does the size of the hernation dictate whether surgery is needed?

[dpulum]

I'm having a hard time in trying to sort out information.  My neurologist originally told me that I had a 12-13 mm herniation, I have a bunch of visual symptoms, including intermittent periods when I lose my vision, I started falling over last week, lots of pressure in my face & eyes, etc.  So I saw the neurosurgeon for the 2nd time this week (he ***** BTW, won't be going back there).  I did find out that my herniation is 20+mm, he basically told me that none of my symptoms are from the Chiari and tried to dismiss me and schedule me back in a year.  I got upset because I've been having constant pressure in my face & eyes, he ended up actually looking at the MRI disc and half of my face is covered by a mass on the MRI.  When I asked him what it was, he said he didn't know, he doesn't specialize in that, he's a brain surgeon....needless to say, I won't be seeing him again.  I actually read the MRI report, which my neurologist/neurosurgeon obviously didn't read which says that I have a very large cyst in my sinus cavity, along with several other brain abnormalities that I don't understand.  I scheduled to see and ENT and I'm sure I'll have to get that cyst removed, I'm hoping that my symptoms are coming from that, it seems like it would be easier to deal with than the Chiari decompression. Does anyone know if there on people who come here with herniations that large who don't need surgery?

[selmaS]

There r diff tests, one is an EMG......can't think what else they may do.

[tma0704]

How do they check for nerve damage?

[selmaS]

It is possible for the tonsils to retract after tethered cord surgery...it doesn't always happen...but I do not think it can happen other than that,

Life altering....we have to change how and what we do....like avoid roller coasters.....straining ect.....to avoid pain or causing the herniation to grow.

Paralysis can happen if the symptoms r left alone too long and nerve damage occurs.

"selma"

[tma0704]

This is another question that may sound silly, but, can the tonsils move back up?  
What kind of life altering items are we talking about?  Paralysis?

[selmaS]

If no surgery, they may monitor the herniation using MRI every 6 months.

Contact sports are not a good idea, bcuz bumpy car rides and a MVA, a fall can cause the herniation to grow and to become symptomatic.

This is life altering, not life threatening.

"selma"

[tma0704]

oops...

What if NO surgery...

[tma0704]

Thank you for responding SelmaS.

I do know that the doctor told us that the fluid is flowing fine. There was no blockage.

Should I expect the NS to suggest surgery as our only option.  Will my son be able to play football, baseball..etc again.

What is NO surgery?  Then what?  Could death occur?  

[selmaS]

Hi and welcome to the Chiari forum.

Ur son may have symptoms, but doesn't recognize them since he most likely always had them.Like head pain from straining ect....

Plus, they may not be as severe as other chiarians bcuz his tonsils may be long, but thin and not obstructing the CSF flow.

"selma"

[tma0704]

My son has a 13mm CM recently dx. no symptoms at all.  Can anyone explain?
We have an appt w/ a neurosx in 2 weeks. I am really confused!

[dpulum]

Shane, I don't have issues with pain in my arms or legs.  My symptoms are mostly visual, pressure in my face, pain in the back of my head when I cough/sneeze, and some problems with my equilibrium.  The neurosurgeon told me that my fromula thingie (so not the right word) is wider open than normal and the herniation is not narrow at all, it's a big chunk.  He was not impressive to me, I'm trying to get in with a Chiari specialist at Northwestern in Chicago that was recommended to me by Dr. Ellenbogen, who is the Chiari specialist that treated my sister & nephew.  It's all pretty overwhelming, but when I read the symptoms some of the folks on here are dealing with, mine don't seem so bad. :)

[Shane99]

By itself, the size of the herniation doesn't necessarily dictate a need for surgery. However, at around 8mm, most Chiari specialists will start considering the operation.

With that size of a herniation, your cerebellum is probably under some pretty severe pressure. It's being squeezed into your spinal canal. At 20mm, the herniations would have to be extremelly narrow not to be causing problems. Have you been having leg or arm pains, pins and needles, numbness etc?

You need to see a Chiari Specialist. As Peachy said, we have a thread listing Doctors that we are comfortable with. I'll see if I can bump it to this page. Check it out and see if anyone is close to you. If not, let us know generally where you live and we can recommend someone, if we know of any.

[ThePeachy1]

wow- ok, you have a lot going on friend. Ok first,  you  20mm herniation I believe thats what shanes was, I am hoping he will see this stat, you need a Chiari specilist asap ! you definately can't wait. as far as a mass, I am not a medical prof but you need to see one, your symptoms can definatly be chiari related but that's not to rule out whatever that huge mass is your describing which should not be over looked by any means, If you could look at the posting I believe it's on page 2 or 3 of chiair specialist and see if there are any close to you and see about getting your mri and radiology report to them with a 20 mm herniation you  probably shouldn't be playing around.  If you need to please print out a general chiari info sheet and carry it with you and if you have any red flag symptoms proceed to the e.r.. Hopefully one of the more knowledgable chiari people or zipperheads will post on here soon for you with some better advice.  There's some really smart people on here, hope we can help you out.  Best of luck.