My Story

September 2011 I began having debilitating headaches, vision problems, dizziness, difficulty swallowing, and coordination problems - which led me to having fallen down stairs and major balance problems.

After weeks of horrible pain and missing work for nearly a month, in early November I seen my family doctor who referred me to a Neurologist who had me do a head MRI - which they found my Chiari. I was then sent to a Neurosurgeon the following week, and he had another MRI done - this time it was a full spinal where they had found that my Chiari had caused a Syrinx that spanned 90% of my spinal column.

December 1st I had my decompression surgery - craniectomy, laminectomy and a duraplasty with a synthetic patch. Everything had gone quite well with the surgery, I woke up with the obvious post surgery pain however all my symptoms had gone and it was deemed successful.

Mid January 2012, I started noticing some fluid leaking from my suture and that the back of my head and neck had ballooned. Went to emergency, and they did a CT scan which found that I had developed a Pseudomeningocele (a collection of fluid leaking from the brain into the spacing between the brain's covering and muscle and skin).

They had told me that they will follow a 3-step process in order to fix this problem.

Step 1 - stitch the suture site so that fluid stays under my skin in order to reduce the risk of infection. - Which they did.

Step 2 - a lumbar puncture/drain, basically a spinal tap that they put a tube into your spinal column and leave it in for 5 days to constantly draining fluid to help remove the swelling. - They eventually got the drain to work but that was after 5 attempts at a spinal tap, even when they successfully got the drain in, it only worked for approximately 24 hours before it began to lean up against a nerve which cause me severe left leg pain and i was unable to walk.

Step 3 - redo the surgery to fix the internal leak. - they haven't done this yet.

Basically my reason for writing in this forum is to try and get an understanding for how other people have dealt with these types of issues. I'm currently waiting for my next appointment with the surgeon to see if another surgery is going to happen or not. I am hoping that they do the second surgery so that I can finally be fixed of these problems and be able to go back to my normal life. I feel like I have so many questions and concerns that I just can't get out of my head enough to not feel depressed or panicked. Although the lumbar drain did bring down my swelling, as soon as it came out and they released me from the hospital 2 weeks ago, the swelling has ballooned again and the pain is back.

I feel frustrated at the doctors for releasing me before I am fixed, and I don't want to live with this swelling at the back of my head forever.