Hello! I haven't been on the board much in years....because I've been doing great and out living my life!!!
However, I've recently been having awful headaches and neck pains. I had an MRI and I was diagnosed with Chiari Malformation. Yet, I've had MRIs before, and this didn't show up. I've researched on here, and several other lymies have been diagnosed with this.
I'm trying to get more information. Please help if you are knowledgeable about this.
Thanks!
Posted by Keebler (Member # 12673) on :
- Hope the finding will be of help to figure out the best way to deal with this.
What is your doctor suggesting?
As to why it did not show up before,
An MRI has to be done in a very specific way to catch the exact view. And there are two steps for a Chiari MRI.
Did you have both steps, the second one is a CINE. If you did not have that, make no treatment decisions until that is also done.
The previous ones you had likely were not ordered to inquire about this. A lot of cases are missed due to this, actually - the order must be made in a very specific way and the test done accordingly or it won't show.
It may also be that the condition had not yet gotten prominent enough to see - but often these are there a long time before diagnosis is made.
not their site but see the reply - 2009, then contact them directly below to see what their current thinking is, although it would be a case by case determination regarding any treatment.
What is your doctor suggesting? Whatever, there may be both a CHIARI support group and a also VESTIBULAR DISORDERS SUPPORT group of some kind in your area.
Contact both / all to see if others have experience with this and compare their notes.
You'd also want to learn the differences between an otoneurologist and a neurotologist as you weight your options with consultations. There is a major difference between them. One has far more experience with neurology and the other with ontological matters. I just can't remember which is which. -
[ 08-08-2016, 06:38 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
. . . There is no specific test to confirm Chiari. Rather, a diagnosis is made by assessment of the patient’s symptoms, neurological exam, and MRI findings (i.e., tonsillar herniation, bone deformity, CSF blockage, syrinx). . . .
MRI (magnetic resonance imaging) scan &
Cine MRI scan
- a special MRI study used to observe cerebrospinal fluid (CSF) flow (Fig. 11). With each heartbeat, CSF is forced out of the ventricle of the brain, into the cisterna magna, and down the spinal canal.
When the heart relaxes, the CSF flow reverses.
The movie-like cine MRI captures the fluid movement. The test can determine if, and by how much, a Chiari is blocking the back-and-forth flow of CSF between the brain and spine. . . .
. . . All Chiari webinars and related videos are accessible on YouTube . . . .
[Much more detail at link, including the use of CT scans and X-rays to gather additional relative specifics] -
Posted by bluelyme (Member # 47170) on :
Yay life....Sounds like inflammation. .one doc uses iv curcumin here ...have you been tested for toxo or other opportunistic infections?
Posted by desertwind (Member # 25256) on :
I have Chiari and have had two corrective surgeries from the top Chiari Surgeon in the country. I have been through it all with Chiari and have a wealth of information. I would be happy to share what I know from both a patient perspective with Chiari and as Clinical Psychologist associated with the Chiari Research Center/ current research.
The diagnostic criteria has changed so many Neuroradiologists do not diagnose unless herniate is 5 mm or more, however, people with under developed skulls in the posterior fossa region may experience symptoms with just a 3mm herniation. Yes a CINE flow is necessary to analyze and determine if there is a restriction in csf flow. PM me if you have questions or are in need of assistance. This is a complex brain condition. DW
Posted by Keebler (Member # 12673) on :
- Pulling hair back into a clip?
Headache, you say. While that can certainly be due to Chiari, lyme, or whatever else . . .
if you pull your hair up into a pony tail, a bun or whatever the term of the day is for that, even with short hair not quite even chin length, long enough to pull back and put in a claw clip to get off my face . . . I get extreme headache just from that although it's a rather loose gathering and not pulled tight. -
Posted by txgirl09 (Member # 21612) on :
Keebler - you are always a wealth of information....thank you! I truly appreciate it!
Posted by txgirl09 (Member # 21612) on :
Desertwind - Thank you. Wow, I'm impressed with your knowledge. I hope you are doing well. I'll PM you.
Posted by ktkdommer (Member # 29020) on :
My 21 year old son just had the possibility of Chairi show in a brain MRI for something else. He is now referred for further testing.
His physical Lyme symptoms have gotten better but not his brain. Still has some dizziness and nausea. Diagnosed with POTS but doing well and no longer needs meds. Cognitive function is terrible.
Again we wait. I'm thinking though he won't have it. Headaches are so much better. Tachycardia is gone.