Hi all. I’m glad to have found this support group. I knew there were others out there when I first learned of my diagnosis in 2009, but at that time I wasn’t looking for others because I was asymptomatic and it was found by chance. Today however things are different. I’ve been having a lot of trouble with numbness in my extremities. It makes it hard for me to do my job and it scares me when it interferes with my driving. It has become more constant in my life when a few months ago it was more intermittent. My first MRI (2009) showed a Chiari malformation of 15mm. The MRI last week measured the Chiari at 17-18mm. FIRST question: is this progressive??? Or just different radiologists measurements? My SECOND question involves relief - has anyone found relief for the numbness? Is there a particular exercise or sleep position, etc??? I have an appt with my PCP on Monday and I’m formulating questions for him. I don’t go back for neurology until the end of November and want to be prepared for that visit as well. I’ve ordered two of the books listed on the resource page and am hoping those will provide insight as weel. LAST question today: do any of you have a diagnosis of Ehlers-Danlos as well or have a sibling with it? Thanks! Looking forward to getting to know you better!
I was wondering the same about the change in herniation. In June I had an upright MRI that said 7mm but in July had a regular MRI that said 8mm. Very confusing.
Hi Carrie,
The size of your herniation did increase. However, it depends a lot on the MRI & the angel of the picture and the Radiologist measuring vs a Neurosurgeon measuring your herniation. The increase falls within 3mm & that can very easily be an error. Most Neurosurgeons are more interested in your actual symptoms & if you have CSF flow issues. Definitely ask your Dr's about the Herniation differences but I have read & been told by Neurosurgeons about the fluctuation in the actual size of the herniation can be +3mm or -3mm. Where exactly are you having numbness? Most of the time it is a nerve issue, but I can give you a better answer when I know the location. As Beeba has said we have a couple of Discussions on EDS currently. If you go to the upper left of the Discussion page there is a search box. That will allow you to search all Discussions that have been on this forum about EDS.
Tracy Z.
Hi Retro Mommy2,
It is very normal for different Radiologist to differ within a few mm. of your herniation size. The most correct answer you will get is from a Neurosurgeon. Mine doesn't even want any radiologists to read my MRI's. He said he has been a NS for almost 50 years and can read them better & has more experience than even Neuro Radiologists.
Retromommy2 said:
I was wondering the same about the change in herniation. In June I had an upright MRI that said 7mm but in July had a regular MRI that said 8mm. Very confusing.