MRI report

[angie99]

SLLOWE, I picked up my spinal mri report yesterday and guess what I found? Besides the syrinx at C4-7, there is a lesion at T4 measuring 8mm, in the report they say it is  probably another syrinx.  I dont understand why that neuro did not tell me any of this...I will be glad to go next wed. to the new neuro. Just thought I would let you know.

[sllowe]

Hi Ang -

I have many similar ones.  In Feb, it started with burning skin on my back and in the direct center of my spine, feeling like water moving around.  Spasms across my mid and lower back and my feet, primarily my left one.  I called the Doctor, he started me on Baclofen, and the spasms never went full throttle.

The symptoms now are aggrevated by standing, stairs, pressure of any kind, (so of course using the pottie is an issue), lifting and anything that leans on my back, pressure makes it worse.  

Now that you mention, I had to drag myself out of bed for over 2 weeks, was more difficult than usual.  My whole body was stiff, (oh that is another symptom LOL), but I thought it was adjustment to the Baclofen.  Which, it probably is.  That has gotten a bit better now.

It's there all the time and I have to adjust myself constantly.  I was just starting to get use to my limitations and working around them.  Something still doesn't sit right w/me on this one, and I really want some clarity and another set of eyes on my MRIs.

This lesion was identified in my spine last year when I was diagnosed.  I have not had any of these symptoms until February.  Also last year, the Neuro said that it was this very lesion causing me all of my problems, and those problems were nothing like this. They did eventually subside.  Although last year I had horrifying spasms for days in my back, the take your breath away kind that you have problems expanding your ribcage.  These are not as severe.

I've got good links on the syrinx too, don't do too much digging, some of them will scare you.  Don't be afraid.  Just know that it might not be one at all, and if it is, they will find out what's causing it and fix it (not the syrinx - just whatever is obstructing the CSF).

ttys,
SL

[MCBCON]

http://www.asap.org/syringomyelia.html

[angie99]

What is it that is different than the way you felt before?

My symptoms started out with prickly feeling in my feet,cramps in my foot, tired all of time, twitches and shocks of pain in my legs, floaters in right eye w/pain and brain fog, a few times i had tremors in my hand. This lasted about 3months then went away for about 6months then started again but the prickly feet was very intense, then i felt this difference between my right side vs left, right feels weaker and heavy, more floaters and flashes and pain in right eye, brain fog again, hit a deer in broad daylight and in a straight stretch, like my mind was to slow to respond, pulled out infront of ambulance, numbness in my back when I bend over for a lenght of time, then it got better for about a month with the exception of the feet prickly, it has never gone away, then came the TN and the other head pain...so far that is it.

What do you think about my symptoms?
Any paticular questions I should ask?
Any paticular test they should do?

[sllowe]

Do have your questions lined up!  I did, and still left my appt with uncertainty.  

I pray they are right, but a re-write should bring clarity. I feel something is going on that I've never experienced before and I don't like it.

The lesion they reference is big, and just about fills that area of the spinal cord and it's long.  I guess either scares me due to my current symptoms.  I don't like feeling this way.

These docs know more than me for sure, however, I'm just a stickler for reporting and expect a thorough one.  Gonna hold them to it - that is afterall why they make the big bucks. . .LOL

-ttys,
SL

p.s. What are your symptoms?

[angie99]

I know, when I started the TN, I started getting these pains in my head, like someone was shocking me then my scalp was so tender I cried trying to wash my hair let alone brushing it, I really hope they do another MRI of the brain,(its been a year) Ive been scared the last month or so that maybe I have a tumor, but I am past that worry, think I would have had alot of other symptoms if it was a tumor...this sounds bad, but I hope there is something on the brain mri, there just has to be  with everything that has been going on in my head. The weakness,,,uhg..everymorning when I try to turn the alarm clock off, my arm shakes so bad reaching for it, it is like it is too heavy to move, i guess thats why it shakes, the stiffness everytime I get up,,,,well, too many things...I better get out and mow the yard(riding) its so hot here 90 this afternoon. good luck with your medication..be talking to you soon. Its so sad, your saying your lucky to get such a quick dx, me saying that I hope something shows up on mri....why cant we all live a pain free, disease free life!!!!!!  

[doublevision1]

Thanks for sharing that info.

To answer your question, I was dx'ed with MS about 8 months ago.  I guess I'm one of the lucky ones, meaning I only had severe symptoms for about 4 weeks when they figured out it was MS.  About a year prior to that, I had Lhermitte's, it was my only symptom until I had the big attack that quickly led to my dx.  My first MRIs nearly two years ago (prompted by the Lhermitte's) were normal, I felt great, and this single symptom was not painful nor debilitating in any way.  By Sept 2007 my MRI showed two lesions.  Between these lesions and my two attacks (they called the Lhermitte's my first attack)  I met the criteria for MS.  I never suffered in limbo.  I guess you could say I'm suffering somewhat now (double vision, left side numbness, left hand nerve pain, crushing fatigue) but at least I know what I'm dealing with.  I'm having some problems tolerating Rebif but hopefully this will work out for me. I'm fortunate that so far, I have no problems with weakness, walking, incontinence, cognition, etc. and minimal balance issues.

I really wish you the best of luck with your new neuro next week and hope this moves you closer to some answers.  I really feel for you and all of those who are in limbo with these troubling and sometimes scary symptoms.

db

[angie99]

Yes, please keep me up to date, of course I will be asking the questions next week at my appt. but it is easier, I'm sure to relate to you other than the highly educated doctors.
I'm glad its not a syrinx for you, but not sure which would be better....Good Luck.

Doublevision, nice to talk to you....

I dont know a lot about syrinx, this could have developed from whiplash I had 8 yrs ago, in the report they do not give a size, just that it is small, from what I have learned from the pcp, it could have caused the Trigeminal Neuralgia I now have, but the majority of my symptoms have been lower body and 1 side weakness, lots of other stuff too, but they all sound like MS to a T, but I think any kind of nerve damage would sound like MS too. Not sure, just hope for answers next wed.
It has been a yr and half and I am so tired of all this.
How about you????

[sllowe]

Holy C rap!

Well, I can't wait for you to go to the new Neuro too!

I have a 2nd report now for each.  1 for C- and one for T.

T -  states that the spinal canal is normal (vertebral, etc) and overall a normal t-spine MRI.   HOWEVER, it does not mention the "central canal" in my t-spine at all.  Nor does it reference that they even correlated with the imaging with the week prior.

C - states that there is an ill-defined region of T2 lengthening in the ventral spinal cord not readily apparent on the FLAIR, but corresponds with a similar region seen on the STIR images in the prior study.

I'm drafting up a letter at this very minute asking them to correlate these studies.   They shouldn't have a problem doing it I figure.

If in fact they DID study the images from the week prior, and conclude that mine is a plaque and not syrinx, then they should have no problem stating exactly that.  I've not met one person, nor have I read one report that did not reference their work, and what they used to make a determination.  

So, what I'm looking at, are 2 conflicting reports.  1 report from one set of pics and the 2nd from another set.  Depending on the view is whether they "see" what they think they see. . .

My gosh, you keep on it!  I'll keep you posted too.  Think though that like me, you will be having some additional sequences.

I am very happy that they did not say syrnix, don't get me wrong.  Just want the report to reflect it properly - for my own sanity.

ttys,
SL

[doublevision1]

Hi Angie!

Do you know what the significance of a syrinx is, ie: to your knowledge is this causing symptoms for you?  Do you know if these are common in MS?  I don't know much about them.  
Have you been diagnosed with MS or are you in limbo?

I hope you don't mind all these questions!  I've had a hard time keeping up lately and have not been able to read all the posts.

db