What Are Symptoms and Risk Factors of Chiari Malformation?

7 Answers

These messages are for mutual support and information sharing only. Always consult your doctor before trying anything you read here.
I was diagnosed at the age of 50 with a Chiari 1 malformation. I am 53 now and feel like my whole life has been put on hold. I now know that I have been dealing with the symptoms most of my life, but had no idea what a Chiari Malformation was. I had been working in the medical field over 25 years and at the time I was diagnosed I was literally falling all over the place with no warning. To make a long story short, I was soon out on disability because I was considered a liability working in pediatrics. I lost my insurance and now have Medi-cal and am having a tough time finding any doctors who will see me. It is going on four years now that I've had a disability case pending. I'm working on the fourth appeal. To add to my situation, I was in a car accident in November. Discharged from the Hospital with 8 fractured ribs. Everything else okay, but I've noticed the last week or so that I have really been getting dizzy lately and even have trouble standing. I live in a very small city in California but am willing to travel. I was hoping someone could help me out with doctors names that I could contact. I have been doing my homework and have gotten a few, but I thought it wouldn't hurt to ask. It would be greatly appreciated.
As far as I know, in US, the top three hospitals in neurosurgery are Mayo Clinic, Johns Hopkins Hospital, and New York Presbyterian Hospital. You can go to the official website of these hospitals to see if you have a doctor you like.
San Francisco is also an option
University of Michigan claimed to be a great place for treatment, however after 3 days of sitting in a room with my son miserable and no doctor around(only CMAs and every other abbreviation EXCEPT MD) I packed him up and left...stay AWAY.
I had corrective surgery in 2010 and am so much better! I went to Dartmouth - Hitchcock Medical Center in Lebanon NH
Hi my name is kirk and my girl friend tracy has stag 1 and going for surgery on jan 21 2020, you said you are lots better, just would like to talk with you and have you talk with her before her surgery, she is going to john hopkins in Baltimore md, please give me a call @ 616 834-2889, Tracy is 56 and having lots of headaches now today and maybe if you could talk with her it might help. hope to hear from you Kirk
Kirk, please have your gf ask about scar tissue taking the place of bone.  I had surgery in July and am having the same & worse symptoms and they said it is because scar tissue took the place of the bone he removed.
I was diagnosed with Chiari 1 in November 2018 because of headaches uncontrolled by medicine. Have blurry vision, ringing in ears, constant sore throat and difficulty swallowing as well as scoliosis in my neck. Saw a neurosurgeon who said I wasn’t quite ready for surgery. My symptoms have worsened and  his nurse refuses to all me to schedule an earlier appointment. What should I do? HELP!!!
While there is no current cure, the treatments for Chiari malformation are surgery and management of symptoms, based on the occurrence of clinical symptoms rather than the radiological findings. The presence of a syrinx is known to give specific signs and symptoms that vary from dysesthetic sensations to algothermal dissociation to spasticity and paresis. These are important indications that decompressive surgery is needed for patients with Chiari Malformation Type II. Type II patients have severe brain stem damage and rapidly diminishing neurological response.

Decompressive surgery involves removing the lamina of the first and sometimes the second or third cervical vertebrae and part of the occipital bone of the skull to relieve pressure. The flow of spinal fluid may be augmented by a shunt. Since this surgery usually involves the opening of the dura mater and the expansion of the space beneath, a dural graft is usually applied to cover the expanded posterior fossa.

A small number of neurological surgeons believe that detethering the spinal cord as an alternate approach relieves the compression of the brain against the skull opening (foramen magnum), obviating the need for decompression surgery and associated trauma. However, this approach is significantly less documented in the medical literature, with reports on only a handful of patients. It should be noted that the alternative spinal surgery is also not without risk.

Complications of decompression surgery can arise. They include bleeding, damage to structures in the brain and spinal canal, meningitis, CSF fistulas, occipito-cervical instability and pseudomeningeocele. Rare post-operative complications include hydrocephalus and brain stem compression by retroflexion of odontoid. Also, an extended CVD created by a wide opening and big duroplasty can cause a cerebellar "slump". This complication needs to be corrected by cranioplasty.

In certain cases, irreducible compression of the brainstem occurs from in front (anteriorly or ventral) resulting i
My daughter was diagnosed With Arnold Carrie malformation, two years before her brain slid backwards. Can you tell me the problems after that. I also have Arnold Carrie malformation. I was diagnosed and had surgery back in 1975, in which it was very rare back then. I have many many problems since then, since then since I’m 69 yr young, but I’m more worried about my daughter. She also is bipolar and  scitsofranic, I know that’s not how you spell it, but I know you’ll understand. Thank you

Experts believe bipolar disorder is partly caused by an underlying problem with specific brain circuits and the functioning of brain chemicals called neurotransmitters.

Three brain chemicals -- noradrenaline (norepinephrine), serotonin, and dopamine -- are involved in both brain and bodily functions. Noradrenaline and serotonin have been consistently linked to psychiatric mood disorders such as depression and bipolar disorder. Nerve pathways within areas of the brain that regulate pleasure and emotional reward are regulated by dopamine. Disruption of circuits that communicate using dopamine in other brain areas appears connected to psychosis and schizophrenia, a severe mental disorder characterized by distortions in reality and illogical thought patterns and behaviors
Hello, the disease you said is rare and I can't help you. I recommend a website for review: pubmed. hope this helps.
Hi Judy, Arnold Chiari Malformation is the type II Chiari Malformation. Type II is usually severe, I'd like to ask about your daughter's age, since Type II can cause life-threatening complications during infancy or early childhood. I think you've already learned that in Type II there's too much spinal fluid in the brain causing pressure, the bones of skull could expand to larger than normal. There might be change of breathing pattern, and apnea(no breathing in a short period of time), trouble swallowing, involuntary eye movements, weak arms, permanent muscle damage, respiratory failure. Bipolar disorder and Schizophrenia can be connected to genes and disorder in the brain network. The two are often mixed. I don't have experience in the treatment, I think you need to find an experienced specialist.
I still have all this even after surgery and it's getting worse. I had surgery going on two years ago. Haven't been able to work at all after surgery because of weakness in my arms and now I have trouble holding anything. It's seem to get worse now that I've had surgery and shooting pain always going throw my head on the left side. Hurt so back you will stop whatever your doing. Can't hold head down to sweep and mop or do dishes this because of the pain it courses. What should I do??
See another doctor, you need to find an expert on this. Apparently the previous surgeon screwed
Find a Neurologist quickly, someone didnt do the job right. We had several issues when my son had surgery done(including multiple surgeries)
I feel for all patients bound by this disease. What gets me is with all the doctors that did the CT Scans,MRI,S can still not treat my daughter. She is now 25 years old but can't enjoy life. Can't drive. Can't work. Can't go on dates. Etc.. because of the pain,and every day eye pain. And neck pain. Etc. Dr. Said too young for surgery. What can I do..
why the Dr. says too young for surgery, the surgery is often performed on children.
Hi, and love to your daughter. I am almost 50, and have battled the symptoms for as far back as I can remember. I have been accused of everything from trying to get out of school to "drug seaking". And I had troubles getting some providers to listen to my pain issues. When I finally got one to refer me to a Neurologist, that Neurologist diagnosed me with having MS. Because as you know many of the symptoms are the same. I have type 1, but I also have lesions on both the right and left ventricle. I finally wanted to go get checked again after having several falls. The last 3 were in public- smh... once in the Neurologist office, he brought a chair up to the desk next to his and explained my MRI pictures to me. I was shocked to think that something like that could be wrong. I had to watch my husband suffer a ruptured brain aneurism, and the thought of having my OWN brain issue scared me badly. But my neurologist was GREAT! He also shared some very good information with me. It sounds harder than you think- but he
It is my understanding that the symptoms will diminish greatly by age 30, when the female's brain stops growing. My daughter's doctor told her that surgery only had a 50/50 success rate and since she was so close to age 30, they decided not to do it. Marijuana is the only thing that helps her. Wr need to get medical marijuana legalization across all 50 States! But I'm not a doctor.
Unfortunately, most doctors haven't evem heard of chiari let alone know what to do about it. Supposedly..if symptoms don't present by early age(2-3) odds are you'll have no true problems from it. Unfortunately that's not completely true. Also presents with so many symptoms attached to other diseases it's often misdiagnosed or overlooked.  Keep looking online for as much info as you can until you find a Neurologist with an IQ then you'll hopefully be able to direct them. I know its difficult, I have 2 of 3 kids with chiari and my own neuro problems, so stay strong and do all you can for her
Is there anything to help to cope with this? Aren’t there any support groups? I need help the pain is horrible and the dr will not give anything to help me. Please help
You might see Dr. Paulo Bolognese. He is in NY.