CINE MRI Results

[captal]

Hello all, so today I learned that I have a " mild Chiari 1 malformation"
As indicated by 3 separate MRI,s over almost 5 years, all indicating herniation ranging from 10mm 2011 to most recent CINE showing 6mm
Left and no specific measurement given for right " cerebellum tonsils are mildly low lying with asymmetric (left greater than right) downward projection below the foramen magnum. There is resultant mild kinking at the dorsal cervicomedullary junction.
CINE phase-contrast CSF flow imaging demonstrates minimal detectable CSF flow across the foramen magnum dorsal to the cerebellar tonsils and cervicomedullary junction. There is narrowed, but present ,CSF flow across the foramen magnum ventral to the cervicomedullary junction.
So.....once again I have "mild Chiari" mild kinked brain stem,
" mild CSF flow reduction"
None of which is responsible for the pain I'm in everyday of my life. I guess that must be " mild " too!
Sorry for sounding "mildly " cynical here but really! So I was told that this was not because of any childhood blows to head that I did experience( and there was nothing mild about those, I won't bother going into the details of having my skull busted open in a swimming pool at the age of 6 or the 60+mph bicycle impact with a parked 1970 ford maverick at the age of 7 or the concussions that went along with those. Either way I was told NO
Those things had nothing to do with this" you were born with this ". But here's the kicker, " it must be something else causing these problems you are having. Then I was told I should see a Orthopedic Dr. To address the various joint pains even though according to the MRI,s I only have " mild arthritis " even though I've tested positive for osteoarthritis and told the Neurosurgeon I'm under the care of a Rhemuotologist and have been for several years now she says " well you don't really need him anyway.
Then suggested possible nerve testing ( both from Drs. In her group of course)
I asked for a 2nd opinion and a referral to Emory in Atlanta which was what I wanted in the first place and had to go through all this BS to get to. I apologize for the rant but if anyone can make any sense of those findings I would greatly appreciate it and if it truly is " mild"
Well that's great and I'll start looking at other possibilities. Thanks in advance, Alan.

[selmaS]

  I am sure your joints are still flexible, but the muscles around them are not and may prevent you from doing some of your "tricks".....I never thought I was  hyper mobile in my joints since I felt so tight...but it was my muscles trying to do the work of my ligaments and other tissues that are to hold things together...since they were lax my muscles tightened up...another reason for all over pains.

Thanks I had a wonderful Easter....as I hope you did as well....spent the day at my daughters.

I can tell you are a proud poppa....lol...and rightly so....a vet tech...she must be very special.....anyone that loves to help others in need is very special indeed. <3

[captal]

Yeah we had both talked about that because she has hyper flexibility in several joints(mainly in the hands) I was also (double jointed) both thumbs as a child. I could make them do this crazy looking thing where the first joint from the palm would push inward towards the palm and kind of wiggle- dance around. Somewhere along the line I just stopped doing it and my joints aren't quite that flexible anymore. That may be genetic though because she just informed me that her thumbs do the exact same thing as well as her next older brother. One of her Drs. At Emory did tell her that her spine is over flexible. They also did DNA testing for spondylitis because of the psoriatic arthritis because she exhibited all of the symptoms yet the testing did not show any positive result which really confused them because they actually expected to see a positive and were going to treat her as if she did have it because of the great majority of symptoms. There was also an unexplained cracked vertebrae in the lower spine that she was told by another Dr. That she was born with as well as it seems that the pelvic bone attempted to grow an extra whatever the large bones on each side of the pelvis are called. She also just informed me after going to our family Dr. Where she told him ( or tried to ) about all the similar symptoms we seem to share(and getting blown off) that she asked to have her hight measured that she appears to have lost 2". She was 5'2" and now apparently measures 5'0". So with all this I am certainly concerned with related conditions and also the Psoriatic Arthritis and possibly of EDS
And Chiari and maybe others as well.
And that possibly my own situation is not as black and white as just Chiari and Osteoarthritis or whatever else is yet to be determined once I can finally get to a specialist. She is currently training to be a Vet Tech with a local Veterinary clinic and they are extremely impressed her abilities, even though they know about her health issues, she is already assisting in surgeries in under 2 months on the job and VCA which is Veterinary Clinics of America fully expects to see her full scholarship-ed through college to become a Veterinarian or Vet Tec whichever she chooses, guess you can't tell Daddy's very proud of his little girl can you? I also worry about her pushing herself too hard because I know where she gets that from. Thanks Again Selma any input is always welcome, you have become my Guru of all things Chiari!
I Hope you and yours have a blessed and wonderful Easter Holiday!
Capt. Al.

[selmaS]

  The kink is not caused by sleep apnea but sleep apnea may be caused by the kink...so treatment for the apnea may have no affect on the kink what so ever....sorry it will not address CSF flow either..

Sounds like your daughter may have EDS with the all over pains....

If your daughter is having issues, she may want to rule out Chiari and ALL related conditions...she may not have Chiari, but could have a related condition.....and you are right it is more genetic...and tends to be in families...but we do not all have the same thing even with in families....but worth her having a look since she is having some issues...

[captal]

Yeah, a lot of that definitely makes sense. It would be better if the kink was caused by sleep apnea over some of the other conditions it could be. At least that can be tested for these days by means of an at home monitor type device and straightened out with treatment over time. I wonder if addressing that issue might also improve the reduced CSF flow problem if taking care of the apnea takes care of the kink?  But that sounds too simple but who knows I was under tremendous pressure in a really difficult environment for a LONG period of time working the way I was. I have no doubt that I have osteoarthritis in many major joints all over my body and that that definitely plays a part in my pain level as well unless that is a misdiagnosis. One thing that troubles me in the misdiagnosis department is the fact that my youngest child(daughter) now 18 was diagnosed with juvenile psoriatic arthritis at the age of 10. Back then the Drs. Searched and tested for everything under the sun and could not come up a reason for her body wide pains. It wasn't until we were in the process of moving to the Atlanta area that I remembered that she had one of her fingernails that had like a sandpaper like apperence to it that she had been covering with fingernail polish because she was embarrassed by it and brought that up to the new Emory Pediatric Rhemuotologist that they came up with psoriatic arthritis. But now I have to wonder about that diagnosis as well because at 18 her symptoms are eerily like mine and we have spent quite a few hrs. here lately discussing just how similar they are and I'm concerned for her ,worse than mine ,even though she's a real fighter and always has been and keeps herself in very good shape and stays as active as she possibly can. I have to wonder now if she could possibly have Chiari as well. I've read that it tends to run in family clusters so that's another reason for me to find out all I can about where I actually stand in this incase she and her two older brothers need to be aware that this is something to watch out for but don't want to needlessly alarm them either as they already know my situation isn't exactly all sunshine and ponies.

[selmaS]

  Oh I know what you mean,,,,, I would get a sharp stabbing pain with a cough, or sneeze, laughing or ( TMI a BM) but I would not call it a headaches so, the Drs and I had a go round about that too.

Sleep apnea is likely a cause of the kink.....

Work was also causing me to not sleep properly either....I was working 70 plus hours a week and not sleeping....I was just a shell of myself and felt worse as time went on....I knew I was going to break or crack up or something if things continued the way they were....and I too felt I was better off then most oh here....but my Drs explained some of the symptoms I did have showed that I was being affected more by the Chiari then first thought since my herniation was not really that big...BUT I also had a partially retroflexed odontoid which along with the herniation was causing CSF flow to stop intermittently....causing drop attacks....so keep in mind only you know how it is not only affecting your life but your over all health and do not compare your issues/symptoms to someone else's as they may have more going on, but your issues are just as life altering to you as their's are to them.

[captal]

Hello again and thank you,
The first MRI in 2011 only shows
"High field MRI scanner" without contrast
The second MRI in 2/2016 shows
1.5T and the CINE was a 1.5 Telsa.
I know this Dr. Is not a specialist but I'm doing all I can at this point and jumping through the hoops they want me too. I apologize again for the rant.
Just blowing off steam I guess, I have to let it go some how. The kink in the brain stem does worry me some, she mentioned sleep apnea as a possible cause? Or would more likely be a symptom of rather than a cause of the kink. I told her that my headaches really started bad enough to send to my family Dr. around my late teens to early twenties and that up until that time I could sleep 20hrs. If chose to do so but around the same time as the headaches sleeping that way has never been the same since. With all the years on boats added to it, especially the last 20 years, there have been times I was forced to stay awake for days (up to 5 )without sleep or weeks where at best all sleep for the entire week may have only at best totaled 10 to 12 hrs. This was more the rule than the exception even though it's not supposed to be like that. Then you go home and you're supposed to be able to "rest" but your circadian rhythm is so distorted that you never recover before you're back under the gun. I remember back when I did sleep right because I always had wild vivid dreams that I would remember on waking. Those also went away, and almost never dream anymore. In short the conditions I worked under for so long were very hard on me and really have to wonder if it's not a contributing factor in all of this. I mentioned to her that several years ago as a result of checking into all of this that I had a neucular stress test done and one of the findings by the Cardiologist was that one of the chambers of my heart was slightly enlarged suggesting sleep apnea. All else was ok. Sorry for the length here but in end I will finally get to talk to an Emory Neurosurgeon and several people on here seem to have gotten satisfactory results there. At least maybe I'll get better answers. Dr. G}¥<{¥ wanted so badly for me to tell her that I got headaches when I sneezed or coughed because those were more classic symptoms associated with Chiari. It was almost like if I had said yes I get headaches when I sneeze I would have been taken more seriously. I told her from the start that the Topamax has really helped the headaches and that there is no rhyme or reason to when they decide to come or go, yes sometimes sneezing or coughing when sick with a cold makes it worse, sometimes simply opening my eyes from " sleeping "
On the boat brought them on or nothing at all brought them on just Wham here you go have a nice headache for next 3 days or simply short lived bursts of pain out of nowhere. Or sometimes I get a warning and even that changes because it can be that I feel really bad the day before a 3 day or week long period of major bangers or I can feel really good for a few days then Wham
And I end up telling myself " yep you should have known better, should have known this was coming" or maybe it's that I'm suddenly sensitive to light or glare then Wham, major banger, short of it is some warnings I can see coming others I can't and how do you explain that to someone who only wants hear that you get headaches if you sneeze? I really almost feel guilty here because I know that others on here have it so much worse than me and the time that I have been off work since January has made a difference in some of the issues I've been having but reality is knocking at the door and all this is taking too long and going to be forced right back into the same environment that was killing me a 6 hr shift at a
time and it really worries the hell out of me because I haven't resolved much only stirred up more questions it seems. But I intend no matter what to keep working my way towards a True Chiari Specialist by whatever means it takes until I get some real answers.
Maybe I'll hear from Emory in a week or so like I'm actually supposed to and that will really be the beginning. Thanks again for being a shoulder to lean on Selma you are an angel!

[selmaS]

  The only person that can call your Chiari MILD is you ! These Drs that use the length of herniation to classify it as MILD bug the heck out of me....no one should be told their condition is MILD......again this Dr is not a Chiari specialist and you need to find one that is to help you figure out what to do about the kinked brain stem.

Were ALL the MRI's you have had over the past 5 yrs done on the same machine? 1.5 telsa?

[captal]

Hi Selma, how are you? Hope all is well. You are correct. It was the same Dr. That ordered the CINE MRI and this Appt. was the follow up for results. I asked for 2 copies of the disc on completion of the test so that I'd have an extra copy for my records and didn't get to see the report until today. On looking at the disc at home the first thing that caught my attention was the kink in the brain stem and on looking into that what I came up with was " basil invagination " at c1 c2 and I had to ask her about that as she pretty pulled up about the same image that I had looked at. She wouldn't have mentioned it at all if I hadn't asked about the length of the bones at c1 c2 but she said that they looked fine and that nothing was off about the shape or position of them so ? Don't know there. But the kink doesn't look all that mild to me  
The MRI is shown as
1.5 Telsa pre-contrast Sagittarius and
Axial T1w, and axial T2-FLAIR,GRE, and diffusion -w sequences of the brain with ADC maps. Post- contrast axial fat-saturated T2w and T1w , and sagittal volumetric T1-w images of the brain with axial and coronal reneformations. CINE phase contrast imaging through the cranio cervical junction. Intravenous contrast material was administered

[selmaS]

  Hi it sounds like your Dr is not a Chiari specialist.....do get copies of your MRI and reports....kinking of the brain stem is something that should be looked at further....

Plus you have some discrepancies in the length of herniation...this can occur for several reasons....one that they studies were not done on the same strength MRI...or they were done looking at different angels...and lastly that possibly the tonsils retracted on their own...which is not as common as the above reasons.

Did they do the testing for EDS? Or other related conditions to Chiari? What MRI's were done?