Hello,
St Paul here. I am getting conflicting information on what qualifies for a Chiari Malformation. My herniation as of two years ago is only 4 mm but I am extremely symptomatic. I have chronic debilitating pain in the base of my skull by my neck, dizziness, tingling, nausea. I just feel like garbage all the time and no migraine medications help.
I recently had another MRI due to an increase of my pain and symptoms and the results just list "Mild cerebellar tonsillar ectopia with only partial effacement of the CSF in the foramen magnum". It doesn't give an actual measurement, so I am so confused.
Has anyone had really bad symptoms with a herniation not as large as others? I have about had it with not feeling well.
Thanks to everyone!
My NS says it’s not about the size of the herniation, it’s the symptoms and whether or not CSF is being blocked that matters. Did you have a CINE flow MRI? That is the only way to tell exactly if you have blockage of CSF. I’m at 8mm and suffer a myriad of exhausting symptoms daily as well. Prayers and best of luck to you.
Thanks so much for responding Beaches. It is nice to hear from someone who is going through the same thing, although I am sorry you are suffering so much. :-(
I have never heard of a CINE flow MRI before. I just had an MRI with contrast done, nothing else. Did you have that done? I wonder who I would even ask about that. Everyone except my primary doctor (who is not a neurologist) have blown me off regarding the Chiari, saying there are no symptoms with this...:-(
I have an appointment with a Neurosurgeon tomorrow morning. Hoping they listen to me and do additional testing. I am very nervous.
Hi St. Paul,
Yes the CINE flow is typically done in addition to the regulator brain MRI, plus most NS’s will order a c-spine or full spine MRI to rule out a syrinx. The CINE flow MRI is the only way to determine if CSF is being blocked, if it is, then that would be an indication for having the decompression surgery to relieve that pressure and make space for the CSF to flow naturally. Good luck with your appt with your NS! You can ask him/her about ordering the CINE flow MRI for you. I didn’t know what they were at first either, and I’m a nurse! It wasn’t until the Chiari diagnosis that I learned this test exsisted-- heck I never even heard of Chiari prior to my diagnosis either! 
hoping your appt goes well and good luck to you!
Thanks so much for the information! This is extremely helpful and I appreciate it. It says on their website that they treat Chiari Malformation so I am hoping she will know what to do.
Excellent!! And no problem!! You seem to be on the right track now to getting answers and relief! I saw a few neurosurgeons over the last 7 months and ended up going back to the 1st one I saw, he will be doing my decompression surgery (hope to schedule it in a few months). I’ve found this group to be extremely helpful to me too, I’ve learned so much in just a few months! Best of luck to you!
The reason you may not have heard of a Cine MRI is that virtually NO legitimate Neurology practice uses them except possibly a a screening tool for the real test which is invasive and painful a avoided as much as possible (A spinal puncture is a part of it.) The was a short period of time while the possibility of their value was being studied in academic centers that "Chiari Centers" and "headache clinics" were using them to sell surgery. The procedure was used initially to study large blood vessels. It proved to not be all that helpful. Cine MRI was found to be accurate only 60% of the time with chiari..........
http://www.csfinfo.org/education/physician-information/radiology-re...
NOW the Gold standard is Computational Flow Dynamics or CFD. From the article above: "There is in symptomatic patients is synchronous bidirectional flow, that is the simultaneous presence of a jet (high velocity in one region) and a counter jet in an adjacent location in the subarachnoid space (in other words, the simultaneous presence of flow caudad and cephalad). This flow pattern is what is significant not general extent of flow."
Fortunately most of those "cine centers" doing a quick diagnoses based on a few symptoms and a Cine MRI are gone and the "Celebrity" Chiari Specialists behind them have quit. A number were prosecuted, a couple left the country, and others were sanctioned. The websites such as "conquer Chiari" etc still exist. There are far fewer surgeries being done today than even 2 years ago. That not to say Type One can't be a problem but it is very rare that surgery is indicated. Size does matter and symptoms are very specific. The surgery is highly invasive and can cause lifetime pain because of minor scarring. Consequently it is done only in extreme cases.
Before even considering elective brain surgery, get several opinions and make sure at least one of them is from an academic center. Ourcomes from properly selected patients are great and great long term. If surgery is indicated make sure to find the most experienced surgeon you can. Technique is everything.
Thank you and good luck on your surgery!!
TJ1,
Thanks for the wealth of knowledge. Have you had the surgery? My CINE flow MRI was done after all of my regular MRI’s (brain and full spine) and my neurosurgeon is based at an academic facility. It is the Univeristy of Pittsburgh Medical Center. It is not a “CINE center” … My NS initially did not indicate surgery for me, but bc my symptoms have progressively gotten worse over 6 months and due to my CSF being blocked, the surgery is now indicated for me… I’ve read many success stories and have personally talked with a few people from my area who have had their quality of life restored by the surgery, done by the same NS, so that gives me hope, and I’m holding on to that not just for me, but for my family. Thank you again for your info.
By any chance are you seeing Bob Friedlander? I have met him a few times and am pretty impressed. He's a big team approach guy so no one is working "alone" They pretty much staff everything. In any event its hard to do much better than UPMC. Last I heard they did a lot of ultrasound to visualize the movement of the tonsils with the cardiac and respiratory cycles, or to visualize the flow of CSF before and after decompression. They truly understand the flow issues. Best of luck. I'm sure a good outcome lies ahead
Good Luck! Getting answers even if they are not the ones we hope for somehow makes things better. Sometime not all those answers are in a surgeons hands either. We seem to be hearing more from folks with EDS lately. Its one of those things that is now being better diagnosed. Hang in there we are all with you!!
TJ1,
Thanks for the information. This is my first appointment with a neurosurgeon. I am not seeing one from a "Chairi clinic". It is a neurosurgeon connected with the hospital and clinic we have been to for years.
TJ1, yes it’s Dr. Friedlander… He is the chief of neurosurgery there. Are you from the Pittsburgh area as well? They do have a wonderful team approach that I like!
St. Paul, I agree, having answers after years of suffering thinking I’m crazy does make things better, not erased, but provides options and hope for a better future! I also agree with the EDS, I’ve been trying to get tested for this bc I keep hearing about its connection with Chiari… I’m finding out genetic testing in my area is tough! My pcp did send a referral for me and the requirement was an Echo and EKG, which I’ve had both… So I’m hoping they will see me and help me determine if I have EDS as well. I’m praying that I don’t, but I can’t help but wonder after everything I keep reading. And that makes a difference in the way they perform surgery (will do a graft from your own body somehow vs a bovine patch)… I read you can reject the bovine patch sometimes if you have EDS?
No I'm in Montana. I used to get around a bit before I retired
Oh ok… So not close at all! Well, I hope you are enjoying your retirement as much as possible!
Thank-you for the support Beaches! I did meet with the neurosurgeon at my clinic regarding this. When I first met with her, she was skeptical about my symptoms being related. She has a lot of experience with this, especially with pediatric. But when she ordered the CINE test and got the results, she was surprised by the results. It is partially blocked and she recommended surgery and said this WOULD relieve my symptoms. This is not a "headache clinic" either. She told me horror stories about places like that and warned me about them prior to having my CINE study.
Did you have your surgery yet?
Mine does not show up but I am symptomatic. And my family doctor agrees with his and my diagnosis. But I have never had medical support as what to do or support mentally until this forum. I live in the Edmonton, AB area.
Any ideas?
Hi Gertrude. I am so sorry you have been suffering. I understand the years of not knowing and being told it is nothing.
I would suggest making an appointment with a neurosurgeon and before scheduling, make sure they treat Chiari. I had no luck with neurologists, was just blown off as being stressed or having migraines. I wouldn't even bother with them.
Making an appointment with a neurosurgeon doesn't mean you are asking them to do surgery. They will order special tests to determine if there is blockage and then discuss options with you. My neurosurgeon told me she didn't do surgery unless absolute needed and was surprised by partial blockage of fluid from Chiari. I had my surgery May 2nd and am feeling pretty good.
Let me know if you have any questions. It took years to get this figured out. I thought I was going crazy but didn't give up in my fight for answers.
Hi Gertrude
I had a bitty (but wide) protrusion that the radiologists did not report or dismissed (they never did comment on the sagittal view!), consequently medical folk who reviewed the MRI report (not the actual images) also dismissed my concerns as psychological. Prior to joining this forum, I thought that this was unique to Albertan health care, but lo and behold, this concern is every bit as popular in the United States.
A number of neurologists dismissed my concerns until I got pushy with the last one to send me to a neurosurgeon in Calgary. Once there, surgery in a couple of months, no questions. I guess that I had to do the circuit until I found someone who was knowledgeable enough to help. I also went to a psychologist who was willing to offer assistance with my relationship with my mom but did not feel that I had a psychological condition that would explain my symptoms. I made sure to point that out to medical professionals either before or after they started to hedge around the psychological angle. I have no problem with attending if that is indeed what is wrong with me.
Good luck with finding the right people to help.
Gertrude said:
Mine does not show up but I am symptomatic. And my family doctor agrees with his and my diagnosis. But I have never had medical support as what to do or support mentally until this forum. I live in the Edmonton, AB area.
Any ideas?