Is there such a thing as Borderline Chiari

My doc isn't helping, I am trying to do research myself. Can Anyone please help?

[dana_8142]

I do not believe there is such a thisng as borderline Chiari, the tonsils in your brain are either overgrown or they are not.  However there are many other diseases that mock the symptoms - Fibromyalgia, Ciphillus, Lymes Disease, Multiple Sclerosis just to name a few.  If you think you have Chiari because you have the symptoms look in to some of these afflictions it may bemore helpful.

[razzle5150]

yes or called Chiari zero

[dana_8142]

wow, good call razzle I had never heard of this, but you are right - there is a chiari zero!

[youngwife]

Absolutely yes!  

Experts in Chiari have discovered that the herniation of the cerebellum tonsils is just another symptom of Chiari.  

Classifying Chiari 1 or 0 by the degree of herniation should become obsolete eventually.  Because, the degree of herniation does not determine the severity of symptoms.  

CSF flow is much more crucial as is the space in the base of the skull.

If you'd like more information, the TCI (http://www.chiariinstitute.com/Videos/index.html) has wonderful videos that explain this new research.  Just click on the patient education icon and scroll down to find the Chiari videos.

Oh, and also www.chiarione.org has lots of good info.

Rebecca

[momofzipperhead]

Yes, my daughter has Chiari Zero, most NS won't believe you even Chiari specialists.  I reccommend the Western Regional Brain and Spine Institute in Las Vegas, Dr. Seiff.  He performed surgery on her last year.  She had been in pain for 10 years without a diagnosis.  We had seen so many docs with no positive results, don't give up!!!

[AshleighMarine]

Yes, there deffinately is. I have what is commonly called "Chiari Zero". I had surgery last Halloween, my surgeon was Dr. Michael Seiff at the Western Regional Center for Brain and Spinal surgery. I recommend him hands down! He won't give you surgery if you don't need it, but he will listen to your story and do everything in his power to discovery whether or not your symptoms are due to Chiari malformation.

Before surgery I had been suffering in pain for over ten years. Now I'm on my way to recovery. Keep in mind that if you do have Chiari even surgery may not 'cure' your symptoms. I still deal with pain on a regular basis, but I was in a wheel chair before surgery and knowing my diagnosis and keeping a positive attitude about my circumstances helps me every day.

Good luck!

[youngwife]

I am so thankful that you found a specialist to help you!!  Thanks for sharing your experience with us.


Rebecca
Mom of Chiari Zero patients

[selmaS]

HI and welcome to the Chiari forum.

I invite u to join our community as a member and to add ur drs info to our specialist thread.
U have wonderful things to say about this dr ans we only add our members drs to our list to be sure we have drs on it that others liked and r current.

Thanks f or sharing ur info with us : )

"selma"

[sydneygirl888]

So your daughter had chiari zero with pain and symptoms and had surgery?  My daughter has been in terrible pain for two years now but because the descent of the tonsils is so small surgery is unlikely to help!  I dont know where to turn.

[youngwife]

Hi there!  I am sorry to hear that your daughter has been struggling for so long.  My daughter had Chiari Zero as well, and is also living in pain.  She is 16, and not able to function normally.  She spends most of her time in a recliner or the bed so that she can minimize her pain, and sometimes it's not enough.

Where are you located??

((((HUGS)))) I hope you are able to find help!  It sounds like your daughter really needs to see a Chiari specialist!

Blessings to you,

Rebecca

[lu7997]

Ther deff is.    Text book says u have to have a herniation of 5mm or more.  Well I have a 4mm that is extremly wide and causing all sorts of problems.  My docs have labled it borderline.  Since I am having symptoms but don't meet the deffinition.  


It is also known as chiari zero.  

The best thing I can tell u is size doesn't matter.   Finding a doc to agree is another story.   And if u read through these forums u will quickly see moat doctors are not helpful there just isn't enough known I guess and doctors don't like to admit they don't know something.  So ego and ignorance wins while we suffer.  

[selmaS]

  Hi and welcome to the Chiari forum.

  The biggest issue here is the old criteria for a chiari dx...5mm herniation, when in fact it is the malformation of the skull which results in a herniation.And what matters is the width and if it is causing a CSF blockage and overcrowding, not the length of the tonsil past the foreman magnum.

Find a true chiari specialist to help guide u and do the testing to check u for the CSF obstruction and overcrowding and other related conditions.

  "selma"

[Chiari_Momma]

I know what you mean.  The Radiologists say I don't have Chiari due to only being at 3mm but my symptoms and NL say yes I do have Chiari.  Also the insurance won't cover me to see Dr. Oro and also Dr. Oro won't see me unless I am at 5mm.  Though my symptoms are bad...blackouts, headaches, vision problems, balance problems and my memory is a thing of the past.  Working is getting to be a daily challenge as I forget more then I recall.  It is a freaking nightmare!!

[selmaS]

  Hi and welcome to the Chiari forum.

May we ask where u r located?....I am not sure when Dr O,. stopped seeing Chiari 0 patients...but there r chiari specialists that will.

The problem with it is, it is not always the tonsils that create the obstruction...u could have a retroflexed odontoid, and tonsils that r low lying but not herniated to 5mm can still cork up the CSF if they r wider than most.

Keep pushing to see a Chiari NS, and know they r out there.

   "selma"

[pittbull1]

There is definitely a Chiari diagnosis for less than 6mm. Youngwife was absolutely correct in stating that it isn't the size of the herniation that determines the severity of the case. Mine was only 5mm, but I suffered with over 40 symptoms. I had my decompression surgery in 2009, and had some relief, but still deal with some awful sypmtoms. Try The Chiari Instiutue, Dr. Rosner, or Dr. Xaio Di (he was my surgeon at the Cleveland Clinic, but he has since left and I think is now at St. Louis Medical Center waiting for his license to go through.)

Best of luck to you!

[selmaS]

  HI and welcome to the Chiari forum.

May I ask, where u got the info on Dr Di?...So many are asking where he is or planing on being and no one seems to know......


And thank u for sharing ur knowledge on chiari with us : )

     "selma"

[pittbull1]

Hi Selma,

I belong to a Dr. Di fan club page on Facebook and someone posted that they found out he is getting licensed to work in St. Louis.

[selmaS]

  Well thank u so much for the update on him.

  Please keep us advised : )

   "selma"