CAN ARNOLD CHIARI COME BACK AFTER SURGERY???

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....

[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

[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

[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]

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

[christyk30]

I had surgery about 7 years ago and a year later I ended up with a spinal leak and now 2 kids later I have my migraines back blurred vision at least 3 times a day and a numbness in my spine. Does that mean my acm has come back?

[selmaS]

  Hi and welcome to the Chiari forum.

Well Chiari never really goes away, chiari is the malformation of the skull which is too small to contain the cerebellum which gets forced onto the spinal cord and brain stem.

The surgery usually makes room to restore CSF flow, and we are told to continue to be careful of our activities...as it can cause a flare of symptoms.

  U said  after u had a CSF leak, did they do a blood patch to seal it?

And did u have a C-section with ur children to avoid the strain of childbirth?

    "selma"

[*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

[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 (migraines), 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?

[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.

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...?

[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.

[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

[selmaS]

  Hi and welcome to the Chiari forum.

To get better replies u may want to start a new thread as this is older and not too many look at the older threads.

Once u start a new thread u can continue to ask questions on that same thread so all the info u supply is in one place making it easier for us to answer u.

Surgery may temporarily stop the tinnitus, but it can come back as nething we take from NSAIDS to pain meds can also be a cause of it...I know it is not a nice symptom to have as I also have it and I had surgery...and it did seem to go away, but I have related issues I am on meds for and I still have it...most symptoms r not as bad as they were pre op...so surgery can help minimize the effects....

I saw ur Drs said ur Chiari was mild....that term out rages  me as they use the length of ur herniation to determine the name...not how it is affecting u or ur health...ugh...Did they rule out related conditions and see if u have a CSF obstruction? That determines mild, etc....not the length.

Know u r not alone and came to a great place for support : )

[ann_marie75]

I have or had acm I had my surgery jan 202004 although I still have suffered withe headaches it has got much worse along with other symptoms I am really worried about it.

[selmaS]

  Hi and welcome to the Chiari forum.

There r related conditions that could be causing this...have u had a post op MRI?

Did they rule out tethered cord, ehlers-danlos and syrinx's b4 u had surgery?

[leahkrank]

I am 16 years old and I had my chiari surgery about a year ago. All of my symptoms have come back and I am just really nervous. My head is beginning to not only hurt in the bottom back of my head (like before) but it is also hurting around the scar. I'm scheduled to go to the NS a week from today. I just don't know what I need to be prepared for. I really am extremely nervous. I have grown over an inch this year in height. Does that mean my bone could have grown back too? I had a post op MRI a few months after my surgery and I got the all clear. Haven't had one in a while. What does all this mean? Is it possible I might need the Surgery again?

Symptoms: Headaches, numbness and tingling/weakness in arms and legs, blurred vision, abnormal breathing.

[selmaS]

  Hi and welcome to the Chiari forum.

I hate to say yes, but it is possible to need more surgery....but not bcuz bone grows back, but bcuz of certain underlying and or related conditions may be affecting u....

Is this the same NS that did ur surgery u r going to see?...I had my post op MRI at 1 yr post op...all the Drs tend to do these at diff times and for each patient may differ too.

Were u checked for ALL the related conditions b4 ur surgery?

[leahkrank]

I was checked for all of the other related conditions before my surgery such as syrinx and others. It is the same NS that did my surgery, so we will see how that goes. What would some of the underlying causes be? I just want to be ready for anything he might throw at me.

[selmaS]

  Well cerebral ptosis...this can occur if too much bone was removed, it is also known as brain slump.

Intercranial hypertension can also develop post op, and for no apparent reason...a LP must be done to determine this.

Cerviocranial instability- this is something that can be more obvious post op....most with this have Ehlers-Danlos and the laminecktomy can weaken the top vertabra and cause it to be more unstable...

Pseudomeningocele this is a leak and collection of CSF...this can occur if the patch fails, or u reject the patch.

So knowing if u have tethered cord, ehlers-danlos b4 surgery is helpful...and many times Drs only look to the cervical spine for a syrinx, it is possible for them to form in the thoracic and lumbar spine.