ALWAYS get your records

[Dicon]

Hi

I just have to rant for a minute.......I just opened my medical records from Tufts. Thank God I did.  Listen to what it says (the doctor's note after seeing me)

"I reviewed her MRI scan. This does not show a definite CM. Her cerebellar tonsils do extend between 2 & 3 mm below the foramen magnum.  She does however have a retroflexed odontoid process and limited cerebral spinal fluid around the neural tissue on the axial MRI images at the foramen magnum."

OK......so there lies what is wrong with me, which is what I've been saying forever....why will none of these smart Drs see that this is what's causing all of my sx????  It's basically basilar invagination/cranial settling occurring so my dens is hitting my brainstem and that crowding is probably what's causing the tonsils to herniate.   I just don't get it....what else do I have to do to convince Drs that this is what's going on.  This is the exact scenario when they need to reposition your skull to get the dens off the brainstem and they fuse the skull to the spine!!!  And people that I've chatted with have had it done and are doing amazing!!  I wanna scream!!!

Despite these findings I was blown off at Tufts after I had a cine-MRI and they claimed it was fine.  I've been blown off by TCI, Mayfield and Wisconsin Chiari Center.  They did not have this note, but they had the MRI to look at!  It infuriates me!  I guarantee once I'm upright the herniation is far greater too and the CSF flow is restricted.

See....so this once again confirms that I'm really not crazy. There really is a problem but these Drs just refuse to say so. What other evidence do they need?? I just don't understand or know what to do.

Thanks for listening.....

Di

[jiggle93]

I agree with Selma, try Dr Henderson. I happen to know a few chiarians that he has helped with this...they HIGHLY recommend him!

[selmaS]

  Hi, I totally agree with u on several points...but getting ur records is one I always say to do...it is a MUST !!

AS for getting blown off by TCI and Tuffs...it could be that the issue u have is not one they r proficient in.....

Have u tried looking into Dr Henderson .....I know he has done this type of surgery for others...research a few and see who will help....I know it is a problem with in a problem....not fair and very frustrating.....

Hang in there and do not give up....