Need some advice Chiari Malformation.

[azztastic]

Hey guys, I could use some advice.  I had surgery for my chiari back in January, and I have had 10 more surgeries. They mostly been reexamination of my craniectomy, 2 shunts, and 2 for shunt problems. My problem is that I keep developing a pseudomeningocele. When they have reexamination of my craniectomy they did look for leaks and fixed the ones they found, but I keep leaking csf fluid. I got released from the hospital earlier this month. I was in there for 40 days, and had 5 surgeries. It started with a shunt malfunction, and they replaced some parts on both my shunts and they tried to get my shunts setup to try and help with my headaches. I did have a complication that I had to have a surgery for. I'm currently waiting to get an mri to see if I'm still leaking, but I don't know if I should see go another neurosurgeon, or go to a place that specializes in chiari. Thanks Robert

[Bebeethoven]

The short answer is a neuro. is not the place you need to seek a neuroscience center with all the latest equipment. because I've been told there nothing wrong neurologically except I saw my MRI image and I have  CM1.

[selmaS]

Hi and welcome to the Chiari forum.

May I ask, did they rule out Ehlers-Danlos? Did you have a dura patch placed during your PFD? If so, what type was it?

I would definitely suggest  seeing a true Chiari specialist especially with all the complications you have had so far.....

I have another question, what were your symptoms that you had the surgery?

[KerriC1]

I’d also like to add that sometimes the leaks aren’t as obvious on MRI. Mine was found by my neurologist using some 360 degree specialized MRI images. It was the upper thoracic and was classified as type 3 leak meaning it leaked from the spinal cord into the veins

[selmaS]

Kerri thanks for adding that info...as that is not well known information on CSF leaks.

[azztastic]

Mine leaks in my neck and comes from the dura patch. I have had 1 come undone and the last  got ripped in the middle and it also started to deteriorate. I can't remember the names but this last time they used a piece a of ligament or something like that they got from above my craniectomy. My symptoms were headaches , balance problems, numbness, arm tremors, I've also had a couple seizures. He never mentioned anything on Ehlers Danfoss. Do you know any good places or doctors around Montana?

[KerriC1]

Selma you’re right, not much is known about that at all. I’m lucky he found it!

Azztastic, I’ve had 2 decompressions. The first one I had a bovine patch and mesh plate put in. During the second one it was discovered that my patch mostly deteriorated and stuck to my brain along with brain tissue that had woven through the mesh plate. So I’m certain I was leaking from there also. I have high icp which forced the leak at the thoracic level and I have non epileptic seizures. They mostly plague me when I’m lying down and now I realize it’s due to the high pressure. Very strange.

I also have EDS and that’s why Selma asked about it for you because if caused rejection of foreign objects which could very easily explain your issues. Also it makes us very prone to have CSF leaks

Selma will certainly give you the drs list for you to research. You sure sound like you need a chiari specialist

[selmaS]

Hi....we do not have any Drs currently on our list for Montana...but we have two listings for Colorado. Do you think you could go there? Many of us do need to travel to get to a true Chiari specialist as the only thing rare about Chiari is well informed and experienced Drs.!! If you can go to CO, then here are two names for you to research.
Keep in mind this is not a referral nor an endorsement of the Drs, only names of Drs members here have been to, treated by and liked....you do need to educate yourself on Chiari and ALL related conditions so you will know when you have the right Dr for you!!

COLORADO

Dr.Hans Coester
University of Colorado
Formerly
Poudre Valley Health System
970-495-7421
Fort Collins, CO


Dr. John Oro
Chiari Care Center
Aurora, Colorado
(303)-481-0035