Chiari One Malformation

[realgone58]

My wife is 37 years old. Appoximately 17 years ago she started having severe headaches. They have not stopped once since, and have gotten very severe. No medication resolves them. Seizures from pain are almost a nightly ritual. She has also had several TIA's a few years ago. Three years ago she had a 9mm aneurism coiled in the subclinoidal tissue near her occipital bone. It is followed with a much smaller aneurism that is not coiled located behind it. Brain pain still exists uninterupted. Recently we watched a story on Discovery Health about a girl that suffered from Chiari one malformation. My wife displays all of the symptoms that the girl on the show had. These are her symptoms: inflamed thyroid, sore throat, low blood pressure, constant headache that travels within the head, dizzyness, large bulges where the occipital meets the neck, nausea and abdominal pain, weakness especially the entire left side, blackouts (seizures), and numbness in extremities. Was also wondering about a retroflexed odontoid. Something is very wrong and we are searching desprerately for someone to help her. Can someone please share thier thoughts on this? She's so young and we have a beautiful family, and she is being forced by whatever is happening to miss out on so much. Thank you in advance for your help.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
    The symptoms that you describe are very concerning and I would suggest that you visit a neurologist at a major academic center.  If your wife is having seizures than she needs medical help to bring these under control.  I would suggest that your wife have an MRI of the brain with MRA (pictures of the brain and its blood vessels), and an EEG (brain wave test).  Depending on these results medications or further surgical intervention may be able to help.  Headaches after aneursym coiling is a tough problem to treat and often requires a headache specialist to help devise a preventative as well as a immediate treatment strategy.  I would recommend that you see a headache specialist (a neurologist with extra training in headache).  From your description, It does not sound like you have a chairi malformation.  Chiari malformation allows the brain to sink down in the skull and can kink the spinal cord causing headaches and dysfunction.  This can be diagnosed by MRI.
I hope this has been helpful.

[patsy10]

I also have a Chiari 1 malformation.  I have all sorts of symptoms numbness, tingling, twitching, headaches etc...My neuro does not think this is  causing these symptoms.  If she has one it should show up on a cervical spine MRI.  Mine showed on both cervical and brain MRI's.

[TMZ]

  I began getting sick in July of 2001 & was diagnosed with CM1 August of 2005. I grew up totally healthy except for what we thought were migraines. This has totally changed my life.  They repaired my malformation, removed herniated tonsils & completed my duraplasty with a cadavere's pericardium, & performed laminectomies on C1-C6. My surgery lasted 16 hours on 9/26/2005.  My first surgery, 12/04/2004 was Micro Vascular Decompression surgery for Bilateral Geniculate Neuralgia...also caused by the Chiari Malformation. What most don't know is Chiari Malformation is a type of Spina Bifida. I would have been the last person you would have ever dreamed would end up like this. I had a perfect life. Great husband, child, family, friends & career.

I would reccommend you find a Neurosurgeon at a teaching facility. They are usually connected with universities with medical schools. You will need to have MRI's of the brain & cervical spine with & without contrast. Some recommend sine MRI's. This will give you a firm diagnosis of Chiari Malformation & if you have herniated tonsils. Arnold Chiari Malformation has many many horrible symptons. Some that have the malformation never have symptons at all.

Please check out the following sites:

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
http://www.pressenter.com/~wacma/

These were very helpful to me.

I am 39 years old. I feel so sorry that your wife is ill & may have this condition. As women this robs us from not only our health & our future but of caring for our families. Please love your wife & be understanding as possible. If she does have Chiari Malformation with or without complications this will be more challenging that you could ever imagine.

Please email me if you or your wife need someone that understands ***@****

Hope this Helps,
TMZ

[realgone58]

Thank you for the responses. My wife is currently seeing a neurosurgeon at a teaching facility.........has been for quite some time.  He claims he cannot explain the lumps at base of her skull on the back of her neck. She has not had a CT scan done. She cannot have an MRI due to the platinum coil on the aneurism. Wonder if a CT scan would be sufficient?

[jcverive]

If an implant makes MRIs impossible, CATs should be used.  A CT of head and neck should reveal a Type I Arnold Chiari Malformation (or ACM-1, for those who abbreviate).

Best of luck! - jeff

[Robx]

I have struggled for a long time to find the cause of my varied symptoms and only recently did I final find the answer. Chiari One Malformation was one of those things I believed I had too, (after seeing the same show ;) ) The problem is that its symptoms can be so all encompassing it could fit a lot of other conditions. Now I am not a Doctor so take all of this for what its worth (probably not much ;) ). But I would take the most obvious symptoms first and work out to the lesser symptoms to determine if they could be related to the main symptom. Also its important to remember that she could have more than one condition and some symptoms might not be related to the overall problem.

In your wife’s case the vascular problem is the most significant. Several TIAs and two aneurysms in someone in their 30’s seems to raise a pretty large red flag. You didn’t mention about any diagnosis of the “inflamed thyroid” has there been a determination of the cause of it? That would be the first thing I would investigate and get a firm diagnosis (confirmed by tests, and not just a Drs guess) of what is causing the Thyroiditis and indeed make sure it is Thyroid and not parathyroid, which can cause Hypercalcemia which has a wide range of symptoms and pains but I don’t think it causes aneurysms, How long has this been one of her symptoms?

The reason I ask is that the Thyroid hormones play a big part in Carbohydrate metabolism. Some  types of Thyroiditis can lead to changes in blood glucose levels. High glucose can cause TIAs and can damage to  the lining of arteries weakening them, which can lead to aneurysms. This damage could also cause headaches. High glucose can also cause peripheral neuropathies and poor circulation, which could cause pain and  numbness in extremities, it can also cause abdominal pains. Low blood glucose could lead to seizures, blackouts and dizziness as well.  I would not trust a single blood test I believe there are specific tests which determine blood glucose management better than the standard blood workup, If it were me and I thought this could be a possibility I might even get a glucose meter and test myself often, especially when particular symptom arises (headache, dizzy) and keep a log to compare levels overtime and how they relate to symptoms. You can use the results to help your Dr along the path to proper tests.

I want to be clear I am not saying that this might be what she has, and in fact you may have already eliminated this as a possibility, I am just showing how I went about finding a solution. I would concentrate on the proven problems, in your wife’s case vascular problems and Thyroiditis and see where those two vectors cross and maybe it will lead you in the right direction. I was constantly amazed at how seemingly disparate symptoms can be related and how conditions sometimes manifest themselves in small ways. So its also important to write down all of the potential symptoms no matter how insignificant they might seem because you might end up connecting some dots through seemingly unimportant details and symptoms. You don't have to show this list to a Dr, in fact it would probably prompt the dreaded "see a psychiatrist" diagnosis quicker than anything I know, Just use it for your own purposes.  

It sounds like her symptoms could (I stress could) be related to an endocrine problem or even an auto-immune disorder like some kind of arteritis that acts upon the vasculature, but again I am not a Dr.  

I wish you and you wife the best and hope you find the right solution soon, I know the feeling of having a wide variety of symptoms and some Doctors not being much help, it took me 7 long years and countless times being told to see a psychiatrist or having anti-depressants or anti-anxiety drugs prescribed. Only to find the truth much later than needed.

[patsy10]

What did they finally diagnose you with?  Did I miss it in your post?  Just curious.  I was impressed with your knowlege.  You have definitely done your research.