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....

[cindy138]

Hi all
My name is Cindy. Newly diagnosed and new to the forum. It's nice to have support especially during times of worsening symptoms.
Would surgery possibly stop the tinnitus?
Thank you

[miraclebaby236]

Hello everyone,

I had my surgery in 2001 and I just started having new symptoms of nasuea, chronic fatigue, head and neck pain where my head and neck connects as well as pain in my limbs. I'm not sure if this is the chiari symptoms coming back worse or nerve damage from the syrinx.

[selmaS]

  Hi and welcome to the Chiari forum.

The member u addressed ur post to has not been active recently and u may want to try and send a PM(private message) as then they will get an e-mail that someone is trying to get in touch with them.

And u may want to start a new thread to get input from the active members here as many of us have similar experiences.

I understand u r several yrs post op, but having symptoms  reoccur, did they rule out related conditions like POTS, EDS, ICP, Syrinx, TCS...?

[Shib60]

Hi
Im sorry to hear of your problems but I'm pleased to read someone else is in a similar situation to me (don't mean that to sound horrid!) I'm a few years post op and my symptoms recur regularly. I'm on my second neurologist and despite me telling them the symptoms are identical they are insisting nothing is wrong. It's really frustrating and being made to feel like a liar is not nice at all. I hope you have more luck soon. Xx

[selmaS]

  Hi and welcome to the Chiari forum.

I would avoid the tubing....it is much too bumpy for this condition.....the issue is u do not know if the tube flips over he could get hit in the head....I would just avoid it to be safe...either way....

How far post op is ur DS?

How is he feeling?

[worriedmom030]

I am trying to determine how restrictive I need to be on my 8 year old.  Does anyone with chiari have any experience with boating.  We are avid boaters.  My son loves to tube, but I'm afraid that the vibration of the water from the boats prop would cause his chiari to get worse.  We would be no means take him over waves, but instead give him a nice smooth ride.  Any thoughts on the effect that vibration might have on his chiari...such as the turbulent white water behind a boat.

I don't want to take everything away from him, but I don't want to take a chance on his symptoms returning.  He has already had the decompression surgery and duraplasty.