Hi I figured I would share my story and see if anyone could help me. I was diagnosed in Feb of 07' and I got decompression surgery on July 9, 2007. When I woke up I felt so relieved to not have a headache and not have the tingling I was experiencing. I even had this rash that magically disappeared from the surgery. I recovered in about a month and was back to work and everything. I felt fine for about eight months after surgery, but then I started getting bad headaches again and experiencing other symptoms such as tingling, numbness, throwing up, nausea, chronic pain and the rash came back. I got a cat scan done on my neck and it said my lymph nodes were enlarged so the doctors thought I could have lymphoma so I got surgery to get the lymph node biopsied, but everything came back normal. I have gotten numerous blood tests done and have seen numerous doctors, but none of them seem to help me or want to help. The neurologist I am seeing right now does not believe in sending me to get another mri done even though it has been a year and a half since my last one. I feel the same as I felt before I got decompression surgery and it seems to be getting worse each and every day. Could the Chiari have come back? Any advice or similar stories? If anything like this has happened to any of you please tell me what you did about it. I could use all the help I can get. Thank you so much!

See a different neurologist. Why on earth wouldn't he want to send you for another MRI after over a year? I'd think you should be doing followup MRI's after a decomp surgery at LEAST yearly anyway. If he won't give you a script for an MRI, see someone who will. That's ridiculous.

Hi, I have the same exact thing. I am feeling so much worse since my decompression surgery (mine being in Nov 2007). I started feeling worse months after my surgery! The doctor said nothing was wrong surgery went well, blah blah blah. Well I had a MRI and he said it was normal. I got a copy later on and it WAS NOT NORMAL! In fact my Chiari was worse (it was crowded, the brain stem was somewhat deformed, etc). Now going to Cleveland Clinic and still seeing the Dr. I went to for surgery too. Got another MRI at Cleveland and it shows it EVEN MORE WORSE since that other MRI. No one there wants to do surgery, bc of the CSF flow study was okay. Well, then they say a 2nd surgery is way too dangerous to do and quote unquote, "you could die on the table" is what they said! What? I thought it was that way for any surgery.

Anyway, just keep going and trying different doctors if you need to, I have doctor hopped - because it was neccessary! I am finding dr.s now who understand. It took me a long time. I feel like crap! Okay, I will post more to you later. I have to go get some pillows.

Hey. I am glad to hear I am not the only one going through this. The last MRI I had my surgeon said that everything looked normal, but then again that was more then a year ago so who knows what could have happened in that amount of time... This past weekend had to be one of the worst ever. All day on Saturday I had the worst headache I have had in a while and I tried to take ibeuprofen to make the pain go away, but nothing seemed to help. The pain just got worse as the day went on. Sunday morning I went to go to bed around 1 am. I was laying in bed for about 10 minutes and the pain just became unbearable. I was throwing up and screaming in so much pain. I had to wake my mom up. She gave me tramadol. That seems to be the only medicine that ever helps ease the pain. I only have two pills left though so I do not know what I am going to do once they are gone. Two questions for you. What kind of symptoms are you dealing with? And have you ever had a rash associated with your Chiari? Just wondering because I had this rash for years, but when I got surgery it magically went away. About a year ago it came back so I was wondering if anyone else has experienced a rash? Thanks for all your help so far. Talk to ya soon!

dont see the neurologist , see the neurosurgeon that did your surgery . The neurologist is out of the oicture now . everyone needs to get a follow up MRI every 2 yrs.

That is what i was going to say yesterday. I am in a ton of pain today from getting my hair cut!!! Can't hardly move my head! Anyway, I was going to say that too. You should see the surgeon you went to or another one, if you don't like him. I have an appt with my original surgeon in Cols coming up. I went to a surgeon in Cleveland, but he said bc my flow study came back okay they would not do surgery again. Plus he said it would be too dangerous the second time. So what I am supposed to live with this freaking pain "he said I could die on the table" you can w/ any surgery? So I am going back to my original surgeon. Anyway, mine was worse 6 mo. after the surgery. I went to several neurologists who said they did not see anything. They lied! I got the copy of the MRI's and it was worse (than before the surgery with the crowding deformed cerebellar tonsils and the length!!! They won't check for tethered cord! Now I got another one not long ago and it was 10x worse than 6 mo after my surgery!

That is the neuro who said he won't do anything. I am now disabled and have not only that pain and symptoms but I have pain all the way down my back and into my legs real bad. I can't sit or stand for long. I can't ride in a car without pain! it is heartbreaking! I feel so old and I am only 36. I just want to feel better. I want them to make me better! So I know how you feel. Go to a neurosurgeon. Neurologists are against surgery and do anything they can to say there is nothing wrong so you don't go to a surgeon! Good luck!

I get a rash only on the back of my neck/head where the surgery was. Now I get dry scalp too. I am in pain every single day! I have had headaches every day for 11 years. They just got worse and headaches added on top. I have 3 different kinds of headaches. I too, throw up a lot! I understand and I sympathize with you. It is awful to have days when you just can't get out of bed. I am on headache pills, pain meds, and I have meds for vomitting, heart meds, and more. I developed Tachycardia on top of everything. So now I am seeing a cardiologist. We have to do a tilt table I have put off for several months. I might also have a CSF leak! Putting that test off for months too. However, the Tachycardia may be from the pain I endure!. It sucks, I know! Longer story, but that is the short of it. I just can't work anymore and I wish I could, but the pain and symptoms are too much.

Yeah I was just talking with my mom the other day and we both figured it would be better for me to just go back to my surgeon instead of the neurologist because the neurologist just keeps on insisting that I have migraine headaches and nothing else.

I definately understand where you are coming from with the whole wishing you were still able to work thing and about not being able to do certain things because of all the pain. I am still working and probably a lot more hours then I should be, but I want to go back to school so I need all of the money I can get. I dread going in every day because both of my jobs are physical and when I get home I just feel like dying because of how much pain I am in. It also hurts for me to sit up for too long of a time. My friends always want to go to the movies and sometimes I just can't go because my neck starts to hurt so bad. I can't even play basketball anymore.

And about the doctor saying you could die on the table. That's what I was told the first time I got surgery and you are exactly right. There is a risk of dying with every surgery.

When you get headaches where do they hurt you the most? I hope you don't have a CSF leak. My cousin ended up having that so he had to get a second surgery and get a shunt put in. He is still having problems to this day.

I am thinking about going to the Chiari Institute in New York, but my insurance doesn't cover it so I don't know how I would afford it. Thing is though 49 % of the surgeries done there are redos of previous surgeries. I just think since Chiari is such a complicated disease that if you don't go to the right surgeon you may not have a successful surgery.

Hello! Nice being able to talk to someone in the same exact boat! Since I have 3 different headaches, one is in the front of my head all over, the other is to the side a bit and one is my entire face/head (oh and the back of my head if that counts). The one headache starts from my neck and goes to my face and my eye. It is horrible - ER horrible most the time. I am trying to avoid going there now, they just think I am a drug seeker bc I goto the ER so much. I just stay home and cry my head off and can't move - also no sleep either at times. I have trouble sleeping.

It's ironic you mention not being able to go to the movies and stuff - that is the same with me - meaing the neck pain. That is so ironic. Well, that means that it is our chiari! Wow! To tell you the truth - I don't trust my surgeon a whole lot! He lied to me after the surgery - like 4 months later and said the MRI looked great and was normal and everything still the same - when it was not! He probably didn't want me to think that he did a bad job. Whatever! I look for more lies to come.

I have a problem too that it takes me a long time to get into him and have the appt this week and now I don't have a car to get there. Mine has been broke down for a year. Was going to take boyfriends but now his is breaking down and stalls a lot. Ugh!!!!

I wanted to go to the Chiari Institute but it takes so long to get into there and for them to call me back. It took them forever and by the time they did I got ahold of the Cleveland Clinic. I can't afford them either. Their cost is so high and it is cheaper at the Clinic - even if I have to pay myself it is still cheaper than going to New York. Would love to go there if they could discount it or something. Of course I have medicare now - I guess - I got a card in the mail with my social security - but I don't understand it one bit. No one has explained it to me and I didn't get any information on it. I am confused. I don't know if it would pay any of the institute or not. Well talk to you later.

see i am experiencing some different problems now and it has been a year to the date almost of my surgery.....had it done september 24, 2008 and now on the left side of my incision is a little swollen in my opinion and been hurting for the last couple of days. i am going to call the doctor who did it tomorrow but could it, like you were/are asking, have come back?? i am not experience the migraines (that is the only symptom I had) with it but right now i have a dull headache. just wondering

what is a CSF leak???