Hello I had the decompression surgery in May of 2009. I was diagnosed with chiari malformation. It was a pretty significant one. I am not having the headaches anymore but several other issues. I find that I am still not 100% myself. I suffer from fatique often still, discompfort in the back of my head, still have numbness on the right back side and I find myself still taking the muscle relaxers or headache relievers that were given to me after surgery. Is this normal? Iw ould like some feedback from someone who has been recovering for more than a year. BTW I plan on visiting my nuerosurgeon in the coming weeks and demand an MRI just for my benefit and comfort level. Thanks in advance.

Hello all,
I know this is an old thread but since there has been some recent activity, I hope this is a good place to turn for answers.

My story begins like most, diagnosed on accident when the doctors couldn't find anything else wrong to explain away my symptoms. Then came the searching out a doctor who actually knew what he was talking about. All in all, I am lucky since I only struggled with it from diagnosis to surgery for two years. I know many people get bounced around a lot longer then that so I count my blessings.

My symptoms included chronic pain, fatigue, restlessness, headaches (the ones that would come with positional like bending over and migranes that were made worse with movement). Finally I was referred to a neurosurgeon and we decided not to do surgery because none of my symptoms were neurological. About 3 months later I started developing bladder issues that weren't normal, even for someone with Chiari. Instead of not being able to control when I went, I have issues being able to go at all. I sit down and sometimes it takes me 10 minutes of convincing to be able to void my bladder.

At this time I was sent to a urologist who determined my bladder issues were a result of my syrnix or Chiari and my NS and I decided surgery was the only option to stop the progression of this neurological symptom.

I had my decompression surgery on the 27th of january 2010. Afterward I developed horrible headaches that put any of my Chiari headahces to shame and it was determined it was due to a leak in spinal fluid (probably at the dura graft site). My doctor let me rest for almost a month hoping the leak would correct itself but it didn't. Life was misrable. I couldn't even go to a doctors appointment without spending the next few days in agonizing pain. It even landed me in the ER 3 times when nothing would help to stop the pain. (Usually in a CSF leak headache, if you lay down, it goes away. When you're up an about it undoes all the bodys' progress at stopping the leak and the longer you're up for, the longer it takes to get the headache under control. It's one of the main sign of a CSF leak and I only say this because I didn't know this and have ran into many people who with that information alone, have lead to their being diagnosed with a CSF leak).

I was readmitted into the hospital for a revision on my original surgery and they were unable to determine the source of the leak. My doctor went in and took out some of the stitches on the dura patch and put more "glue" around the site. Then he put in a lumbar drain to divert the CSF fluid and lower the flow to allow my body more time to heal. This was done on the 8th of march 2010. I know I am only 12 days post op but I am feeling better then I have in years!

My question out there is what are the life long limitations that occur from the decompression surgery. My doctors say for each person it's different which I agree with but he said that trial and error is the only way to know my personal limitations. This scares me because if I do something, the only way I'll know if its a limitation is if it makes things worse. I don't even want to attempt to do something if it's going to make things worse. What have any of you out there found that makes the symptoms return and/or worsen? I've been told to stay away from amusment park rides like roller coasters and things like sky diving but i've also been told something as simple as running has ruined all the progress some people have made. This is hard for me because I am in the military so I will no doubt have to try but if there is some advice I can get from people who have gone through this I would greatly appriciate it. Thank you so much in advance for your help. I wish you all the best of luck in each one of your "fight against Chiari."

Worst surgery I ever had,, it was tried to stop the progressionof the neuropathy in my hands arms and legs,, two weeks post op,, I was back in the hospital with MRSA in the incision,, and menengitis from the patch used on the dura,, I had spinal fluid leaking out of the incision site,, and had to have a redo operation two dqays later,, all in all,, I wish I had never had it done,, since I never had the headaches or any real symptoms of Chiari,, so if you dont really need it,, dont go in for it,, it may be a god send for some people,, but for alot of others,, its only the beginning of there private hell,, mine is still a mess,, surgery was 8/09

Hi My name is Wanda i had my surgery on 9/09, now i have multi faceted face pain so i dont even know what type of face pain i am having to know what type of med to take, also i already had mrsa of the r nares which flares up more often. My emotions are of the charts, my sister says that it has been said that people can become bipolar after a sugery like this, but i dont know. My depression is worse and i cry at a drop of a hat and the mucle cords that run up the bsck of my neck to my head are always tense and sore and that now i have a syndrome that causes blood clots, I regret ever having this surgery more than i can say. I am still weak still can't walk any great distance very fogetfull etc unemployable omg its horrible

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

Hey everyone. Im angie, 22. I had my decompression surgery on 11/10/11. I felt great the first three weeks after. Got my staples out and was excited to start PT, get life back to normal! Then all started to go down hill.... headaches came back worse than ever before, dizziness, definitely EMOTIONAL! cannot control it!! eye sight was better after surgery, not it seems worse than before. My neck is constantly swollen and stiff. I switched doctors because the one who gave me the actual surgery, I never saw again, and his assistant never ordered me the MRI after the staples were removed. (which i complained to er constantly about) So switching doctors, they are ordering me an MRI, but he says theres definitely alot of fluid backed up and is afraid there is a leak. Im scared to death to think about going in for another surgery. Of course im getting ahead of myself not having the MRI yet, but u can always seem to tell when theres something wrong.. and I do.. Does anyone have any hope, or spare light to shed on my situation. Im so scared.... :'( Just want to live life again

I can uderstand you being scared. Hopefully you have a great neurosurgeon this time and they can repair any leak and you will be on your way to getting back to normal. I had my decompression surgery Feb 2010 at Emory Hospital in Atlanta, GA by Dr. Daniel Barrow. I am lucky to have had absolutely no problems with the surgery. however, I have had 8 prior shunt surgeries so I do have constant pain that I deal with. It is easy to become depressed but try to have a positive outlook and don't stop talking about the problems you are having until you find a doctor that has done LOTS of these surgeries and listens to symptons you are having. KEEP TALKING AND MAKE THEM LISTEN!