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.

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.

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

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...