Good CSF Flow?

[Smonnot]

Hello, all.  Another newbie here, looking for some information. They recently found a Chiari 1 malformation with a 6mm discention. Both my family dr. and a neurologist have told me that it is an incidental finding, but I have a great number of symptoms. The neurologist said there is plenty of room around the cerebral tonsils for fluid flow. Is it possible to have this much pain with good fluid flow?  Anyone else experience this?  I have an appt. with a neurosurgeon next month but I don't want to waste time and money if the chiari isn't causing my symptoms?

Thanks!

[selmaS]

I have a sister that can really stretch her skin as well.....it is unsettling to see....

Yes, I did have surgery and I do feel mine was successful.The ways you feel is normal for this and very typical.....we all have the same feelings once we are DX'd and trying to figure out what is next.

I find, listening to our bodies is very important.....we can not push to do things as symptoms will flare up.....so I try to limit what I do..I never went back to work...but I was out b4 my surgery for 2 other surgeries due to a fall related to Chiari and used up all my FMLA. Plus what I was doing or what my boss wanted me to be doing would have been too much to go back to.

I was your age when I was DX'd...didn't have surgery until a year later.....I am 6 yrs post op now.

Symptoms do come and go for me still...nothing like b4....as I had drop attacks...reason for my 2 surgeries....so, I am better...but I do have other related conditions....this is why it is best to know b4 surgery as those related conditions can affect how you feel and heal post op.

Hang in there <3

[Smonnot]

Hi again.  Wow - I appreciate your information and insight.  I did some reading on EDS and that seems to fit as well.  Also the family component.  My mom has some of the same issues that I do (although not as severe) and my brother has this weird ability to stretch out the skin at his knees and elbows to a disgusting length! :-)

Questions for you... have you had surgery?  was it successful?  what else do you do to manage all of this?  I am currently on leave from work and really need to get some sort of treatment if I even hope to go back!

I am feeling very overwhelmed, scared and sad too...

[selmaS]

  I was DX'd with those as well....not until I got to my Chiari Dr did I find out instead of fibro mine was Ehlers-Danlos which is related to Chiari.


Do keep us posted on what you find out....if possible get a few opinions so you can compare them and weigh which Dr is right for you.

Just know you are not alone <3

[Smonnot]

Thanks to both of you. I really appreciate it!  I guess I'm not feeling at all confident.  For the last 16 years, I have been misdiagnosed, mostly with fibromyalgia, or told I'm depressed.  There's a part of me that fears I'll go to the specialist and hear more of the same.  I did do my research and am seeing Dr. Daniel Prevedello at OSU in Columbus, OH - I feel pretty good about that as I saw positive things about him on this forum and elsewhere.  Thanks again!

[selmaS]

  Hi and welcome to the Chiari forum,

I will agree with all KerriC1 mentioned above in her 2 posts.....it is not the length of herniation and Most Drs will say it is an incidental finding....as they are not familiar with how Chiari can and does affect us. It is the flow, but without a CINE MRI I am not sure I would go by a Dr that is not a Chiari specialist as to the flow being ok.....then there is the over crowding, kinked brain stems, and compressed brain stems, compressed nerves....

Then there are related conditions like Syrringomyelia, ICP, POTS, sleep apnea,tethered cord, and ehlers-danlos.

It can be a long and bumpy journey.just know you are not alone.

[KerriC1]

I should also mention that at the time of diagnosis my cerebellar tonsils were at 7mm which is finally gave a name to this condition but it isn't the size of the herniation that matters, it's obstruction to flow, kinking of the brainstem, and overcrowding that cause the symptoms. Once you find a chiari specialist to get all the testings done it will all make sense. Just takes time and lots of patience. It is a journey to say the least!

[KerriC1]

Hi. I just thought I would share some of my experience.  For 15 years I dealt with strange symptoms that everyone thought was ms. When I finally got diagnosed with chiari I had to get copies of past mri's and read on the report that  the cerebellar tonsils were 4 mm not classified chiari, only I was never told that.  Fast foward and with the help of this forum and advise of wonderful people I sought out a specialist who said the csf flow was diminished, my brainstem was lkinked and I had significant overcrowding of the brain. There are many things that cause symptoms and most non specialists tend you view it as incidental.

I am almost 8 weeks post op and it's still a struggle but having the answers you need will require a well educated dr! Best of luck to you!