Hi I want to introduce my self, my name is Roy. I am new here, and have lots of concerns and questions that's need answers please! I have arnold chiari malformation, and after at least ten Years I found a doctor who would listen to me. He asked me what my symptoms were, had an MRI done. He told me that my sag was pretty severe and recommended surgery. So I did. I never got any better after the surgery. I sufficed from diabetes which I never had before , then my incision kept opening and was leaking puss. Every time I saw the doctor he said that was normal. I grew sicker and sicker. I couldn't keep anything down, and all I would do was lay in bed and sip water. One night I got up to stumble to the bathroom, and that's when I passed out. I woke up in the back of the ambulance and on the way to the er. My blood pressure was 31/56, not good. They worked on getting my blood pressure stable enough to transport me back down where I had the surgery done, and then to find out he was no longer working for that office and was no longer my surgeon. We didn't know what to do so my wife filed an a grievance with my insure company and next thing you know, I'm going to uc irvine. They took one look at my incision and set me up for surgery. The infection went from the incision ad through to my brain and skull. They were able to scrub it out and hit me with a picc line and some heavy antibiotics for a few months. Now in the past few months I am starting to have a lot of new symptoms, so if anybody haas some answers or advice for me that would be a blessing. It's when I had all the signs and symptoms of a stroke. My eyes blurred, my left side completely locked up on me, then after 5 or 10 minutes it stopped but the came the excruciating headache. That has happened around 5 or 6 times. Now I have extremely bad headaches 24/7, blurred and double vision, my legs and arms muscles are always locked UPC in nausea, I get mood changes, clumsiness, and extremely fatigued. Can someone please give me a heads up on whats going on with me, I really appreciate it, thanks.

Hi Rdenno,
Gosh, it sounds as if you've been going through a very difficult time post surgery. I'll give you the link below where you may be able to get some info from other people who have been through the same type of surgery.

I hope you're feeling better soon.

Arnold Chiari Malformation & Syringomyelia Forum

Roy,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Lara has given you a great place where you will find some friends to help you out.

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

It sounds like that infection wreaked total havoc on you. I'm so sorry you are suffering so terribly!

I had the Chiari decompression surgery in 2004 but I did not have quite the bad time you've been experiencing. For awhile I've been getting progressively worse with a bunch of the symptoms you mentioned you are dealing with. I thought I had MS. 2+ doctors thought I had MS. I found out within the last two weeks that what I have is Epilepsy and the stroke like symptoms were actually me having seizures. Not all seizures are the grand mal type that people associate with Epilepsy. It took a really detailed EEG to find out I have this disease. They did MRI's, etc. but they didn't show the Epilepsy (though it showed other things). That was strictly the EEG (not the kind where it takes longer to hook you up to the machine than it does to test) that found it. That EEG took nearly 30 minutes (it could have been an hour...I lose track of time sometimes). Because this EEG was so abnormal, I have a company coming out tomorrow to hook me up to a 72 hour EEG that I have to stay home all weekend and take it easy. It's supposed to give much more detail.

You may want to ask your neuro - and I hope that dr. that performed the surgery so poorly and then ran gets what's coming to him. What a jerk! - about doing a longer EEG. And if he won't work with you more to find out what's up, find a new dr that will. I'm glad I never gave up - it took til I was 38 to find out I had Chiari and we're born with that! The syrinx is a massive problem, but I'm playing the cards I've been dealt and trying to work through it all.

Please keep us posted how you are doing!