I had surgery for 11.8 Chiari in Nov. 2009...Developed a CSF leak and had to have the whole thing done all over again in Dec. 2009. I still have to lay down several times a day and some days just can't do anything at all. I am terribly off balance...If I tilt my head to one side or the other...my whole body tips in that direction and I have to grab onto something to catch myself from falling!

I just wanted to post here for people like me who came on here before their surgery looking for information. All I saw were people who were still having problems or were sorry they had the surgery. I had surgery on 9/2/2010 and a week later I am doing GREAT! Sure, the pain was awful the first 2 days like you would expect, but for the first time since I was a kid, I can take a shower with my eyes closed! Growing up, I would fall over in the shower when I closed my eyes to wash my hair. My desent was 16mm and I had terrible headaches, balance issues, swallowing problems and I would drop things all the time. Now, I am feeling fantastic and so glad I had the surgery. I am so sorry for all of the people who are still having problems and wish you luck and peace soon. When I came on this sight, I seriously gave surgery a second thought because all of the feedback was negative. I'm glad I weighed my options and glad it has all worked out.

i had my chiari decompression 7/29/10 after being diagnosed with chiari malformation type 1 last summer. my neurologist told me i did have a bit of a syrinx but it would likely cause no further problems and i wouldn't need to do anything about it. so, he set me up for an MRI 1 yr. later to see if it was getting worse. the symptoms that brought me to my neurologist were that i had numbness from the top of my head to below my breast and only on my right side. straight down the middle. (i found out my syrinx was asymetrical, which is why i was having only the right side issue) i've had that since i could remember but always hated the doctor when i was little, so i never told my parents. (which i regret now) i developed pain in my forearm on the right side these past few years which got a lot worse this past year. because of the pain and because they didn't want to operate because my neurologist said the risks of surgery would outweigh the benefits of surgery, i went to a pain clinic to see if i could get it under control because the pain got unbearable. they were going to try some injections so they wanted me to get an mri first. i got the mri and my primary called me in to discuss because he got the reports. he said the syrinx had gotten much bigger and i needed to consult a neurosurgeon right away. i went to dr. john mullen and dr. stephen haines. both who are on the list for top 100 doctors in the country. i was very lucky to be able to choose between the two. i did choose dr. haines at the university of minnesota medical center. he is a very nice person and a great doctor. his whole team at the hospital cared so much for me and did everything they could to help me and my family out. i am so greatful for them. anyways, surgery was 7/29/10 and of course, expectedly i was very sore, tired, in a lot of pain after surgery. especially the first two days. i did get out of the hospital two days later. i ended up being re-admitted the next day for severe headaches. apparently, they didn't give me the right medications for discharge. so i stayed again for two days. left again. the NP gave me too much flexeril, i was taking 3 pills within 8 hrs. which i was supposed to take 1 pill every 8 hrs. so i ended up blacking out and falling on my head. went to the er and was checked out. and they gave me another med. schedule, taking the flexeril once every 8 hrs. i ended up getting very, very sick. vommiting whenever i ate one little thing, chills, shaking, headaches, blurred and double vision, couldn't walk straight, everything you can imagine.. and went in and was told i am having withdrawls and a UTI. left that day and i actually had a big pocket of fluid on the back of my head that had been there since surgery. that burst that following saturday which was about 3 days after i left on my readmission. i went to the hospital and they admitted me again. i found out i had menengitis when they tested my CSF. had to have a lumbar puncture (worst awful horrible pain of my life, i'd rather have the surgery again than that) and they kept that in for 5 days to test my fluid. was on IV drugs for a little over 2 weeks. had my mom doing my IV at home. i had a PICC line put in so i didn't have to be in the hospital. i left 1 week after i was re-admitted that second time. went back that same night! for a leak in my incision. (that's probably the third time i went back to the ER for a leak!) after that ER visit, i went back to feeling good. i got the PICC line removed at the time of my follow up visit on the 1st of september. i was doing pretty great. back on my own to my own house and getting back in the swing of things. the only things i noticed were some dizziness, headaches and of course the neck is still a little sore. i do have some draining of this sore on my neck, NOT CSF!! and they are keeping and eye on it. they took a sample yesterday so i will find out whats going on hopefully today! but if not monday. they might need to debreed it. but we'll see. when i had my MRI on 9/1 the dr. said everything is progressing how he would like it to and its moving along nicely. they did not get an MRI of the spine to see if the cyst/syrinx was gone, but that will be done on my 10/6 visit. so i will really see then. BUT if it's not going down, that means another surgery so they can put in a shunt. but i'm not worrying about that until and IF it happens. i'm just taking it day to day right now. the main thing i think the surgeon told me was it was NOT guaranteed that the problems (numbess and pain) would resolve. it was to prevent further problems. he said if i didn't have it i would likely have walking/swallowing problems among others. so, i obviously had no choice. i would say the surgery was worth it. just even thinking about having problems like that in the future, i couldn't even risk it. i do not take my ability to walk and ride my bike and do things on my own for granted now. i know how hard it was to recover and there were so many people in the hospital that were a lot worse off than i was. i think about it everyday. yes, i had many issues after surgery, but now i know this was all worth it.

anyone reading to response, please be patient, never done this before. I had a C1-C-2 Laminectomy & Decompression Chiari w/Doral Reconstruction on June 15, 2010. I was in ICU for three days, barely remember. I went home the fourth day. did everything neuro surgeon told me to do. for the last couple of weeks my symtoms came back but worse. My doctor put me on different types of pain medicine kept telling why am I having all these problems. She kept telling me it was not my Chiari. My last comment to her was I did not say it was. I know she fixed me, but why is she fighting me and telling what is the problem. I am getting an mri and xray on Monday.
my symtoms are tingling on the right side of my head followed by numbness behind the ear then comes the pain of the century. if feels like heavy pressure crawling up my skull. Sometimes I have to lay down for a couple of hours for the pain to stop. Sometimes when I'm work and they start feel sick.

I fully understand your frustration!! I am a registered nurse and I am personally horrified at the lack of compassion I have encountered from the health care professionals. I have been told not to give up, even though I feel like it. So, all I can say is, keep at them and if they won't listen to you then find another doctor. Do your research and make sure that they have a clear understanding of your diagnosis. There are many doctors out there, but obviously not many that understand Chiari. I have to admit, I have gotten very upset with the doctors and nurses, but I am going to take that anger and frustration, ball it up, and keep fighting for my rights as a patient to be heard!! You do the same. Keep going!!

I just had the same surgery 6 weeks ago and am experiencing pretty much the same thing with having to rest my neck and head after about 4-6 hours of being up at one time. My neurologist told me that was normal and that it could last anywhere from 6 mos. to 1 year. I was told it's a very slow recovery, but he told me that I was doing great so far. I started working 4 hours per day again last week (office) and tried to start 8 hours this week but it's not working. My doc just put me back to 4-6 hours as tolerated until I see him again in February. I'm hoping this doesn't last for 6 months, but I'm being very patient with it since I'm pretty much out of the pain I've been in for the past 15+ years. I've always had bad headaches every day in the back of my head, neck and shoulders. That has pretty much disappeared. Good luck to you!

motherof4
i just had my surgery completed on march 3 2011. so far i have migraines still, but not like they use to be. i have hearing problems still. no surgery is gooing to be 100% proof. i have filed for ssdi ( social security) and waiting to go to my hearing in may 2011. its a shame how the government makes you go thru all this crap. i have damaged nerves and unbearable pain. i was told that afetr surgery, you will continue with the doctor for at least a year or more.
i don't quite understand how people can work with this going on, and be at work with some of the drugs you have to take for the pain....i cannot do it.
but hang in there. it can only get better.

had my decompression on the 25th march, 2011, mine was 12mm, i have developed a leak on the inside so there is now a bump on the out side, surgern waiting to see if compression badage will work,

i just recently had the Chiari Decompression surgery on March 7, 2011 and the week after I got of the hospital was the worst week of my life. I was placed back in the hospital on three different occations. The first time was that I was vomitting blood over and over again on my first day home. The second time I was back at the hospital was when I started to lose my vision and balance. The third time i was at the hospital was my fifth day back home i feinted and my blood pressure went down to 98/30. I amd still on the road to recovery cause my surgery is only a month old but, since the surgery, I still am unable to turn my neck. Almost every night its hard for me to get into a position comfortable. But the surgery was also benificial. For the most part, I have not had anymore headaches but lately they have been coming back. Im am only 15 so i hope it helps me eventually.

My name is Melissa. I had the Chiari Malformation surgery on April 1st. I am still sore and stiff.. and today I am having pains on the back right side of my head. I was wondering if anyone has gone threw this? Has anyone had anything like this? I didnt even start my PT yet. I am scared and alone. I even feel like a jackass calling the doctor to see if I am ok.