Anybody have Arnold Chiari Malformation? Please answer following question if you personally have had it?

Question

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?

Answer 1

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

Answer 2

I am 19 years old and I have had 2 surgeries for Chiari over the past 2 years. I would always get headaches when I was younger and I would vomit from them. My doctor said that almost every person that was born with this development does not have any problems until the teenage years or early 20's. She also said that it is VERY common in celtic heritage. (irish, which my father is from ireland) My first surgery I had 2 years ago in February when I was 17. Everything went fine and dandy, but then in April my incision swelled up to the size of a grape fruit. I do not know how, but my stitches ripped internally and I had to get a 2nd surgery "chiari exploration" they called it. I have a scar that is about 8 inches right now and a soft spot that is about 4 inches by 3 inches.

Answer 3

Patients presenting with symptoms from the Chiari malformation often have received a variety of therapies. This can include medications such as analgesics, anti-inflammatories, sedatives, anticonvulsants, antispasmotics, diuretics, and steroids. Evaluation by a neurologist to evaluate for other neurological disorders is important. Physical therapy may be of help in some patients and evaluation by a chronic pain specialist may be of help in others.

Surgical treatment of the Chiari malformation involves creating more space at the region of the foramen magnum to allow the spinal flow in this area to return toward normal. This is done by a procedure called a Posterior Fossa decompression. The surgery is performed by creating an incision at the back of the head into the upper part of the neck. The muscles are spread to either side and the occipital bone and the back of the C1 vertebrae are visualized. Skull bone and often the arch of C1 (in some cases C2) are removed.

Under the bone is a tough membrane called the dura. The surgeon then opens the dura. Here, the surgical technique varies depending on the practice of the surgeon. Some surgeons open the next layer called the Arachnoid and may shrink the tips of the Tonsils with Electrocautery. Others do not open the arachnoid. Studies to date do not tell us which is the best procedure as there is no documented negative effect from shrinking the tonsils. The important point is to create more room and thus remove the crowding.

Most surgeons will then sew a patch of material into the dura to enlarge the foramen magnum. The wound is then closed with stitches to bring the muscles together and stitches or staples are used to close the skin.

The risks to surgery include leak of spinal fluid through the membrane repair creating a fluid pocket in the muscle (pseudomeningocele), infection, either in the wound or in the spinal fluid (Meningitis), occipital neuralgia, and neurological deficit such as an injury, hemorrhage, or stroke. There are also the risks of any major surgery such as pneumonia, or cardiac problems. Fortunately, for many people the risks are low. Your neurosurgeon will discuss the risks with you. :-)