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#201169 - 03/12/11 02:19 PM Confusing scary doctor visit
jhein Offline
Registered Visitor

Registered: 10/07/07
Posts: 111
Loc: milwaukee
I just went to a spine specialist and I'm concerned about his concerns. Apparently on my MRI of my cerivical spine they can see something called a Chiari Malformation on my brain stem. Previously I was told I have an abnormally large Arachnoid cyst. Doctor further stated that the spine and neck issues seem rheumatological in nature. I was undiagnosed with AS about 3 weeks ago. This doc referred me to another rheumatologist asked for for a full reumelogic workup and to a neurologist for neurologic evaluation. I do not remember the name but he said I had some involuntary reflex when they flicked my fingertips and that overall my reflexes were extremely brisk. It is frustating to have no answers but when you throw these symptoms in a basket it does not sound good. Anybody have anything like this? or know anything about this?

#201174 - 03/12/11 04:19 PM Re: Confusing scary doctor visit [Re: jhein]
ElizabethAP Offline
Registered Visitor

Registered: 02/25/11
Posts: 118
Loc: Upstate New York
There's a girl on butyoudontlooksick.com forum that had this, and I believe it was corrected through surgery. It really depends on the type and how severe it is to figure out what they'll do for treatment. Have you tried looking around and doing your research? I did a quick google search and found some information.

Some of the symtoms;(from the Mayo Clinic)

* 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

"I've had nothing yet," Alice replied in an offended tone, "so I can't take more."

"You mean you can't take less," said the Hatter: "it's very easy to take more than nothing."

#201175 - 03/12/11 04:34 PM Re: Confusing scary doctor visit [Re: ElizabethAP]
Mary Beth Offline
Registered Visitor

Registered: 04/14/05
Posts: 2089
That does sound scary. I am not familiar with that condition, but this page:



Many people with Chiari malformation have no signs or symptoms and don't need treatment. Their condition is detected only when tests are performed for unrelated disorders.

I guess there are varying levels of severity.

Before I was diagnosed with AS, I was hyperreflexive (over-active reflexes) on top. After I was diagnosed and got the inflammation under control, that symptom disappeared completely.

So it's possible the brisk reflexes are from the Chiari malformation, or from inflammatory arthritis, or from something else altogether.

I hope you get answers soon.
43, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi

#201176 - 03/12/11 04:45 PM Re: Confusing scary doctor visit [Re: ElizabethAP]
cemc Offline
Registered Visitor

Registered: 01/15/10
Posts: 3148
Loc: UK
I'm glad you are getting a full work up from both rheumie and neuro.

I have heard of a few people with AS who also have mild chiari malformations - its often congenital, but people don't know they have it until much later in life, or until it is spotted on an MRI done for another reason. Its where a bit of the bottom of the cerebellum sits a bit too low and intrudes into the top of the spinal cord. While it could be causing some of your symptoms, I would probably avoid googling too much at this point and wait to ask the neuro how bad yours is, and whether it could be to blame for anything.

Brisk reflexes are a sign that there is some neurological damage though it could just as easily be the result of a herniated disc pressing into the spinal cord. It is best checked out by a neuro, but again, no point second guessing this.

FWIW, I have quite substantial neuro signs (mostly upper motor neurone, and include some brisk and abnormal reflexes, and wacky coordination on a couple of the tests) but having had three separate neuro checks over the last five years the conclusion is that there isn't anything primarily neurological going on. I have to therefore conclude that it is all coming from my spine.
Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares

#201183 - 03/13/11 03:17 AM Re: Confusing scary doctor visit [Re: cemc]
Jennyfoo Offline
Registered Visitor

Registered: 05/29/09
Posts: 1636
Loc: Folsom, CA
I have a mild Chiari malformation. If you're not having severe neurological symptoms, it's unlikely that the Chiari is causing problems. I was just diagnosed with it in August and spent 6 months ruling it out as the cause of my headaches and other neurological problems. Basically what's important is to make sure that the low-lying cerebellar tonsils don't impede cerebrospinal fluid flow. If they do, surgery can be done to restore the flow.

A lot of Chiari symptoms overlap with symptoms of other disorders. It's very important to keep a clear head and not try to blame Chiari for everything if it seems to fit. I did that. I was sure it was the problem because it explains so much. There's really a very small chance that it is the cause. I've been diagnosed with secondary Fibromyalgia, which covers many symptoms. I also decided to self-treat my hypothyroidism that my dr didn't think was necessary. I started taking desiccated thyroid, and within a few days, I felt TONS better. My daily headaches mostly went away after a week on the thyroid supplement too.
-Jenn. SAHM with 4 kids. Diagnosed with AS('08) Psoriasis, probable Sjogrens(won't do lip biopsy), Fibromyalgia, Chiari Malformation, PCOS, endometriosis, diabetes(type 1), metabolic syndrome, mild hypothyroidism...
Remicade & MTX.

*I am in no way associated with the medical profession other than doing my best to keep them in business. Any advice I give is purely my own opinion and should not be substituted for qualified professional care.


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