I need some advice on my csf flow study results.

[perkyhay]

I have been decompressed 2 times (in 2014).  Both times the dura was opened and I had a c1 laminectomy as well.  My headaches never fully went away, but the have been becoming more frequent lately.  Went to the neuro and she ordered a CINE and I just got my report (I go back to the neuro in April).  Heres the impression from the flow study...

CSF flow study: There is crowding at the foramen magnum in the ring of C1 with no demonstrable flow posterior to the cerebellar tonsils. There is CSF flow anterior to the cervical medullary junction and at the foramen of Magendie.
I think this means I am blocked again.   I just don't know where I should turn next.  Any advice?

[selmaS]

Hi and welcome to the Chiari forum.

As KerriC 1 mentioned it does indeed sound as though you have yet another CSF obstruction and could be scar tissue.
May I ask, were ALL related conditions ruled out prior to surgery? And what type of dura patch was used?
Next, as KerriC1 asked, do you have a Chiari specialist?
It's possible you have something other then just scar tissue causing the obstruction and only a Chiari specialist will know to look for them.

[perkyhay]

I had both surgeries with Dr. Oro, but I have heard that he isn't seeing past patients at this time.  I'm wondering if that obstruction can cause more problems that headaches.  Because I don't really want to have surgery again.  Also, if scar tissue is the culprit won't it just keep coming back after any surgery .  
I know I had tests for instability,  but no tests for other conditions.

[selmaS]

I'm sure he checked you for Ehlers-Danlos-Syndrome which could be why you are having scar tissue issues if that is in fact what the issue is....and I am sure he looked at you for a retro flexed odontoid as well....
It's possible your body just tends to over scar.....
It's really hard to know what is going on since you did in fact have  a Chiari specialist and one of the top one's at that.
I would strongly suggest contacting Dr O and seeing what he suggests.....I am not sure why since he's back to treating Chiari patients he wouldn't see past patients.

[Lisagchiari]

Where is Dr. Oro located ?

[perkyhay]

Update...  my neurologist called this morning and wants me to see a NS about the MRI findings.  So I called Dr. Oros office and he is seeing former patients.  I will be filling out paperwork and once they have the chance to review it and my MRI it sounds like I will be seeing him again.    So I guess bad news and good news.  
Dr Oro is in Aurora, Co.  

[selmaS]

I am so glad you contacted Dr O's office , sometimes the rumors we hear are not always the best way to get info....straight from the horse's mouth is best....

Keep us posted on what you find out. WIshing you all the best.

[KerriC1]

Yes it sounds to me as though your flow is blocked again. Posteriorly is exactly where chiarians have that problem. I’m no dr of course, just went through 2 surgeries myself.

My second was due to significant adhesions and scar tissue completely blocking the flow. And I wonder if that could be an issue for you also

Do you have a chiari specialist?