Chiari Malformation

Specific Illnesses & Conditions
1

While searching, reading and asking others questions I cam across this information and wonder what you all think about this disorder. A lot of the symptoms are very close to what I experience. I think someone on here said they had been diagnosed with this disorder and would like to know what or how this diagnosis was arrived at by your doctor.

What are the symptoms of a Chiari malformation?

Many persons with a Type I CM do not have symptoms and may not know they have the condition. **Individuals with other CM types may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache **made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some individuals, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Adolescents and adults who have CM but no symptoms initially may, later in life, develop signs of the disorder.

ninds.nih.gov/disorders/chia … chiari.htm

Chiari malformation type I
Headaches, often severe, are the classic symptom of Chiari malformation. They’re typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:

*** Neck pain (running down the shoulders at times)**
* Unsteady gait (problems with balance)
* Poor hand coordination (fine motor skills)
*** Numbness and tingling of the hands and feet
* Dizziness
* Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
* Vision problems (blurred or double vision)**
* Slurred speech

Less often, people with Chiari malformation may experience:

* Ringing or buzzing in the ears (tinnitus)
* Poor bladder control
*** Chest pain, in a band-like pattern around the chest**
* Curvature of the spine (scoliosis) related to spinal cord impairment
* Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep

mayoclinic.com/health/chiari … N=symptoms

2

Hey Vic,
If you’ve had an MRI and it was normal, it wold rule out Chari.
and yeh the symptoms do sound familiar.

jen

3

TIMELESS or anyone else. I had a decompression of the brain for Chiari Malformation. The surgeon removes some bone from the back of your skull so the brain has more room to move around and hopefully the brain stem pops up and out of the spinal cord. I had no shelve on the back of my skull so my brain stem slipped into my spinal chord obstructing spinal fluid from flowing. It is often misdiagnosed until some of the symptoms appear and an MRI is done. I just thought it was interesting that I stumbled onto your site since I have so many health or medical issues. Migraines are terrible every day. But my most difficult problem is muscle weakness and nausea when I look down like to at the store, at church or walking the dog. I feel like a rag doll. Very, very tired.

4

— Begin quote from “jennyd”

Hey Vic,If you’ve had an MRI and it was normal, it wold rule out Chari.and yeh the symptoms do sound familiar.

— End quote

That is actually an incorrect statement. Really depends on who is reading it. The bottom line is there are only a few Neurologist in the US that understand Chiari, and roughly 20 or less Neurosurgeons that understand it. Jen, no disrespect but your wrong, and it really makes it so hard on patients with the lack of knowledge out there. Fortunently, Chiari Specialist are trying to educate as many doctors as they can. I heard from 2 offices, that a dx code is in the works for chiari patients that have less than 5mm. The tonsils are supposed to be 2mm above the foramen magnum, so anything hanging below that can be a problem. MRI is only part of the diagnosis tool. You need a Cine chiari flow study. Together this tells it all!

Chiari patients are often misdiagnosed with MS, Vestibular Migraines, and Fibromyalgia. The average Chiarian diagnosis takes 6 years. Because of the lack of knowledge in the medical field. You can have 3mm and be symptomatic, and someone can have 15mm and have no symptoms. Chiari is when the brain is to big for the skull. There is so much more to it, than a measurement. You can have chiari zero and have crowding. Or have 3mm herniation and have CSF problems. The problem with most doctors today is that they are misinformed and stuck on the old criteria of needing the tonsils to be 5mm below. This is old school. Doctor’s that dont understand this, will not even tell you, you have a herniation. Its very upsetting. Because it can change and needs to be watched. But no one told me. I didn’t notice it until I got my records to go to Dr. Hain’s appt. I saw it myself and started investigating. Dr. Hain saw it to and mentioned it to me. At this point I am dx with a vestibular migraine, until I see the Chiari Specialist.

Sorry this post just hit home, as Im so frustrated with the medical community and there lack of knowledge, and the way people are misinformed.

My friend off of facebook has been dealing with issues. We have been talking about it for a while, and long story short. I told her about Chiari. She happened to have a MRI that morning, told me 2 days later, my doc said no Chiari! Ya! I said ya right, get the mri yourself before you close the door onthis. She did and Low and Behold… 4mm herniation. I was so mad for her, and she was angry to. How can this be, that they dont tell me that! I said welcome to the world of Chiari, were doctors do not have a clue, unless they are specialist.

The symptoms that are given above, barely touch the list. Not to mention that migraines are a symptoms of Chiari. I know a lot about this subject because I too was misdiagnosed. Dr. Hain brought it up to me, and told me that my chiari can be causing my symptoms. This is the brain thing I spoke of earlier. I’m told I have 3.5mm herniation. I wasn’t going to talk about this, until I knew for sure. I’m seeing a specialist in Las Vegas. This is the closest Chiari specialist to me.

5

Very well put. I cannot tell you how many years Dr. would pass me to some other another specialist who played hot potato with me. You have depression, you have chronic fatigue some form of it. Let us to a Complete blood count. Try a holistic Dr. The worse is treatment for depression is like the middle ages when Drs just gave you a good blood letting. The Psychiatric and Md will admit they do not know why one pill will work for one person but not the other. There is no blood test, brain imagery or gene to help mental illness. Some medication by ‘fortune 500 company’s’ brought on more suicides. Family will tell you “I feel like I have to mother you” “Suck it up” “That is life”. I know it was said to me.

Back to Chiari malformation. After 7 years of no longer being able to exercise, shave at the sink, looking down to vacuum or clean, hospitalized from almost overdosing, unable to do my job, the migraines began. An MRI was done. I went to a renowned surgeon he put the X-RAY and said “I knew right away, you have Chiari Malformation” The surgical board advised the operation they said they could not promise it would work. I had to do it. I am not better but at least I know I am not imagining, lazy or a coward. I do have an illness.