chiari

[pepper77]

i am 31 have spina bifida and just been diagnosed with arnold chiari malformation. is this life threatening and as i do not wish to have the operation what can i do to prevent progression. i enjoy goin for a walk and using a stepper should i still be doing this an will i be able to have another child i already have one and would like another.

[selmaS]

  Hi...the post u r replying to is from 2008...this member has not been an active member in a while...u can try to send a PM (private message) as that they get a e-mail notification letting him know someone is attempting to contact them.

   We do have other members that are active that may be willing to have a chat with u...so u may want to start a new thread : )

[chiarian05]

I am 35.  I have dealt with chiari symptoms since I was 9 years old.  I didnt get diagnosed until I was 28 years old, with a 32 mm herniation of the cellebellar tonsills. I have had four brain surgeries now, they include: decompression, posterior fossa craniectomy, c2 ganglionectomy and a vp shunt.  Dont take chiari lightly.  Find a chiari specialist because they are the only ones qualified to take care of it!  Some people with chiari are givena choice wether to do surgery or not, I didnt have a choice...it was so far gone that if I had not elected to do surgery, my kids wouldnt have a mommy cus Id be dead.  Chiari can be deadly if not treated in a timely fashion.  I am not a chiari specialist but I have been studying chiari and syringomyelia for 6 years, includding the research thats been done and published.  My oldest daughter Martina (age 16) has chiari and a cyst on her frontal lobe of her brain.  My youngest  (age 10) has chiari and syringomyelia with two syrinx's, cervical and thoracic.  I am in the process of finding a surgeon for my youngest lil girl.  Waitiing on surgery is a personal decision but for me and my kids, its too dangerous and not worth the risks involved.  Do you know what your herniation level is?? not that it completely matters.  You can have hardly any herniation of the tonsills but have a tremendous amount of symptoms and pain.  You gotta put the two together to make an informed decision.  There are a few things to take into account when deciding.  What has your doctor recomended so far??  I am here if you ever need to talk.  I dont get on medhelp everyday but I will be checking it atleast a few times a week.  My name is Shay btw.  

I also have spina bifida occulta, charcot marie tooth syndrome, IBS, errossive gastritis, COPD, osteoporosis, vitamin D and vitamin B12 defficient, severe insomnia and Ive had three heart attacks....just to name a few.

Hope Ive been some kind of help.  

[chiarian05]

HI

[Shane99]

Chiari is a very serious matter. It can be life threatening and can cause extreme pain and other problems if ignored - including paralysis. While you may not need to have surgery, if your neurosurgeon suggests it, I would consider it very carefully. I would think it could seriously effect your Spina Bifida if nothing else.

I'm not in the medical field, and don't claim to be an expert on this or anything else, but I have reseached this quite a bit since I discovered I am Chiarian. I had a herniation of 20 mm and was told that I pretty much needed surgery immediatly or I would become paralyzed. I believed my doctors without hesitation because I had already started experiance numbness in my hand and legs and had the surgery this past April 23rd.

There are certain medicines that can help with certain symptoms, but as far as I know, the only way to really slow the progression down is the surgery. And even that isn't a cure.