Is it CM

[GeorginaB]

Hi, sorry if this is a long post. I am 50 and have had chronic severe neck and head pain since Feb this year. One LP showed opening pressure borderline high 28. Ct and MRI showed normal except 'low lying' cerebellar tonsils which one Neuro said showed no ACM  as plenty of space in hind brain. A different Neuro looked at Mri spine and has mentioned AC, with some narrowing of cervical canal but no high signal.

Headache wakes me at night, though currently on diamox which I think is helping. I suppose my question is do you get neck and head pain without csf blockage in borderline AC.

Thank you

[desertstorm2009]

Hi Georgia...
So basically.... Saying you have low lying tonsils does not mean in lieu of Chiari. In fact, that is part of the anatomical description of the condition. Look at the MRI report, does it say the tonsils are peg like? What you really need here is a good professional opinion. Yes, your MRI Cine will show valuable results. Your symptoms are typical. Sometimes Dr's can lead us in a merry go round when the proof is right in front of them. Look at your symptoms and findings closely, do your research and don't let anyone dismiss your case. Look for logical explanations :-) Lisa

[selmaS]

Since u said it feels like swollen glands do have ur thyroid tested for an auto immune disorder...many with Chiari do have it, Hashimoto's thyroiditis....and in order to find it u may need special testing like an ultra sound of the thyroid, and blood labs of free T3 and free T4 and TPO antibodies and TSH.....many Drs only look at TSH and that does not always indicate this issue as ur levels can flux back and forth...one test it can be normal, the next u r hyper and the next hypo....then back to normal.....and look to family history too.

Again I have to ask what is meant by borderline Chiari, in my opinion u have it or u don't....and if u have it, u may have symptoms, and Chiari symptoms can cycle so if u had the flu recently that can trigger symptoms to flare as can being stressed out, or a hard cough or sneeze can do it....

Many times those with the so called "mild" DX have more issues then those with a full on chiari DX as the Drs are looking at the length of the herniation not what is going on inside....

Also get checked for ALL related conditions like ehlers-danlos as it can cause many of the same symptoms as Chiari.....so more testing and let us know what u find out.

[GeorginaB]

I really hope you get some relief soon, have you tried topiramate? It seems to vary massively depending on Neuro what they consider high or borderline pressure. Neurology seems to be more of an art than a science

[Smiley1007]

Your lp opening pressure is pretty high. Normal is usually 10 to 20, 25 is borderline, anything above is high.   Mines was 32 and 29.  I was diagnosed with iih aka ptc.  My neuro report said cerebellar tonsils were in normal location, whatever that means.   I do know there is some research on the relationship of iih and chiari, they don't know if one causes the other or if it coexists.  Im on diamox, no relief yet.   Currently trying to make sure I don't have chiari.

[GeorginaB]

Thank you! I had a hysterectomy two months prior to it all starting - biggest regret ever. I haven't had an mri cine yet but I'm guessing that's the next thing to be suggested but the iih specialist Neuro doesn't think I have raised pressure as no swelling of optic disc. I'm wondering if the mild/ borderline ACM is causing the pain but if no csf blockage do you know what causes the pain. I also have pain in my neck like swollen glands but I have no infection. X