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....

[*Stormy*]

Hi

From what I'm told, once you have had Chiari you will always have to keep an eye on it. Different things can happen, like cervical changes for instance, that could reactivate the symptoms. You have to remember that they did the surgery to make room around your tonsils but they didn't actually put your brain back where it's supposed to be. So, I think we are all definitely at risk for a re-occurrence and need to be vigilant. Anytime I feel something is not right I have gone back to my NS and had a MRI to check, lucky for me, things have been alright. My NS told me that is what I should do again if anything causes concern in the future.
Another thing to note is that life changes can make a big difference in symptom re-occurrence. From trying to push to exercise too hard after surgery, I had MANY of my symptoms re-develop. I finally laid off and it took awhile (like 6 months!) but things have leveled out. The fact that you had two children could have something to do with this.
I would definitely get checked out by your NS, if everything comes up ok, then you may need to make some lifestyle changes..
Stormy

[Becca6457]

Thank The Lord there is a forum for A.C.M, I had my surgery 20 yrs ago and I recently had my 2nd neck surgery. I am not sure if acm or if another problem, I have neck problems, sounds in head and ears,headaches, tingling in hands and feet but I have hands severely jerk, had over a year but 3 months ago the sounds and hands jerk ing went away but came back 3 days ago so I am very worried. I looked up tinnitus but it never mentioned hands jerk ed ,came to your page.When they did my surgery they did put a patch on.

[selmaS]

Hi and welcome to the Chiari forum.

If you did not have a dura patch placed, your dura ay not have been opened....if that is true then you had a less invasive procedure which can work great at first , but may fail with time.....I never heard of one going this long, and well....typically it is a shorter amount of time when that procedure fails and the next procedure is done.

Do you know what was done, as I said there are other types of decompressions and just wondering what all you had done during yours.

What was or what was not done could be part of your issues/symptoms now.....

[itsy1]

The others have given great advice.  I had surgery in '91 at 19 and it took 19 years, 2 children (both healthty 8+ lb babies), and a car accident before I found an other decompression to be my only option in '08.

Finding a nuero that knows CM well can be a pain (literaly and figuratively); however, ime it's worth it.  A lot of docs will work with you on a sliding fee if they don't take your ins - even use immaging/ other docs that can bill to your ins.  There's also out of network referrals based on the fact there are no docs that specialize in your condition in network, but I'm sure you already know this.

Fwiw, I have numbness for the first time after my '08 decompression - right along my incision site.  It's nerve damage, I'm pretty certain, as nothing else has developed over time.  You may have a different issue, I just thought I'd share.

I hope you find a CM doc and the relief you deserve.

[kryskrash]

Hello,
I have or had ACM, I also had the surgery about 9 years ago.  and now, especially over the  last few months I have noticed ALL of the symptoms have returned and even worse than last time.  does this mean it has either moved, grew or came back?  I didn't think it could.  Because they never said anything about check ups etc...
My symptoms include:  blurred vision, dizziness, headaches, migranes, down the right side of the back of my head.  hands and feet go numb up to my elbows. fatigue, focus block,  horrid sore throat, swollen tonsils,  

so, IF it can come back how is that possible,? does it just keep growning and after a while you are back where you started and have to have another surgery?  (almost like a cancer)

Mine the first time was pretty big and it was not an option as to wheather it should come out or not. they said it was that or die.  I took the first option:-)  Hope you can help.
we live in idaho and they don't have much for drs who know much about it.

[selmaS]

  Hi and welcome to the Chiari forum.

First, once u have Chiari u will always have Chiari...surgery is to restore CSF flow and slow progression, so if u went 9 yrs that is wonderful!

Chiari Malformation is the malformation of the skull...not the herniation of the cerebral tonsils....

There r different types of surgery that is done for Chiari, do u know what all was done for urs?

Did u have a lamenectomy and a duraplasty?

Were other related conditions ruled out b4 ur surgery?

  It is possible to develop scar tissue which can affect the flow of CSF....and it is possible for the tonsils to change over time too....

A MRI is needed to see what is going on, but do get checked for related conditions to see if u may have one of them.

Syringomyelia, sleep apnea, ehlers-danlos,tethered cord,disk issues,ICP, ....

Do u have a NL to go to?

[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.

[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?