can you translate this into patient language?

[sinnet78]

I'm looking back over my mri report and I don't really understand it all... if anyone can translate this for me I'd really appreciate it.

I understand I don't have a syrinx, which is good, and there's substantial crowding...I guess where the tonsils hang down.. What does it mean for me that there's a lot of crowding? And what else does all this mean?

MRI Cervical Spine W/O Contrast

Cerebellar tonsils extend to the level of the posterior arch of C1.
Cervical medullary kinking is visible. Substantial crowding at the
foramen magnum. Otherwise, there is no focal cord compression. Minimal
disk bulging C3-C4 through C6-C7 area neural foramina are patent. Cord
signal is normal through mid T4. No evidence for syrinx.

IMPRESSION:

Chiari malformation. No evidence for cervical syrinx. Mild cervical
degenerative change. Disk bulging most prominent at the C6-C7 level, but
no gross cord impingement.  

[selmaS]

  Hi....yes, that is basically what a tilt table involves.....

Ok I have heard of zonegran, but had no idea it was considered light Topamax......

hmmmm well u got me stumped.

   But I am sure a true chiari specialist will be able to figure this out  for u.

     "selma"

[sinnet78]

I looked it up, the stuff they refer to as topamax light is called zonegran. They said it was similar to topamax, but with less of the side effects as with topamax.

No one has done the tilt table test on me....my drs really haven't done much with me. I have a blood pressure/heart rate monitor and I did it myself though. Laying down, sitting up, then standing, right? My blood pressure, which is on the low end of normal, (average 100/60) varied normally i think, as did my heart rate. They both went up a bit as i sat up then stood, but nothing crazy...  That's a good sign, right??

[selmaS]

  A true chiari specialist's whole practice revolves around chiari and chiari related conditions and that is all they treat.Then u can have a chiari specialist that treats chiari and what ever else comes along.....

How many they do in a week is a good indication as to how much experience they have and get daily.

I never heard of TOPAMAX light?...

Did they do a tilt table test on u?

   "selma"

[sinnet78]

I was on diamox for 3 weeks but felt awful on it, didn't think it improved me enough to stay on it, so i just weaned off. I haven't been any worse so far. dr had me all the way up to 750mg. i was offered diamox, topamax, or ....they call it topamax light--i can't think of its name right now. I have a new rx for the topa light, but i'm going to see how i am off meds first.

my symptoms are just throbbing upon standing then sitting quickly, or bending over... i don't get it all the time when i stand or bend either. it's a lot of pressure feeling and the throbbing is awful. i get the throbbing sometimes when i turn my head a certain way too. so....the dr offered me topamax or diamox.

i am in upstate ny now, and was thinking of going to boston to see a chiari person. it looks like a dr heilman is a specialist. I was at the cleveland clinic but saw a neurosurgeon who wasn't a specialist. He told me to go live my life and basically disregarded how i'm feeling. Dr luciano at the cc might be a specialist but it's hard for me to understand who's a specialist and who just knows of chiari and does some surgeries.... how do you know they difference?

thank you again.

[selmaS]

  NO worries...but u really want to send copies of ur MRI's to a true chiari specialist to see just what is the best treatment and holding pattern for u...

Try to relax...as being upset will only make u feel worse.

May I ask what meds u were on? And y the dr rx'd them ?

Once u have a dx of chiari u should see a chiari NS, it is good to have  a NL that knows chiari, but u will do better to find a NS and see if they have a NL that works with them.

  JMHO

  "selma"

[sinnet78]

trust me, i have no happy bubble to burst. I've been a wreck since I was diagnosed almost 2 months ago.

thanks for responding to me. i'm panicked and upset about this kinking in what you think must be the brain stem. omg, I have no idea what this means. I just moved to a new state, so I'm in the process of trying to find a new neurologist.

the neurologist just put me on drugs - which i'm now off of - and said i need to be checked again next june by mri. i guess i might need more.

thanks again for taking the time to respond to me.

[selmaS]

  Hi..well I will take a stab at explaining only what I know....and u do have to rely on ur NS for more details and to guide u to ur next step.
And not to burst ur bubble, but this only states u do not have a cervical syrinx, they have been found in the thoracic and lumbar spines, so do have those areas MRI'd too.

Cervicomedullary junction~The junction between the base of the skull and brainstem and the cervical spine and spinal cord; the point where the skull meets the spine.

Foramen of Magendie: An opening from the fourth ventricle

The radiologist feels this herniation is normal for ur age...and did not note in the impressions as to the CSF motion not being identified in the 4th  ventricle......this tends to be where most of us have an obstruction.

The one that does concern me is that u have kinking this does not specify if it is the brain stem or the cord, but since it says the cord has no compression I am left to the conclusion it is the brain stem that has the kinking.


  I hope this helps

   "selma"

[sinnet78]

Oh there's my other MRI too if anyone can help with this one...  Does this one say the flow is normal????


MRI BRAIN WO CONTRAST

HISTORY:

Chiari malformation.

TECHNIQUE:

Routine MRI of the brain with CSF flow study.

RESULT:

No restricted diffusion is identified to suggest an acute ischemic event.
Cerebellar tonsils extend to the level of the posterior arch of C1.
Mild cervicomedullary kinking at this level, and there is substantial
crowding at the foramen magnum.

Gross morphology of the brain is otherwise within normal limits for age.

CSF flow study demonstrates biphasic CSF motion about the upper cervical
cord, fourth ventricle, aqueduct, pre-pontine and basal cisterns.
Biphasic CSF motion is noted at the foramina of Luschka that is not
clearly identified at the foramina of Magendie.

IMPRESSION:

Chiari malformation as noted. Cerebellar tonsils extend to the level of
the posterior arch of C1 and there is mild cervicomedullary kinking. No
syrinx identified to the level of the superior endplate of C4.