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?
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.
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.
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
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"
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?