New on here with question

[tleasurelpn]

I have not been diagnosed with Chiari, however, I was diagnosed with a Basilar Invagination Oct.2017 and saw a Neurologist Jan 2018. I have had headaches every since I can remember, they just have been getting worse over the years until they finally got to the point I was maxed out on Topamax dosage and still having such severe migraines I couldn’t stand it with neck pain, sharp pains that would feel like someone knocked me upside the back of the head with a 2x4, pressure behind my eyes, blurry vision, pounding pressure in my eyes, back of my head, neck down my back that gets worse if I cough, sneeze, bear down for a bowel movement or lay in certain positions, twitches in my eye and mouth, tremors in my hand and leg at times, numbness and tingling in my legs like pins and needles, my head feeling heavy, but now I had 4 seizures Friday? Can they be related at all?? Also can they diagnose Chiari without a sitting/standing MRI?

[selmaS]

Hi...I know just how you feel and so many of us when we find the right Dr and get a DX and course of action, we cry because we are finally validated and vindicated.....unfortunately you will find many fools along the way.

Try to relax as stressing can cause your symptoms to worsen.

I am glad you had a knowledgeable Chiropractor and that they are able to help you in the way they are....that is so kind of them.

Hang in there.

[selmaS]

Hi and welcome to the Chiari forum.

Yes, Chiari can be DX'd without a sitting or standing MRI as Chiari is not the herniation but a malformation of the skull....some feel a small herniation needs an upright MRI to see if gravity doesn't pull it down further since there are Drs that only DX Chiari by the length of herniation.....

Did they say why you would have developed Baasilar invagnation if there was no Chiari?

[tleasurelpn]

No, they do not have an answer for why I have the Basilar Invagination. My C1 is fused to my skull and I do have slight scholiosis of the spine along with TMJ and so many other issues that point towards Chiari according to the Chiropractor I went to, which is the only reason I had the MRI done. We have assumed all along they were just migraines until I started getting other neurological symptoms. The ringing in my ears and balance issues I always thought were due to ear issues since I was a kid. Now they think maybe not so much. Lately just to sit or stand though my head, neck and spine pound or pulsate, whatever you want to call it. The seizures Friday scared me though.

[selmaS]

I hope your Chiropractor has stopped giving you manipulations of your cervical spine....with BI it is not a good idea, or with Chiari....so do avoid that for now.

It is difficult to get all the Drs on the same page since Chiari and related conditions is not really taught in medical school to the degree they need to learn....so those Drs that have their degrees didn't get much about it and it depends on when they went to med school....keeping in mind how long MRI's have been used to detect issues like Chiari.....

I know the seizure must have been very scary....but you do need to let your Dr know what happened and see what they suggest.

[tleasurelpn]

Selma,
The Chiropractor has actually been the most knowledgeable of everyone so far. As soon as he saw that my C1 was fused to my skull and knew that I had migraines he started asking a LOT of questions and refused to do ANY manipulation and wanted to know the name of the previous Chiropractor who did knowing that my C1 was fused. He said he would touch that area until I had an MRI done and asked me to follow up with him. Even though I am not his patient anymore I still go by to see him and his wife and tries to help with ways to deal with the pain until I get into the Neurosurgeon with no charges and we talk through the process'. They are VERY kind people. I did let the Neurologist's nurse know and all she did was argue with me that they were not seizures because the ER did not put them down as seizures. I have been a nurse for 15 years and an EMT for 2, I know my hands and arms started posturing in and then my ex husband was there and witnessed the actual seizures and he knows what a seizure is. He counted 3, and I know I had 1 in the hall at the hospital before they put me in the front waiting room. She was very rude and unkind. My regular doctor's office called me and when I told her the first thing she said was looking at the vital signs, etc she believed what I said. It is bad enough feeling like I'm going crazy, but for someone to make me feel like I'm going crazy is even worse. The last six months I have deteriorated to the point that some days I stop in the middle of the staircase on the way to my room because I have already tripped on every stair. Some days just suck, some days I can't even remember deodorant. I just wish they would think before they acted a fool.