I know there is no such thing as classic symptom when it comes to chiari's and everyone's differ. But with my ongoing neurologist issues I was wondering if anyone has had their legs just go out from under them. I guess the best way to describe it is falling like I'm fainting but being aware the whole time it has happened 3 times to me in the last couple of months and my neurologist thinks its more peripheral vascular than chair's related. And thinking back it happened once in high school.
I was just wondering if this has happen to anyone else so I don't waste time and money doing what my dr thinks is wrong and what really is wrong.
This is called a "drop attack". Typically you will catch yourself before you actually hit the ground. My niece has these attacks. This is absolutely Chiari related. One my neice had the 1st decompression the attacks stopped for awhile. There is some data and research that suggests that decompression has good results for the syncope and drop attacks. Denvers (Aurora, Co.) Chiari Care Institute has a post on this very issue right now. It is on the first page. I'll see if I can find the link.
Thank you guys for all the info I knew I wasn’t overreacting to my symptoms. On a side note I finally got my Neuro to give me a consult to a local neurosurgeon who actually has treated many patients with CM.Now I just need to get an appt.
The full link I tried to copy wouldn't paste, but this is the website. Its some info on research done by Dr. Oro's assistant (Mueller I believe). It doesn't describe the condition, but it does show relevance with Chiari and Chairi treatment.
Has anyone ever had chronic compartment syndromw and plantar fasciatis as symptoms of chiari?
I have had over 6 surgeries to release muscles from the fascia compartment and now I have been diagnosed with chiari type 1. I know the dura is tight around the brain tonsils for chiari, but my whole body has had tight connective tissue. Anyone experiancing tight compartments throughout the body?
Thank you for the response Abby. This support group is amazing.
Abby said:
I know I sure suffer from plantar fascitis at times and it hurts for months. Many of us Chiarian's also have Ehlers Danlos which may be the root of many of our problems including Plantar Fasciatis, TMJ, Cervical instability and even Chiari,
Read this to explain what I am talking about:
What Can I Do?
The most common form of EDS is hypermobility, which is also the form for which genetic testing is unavailable (the genes involved have not been completely identified yet). So it is particularly important that primary care physicians screen for EDS. Refer the family to a geneticist, but:
You are in the best position to enable an EDS child’s full and happy life.
The clues and complications listed here can help guide you and the families you serve in deciding whether a diagnosis of EDS may be worth pursuing further, and help those who have been diagnosed to stay as healthy as possible.
Cardiovascular
Possibility of aortic root dilatition, mitral valve prolapse, other valvular abnormalities, enlarged right coronary artery.
Postural orthostatic tachycardia, leading to chronic fatigue, is especially found in young persons with EDS.
Some doctors have seen onset of lipid abnormalities in EDS youth; in any case, attention to heart health should begin early.
Don’t pull sutures tighter than necessary, but use more and leave them in longer.
Treat prolonged bleeding similarly to von Willebrand disease.
The skin involvement (hyperextensibility and/or smooth velvety skin) as well as bruising tendencies in the Hypermobility Type are present but variable in severity.
Vascular EDS (VEDs)
Rupture of intestines, medium-sized arteries, gravid uterus, and other internal organs
Non-invasive arteriography head through pelvis (CT or MR) every 6-12 months.
Cautious embolization, stenting or surgical management of enlarging aneurysms.
Tissues are especially friable when there is concurrent inflammation.
Repair of torn structures may be difficult, sometimes requiring sacrifice of downstream organ(s).
Kyphoscoliosis EDS
Consider arterial screening as in the vascular type.
Eye protection whenever there is risk of trauma.
Regular ophthalmologic examination.
Prompt evaluation and treatment of potential retinal detachment.
Regular spine examination; surgery for kyphoscoliosis if necessar