help interpretting MRI results

[melephant]

I was recently diagnosed with chiari 1 with an 8mm and 11mm herniation.  I've only seen one neurologist so far and he only looked at my mri REPORT! not the actual images.   I have had terrible skull pain for months now almost every day and he wanted to treat me for migraines.  I've had migraines in the past and my skull was never involved -- I'm on the prowl for a second and third opinion but in the mean time, can anyone explain what the heck the 38mm measurement is for on my MRI results?!  I added a picture of my report that I'm wondering about.

Also, I've had tingly hands and legs -- and loss of temperature sensation that comes and goes in my fingers.  The neurologist I saw was not concerned at all by this.  

[*Stormy*]

I'm a sloucher too...have been for  a long time...always tried to keep my posture but felt like I just couldn't do it..

I now realize this was part of chiari too...my muscles were weakening and the first notice of that is shoulders that roll inward...you just don't have the muscle strength to keep them up where they should be..

It causes me pain too...which is why I have to sit in a recliner or have full back support if I have to sit for a period of time...otherwise its really hurts..my neck, my shoulders and down my spine. After all something has to take the brunt of supporting the body..

Carolyn

[selmaS]

Hi...there r a few of us that cold can make us worse.....when I get cold I hurt, so heat works better for me...if u have a problem tolerating the cold try heat, but no more than 15 mins at a time.

I was dx'd with raynauds which the cold makes me hurt big time, turn blue.....but, more recently I was told I had EDS which is y I have raynauds like issues.

"selma"

[Amethyst3]

I put a towel over it, so it's cool but not ice cold, and it does make it feel a little better.

[melephant]

does the cold ever make it worse?  I've thought of that but I'm weary of making it worse.  

Also -- codell -- I can't even tell you how comforting it is to read that I'm not the only one with an electric head! It stinks that it happens but at least I know I'm not crazy. There were times when I would actually have a little conversation with myself in my head like -- am I REALLY feeling this?! (:  

I have sharp pains sometimes when I'm slouching -- I'm a sloucher ;p ... sometimes it's so bad when I go to get up that I CAN'T and I have to stay really still until it passes.  It takes my breath away.  I never thought it could be connected to chiari. Scary!

[Amethyst3]

The back of my head hurts too like that.  I have a cold pack I keep in the refrigerator, that I lay on my pillow to lay my head on at night.  It helps sometimes.

[*Stormy*]

HI I saw your question about the pain in your rib cage on your left side...

That is something else that I get and for me, seems to follow along when I get the chest tightening feeling...mine is also on my left side which is my worst side for everything. Sometimes the chest pain spreads through to my back and down my arm too...which, along with the tight chest..had me sure that it was a heartattack!! Now, I think it is something muscular...sort of like the MS hug (google it and you will see what I'm talking about).

Carolyn

[codell]

Oh my goodness!!  That is so crazy.  I have the EXACT same burning sensation on the top back of my head as well!  Mine also comes with and without headaches.  I agree, it is a very creepy feeling.   I have dealt with this stuff since I was a kid.  I can remember from the age of 14, my mom calling me a hypochondriac.  I am so ready for it to get better.  I am learning it will never be over, but anything has to be better than where I am now.  I have this bad sharp pain that has been happening a lot the last month or two.  It's in my left side, just under and behind my rib cage.  I have no idea what it is, but I do know it's NOT gas.  Ever experience that?

[melephant]

for a long time I was dismissing the headaches but the tingling I cannot deal with so well.  I've had tons of blood taken because I guess diabetes can also cause this tingling in your hands and feet?

another thing I've noticed is the back and top of my head BURN.  Like an electric heat.  I was told by the NL that this could be my brain releasing something to "treat" my head pain? but sometimes it happens completely out of the blue, when my head does not hurt.  It's a very creepy feeling.  

I hope we all find some answers and the treatment we need! this is ridiculous that more doctors don't know about it.  I live in TEXAS -- giant giant GIANT Texas and finding a doctor is way more difficult than it should be!!!

[codell]

Again, thank you for your post.  My herniation is in the foramen magnum as well and puts pressue on the carotid artery, noted as turbulence on a doplar study.  Please keep us up with what is going on with you.

codell

[blondeballerina07]

The 38mm foramen is the size of the natural opening/hole in the skull where the brain stem and spine meet. hope that helps. They are reffering to it as stenoic because it is overcrowed becaue of the tonsils. As for being able to see a pediatric ns it is up to the doctor if they want to take you, I am 21 and I am seeing a pediatric ns, it completely depends on the doctor

[*Stormy*]

Sorry, I just noticed what Amethyst wrote so I looked back at it again..

It say the caudal (lower portion farthest from the head) 1/3 of the medulla is compressed so it means you do have some compression on the brainstem too. Those are some major findings in my books...so I would not delay on getting a chiari specialist.

[*Stormy*]

Hello and Welcome to the forum,

The terms "stenoic foramen magnum of 38mm"...well like Selma said that stenoic means narrowing or restricted and the foramen magnum is the opening in your skull where the spinal cord comes through. So...to me that says that you have a smaller opening into your skull then most...I have no idea what the actual normal foramen magnum circumference would be but I wonder if you can google it. If that is the case, I can see that it would cause problems with having chiari b/c there would be a good chance of blockage. Or they could be referring to the foramen magnum being stenoic BECAUSE of the Chiari...like Selma said it is hard to know how they word things. Either way though the FM is narrowed according to those findings..

Also, I want to second the notion that you should find a NS as soon as you can..the fact that the NL didn't even want to see the pictures and is dismissing your symptoms..means he does not have the knowledge you need!!! I hope you can find a Chiari specialist soon!

Good luck,
Carolyn

[Amethyst3]

Ouch, it also looks like it says your brainstem is pushed down or forward a little bit.

[codell]

I am also having the tingling in my hands and feet and loss of temp. sensation.  Welcome to the group.  I have just joined myself and haven't been able to get online much lately, but hope to get more involved this week.  It is horrible to have people exprience these things, but it is so nice to finally have someone who "understands" and doesn't think you are crazy when you try to explain things.  

[selmaS]

Well some drs will take both kids and adults, but u would have to call the office....next, there is no way to "fix" this...only a way to slow progression and help avoid developing a syrinx which could cause perm nerve damage.U may need to travel to get to the right dr for u....there r not that many chiari specialists out there.

In regards to the MRI's I would go to the facility  or call them and tell them u r coming in for copies of the films as u also need a 2nd opinion.....u should be able to get them.With technology being what it is , the dr should have had those images regardless where the MRI's were done and that they were in the same building...shame on them both...the NL and the MRI facility.....

"selma"

[melephant]

Where I had the MRI done was actually on the first level of the same building the neurologist was in -- their office told me they would get copies of the films but they hadn't by the time my appointment came up.  I offered to go downstairs and get them and they didn't think it was necessary.  I don't know, it has really made me nervous about the search for someone to possibly fix this.

I've found a neurosurgeon through these boards that specializes in chiari but he is a pediatric ns ... can I even make an appointment with a kids doctor? I'm 24.

[selmaS]

Hi and welcome to the Chiari forum.

First once u have a dx of chiari u need a NS, a NL will dx u but can  not treat u for this .U also want to find a NS that is a chiari specialist in that his practice's main focus is chiari, this way u have someone that is well educated and experienced on this condition instead of someone that will occasionally see a case.

The term mild most likely is regarding the symptoms u r having, not the degree of chiari....it can be diff to understand what drs /radiologists mean by their terminology...and remember it is their personal opinion.

Second...get copies of the MRI's and all tests going forward all u need to do is when u sign in for the test ask that copies of reports and the films be sent to ur home.(Disks of the MRI's usually r given b4 u leave the facility)

The 38mm sounds like a measurement of the posterior fossa.....and stenoic  is the same as stinosis...in which it refers to smaller/narrowing......

I do not recall that on my reports or my drs mentioning it...so do put it on ur list to as the chiari NS u go to next.

U will need other MRI's to rule out a syrinx, tethered cord, pusedotumor cerebri, and  testing for other related conditions like Ehlers-Danlos.


The fact the NL wasn't concerned shows his/her lack of updated info on chiari.....

We r happy to have u join our little family here, so sorry for the reasons u had to seek us out....I am sure u will find some answers to ur questions and the support u seek.

"selma"