Copies of your Tests

[shanmomof3]

Ok, I know we all say this ALL THE TIME, but i wanted to stress how important it is to get copies of your Tests and records.

I recieved my reports today in the mail from dr. Heffez's office. It was very detailed and gave his report, the NL report, and the reports from all of my mri's. Mainly it was just very interesting for me to read and kinda see what the drs were seeing, but i also learned things i didn't know and some i FORGOT! Imagine that ... A chiarian forgetting something LOL

My husband says he vaguely remembers dr. H saying something about degenerative disc but i dont remember that at all. However, it is very clearly stated in this report. Cervical, Thoracic, and Lumbar. I really didn't want that but at least I know!

The other interesting things i found on the reports were ........ positive clonus, positive romberg, positive tandem, positive Hoffman on right, and my Beighton score is an 8 out of 9.

I think thats all for now lol       If anybody has questions just ask! If I dont know somebody will! Shannon

[selmaS]

....Yuppers....the upside down pear is the best way I know to explain the diff sizes people get....plus I always say it is CSF flow, overcrowding and symptoms that the true chiari specialist look at to determine if u need surgery.

A good NL should be able to dx all issues and should refer u to a chiari specialist.....

[amit_semwal]

Well getting reports is indeed important. And i too understand the importance of going to a chiarri expoert lately.

I was decompressed by a neuro who wasnt an expert it chiari and then neither my family now me knew anything about it..we trusted doc blindly and he made a mess.

Not that what he did was wrong but dics feel he shud have done more. And they feel second surgery is always tougher.

Moreover I had vision probs..like things appear to me like they are moving to and fro..i think its called vertigo...and i skipped a few breaths. But my neuro said they arent related to this problem and we were wasting time with ENT and eye specialist.

my doc even told me I would be perfectly well over time. and that I would never need a second surgery.

He was dumbstruck when tens of other neuros suggested me another surgery and we went to him with their opinions.

but the loss was done

[shanmomof3]

Yeah I forgot something! lol This was the main reason i posted this and the most reason we always stress to get a TRUE chiari specialist! For those that dont know and for those who have been told they dont have chiari or chiari is not causing their problems ..... I have, in the past been told that i didnt have chiari, that i had a small herniation but it was not large enough to be called chiari, and i was also told that my herniation was too small to cause problems.

The following is dr. Heffez's report on my brain mri ....
On some images I measured 4mm of tonsillar herniation and others a mid-sagittal picture would suggest only 1mm with the tonsils to be in the foramen magnum. Axial images, however, show a definite crowding of the structures with a distortion  and a deflection of the brainstem towards the right by prominent left vertebral art inery. Compression has resulted in brain stem being asymmetric and tilted.

So selma, your pear analogy is correct! And this also proves the point that herniation size is not the most important thing! Btw, due to overcrowding and that large artery I have about 1/3 the normal csf flow.

[*Stormy*]

Amen to that....I have learned this lesson as well!!!

[selmaS]

Hey Shannon u r soooooooo right we can not say this enuff get copies of all tests and the reports.....

There r always things we will not know, but like u said someone will be able to answer : )