MRI pictures of my head, Chiari and hydrocephalus?

[samuel94]

I have a short question:
Do you think I could have a mild Chiari Malformation and a Hydrocephalus according to the linked pictures or am I just going nuts and shouldn’t consider bothering more local doctors about it? The MRI was made one year ago for another reason (mainly bipolar vision, I had no clue about EDS and POTS back then so far although I suffered from all the symptoms). The doctors didn’t find anything back then but I asked them for the pictures and got them today and this is what I found. Of course they made more pictures but I made screenshots of the ones where you have the best view imo. I think you can see the brain going down the best in the fourth part in the first screenshot.

Thank you for an answer and sorry for my bad English (I’m German)!

Hint to Dr Diana: I’m really sorry, if I may have wasted your time sending you an e-mail and not posting my question in this forum, I didn’t notice I have to fill in the form in order to ask you questions personally.

http://file1.npage.de/000813/48/bilder/chiari.png
http://file1.npage.de/000813/48/bilder/hydrocephalus.png

[MattiesMom]

Suggestions from a non-professional member:

Was this MRI done with contrast? Mine was not, so I am assuming that may be why yours looks different. Can you make a screen shot for more of the profile/ side pictures? In my very unprofessional opinion, looks like your hindbrain looks kind of compressed… but not necessarily below the skull bone, but I can’t tell exactly because you have white areas on your pictures where I do not.

Also, wondering what is going on with your odontenoid… can’t tell from these pictures. It would probably show up better if you attached a few of the side/ profile images.

[Barbara]

Hi Samuel,
The slice I find the easiest to look for the problems associated with Chiari and Hydrocephalus is the mid-sagittal one – you’ve almost captured it with your first picture but it’s slightly off centre . You need the vertical slice that goes from the middle of the nose to the back of the head. It should show the spinal cord going down the spinal column.
Regards
Barbara
(UK)

[samuel94]

Thank you for the answers!
Yes, at first some of the pictures were taken without contrast and after that some with, I guess that’s the cause for all the white spots. Of course I can do more screenshots showing my profile, I’m gonna post them in a few minutes. I hope I’ll pick the right pictures, it’s difficult to understand for me because of the language difference.^^ I would upload all MRI pictures if I were able to, but this strange viewing software won’t let me and the files on the disc aren’t just pictures.

[samuel94]

I hope this view is better. I think the first one was made without contrast and the other ones with.
http://file1.npage.de/000813/48/bilder/sideshot.png

[Barbara]

Hi Samuel
I’m not a professional either, simply self-taught. The white areas are cerebro spinal fluid mainly.

I cannot see an obvious chiari, certainly from the ‘mid-sagittal’ picture the cerebellum remains well within the skull. In your first set, the picture taken from ‘ear to ear’ shows a little ‘cerebellar ectopia’ at each side but it doesn’t look sufficient to block the cerebrospinal fluid from flowing between your skull and your spinal column – again I’m no expert and craniocervical instability can change the whole picture.
Regards
Barbara
(UK)

[Barbara]

I would also like to point out that, according to the Chiari Institute in New York (check out their website for some excellent videos and explanations) even though this is the usual MRI shot for determining Chiari (or any degree of cerebellar ectopia) it’s not always a true reflection of what’s going on.

Also, some people show a normal brain when laid down but the picture changes when you’re in an upright position, hence the benefit from having an upright MRI.
Regards
Barbara
(UK)

[diamondcut]

I have a very similar MRI as the one shown here,nothing you would call “obvious” i am going to ask my neurologist if he could please do a standing MRI next time. Can anyone tell me when having an MRI, do you have to stand upright and still for say half an hour? I know you have to keep so still with these things, but that would be as tough as a tilt table test.I have taken a look at the chiari institute video, and its interesting how they say the drop is almost meaningless at times.

[Barbara]

I had an Upright MRI and they sat me on a chair and rested my head (or chin?) against a bar (if I remember rightly – it was about 5 years since!). I was able to watch a DVD whilst it was happening and it was altogether a much nicer experience than the usual MRI.

Although, I have to say, those that who read and reported on the MRI’s were not very good and missed most of the signs associated with our condition – BAH!
Regards
Barbara
(UK)

[Barbara]

Hi Samuel,
I’m not used to looking at a young person’s MRI so not sure what is normal for your age group and what is not but I would be asking “What is causing the cerebellar ectopia to start ?”. “Do you have a degree of raised intracranial pressure going on ?”. You do seem to have a lot of Cerebrospinal fluid (CSF) in and around your brain and within the folds of your brain (interstitial).

Why did you have this MRI ? What were your symptoms ? How long have you had your symptoms ? Have you had an MRI before (that you can compare this one with) ? Are there any people in your family that suffer with similar symptoms ?
Regards
Barbara
(UK)

[Dr. Diana]

Hi Samuel, I echo the other comments here as well. It is AMAZING to see the difference from one slice to the next, so a few slices helps a lot. AMEN to the vertical MRI! It can make a fairly big difference if you have laxity. There was a push for quite a while to do surgery on the folks who didn’t appear to have the ‘typical Chiari’, but who had symptoms of Chiari. They invented the name ‘Chiari Zero’, and I think that pushed some people to have surgery when perhaps Diamox would have corrected it (by lowering the intracranial pressure). That is what happened to my kids and I. I was ready to have cervical fusion (I couldn’t turn my head without feeling like I was passing out), a brain shunt (I had symptoms of hydrocephalus), and Chiari surgery (I had all of the Chiari symptoms and was disabled, as was my son). Instead, we went on Diamox and Zyrtec/Zantac. The symptoms stopped almost immediately. Even more interesting? The need for Diamox stopped as long as we weren’t ‘inflamed’ with an illness or from a poor diet. This is why I got out “The Driscoll Theory” when I did. If it can save others from unnecessary surgery, all the better. Things to consider? Hang in, my friend… 😉

[samuel94]

Thanks for all of your answers!

A late update, if this interests anyone with similar issues:
I definitely have EDS and got diagnosed (but without type due to a lot of overlapping) and they are still trying to figure out my EDS type.

I don’t have Chiari but cranio-cervical instability and a cervical-spine that looks like I had a whiplash without having it.
I have blocked CSF flow and a pretty long Syringomyelia in my spinal cord as a result.

Some symptoms (only Syringomyelia, not EDS-related):
headaches, chronic pain (in addition to my EDS pain), double vision, pressure sensation, whooshing tinnitus with heartbeat, a lot of passing out,
weakness, fatigue, lameness in my legs most of the time (wheelchair), gag reflex problems, throat swelling sensation, vertigo, brain fog, speech problems, POTS.

[Dr. Diana]

Hi Samuel, many of those symptoms are related to hydrocephalus, and Diamox CAN reverse a syrinx! Yeah! I may be able to offer you some more advice. Can you please fill out the “Symptoms Checklist” under “Articles and Handouts” — just look on the font page to the right and scroll down. See it? Once you’ve clicked on it again scroll down until you get to the Symptoms Checklist (it will say for Chronic Fatigue/M.E.) That’s the one! You can fill it out on line, or print (narrow margins) and get it back to me at the email that is listed there. Cool? Thanks! And hang in! 😉

[samuel94]

Thanks for your reply!
I just downloaded it and filling it out this night as it’s one of those sleepless nights again.
Idk, if it’s good or bad but I can answer almost anything I’ve read till now with yes. 😀
And I’ll definitely need some help from Google translator. 😉

[Barbara]

Thanks for all of your answers!
I don’t have Chiari but cranio-cervical instability and a cervical-spine that looks like I had a whiplash without having it.
I have blocked CSF flow and a pretty long Syringomyelia in my spinal cord as a result.

Some symptoms (only Syringomyelia, not EDS-related):
headaches, chronic pain (in addition to my EDS pain), double vision, pressure sensation, whooshing tinnitus with heartbeat, a lot of passing out,
weakness, fatigue, lameness in my legs most of the time (wheelchair), gag reflex problems, throat swelling sensation, vertigo, brain fog, speech problems, POTS.

Hi Samuel,
I have Cranio-cervical instability too but no syrinx, following a bad backwards fall onto a stone ledge and I have many symptoms similar to yours. Some are caused by raised intracranial pressure, some caused by the cranio-cervical instability which, when my head is pushed forwards, allows my odontoid to irritate my brainstem. Symptoms we have in common are:-
Headaches, chronic pain, intermittent double vision, tinnitus (both pulsing/throbbing on a morning and constant high-pitched for the rest of the day), weakness, fatigue, partial lameness (though this has improved), intermittent gag reflex problems, throat swelling sensation, brain fog, POTS and no doubt you have many more symptoms, as I do. I too am in a wheelchair, so I can certainly empathise with your suffering.

I would like to give you a piece of advice regarding the throat swelling sensation, you may not be the same as me but if you are, this piece of information will help – avoid moving your head from left to right whilst looking down (in flexion) for instance, whilst flicking through a magazine. In fact avoid putting your head into flexion at all, if you can, as this can trigger or worsen other symptoms.

Are you wearing a cervical collar, if so, what type ? A Philadelphia Cervical collar reduced my pain greatly overnight (particularly the excruciating all over body pain that used to wake me several times a night). The severe occipital pain, the nagging neck pain and shoulder pain eventually went too, so if you’re not in one already, it’s something you should seriously consider.

I also suggest you have your Vitamin D levels checked, for if you are deficient, this too can cause a level of chronic pain.
Regards
Barbara
(UK)

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