Does anyone know anything about Arnold Chiari Malformation?
I was recently diagnosed and don't know a lot about it. Any info would be helpful.
----------
A good site to start www.conquerchiari.org (
+ info)
Anybody have Arnold Chiari Malformation? Please answer following question if you personally have had it?
I would like to know what you do to alleviate the pain without drugs. Also I would like to know if you have had surgery and if you think it helped. Thanks!
OK, as no one answered this, does anyone know of someone who has had it and the best treatment?
----------
now thats better I had almost answerd it a couple of times, but I have never had it. I would recommend to talk to your regular doctor about chronic pain medications, if that does not work I would try a local pain clinic, good luck (
+ info)
I was dianosed with Arnold Chiari Malformation and was wondering if there was any sites that might help me?
The best sites are ChiariConnectionInternational.com (CCI) and Thechiariinstitute.com (TCI).
At CCI, you can join their very informative Yahoo support group that is monitored by expert Chiari neurosurgeons and staffed by very experienced Chiarians. You' can become educated in all things Chiari and receive excellent support.
At TCI, you can find state-of-the-science medical and surgical help from the most experienced Chiari experts. These are the docs who made the big discoveries.
Additionally, you can learn a lot through ConquerChiari.org, where recent research is translated for the lay reader.
As you sift through everything, be sure to learn about the latest discoveries that your local doctors probably won't know, such as the fact that about 14% of Chiarians have an underlying hereditary defect in collagen that creates a disorder such as Ehlers-Danlos Syndrome (EDS), and that about 63% of the people who have CM and EDS have internal adhesions and a tethered spinal cord. These related conditions change the protocol for Chiari treatment and require true experts to manage them well. If you are one of the people with this combination, you'll be able to talk to others like you at the groups listed above. Be sure to do your homework before you let anyone "fix" you, okay? Good luck!
-ZipperedZebra
(doing well with Chiari, Syringomyelia, Ehlers-Danlos, and Tethered Cord). (
+ info)
what is the life expectancy of a person with arnold chiari malformation type 2?
It depends on the severity of the case. That is a question that really only a neurosurgeon could answer by looking at the MRI.
My friend's 8 year old son has this malformation. It was not present at birth so it may have been type 1. He is doing really well now and almost back to his normal activities before the growth became a problem. He may need surgery again in the future if the growth accelerates. (
+ info)
My mom told me I was diagnosed with Arnold-Chiari Malformation as a baby...?
And I have been reading about it in recent times. I'm almost 18 and have not ever experienced the symptoms that some others who have it, have. Is it possible there was a mis-diagnoses? Or am I not old enough to be feeling the effects yet?
----------
I agree with Cat's mother....it still might be early, you might have been misdiagnosed or you migh thave a mild case that the hernation isn't that bad. I would visit a neurosurgeon to follow up on that. Would your mom still have the old films? take those if you have them. (
+ info)
I had decompression surgery for Arnold Chiari Malformation Type 2, but I'm now having reoccurring symptoms?
I find myself losing my balance, and losing sleep. I saw my neurologist in December, and had a standard neurological exam, and the doctor told me that everything seemed normal. I also had an MRI in May of '09, which showed some reoccurring skull congestion, but the doctors reassured me that nothing was wrong and not to worry. I'm still concerned, should i see my neurologist again soon and tell her about my concerns.
thank you :]
----------
(
+ info)
ARNOLD-CHIARI MALFORMATION TYPE 1?
I have been suffering with really bad neck pain and migraines i recently had an MRI that stated i had arnold-chiari malformation type 1 and a slight reversal of the normal cervical lordosis which it says is non-specific but could be due to positioning or muscle spasms.My doctor laughed at me when i acted concerned about the malformation he said that it was totally normal. Is that true?
----------
He should not have laughed at you. When people hear of malformation associated with their skull or spine, combined with pain and migraines, it is always good form to explain things clearly and calmly until the patient is reassured that everything is ok and why. What sort of doctor did this? Were you talking to a neurologist by any chance?
I'll explain the easy one first:
Your spine, when looked at from the side, should have a slight "s" shape to it. When you have a muscle spasm, or if you were in the "wrong" position it could have made the MRI results look different than what your spine actually positions itself in your normal stance. They may want to double check that just to be sure all is well. If it is slight and you have a known muscle spasm that is currently being worked on, then they might just take that as confirmation of your condition.
Now, for the Arnold-Chiari malformation:
whether or not what you have it is normal depends on how the radiologist reads the MRI. Sometimes it can be an overcall if the cerebellar tonsils are not at the foramen magnum at the time of the MRI. That may or may not need surgery, but that needs to be determined by the physician in charge. I am assuming they will recheck that specifically.
If this is really bothering you, and is a concern (especially when considering your symptoms), honestly I would consider getting a second opinion. (
+ info)
is there any connection between cervical dystonia and arnold chiari malformation?
I have been diagnosed with both.with contiuous research,i find that there are many similiar physical symptoms.yet i have been told by quite a few neurologists that there is no connection.I really don't believe the doctors have enough knowledge of either condition,thus causing their lack of information.
----------
Arnold-Chiari malformation is visible is radiologic studies. It is not all that common, and in 14+ years of working with balance disorders, I have only come across one patient with it.
As an Audiologist, I do not know much about cervical dystonia. If possible, I would consult one of the larger balance centers that have a multi-disciplinary team in order to ensure an accurate differential diagnosis.
If you do not have access to a large center, I'd suggest starting with a Physiatrist (a physician specializing in physical medicine and rehabilitation).
Another point to consider is this (again, I am uncertain if it truly applies in your case): There are conditions for which we are unable to cure the cause, but can only treat the symptoms; and thus a differential diagnosis is splitting hairs in a sense. So if the symptoms are the same, and the recommended treatments the same, what difference will it make in your treatment and ongoing care to know whether you have one, the other or both conditions? (
+ info)
Cause of Arnold-Chiari Malformation: Please only answer if you have medical knowledge of some form.?
Hi,
I would really appreciate some input on my medical conditions and the likely causes. It is going to take some time to write all I need to but I would be forever grateful if a few knowledgeable kind souls would help me. Thanking you in advance.
I was diagnosed with Arnold Chiari in June of this year. I was first referred to a neurologist when I began getting regular headaches after being hit in the head by a basketball late April. After having an MRI, it was found that my cerebellum was herniated by 9 mm.
Googling answers, and even responses from my doctors have been varied and uncertain. Does anyone know if this is more likely to be caused by genetics or from the head injury? I was thinking that maybe I had this malformation before the head injury but the head injury brought on symptoms - either that or the head injury caused the malformation - Does anyone know?
Something that complicates the situation is that I have not always had peak physical ability. From a young age I was diagnosed with Ataxia (which didn't show up on the MRI) and also an intention/essential tremor (not sure which.) My mother also has the tremor.
I'm now uncertain as to whether the malformation has been causing my tremor and ataxia, or if they are a separate condition and the malformation is only responsible for my headaches and thus caused from the head injury.
I'm having decompression surgery late November and will be in hospital for 2 weeks. What I'd like to know is whether people think my tremor and ataxia will also be relieved.
In summary, and taking all of my symptoms and medical history into account - Would it be supposed that my Arnold Chiari is:
1. Caused by genetics entirely, and thus the head injury did not hasten the onset of symptoms but was just a coincidence.
2. Caused by genetics partially, thus I already had the malformation and the head injury hastened the symptoms
or
3. Genetics play no role and my head injury caused the malformation and thus the onset of symptoms.
If you have read all of this and/or have a contribution, I am forever grateful. Thank you very very much. I have been confused about this for weeks now.
Thanking you and kind regards,
Sarah
I wasn't sure how to respond individually to your messages, so I am doing so by adding details.
Thorbjor - thank you for the links. How did your granddaughter's surgery go - was she relieved of symptoms? Was hers acquired or related to genetics?
"?" (medical student) - thank you very much for all of your help, you have answered my questions. I'm 18 years old and am female. Yes, I have type 1 and originally I had more symptoms: sensitivity to light and dizziness essentially.
I do not in fact have an occipital headache but pain on my temples at the front of my head but my doctor assures me this is still related.
Something that may be related is that my mother has kidney disease and was taking medication for high blood pressure during her pregnancy with me.
Thank you very much for all of the information. I'm feeling much clearer on what is happening now. You are doing your PhD on Arnold Chiari?
Good luck with your PhD and thank you once again.
----------
How old are you? Male or female (Female has more of this disease).
Have your Doctor told what is the type of you Arnold-Chiari malformation? Is there any other symptom?
From your description, it seems you probable have a type-I variety. (You are having mild symptoms & I hope you are of certain age to describe this things so well. And only 9 mm herniation).
This malformation can cause ataxia, some muscle weakness (Spastic quadriparesis). That may be the reason you do not have a peak physical ability.
Essential tremor may or may not have an association.
Severe form of types II & III present during infancy & some infants die due to respiratory difficulty or associated malformations.
Some form may become evident during childhood with gait ataxia & with some sensory & muscle weakness (Spastic quadriparesis).
Type I & milder form of type II may present in adult life with ataxia, occipital headache (pain at the back of head),
[I think your description matches with the the childhood or adult onset].
Cause:
The exact cause is not still clear. Researchers have several hypothesis.
Genetics is thought to have some role.
Some changes are observed during embryonic period (before birth).
Outside embryonic period, acquired cause are also considered mostly chronic hydrocephalus.
But acute trauma is not considered as the cause.
As you already had ataxia before & there is no hypothesis for acute injury to cause this, we can assume you already had this Arnold-Chiari malformation before & you sports injury is probably just a co-incidence.
Prognosis (what you can expect from the decompression surgery):
1. This surgery mainly focuses on preventing future damage. That means prime aim is to stop/lower the progression of your problems.
2. Milder sign-symptoms may respond well to operation. But long-standing problems has less chances. Brain tissue has very less capacity for regeneration.
For now, we hope you will get some improvement. And the surgery will help you from further damage.
In near future, we can hope some more treatments will come to field. [we have some excellent research progress in stem cell transplant, inducing patients own stem cell & many more. But we have to wait for them to come to clinical trial].
I appreciate that you have a positive attitude towards patient education. This is very important part.
I am a medical graduate, now doing my PhD research. I hope the information above will help you to some extend. If you wish to know more, I can try & may suggest some books for you.
Good luck.
****Reply:
Hi Sarah,
Thanks that you replied to our questions.
Sensitivity to light and dizziness essentially.
No occipital headache but pain on temples at the front of head.
Has he/she told anything about hydrocephalus?
I did not noticed your name, otherwise I would know that you are a girl. (Actually I replied to your question when I was having some experiment.)
I am doing PhD on regenerative medicine (to recover the damage after we get some injury including trauma, stroke etc & also the damage in Arnold-Chiari. But at present not exactly on it. Now on Trauma & stroke). But when we meet many people around us, we can share ideas from others' research & experience.
Whatever may be the cause, you do not need to worry about that as you cannot change it now. But is may be important to when you will wish your child free from it.
For sending e-mail, you can click on my profile & then on the right side or in some place or may be after right click, there will be an option "send e-mail to this person". You can send me e-mail from there. But I checked you have blocked this option. I kept it open so that any people in need can seek more information if they think necessary, but they will not see my e-mail address (so junk-free, I think). You can send me e-mail (but for getting an reply probably you have to send you e-mail address or make the option on in yahoo answer.)
I really appreciate your attitude to the disease. Most doctor want their patient to be like this. You are 18, so you may get a career in Medicine!
Again good luck to you & your surgery. (
+ info)
Do any of you know about Arnold Chiari Malformation??
If so do you know if one should limit time sitting straight up? Just not sure if prolonged sitting or standing would make the brain sag more?
----------
http://www.chiaripeople.org/aboutus.php
This is a website run by a lady with Chiari malformation. She was the one who had a house built by Extreme Makeover Home Edition. (
+ info)
We do not evaluate or guarantee the accuracy of any content in this site. Click here for the full disclaimer.