Hi and welcome to the Chiari forum.
B4 you consider surgery ALL related and non related conditions need to be ruled out....it sounds like you could have a CSF leak or POTS....It is very important the Dr you see knows to look for and rule out every related condition as they can affect recovery should you have surgery....
It is not a matter of sooner then later unless you have Syringomyelia...which is one of the related conditions....if a syrinx is present already surgery sooner then later is best....but if a syrinx is not present then you could hold off while having more testing and or trying different ways to treat the symptoms you have....
I can post some names of Drs they are not a referral nor an endorsement of those listed.....use this list to research Drs visit a few, compare them...educate yourself on Chiari and ALL related conditions,
Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD 20706
(7830 Old Georgetown Rd. Bethesda, MD
Dr Marcella Madera
The Johns Hopkins Hospital
600 N. Wolfe Street
Baltimore, MD 21287
Appointment Phone: 410-550-093
SelmaS, thank you so much your response is so helpful you have no idea!!
I'm sorry but I've got a few more questions...
How is the cine flow test done? Is it always done when getting a cervical MRI? I've had 3 Nuerologist look at the same MRI. One recommended I get the cine flow test completed. The other 2 said it looked like the flow in front was okay but might be blocked in the back.
I originally went to see Drs long because my cervical MRI said I had an 8 mm nonspecific cysts and my lumbar region mentioned cysts possibly tarlov cysts. Drs long said the cysts aren't in my spinal cord so I guess they are the 'bad' cysts(can't remember the official name now). Any chance you've heard of tarlov cysts?
Do you recommend steroid shots? They didn't work the first time and my chief complaint is the autonomic issues. I also feel like my cervical area is tighter now than before the first round of shots if that is possible.
Can you please recommend books and websites to help continue to educate myself?
Thanks again for helping me and all the others you've supported on this forum!!
CSF flow is always blocked to the rear for those with Chiari....and a CINE MRI is done in a similar fashion to a reg MRI....it is generally done in 2 parts....the first is the same as a reg MRI....the 2nd half, they bring you out of the tube to inject contrast and clip a BP monitor on your finger or add them to your chests area....the CINE part is a moving picture instead of still pics....this helps the Dr see how the CSF is moving...with your heart beats...etc...
Tarlov cysts seem to be a common issue for some with Chiari and yes they have come up quite a few times....I did not have them...but know a few others that have.
There are many web sites with info, but we can help educate you right here.....I am not sure of any books at this time....there are some great video's online that many of the Chiari specialists post with some very informative info...that is really the best info....
If you are one of the many Chiarians that also has Ehlers-Danlos Syndrome the steroid shots may not be helpful.....those with EDS can develop issues with meds and anesthetics...so it is best to rule out ALL related and non related conditions b4 trying too many treatments.