Cine MRI CSF Flow Study

[TLeigh71]

I was recently, well about a year ago now, diagnosed with Chiari.  Have been in the medical field for over 20 years here in Texas.  My last job was doing Mobile MRI.  My doctor has ordered, ironically, an MRI Study that I don't know anything about, and I am not exactly sure what it's called....medically speaking......I just know he wants me to have a CSF Flow Study done, but I have no idea where to have that done.  I am also not sure WHERE those ARE done?  If anyone has any info on this, or where, in the Texas area, I can go to have this done, I would appreciate the info and any help anyone has to offer.  I have been having bad headaches, blurred vision (for about the last 8 months, getting worse), with other symptoms I have NEVER had before. The doctors just kinda look at you like they have no idea what you're talking about or HOW to help you.  Or they think you just want medication. Which, I do NOT. I have two teenage kids still at home, and have to be able to function on a daily basis.  So if anyone has any info, or advice, I am sure open to any suggestions.  I have been reading on this site, and have found that quite a few people, more than I realized, have these same issues.  It made me feel so much better, and like I am not just crazy. Thanks so much again.  Sorry for the long post.  Just hoping to find some direction, help, advice....anything.  Thanks so much again.  

[selmaS]

  Most meds only seem to be effective for a very short time with Chiari pain....have you found a Chiari specialist?

Have you had any more testing?

[TLeigh71]

Thank you all so very much for all of the comments and support...most of all.  It does give me  peace of mind to know I am not losing my mind..or making this stuff up. I just hate when the doctor looks at you and says.....No, I don't think that's what's causing your symptoms, yet I still have all of them.  Had Basilar injections, which did help my headaches, but they always come back. It is so frustrating.

[DSH519]

I had the symptoms when I was decompressed in 2001 and was symptom free for 14 years. Now the same symptoms are back, overnight, with the same difficult time getting a true diagnosis. The Chiari specialist is vital. If the decompression surgery is needed again I will not think twice about doing it again. I urge you to find the best neurosurgeon possible. You will get the correct diagnosis and treatment from a specialist.

[selmaS]

  http://www.medhelp.org/posts/Chiari-Malformation/-Chiari--Drs-list--links-2015/show/2415432

Use this list to find Chiari Specialists near you, the list is not a referral nor an endorsement for those listed on it...it is a tool to help you start researching Drs other members here have been to, treated by and liked.

Be advised, you may need to travel...

[Lottida]

I woke up 1 morning with right ear stuffiness & thought I had fluid in ear too.  My PCP gave me Prednisone to dry up any fluid which of course did not work.  I went to ENT by the 3rd day & had steroid injections through my ear drum into middle ear (OUCH!!!) in an attempt to save hearing & he also ordered MRI which showed Chiari.  I had significant low tone hearing loss & it sounded like a helicopter or some big machine was stuck in my ear which was Tinnitus.  After 3 weekly steroid injections, 81 oral steroid pills & much weight gain (Ugh!!!), I still had this pressure in my ear with dizziness/off balance feeling.  The best way I could describe it is that every so often during the day it felt like I took a ride on the tilt-a-whirl!!!  I also had this pain in my eyeballs, sensitivity to light, pressure at base of head, headaches with laughing/sneezing/straining, blurred/distorted vision & numbness/pain down right arm.  I actually had to look at my feet when walking to manage the onset of dizziness/off balance.  Prior to 2-6-15, I was normal!!!!  The neurosurgeon that I actually trusted told me it was anatomically not possible for the Chiari to cause my symptoms because it was only 8mm herniation.  Now, I am a nurse & knew that was total crap!!!
I am here to tell you it IS anatomically possible!!  Oh & I was missed diagnosed with Meniere's disease by ENT.  Many people get missed diagnosed, blown off, or sent to psychologist until a true Chiari specialist accurately diagnoses your problems!!!!!

Don't be afraid to push forward......only you know your body the best to know something is wrong!!!  It may take several MD opinions b4 you get where you need to be.  Try to find a true Chiari specialist......some will review your records for free b4 accepting you as a patient.   I had to drive 1 1/2 hrs away to Baton Rouge (despite the fact that I work at a hospital 5 min away). Have you reviewed any of the doctors on this forum that are Chiari specialist in Texas??  A specialist will definitely not blow you off b4 ruling out all possibilities.  Surgery is not for every Chiarian & is only indicated if there is a CSF flow problem or presence of a Syrinx.  I would also find a good Opthomologist knowledgeable in Chiari........I had severe optic nerve crowding on both sides which is what was causing visual distortion, eyeball pain & blurriness.  You will need a CINE MRI to determine if CSF fluid is flowing or not.  Good luck & continue to post here for support.  We all know how you feel & you are NOT crazy!!!  This site gave me peace, knowledge & kept me sane during the research period!!

[selmaS]

  Hi and welcome to the Chiari forum.

I never heard of the flow study or CINE MRI when I was told to get one as well....and what I found was that most MRI Centers are able to do them...and since you are close to a large city I am sure there is one near you.

And as the above poster mentioned it is a MRI that shows the movement and or flow of the CSF so your Drs can tell if it pulsates with your BP and if there is an obstruction to the flow.

Finding a true Chiari specialist is key! You need to be checked for ALL related conditions so a MRI of the cervical , thoracic and lumbar spine to rule out disk issues , syringomyelia (syrinx) and tethered cord...then testing to rule out ICP, POTS, Ehlers-Danlos, sleep apnea...etc....


And having a true Chiari specialist over just a NS is very important as the specialist researches and knows ALL related conditions and will take precautions for them....a reg NS may not be as informed and not know the relationship and how these other conditions may be affected by surgery.

I had surgery 6 yrs ago this month and have no regrets and if needed would do it again....

Know you are not alone.

[TLeigh71]

I live about 2 1/2  hours away from Dallas.  I am having the same symptoms that you described...it just feels like I have fluid in my ears or something. And was almost overnight that it happened.  Kinda feels like someone has their hands over my ears. Does that make sense?  I went and saw the neurologist yesterday, for the second time.  I had already seen a neurosurgeon (who also did my back surgery about 2 years ago, and was amazing), but when I went to see him for this, Chiari, he only spent about 5 min talking to me, said he didn't think that the CM was what was causing all my symptoms, and sent me to a neurologist, who I am seeing now.  It's very frustrating.  I have bad headaches, EVERY DAY, worse when I first get up in the morning, blurred vision and having to wear glasses,that I have never had to wear in my life, and lose my balance once in a while. I don't know what else to do, or who to go see. My insurance is Tricare. So I thought that maybe I should just call them to see where the closest imaging center is that can do this study.

  It does make me feel better to know that other people, like you, have had similar problems with this, and are now doing better.  That is all I want, is something done so I can resume the quality of daily living I am used to. Know what I mean?  So your help/suggestions are greatly appreciated. It's the most help I have had since this started.  So, again, thank you!!!  

[Lottida]

I'm curious what area of Texas??  I live in South Louisiana & am also in the medical field.  I like you had never heard of a CINE MRI either, but once I found a Chiari specialist in Baton Rouge realized that the MRI machine at the Neuro Medical Center of Louisiana is the "Mack Daddy"!!!  The hospital I work for has wonderful equipment, but not nearly to these standards.  From what I understand it takes 16 pics per second & monitors the flow of CSF fluid with each heart beat (looking for any obtructions or interruption in flow).  I had it done & it is much faster that the typical MRI.  I do know that in Louisiana only Baton Rouge & New Orleans is able to do this test, so maybe you could check with your nearest big city or any hospital that is known for trauma/neuro.  

I had many of your symptoms too, but only started in Feb this year.  I am a nurse & was dizzy for 7 weeks on/off on a daily basis and lost hearing in my right ear.  I did have a CSF occlusion & required surgery (4 weeks post op).  Were you checked for a Syrinx or any of the related conditions??   I would suggest finding a Chiari specialist......trust me it will make your life so much easier!!!  My husband had his decompression in 1997 by 1 of  the NS at my hospital, so I went to see him.  Now I was a post op nurse for 15yrs & this doctor knew me well.  He blew me off like I was crazy!!  I knew something was wrong & did not want to live on pain meds nor accept the fact that I lost my hearing overnight by some virus!!!  Most of my symptoms are gone & my hearing is now normal!!  I am now driving again & will hopefully be back at work in 2 weeks.