I Feel Like I'm Going Crazy

[teacherhall]

I went to see THE Chiari neurosurgeon in Las Vegas. He says that I do not have Chiari Malformation. My MRI shows my tonsils hanging a little. His physician's assistant looked at my list of symptoms and said that I am experiencing the typical symptoms. I saw my family practice doctor. She asked if this is just depression. She is referring me to a neurologist. I really don't know what to do. I want my life back.

[Initwithyou]

Finding a true Chiari Specialist is difficult.  I did a lot of calling to clinics and asking questions.  I looked at the list on this website and other websites.  I ended up driving 650 miles to go to one I felt will work for me. (BTW I had my first surgery by a neurosurgeon that does Chiari decompressions which is NOT the same thing as a Chiari specialist.)   My PCP had sent my medical records including an updated brain MRI to Mayo to their Chiari "specialist" and he wrote us a letter saying I was adequately decompressed and needed no further workup.  Since I work in healthcare and have done a ton of research, I knew he could not tell I was adequately decompressed by the records he received and told my PCP that.  I then sent my records off to another Chiari Specialist and he wanted to see me in person and have a CINE MRI performed as well as blood work to rule other things out.  When I asked the scheduling nurse what he thought was wrong prior to going, she said "inadequately decompressed".  I drove there and had the tests done and met with the doctor after.  The CINE MRI demonstrated significant flow restrictions.  He also ordered a Cervical MRI that I did back at my home facility that reported improved but continued significant crowding of my brainstem.  Originally it was "severe".  I guess I would tend to go with the second doctor who ran appropriate tests since I have returning significant symptoms that are increasing each month and greatly affecting my quality of life.  I am also visiting with someone else who had the same issues and she also had sent hers off to Mayo and received the same letter from them.  She had flown all over the US to find the "right" Chiari Specialist for her which is the one I chose to go to as well.  I hope you find your answers.

[selmaS]

  We all definitely need patience...with Drs to just get a DX...then treatment and dealing with the symptoms...and then with those around us that just do not understand we can not do some things we use to....

I was sent to a few Drs....they were "specialists" too....NOT !!! One actually said I had Chiari but it was "above him" and could not give me a name of whom to see next.....just because they are the resident "expert" does not mean they are the right Dr for any of us...

[selmaS]

  I know just how you feel I saw a few Drs and one told me I did not have it.....and another one that said I did but it was "above him"....it can really test one's patience and fortitude.

Not sure who you saw as we do not have a specialist listed for  Las Vegas......and even of the Drs we have listed, not all are true Chiari specialists so we do need to see a few compare what we are told and we must educate ourselves on ALL related conditions as well as Chiari so we can identify the right Dr when we meet them.

[teacherhall]

I saw Dr. Seiff, who is supposed to be THE Chiari neurosurgeon in Las Vegas. I have found out that there is another Chiari neurosurgeon here. Of course, I can't remember his name. I'm thinking that I may have type 0 malformation.

I've been trying to keep my mind on other things; watch funny things on TV, get a massage, watch kitten videos. It helps for a while until the symptoms come back. I may write a book on patience after all of this.