed to the point where it needed attention, and that I also now had herniated disks in that same area, C4,5,6,7. I needed laminectomy, discectomy and fusion (no halo). My bulging disks were blocking CSF flow on one side, increasing my risk of syringomyelia and aggrivating my chiari.

 

This disk herniation could have been from the increased risks of cervical instability due to my decompression surgery. It could have happened in everyday life. Who knows? 

Dr Bolognese wanted to do this fusion surgery because of my existing Chiari.  I wanted to go back there, because he knows my case and I trust him completely.

 

Unfortunately, my insurance company felt otherwise. I went through a year of denials, appeals, and fights with them, including over five thousand in legal fees.

The meetings with the insurance company were interesting.  I found out that before my first denial, they had negotiated a 20% discount with my surgeon's hospital.  Then turned around and denied me.

I also found out this about two of the doctors they requested me to see prior to "approval":  They asked both to talk to them prior to writing up their letters about their exams of me!!  The docs refused, and both wrote up letters in my favor.  The insurance co was mad at them!  Does this all sound fishy to you?  Me, too. 

I saw the insurance companies "in plan care" that they forced me into.  What a terrible experience.  First thing he asked me to do was tell him about the chiari symptoms I was having prior to decompression.  No problem, I started rattling them off.  When I got to cognitive symptoms, I was interrupted with "Impossible, those are not chiari symptoms, you might as well tell me your brain is in your big toe.  If you squeeze your big toe, you can't think, if you stop, you can think again." 

I kid you not, that is what he said. The appointment went downhill from there, I simply said yes and no, and got out of there as fast as I could.  No point trying to talk to that bozo. Never mind the fact that cognitive symptoms are very well documented, and are a result of the cerebellum compressing the brain stem.  What do I know? (!!) He tried to discredit me, discredit the NY doctors, questioned my previous care, questioned my need for further care, you name it. He was a bully, and he did it with a smile on his face the whole time.  Creep.  OK, but I had to get the myelogram he offered, since Dr B thought it was a good idea, too.  I did.

What follows is more of the same.  My follow up visit since the myelogram was no better.  He went on a 5 min rant against NY, all but calling them shysters.  He then said I did not have stenosis (4 other docs have told me I do) I have a bone spur, but it is not causing my symptoms, and does not need any surgery (even though it is pressing against a nerve).  He will NOT refer me back to NY, but he will refer me to another NSG in his group, a PEDS NSG, with chiari experience, for a chiari consult.  WHAT?  He think I'm nuts,that I want more of this abuse?  All the time telling me that he's only trying to help me.  RIGHT.

In the meantime, I could not bend down/look down, or I got dizzy and nauseous. I could not do "too much" or I got dizzy and nauseous. I staggered around, with tunnel vision, decreased hearing, and gasping for breath if I did.  It sounds like I could have high ICP.  That might mean a shunt, which terrified me.  My chiari symptoms were there again,(milder than before surgery) and I was in increasing pain. My arms and face were now numb a lot of the time.

It has now been almost two years since my original decompression surgery.  Fighting with Priority Health HMO has cost me a year of poor health.  I have nothing but venomous feeling toward them, and that can't be doing me any good.

My then husband and I changed to a PPO during open enrollment.