I wish I had found this site a year ago. I had my surgery on 7/30/10 and after reading a lot of the posts here, I know definitely that I had a good outcome. I was in the hospital for 4 days and dizzy/nauseous and constantly tired for at least 2 wks after that. Thankfully my mom came to take care of the household chores. I am now a little more than a year out from the surgery and doing well. I still have neck pain and headaches from time to time, but the headaches are not nearly as bad as before the surgery. I was told I had to have the surgery because the CSF flow was blocked and not getting through, so for me it was not whether to have the surgery, but just how well would I do afterwards. I have already had my follow up MRI and there is only a minor Chiari malformation now. From what I understand, it is not possible to make it completely "normal", but mine will require no further surgery, thankfully!

I had Chiari decompression surgery on November 12, 2010. I also have RA (diagnosed about 5 years ago). Many of the Chiari symptoms I was experiencing were attributed to my RA until the symptoms got so severe that my Rheumatologist determined they could not be part of the RA based on the treatment I was receiving and referred me to a Neurologist. Because I have RA, I'm more suseptable to acquiring other auto-immune system disorders so it was a relief when the MRI showed Chiari I malformation with a 1.7cm protrusion into my spinal column as the diagnosis.

I was barely able to walk before the surgery, complete lack of balance, had nearly constant eye twitching and also had occasional episodes inability to swallow and of difficulty breathing (felt like I ran a marathon and couldn't catch my breath when I hadn't done any physical activity) I only had severe headaches when I sneezed or coughed so I'm grateful I didn't suffer the severe constant headaches that others have.

Thankfully, I have a great primary care physician and she and the Neurologist researched Neurosurgeons and found a fantastic one in my medical system. She specializes in Chiari I malformation in both childrens and adults. I'm also extremely thankful (after reading through posts on this thread) that she does NOT believe in cutting into the dura lining unless it is absolutely necessary. She did tell me that there is a risk during surgery that the lining ruptures because of the fluid pressure and she would then (obviously) have to do the patch. Luckily, the surgery went very well and my lining stayed intact.

I had surgery on Friday and was home on Monday. I actually felt so much better right after the surgery, even considering they cut through my neck muscles, because of how severe my symptoms were. I still have to deal with the RA but that is relatively minor compared to how I was before the surgery.

My neurosurgeon said I would experience some of the symptoms for 6 months to a year, possibly a little longer, but the symptoms would grow more infrequent and less severe. They have - I still experience occasional symptoms but they are more and more rare as time passes. My neck still hurts if I do too much but that also is SLOWLY getting better with time and hasn't affected my ability to live life. The anti-inflamatory medication I have to take for my RA seems to deal well with the neck pain so far.

The symptoms I am dealing since the surgery that I'm finding difficult are that I cry at the drop of a hat (I have never been someone who crys easily). A sappy song will come on the radio and I find myself in tears. I also have tons of anxiety now. I feel a bit like and emotional basket-case, easily overwhelmed and not as able to deal with stress. I have dealt with my RA for 5 years, the Chiari symptoms that got so horribly bad, and the surgery pretty well so it seems odd and irrational that I would become a bit of an emotional trainwreck AFTER the surgery that helped me so much. Anyone else dealing with emotional issues or am I just a nut case?

Anyway, I am overall extemely happy with the outcome of the surgery and my physical recovery.

I had chiari decompression surgery feb 2011 and I am also very emotional . Anti depressants did not help but I am also paranoid (I had total 8 surgeries prior to decompression on the VP shunt in my head to relieve the pressure. 9 brain surgeries in 14 months have made me paranoid, not knowing when the shunt will malfunction again.) Seroquel has helped me be able to sleep instead of laying awake worrying. This has helped tremendously...not being sleep deprived. Hope it helps knowing you're not a nut case.....I am too..Ha Ha! Take care and talk to your doctor about all your symptons. Don't stop talking til they find something that helps you. Good Luck, Donna

Thank you Donna! It does help knowing I'm not a nut case......at the very least, I'm in good company LOL I truly hope your shunt continues to work properly and you don't need to have anymore surgeries. The uncertainty is a HORRIBLE feeling!! Take care. Amy B

4 weeks after chiari and decompression surgery I had a major set back, at first I started getting headaches again which required a shot at the dr office, then I had clear fluid run down the back of my neck, it was spinal fluid, because I wasent in enough pain I was sent hone with bandages. I went back to the er because more fluid kept seeping out, they put a stitch in my head so it wouldn't leak. Well they were right it didn't leak but I woke up that night in so much pain and I couldn't lift my head, my husband called 911 and I was rushed to the hospital where I was made to suffer for 2 hours before they figured out I had a spinal headache with staph and meningitis from my surgery wound. I was taken into surgery and they cleaned out the infection and fixed the mesh patch and I was good to go. Its now been a year since surgery and I am back to where I was before in constant pain. I found a new neurologist and am going to go through a series of tests this week. Fingers crossed someone can help me.

Hi! Hope this isn't too late to help! I was diagnosed at 18, I am almost 23 now. I had my surgery in Feb of 2008, I was only 19. The recovery process wasn't fun! I was in ICU for 5 days, came home and a week later was sent back to my surgeon for a leak in the patch he put in my dura. After that set back I started recovering quickly. I was not allowed to be in a car for 2-3 weeks except to go to the dr, out of work for 3 months(not sure why so long). I am a competitive barrel racer and was told I would be out 6 months - 1 Year. I was released to begin riding horses again at my 6 month check up! I still do suffer from migraines, and I still have a syrinx. However, I was told by the surgeon if I neglected the surgery I would have become paralyzed before the age of 30. Everyone is different and everybody recovers differently, but if I had to go back and do it over again I would still do the surgery!! I think you asked about cost, without insurance my surgery would have been $100K...insurance was a huge help and only had about $2K out of pocket.
So again, even though I still suffer from headaches, migraines, sometimes dizziness 3 1/2 years later, this is nothing compared to what I went through before my surgery.

I had my surgery many years ago. After, I felt great! But with each passing year I seem to get worse or a new problem. I'm constantly sleepy, bad stiff pain in neck and shoulders, depression, anxiety, emotional, nervous, ect. Does any of this sound familiar?

Please everyone if you have a new symptom go to the dr. dont assume everything is chiari related . I was decompressed in 1999 and doing really well . I do have SM so on meds for it .

Does anyone diagnosed with Chiari have emotional issues also? I ask because I find myself in the last few months being very quick to anger and I am generally not like that. I am super sensitive to sounds and with 2 very active boy's, I want everyone to be quiet and I know that is not possible, but it's not just that, I either want to cry or freak out, not much in between. So if anyone can help me with this I would greatly appreciate any feedback. Thanks

Hi my name is Angie. I just recently had the Chairi Malformation type I Decompression surgery 11/10/11, and am now having more complications with the disease than I had before the surgery. I feel the doctor werent listening to me, and never gave me an MRI after my surgery. I switching doctors, whos ordering up an MRI for me finally... but Im so scared about the thought of another surgery to fix the leak causing the build up of spinal fluid, if thats what is has to come down to.

Any have any ray or hope on this situation?

Im so scared and feel so alone in this even tho my mom and boyfriend have been by my side the whole ride.

feel free to email me....