CAN ARNOLD CHIARI COME BACK AFTER SURGERY???

[KYKY84]

HI, I was diagnosed and treated for epilepsy when i was 14 months old all the way to the age of 17 which at that time i was diagnosed with ARNOLD CHIARI MALFORMATION. and I had my 1st surgery sept. 2001 in my home town and the doctor screwed up and i ended up back in the hospital for 1 1/2 weeks during halloween 2001 with a spinal fluid leak, and so i went to loyola university in chicago to have my 2nd surgery and that surgeon did an amazing job i was in hospital for 1 week and never had any problems after that..... however now 9 years and a child later im having alot of problems... i am getn blurred vision again, my legs are weak and give out on me more often again, Im getn migraine again in the back of my neck that makes me not able to lay on my back.... the migraines make me nautious, and miserable again and i havent been able to turn my head to the left without pain and stiffness for the last 3 months. i am Trying to get in to see a neurologist but its hard finding a doctor around here that accept my insurence and even harder finding a doctor that is familiar with ARNOLD CHIARI.
P.S is it normal for the back of your head to be numb and tingly after an arnold chiari surgery???? cuz the back of my head is super numb and tingly... sumtimes it feels like a bug crawld across the back of my head it feels really creepy

So my question is CAN ARNOLD CHIARI come back?
plz if nebody knows and has advise plz reply....

[n40066]

we're here for you if you need us!  please let me know how you make out!!  

[KYKY84]

thank u so much for ur advise.... i live in the rockford, illinois. i had my 1st surgery here and the 2nd one in chicago. im having a hard time finding a doctor that will accept my insurence which is kinda dampering my spirit. my aunt and my older sister and my uncle had arnold chiari too, and theyre still doing gr8. idk if i have a syrinx, but i will def have to check out the list of docs u guys have on here...
again thank u so much

[n40066]

hi kyky and welcome to our family!  i'm sorry to hear you're having problems after so long! surgery for cm does not make it go away.  there is no cure for acm.  the surgery is only to help stop the progression of the symptoms.   it is not uncommon, however, especially after a tramatic event such as childbirth or an accident to have symptoms reappear.  you need to find a chiari specialist to talk to/see, but in the mean time, see if you can get your pcp or local nl to order an mri of your brain/ spine.  did you also have a syrinx by chance?  it could be that the pressure of bearing down during child birth is what is causing your current symptoms.  perhaps it jarred something loose or somehow caused your herniation to drop again?  the tingling/numbness is caused by nerve compression/damage and/or you could have a csf blockage.  it's something you should really have checked.  what area do you live in?  we have a list of chiari specialist here on the forum that our members have used and liked.  of course, you should always do your own research on any dr. you choose, but it's a good place to start.  hope this helps a little and good luck.  some of the other members may have better suggestions for you later on in the day.
elizabeth

[Jennyfoo]

You were never cured of chiari. You've always had it. The surgery was a means of treatment to delay progression. Yes, symptoms can and often will come back as you age or if you've had any kind of trauma to your head or neck. Chiari is a progressive condition, meaning it usually gets worse over time.

You are going to have a terribly hard time finding a Neurologist that knows much about it. You need a chiari expert, especially since this is a return of symptoms. There's a list of preferred drs at this site, also at the World Arnold Chiari Malformation Association website.

The best thing you can do now, besides getting a real chiari dr is to educate yourself on your condition.

Ttfn
Jenn