Quote:
Originally Posted by MrsRuckus
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.
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-- I completely understand all of your pain and frustrations. I have suffered with server migraines pretty much my entire life. I am 25 years old now and after spending a total of about a month and a half in the hospital over a 4 month period, I unfortunately report I am still not pain free.
I have been comPletely active for a good portion of my life and on numerous Medications to try and help the headaches and migraines with no luck. On May 27, 2010 I experienced my first complete disabling migraine. It was my daughters 4 birthday and party and I hardly remember it. I spent most of the day throwing up.
Between then and August my pcp had me on different medications, I went to chiropractors and tried all kinds Of things. I finally gave up, took matters into my own hands and decided to find neurologist since my pcp would not even send me for a simple migraine. My headaches were so bad that I lost feeling in my hands, had tingling in my arms, the most awful pain/ pressure in the back of my head/ neck that I would spend most days throwing up and crying while trying to take care I my 9 month old and working. I would literally roll around on my bed, floor or couch throwing myself in positions hoping the massive amounts of pain would go away.
My neurologist nailed in on the head after talking with me for five minutes. I had a CT scan later that afternoon( Monday) by Wednesday I was back in is his office with confirmation of ACM 1. Two weeks later I was going in to surgery. I had the decompression surgery, and was out of work for 6 weeks, couldn't drive for a month, and had to have someone stay with me since my husband worked nights and I had two children to take care of.
My first surgery was on August 26, 2010. 2nd surgery due to a leak in my dura and csf building up in my soft tissues, was on November 4th. After my 2nd surgery I thought I was in the clear! I felt awesome! Not even close to the difficulty in recovery as the 1st surgery! Even tho the incision was longer and they had to shave more of my head I thought I was finally going to be pain free. Not even close. 2 weeks later to the day almost I was admitted back into the hospital.
I had to have a spinal tap done to test my pressure, which they had already done during my 2nd surgery, which resulted in a lumbar drain. A normal range of csf pressure is 12-15. Time of surgery mine was at about a 17. When they did my tap to test the pressure I was at a 26. I went in for surgery the next afternoon. When They first put the shunt in they set it at a 12. After two more changes I am now at a 7.
Almost 2 years later I am still not even close back to normal. I am a caffeine junkie, or my headaches come back. My neck , back and shoulders are constantly weak and aching. I would live like this for the rest of my life over the pain I had with those headaches before. My neurosurgeon and the hospital were absolutely fantastic! I had an amazing team Of doctors and nurses that were over the top fantastic! I have been having worse pain Over the last week and am debating on going back to see my ns.
I would highly recommend the csf shunt to reliever the build of, and unfortunately the amount of trauma your body goes thru with all of these surgeries, you will never feel " normal " again.
Prayers headed your way so that they help you sooner rather than later. Hope my story helps a little in some way.