some sites -

Chiari Info
www.conquerchiari.org Free site with background info, research updates, interviews, more

Chiari Malformation Information Page: National Institute of ...
Chiari Malformation (Arnold-Chiari malformation) information page compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
www.ninds.nih.gov/disorders/chiari/chiari.htm - 20k - Cached - Similar pages

Chiari Malformation Fact Sheet: National Institute of Neurological ...
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the ...
http://www.ninds.nih.gov/disorders/c...ail_chiari.htm - 39k - Cached - Similar pages

Chiari Malformation - Symptoms Treatment Chiari Type 1 ...
Chiari Malformation - Arnold Chiari Malformation - Chiari Type 1 - Chiari Treatment - Chiari Symptoms.
www.chiaricare.com/ - 20k - Cached - Similar pages

What is the Chiari Malformation?
Comprehensive resources on Syringomyelia, Chiari Malformation, free info packet on Syringomyelia and Chiari Malformation for individuals and professionals.
www.asap.org/chiari-malformation.html - 17k - Cached - Similar pages

What is Chiari Malformation?
Chiari malformation includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull ...
www.northshorelij.com/12.cfm - 86k - Cached - Similar pages

Chiari Malformation Syringomyelia News
Comprehensive site providing information on Chiari Malformation, syringomyelia, and related topics.
www.conquerchiari.org/ - 16k - Cached - Similar pages

Chiari Malformation
Detailed information on Chiari malformation, including causes, symptoms, diagnosis, and treatment.
http://www.healthsystem.virginia.edu...euro/chari.cfm - 21k - Cached - Similar pages

Chiari Malformation - Diagnosis and Treatment Options at Mayo Clinic
Mayo Clinic is one of the largest centers in the world for treatment of neurological diseases, including Chiari malformation. Mayo Clinic specialists treat ...
www.mayoclinic.org/chiari-malformation/ - 23k - Cached - Similar pages

NeurosurgeryToday.org | What is Neurosurgery | Patient Education ...
Chiari malformation is considered a congenital condition, ... This form of Chiari malformation may be associated with syringomyelia/hydromyelia. ...
http://www.neurosurgerytoday.org/wha..._e/chiari1.asp - 47k - Cached - Similar pages

Chiari Malformation
The Chiari I malformation, also known as the Arnold-Chiari malformation, is a relatively common syndrome caused by displacement of the cerebellar tonsils ...
http://www.dizziness-and-balance.com...ar/chiari.html - 17k - Cached - Similar pages

google search - full results-
http://www.google.com/search?hl=en&q...=Google+Search

We do have a Chiari forum also-
http://neurotalk.psychcentral.com/forumdisplay.php?f=71

Hi tshadow, I am going to try to explain this as well as I can but as breifly as I can because it would be impossible to explain all the variations of this condition here. The tonsils I refer to are not the ones in your throat. Each person has 2 cerebral tonsils at the base of the back side of your brain. This is part of your brain. In general I will explain part of the Chiari 1 malformation condition. These tonsils can literally be forced down into or pulled down into your spinal canal. They literaly herniate into a persons spinal canal. That is what one form of Chiari 1 Malformation is. Depending on how the tonsils lie or how tight the space is in your head for your brain, it can cause your Cerebral spinal fluid that also lubicates your brain to not circulate correctly and sometimes even get blocked permanently until urgently corrected or intermittantly. Sometimes people don't even have a problem with the tonsils being down in the spinal canal. Meaning "0" Herniation. But they still have a problem with CFS flow in thier head due to a structural problem like possibly too small of a skull for their brain. This can also be caused by even benign growths in the head. (MRI with CFS flow study can help determine what the CSF flow is in your brain. There are other test as well. But spinal taps are not recomended by many doctors because that proceedure can actually pull the tonsils further down into the spinal canal making the problem worse.) When any of brain/tonsil/CSF flow variations happen, any of them can cause pressure to any number of areas of the brain stem or other organs in the skull. This causes a wide variety of symptoms from patinet to patient just depending on where the pressures are, how bad they are, and what ativity the patient is doing at the time. Sometimes a persons tonsils can herniate 25 mm and even more. This can easily cause pressure and over time damage to the spinal cord. I hope this helped.
PS. I will post links to sites in a few minutes to help everyone interested to gain more information. Dee

I see Jo55 has now posted some on the site. Thanks Jo55

Here's some more. I'll try not to do a repeat of the others.

I hope these links work. I've note added links on this site before. I hope I don't do anything incorrect. But here goes.

Here are many helpful VIDEOS from the Chiari Institute you can watch that will help a lot.
http://www.northshorelij.com/body.cf...6&PLinkID=6407

You will find 2 pages of very detailed VIDEOS here from the 2007 Chiari symposium.
http://hosted.mediasite.com/hosted4/...1-ac4e8e9bb220

Here's one other place to go that may have a few more links you might want. http://www.chiaritimes.com/ChiariTim...nizations.html

Here is a GREAT VIDEO made by the Chiari institute of a person with Chiari and tethered cord and EDS. http://www.veoh.com/series/acm

This is a fun site with personal sucess surgical stories, etc.
http://www.pressenter.com/~chip/chiari.htm


Here's just one of the recommended Doctors pages.
http://www.pressenter.com/~wacma/usdocs2.htm

I'll add more later.
Hope you had a pain free day everyone,
Dee

Fern, I have read in several places that sometimes, but not always, a myleogram can cause the tonsils to be pulled down into the spinal canal. Which could have made your headaches really bad. It can either start the Chiari or cause an already existing condition to get worse. When I come across that again, I'll post it. I just don't remember which sites I read it on since that hasn't happened to me and I've looked at so many sites. You might try some searchs on that. Another note. Sometimes a persons herniation does not happen until they are in the upright position, like standing up. This is being discovered in the newer upright MRI's. Hope this helps, Dee

This is interesting. Is herniation temporary or permanent? I had to lie down for ages due to the post myelogram headache. I wasn't well when lying down but sitting up was truly unbearable. A follow-up MRI of the brain didn't show a problem but it makes me wonder if they looked for tonsil herniation as opposed to just a CSF leak. I apprecaite your posting when you find the appropriate website or articles.

And I encourage other TOSers to say "no thank you" when a doctor requests a CT-myelogram. I have learned to say no thank you to many things doctors request but i didn't think this would pose such a problem. The only benefit was that lying down for so long was good for my TOS--no computers, no holding books or writing notes nor housework or cleaning or shopping; just rest and watching DVDs and it did benefit my list of symptoms for awhile.

If you don't have the major headache any more, but still have simular ones with certain activities described by Chiari Specialist, the proceedure could have made the problem worse at the time, but it corrected itself to the degree it could over time. If you had Chiari herniation before the test, I would suspect that degree of herniation would not have got better since it was caused by something else and possibly long standing and the correction would have only been to that point. I hope this makes sense. Just remember, I'm not a doctor, just a suffering patient that has been driven by doctors and medical suffering to learn. Dee

Fern, If it was me I would get copies of any and all MRI's and CT's to. If you have separate MRI's, compare them. There are tons of pictures on the internet of 0 to large herniations.

You may find this kind of ironic, as T&D, you mentioned this...

I talked to a doc today about this issue, and that I would like to have another person take a look at various images that back at my old area's hospitals, and other offices, etc., since this doc hasn't seen any...and the doc said, "oh, a radiologist has already seen it and this kind of stuff just doesn't come up..."

So he basically said "no thanks" to my request!

Now, I am a 5 years and still totally disabled by the TOS situation, with no hope for any cure, and treatment now is basically just meds, so WHY wouldn't this doctor want to take a look and see for himself if there were any other structural problems (other illnesses) that he could identify that might help me?

This is so frustrating.

T&D, what do you think I should do?

Fern, I thought you might want to see this article. This might answer some questions for you. http://www.conquerchiari.org/subs%20...tor%205(3).asp

Dee

tshadow, I really understand your delima more than you know. I feel badly for you. The same feelings are what caused me to finally start educating myself. I ended up getting CD copies of every test I had done that was on any kind of film. I started looking on the internet for things that fit my symptoms, etc. I started learning as much as I could about reading CT's and MRI's. By doing this, I actually was the one that found my pelvic congestion syndrome and my renal vein entrapment syndrome that was also missed on CT's over several years of CT's. The strange thing, before educating myself on reading some of the scans, 2 1/2 years ago I had an MRI of my cervical spine and brain. I had been diagnosed with Fibromyalgia and TOS for years as well as having endometriosis. I had visited the Fibromyalgia web site and there was information by 2005 telling how many people had been diagnosed with Chiari that had once been diagnosed with fibromyalgia. So I contacted the Radiologist right after my MRI's were done in 2005 and ask him if he would specifically look for a chiari malformation. He says OK. When the report came back it said "No Chiari Malformation." I even ended up asking the neurologist to check for the same. He said no chiari. So I dropped the whole matter and continued to get worse with my symptoms over the last 2 1/2 years. I never did go back and look at those studies until recently after I had more MRI's of my cervical spine and brain. The radiologist said in the new report, "Chiari 1 Malformation". I was in shock. Come to find out, the VA had recently hired a neuroradiologist the knew what Chiari was, the importance of the finding and reported it. I spoke to him a few days later after I looked at my 2005 MRI's and he agreed it was there then too. I felt like kicking myself that I had completely trusted the Dr and radiologist opinion in 2005 and not followed my gut feeling. I should have gone back to those MRI's and learned how to read them to find out if I had Chiari or not. The internet is so full of information now from highly educated doctors and research hospitals, it is unreal what a person can learn. I can easily spot an obvious herniation now on an MRI.
Your situation with your doctor is not uncommon. Your doctor may not be able to read the scans. My primary care doctor, GI doctor and many other dotors couldn't and any time I had questions about any scan or x-ray, he would tell me to go ask the radiologist. That's why the VA radiologist is now a friend of mine. He says I've actually taught him a great deal of new things. The best idea that might help you is to get your scans yourself on CD and then start looking and comparing to other Chairi MRI images on the internet. That's also the cheapest way. You will be amazed at what you can learn in a short time from all the available images and comparing them to your scans with the information on the internet. It's not that hard, honestly. I've seen a few people put MRI pictures on a web page and then put a link on a chat board so other people can have a look. Hope this helps you and anyone else reading.
Take care, Dee