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!

Feelin great
 

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.

Recovery from Chiari Surgery June 15, 2010
 

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!! :D

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.

Month after surgery
 

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.

please don't be afraid to call them for ANYTHING that seems not normal. i had so many complications after surgery, it's a scary process and it the worrying doesn't stop until you are fully healed, and never completely stops, to this day. it's been almost a year since sugery. if you want to talk, e-mail me if you'd like.*** hope all goes well!

Hi Stephanie, Im sorry to hear about you still feeling like **** after the surgery, i too got my surgery a couple months ago and I FEEL AWFUL! i talked to my dr today and told him how i was feel the same and more. I hope you get back on here if you want to email me please do! Missy.

Sister had surgery and recovery isn't good
 

My sister and I were very close, attached at the hip since she was born until we got into our fortys and she was diagnosed with chiari syndrome at Loma Linda Medical Center. She was sent to Neuro out of Long beach Univ. Hosp. for surgery.

She has changed so much, I don't know what to do for her. She hates me and almost our entire family, she is in pain, has terrible anxiety and worries excessively about her occipital area being injured so close to her brain. It is almost like she gained a split personality with this syndrome.

I am so grieved over losing her, I can't hardly breathe sometimes.

If you have had Chiari Decompression surgery and still have a constant headache, you may also have Arnold's Chiari. This is where the spinal fluid still will not flow after the surgery. I was diagnosed with both at the same time. I had a shunt put in first to allow the fluid to leave my head. After that I still had the Chiari symptons and eventually had the Chiari Decompression surgery. I am telling this because even after Chiari Decompression, the aquaducts to the brain may be too small (as in my case) to allow the flow of spinal fluid.

New to this
 

I have recently been diagnosed with Chiari. I am a 50 yr old female that started having severe headaches to the point where I have been unable to work on some days. I am scheduled to see the neurosurgeon tomorrow and I'm a little anxious. I am not afraid of having the surgery, I'm just not looking forward to the recovery. I was diagnosed with rheumatoid arthritis 12 years ago and some of the issues I have been dealing with I now learn are symptoms of the Chiari and not the RA. For that reason, I am excited about having the surgery done.
I am curious as to how large an incision has to be made and how long I will have to be off work. I know I can get these questions answered by the doctor, but sometimes they don't tell you everything. I am reading the posts on here and that has been very helpful. I want to thank everyone who has contributed information through their posts. I plan to also contribute as I travel through my journey to a better life. That's what this surgery means to me, and I hope I don't learn otherwise, is a better life for me, my husband, my children and my grandchildren as I work toward being more able to enjoy time with them.

Are you having a shunt inserted or the Chiari Decompression surgery? I have had both, that's why I ask so I can tell you more about how mine went.

chairi
 

I understand. From what my surgeon told me was that in some cases it doesn't get rid of the headaches, it just shouldn't get worse. For me it did but also there are some things we did to help. One we bought a chiari pillow. It keeps you cool through out the night. Also realized heat would bring them on a lot. We bought these bands that have crystals inside and when it gets hot I place it in water and will it will keep me cool for hours. For me I also have syrinx so there is nerve damage. I'm just trying to learn to deal with. Which is very hard. I hope I helped

My Story Arnold Chiari Malformation
 

Jarredddd,
I was diagnosed at 34 and had Decompression Craniectomy, with C1 Laminectomy at 35. I had disrupted CSF flow so my surgeon had to open the dura membrane and lyse the arachnoidal adhesions and then he used a dural patch to close the opening. The best advice I can give to you is to find yourself THE BEST Chiari Specialist around. You have youth on your side.....every young person I have spoken to with Chiari has healed much faster than us "OLD" folks..... Good Luck and keep us posted !!

thanks! i need all the help i can get! does anyone know about a fundraising for the surgery and recovery time?

how much does a normal AMC surgery cost?

recovery
 

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.

Chiari surgery is OK!
 

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.

Chiari
 

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

New to this...
 

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....

Post surgery complications...
 

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!

I had Surgery in August 2010 for Chiari. It is normal for your neck to be weak, I had to rest mine as well. If the surgeon deosn't think he can do anything he should refer you to a physical therapist or someone who can help. When it comes to your health, who cares if you keep asking questions you HAVE to. :)

chiari recovery
 

Hi,
I just had chiari surgery November of 2011. I was diagnosed with chiari in 2007 however I had been dealing with the symptoms since 2000. It has been 6 weeks and I'm still trying to regain my strength and full range of motion in my neck. My head still feels heavy at times and my scalp feesl numb in one spot. I had a lot of fluid build up in my spine which caused alot of nerve damage. I had a great surgeon and would do it all over again. The headaches, the pain in my arm and back, the sleepless nights have all DRASTICALLY lessened to almost non-existence. I realize I'm still healing but I'm hopeful. I would definitely recommend you going back to the doctor. My step sister a good friend of mine had chiari surgery a few years ago and they are doing wonderful. They have regained full motion in their neck with no stiffness. My friend has had no symptoms since the surgery and my sister deals with occasional back pain when she is stressed or if she has been doing to much, however this is relieved with advil and a good night's rest. This is a definite change from what she was going thru before the surgery. Like I said I hopeful, if it worked out for them it will work out for me... Seek help from your doctor or see another doctor that can and will help you.. don't give up! i don't believe that is normal.

Continuous CSF leaks after surgery
 

Hello All,
I recently had a Chiari I decompression surgery on Dec. 9th 2011 by a well respected and liked surgeon. In fact he has actually done 2 neck fusion on me prior to this. However, since Dec. 9th I have had to go back in to surgery 6 times due to CSF leaks. In fact I think I may be leaking again and I just got out of the hospital 2 days ago. My headaches now are so intense and unbearable. I have uncontrolled vomiting that doesn't help the headaches. I am so tired of going back to the hospital for more surgeries. I was told that my dura is quite thin and its having a hard time keeping a seal with the dura patch. It has only been a month and it scares me that I have been cut open 6 times. I have pretty much laid flat for over a month and the rest of my body is feeling the pain from that. I wish I hadn't had this surgery but the symptoms I experienced prior were pretty bad too. Does anyone have any suggestions of what could possibly be done different so that I can avoid more surgeries. I am terrified off infection, there has to be a way to fix this. Thanks

Is there anyone still listening?
 

My name is Deana and I have been through hell since this past March. Three brain surgeries, a front three level cervical spine surgery and a shunt revision from my stomach to next to my bladder. My last surgery was on January 12th 2012 and it was Chiarra Malformation. I was supposed to have a laminectomy at the same time, but the surgery took too long and so that is something else I have to look forward to . I am in so much pain, and feel like there is no light at the end of the tunnel. My headaches are bizarre...they are all over the place, the base of my skull, the top of my head and right into my right eye. It feels just like when I had hydrocephalus, and I can feel my vision and memory getting worse. Is there anyone out there going through the same thing as me? I feel so alone. My boyfriend tries to minimize everything I say and it is so frustrating! I am in California, and I have one of the best NS, my hospital is UC Davis. This all started with an unbearable headache that lasted for 3 weeks, went to the ER and was diagnosed with a pineal gland cyst, which then lead to many more problems. With each surgery I hope and pray that this is it and my pain and other symptoms will be gone. But so far, the pain is just getting worse. Is there anyone out there going through this? And has anyone heard of a new VP shunt that regulates with some type of bb's to control gravity. I would appreciate anyone's opinion or story so I don't feel so alone. Thanks...Deana

Neurontin is horrible, it makes you feel like a zombie! I have been through so much, and the last surgery I had was the chiari. It has been just under a month and I feel terrible. I'm hoping that with time things will get better, but after reading everyones blogs I'm not to hopeful! Deana

i have it easier having read other peoples similar stories, i feel so alone with this condition, i myself had surgery for arnold chiari malformation in 2007 so has been just over 4 years now, id suffered since i can remember, i recsll having intense unbearable headaches evenat the age of 7 or 8, it was only almost 20 years later i was diagnosed, it all happened so fast between diagnosis and the surgery that i still dont fully understand what exactly they did, i was very poorly and in intensive care for almost 2 months after the surgery, and a week after discharge i was taken back via ambulance with a bleed on the brain, im ok now however i still get occasional headaches, though nowhere near as bad as before the surgery, and my neck has never been the same, ive been told i only have 60% of my neck movements now, if i look inany direction apart from straight ahead for even more than a few seconds my neck ends up in agony and usually causes a severe headache, i also have problems now with my hearing in my left ear and often get earache, does anybody else have hearing problems? i am awaiting an appointment with neurosurgeon to see what is going on with my neck, im vey worried and scared

I could really use some advice if anyone is willing. I am a stay at home mo of 3 and can't care for the kids the way I want and need to. I was diagnosed with Chiari in November of 2009 after being misdiagnosed for about 3 years. I had a posterior fossa craniectomy and also a partial c1 and c2 laminectomy on Dec 16th 2009 and was in the hospital for about 6 days and then went home. 4 days after I was released from the hospital I found myself in the ER with an excruciating headache which turned out to be a CSF leak. I was in the hospital and was just medicated with dilaudid until Christmas morning when I was released..supposedly healed. 3 days later I was again headed to the ER barely able to move bc of how bad my head was pounding. They did another MRI and found out that not only did the CSF leak worsen but I now also had blood on my brain. I was not doing well. The dr's were telling my family that they weren't sure if I was going to make it and they all were there to "say goodbye" to me while I was transferred by ambulance to UCI hospital in Chicago. I was then informed that I had developed MRSA and spent the next 3 days in ICU and then moved to the level below ICU where I was constantly monitored for the next 22 days. While in there I had to put a PICC line in bc my veins kept collapsing, woke up with CS fluid all over my pillow the size of a basketball, then had to gt a back drain put in, then my kidneys started to fail bc of the 3 antibiotics they had me on for the MRSA. I was finally released from the hospital on Jan 23rd and thought my whole ordeal was over until about a year ago when all my symptoms started coming back and now I'm having these symptoms: worse headaches then before especially when turned my head or eyes, dizzy all the time, shortness of breath, and just over the last 3 months I have gotten weakness in both my arms which is now to the point of not being able to hold my 15 month old or sometimes even be able to lift a pan. Just had an appt with my reg dr who said he thinks it is either my Chiari worsening or scar tissue from the surgery. I see yet another nuerologist march 6. Anyone going through anything like this or have any words of wisdom...or hope? Sorry that was like a novel!

first what is MRSA? also why are you seeing a Neurologist ? They are absolutly useless when it comes to Chiari .... Have you have any recent MRI of your chiari . I would have your family dr order a MRI and then take it from there , if you need to see your surgeon again your family dr can get you in sooner...