Guess what ive received and u would not believe...

[taylapj]

So i requested all my scans etc for my private appointment next week, all i wanted was to get a clear diagnosis in order for me to just 'settle' my mind as to why i have been so ill on and off for the past year.

Some of you may know, all of my NL appointments since i have had my MRI have been cancelled by the NHS.
Today i received a letter from my Consultant to My gp [Nice to be copied in] confirming diagnoses of

'Mild' Chiari Malformation.  

However, this is funny - she has put on there that this does not explain my symptoms ........... What do you guys make of that??

[*Stormy*]

No worries...GOOD LUCK...my fingers will be crossed for you!!!

Carolyn

[taylapj]

This is who i am going to see on Thursday, thanks to Carolyn for all the support in questions i need to ask much appreciated ;-)

http://www.privatehealth.co.uk/privatespecialists/consultants-directory/?entryid43=28845

[*Stormy*]

Agreed...not just another Dr but a good NS...you are not going to get what you need from a NL.

Have you thought about sending your scans to TCI to see what they say? Unfortunately, if you have a smaller herniation it makes it even harder to be listened to...which is ridiculous b/c it can cause symptoms just as badly. Which is why you really need to find someone that know their stuff!!

Good luck next week...I really hope you get the support you need from this dr!!

Carolyn

[n40066]

i'd say she seriously needs to be educated about cm!!!  if you can, find another dr!!!

[lu7997]

Depending on where it is and what scan u were looking at. But yes. U would be able to.    And the measure from different points draw a line at an angle and then measure down from the line.  I appoligize that I do not remember the points names.   It isn't a straight line though.   I have a "mild" chiari as well with a 4 mm herniation. And more problems then I could imagine.   I can't find a NL to acknowledge this as the cause for my problems. I for lucky though and have a good NS.    Shop around until u feel comfortable with what u are hearing from your docs.   They don't know everything. And the ones that aren't willing to say they don't know much about this and help u find some one who does would not be a doc I would want.   Good luck. : )

[taylapj]

Ok, thanks mate!! How do they measure the size then?? It's all so interesting! Was looking at my MRI scans on disc today, it's so clear it's freaky lol I can't see a sphinx (sp) which is good but then I havnt got a trained eye, pretty sure you would be able to see it tho.

[rod44]

Yes it could be, usually they look at the size as well as the amount if any of CSF obstruction & overcrowding. Their is a some controversy about the way the measurement is made and what size is regarded as being problematic.....  

[taylapj]

So is 'Mild' considered less than 5mm???

[rod44]

Most NS use a herniation of 5mm as part of the DX. They believe that less than 5mm can not cause symptoms. People who have mild or minimal herniations will tell you different. Some NS recognize symptomatic CM of less than 5mm (Chiari 0) so it is important to find a NS who knows CM.

Ray