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.

I want to welcome you to Neuro Talk. You found the right site, and there should be people coming along to help with your situation. I know what your condition is, and I am ever so sorry this has happened to you. I wish there were a quick fix. I am not happy they released you from the hospital without a full resolution. This must be very unsettling to you. I would call your doctor and get the response from him that you need to resolve this issue. It doesn't sound that this is something that should be post- poned for any reason. I know just enough to understand. I would be upset too. I hope people with your condition will come to the site and help you. There are many on this forum that have had this condition, or are currently engaged in treatment. There are some compassionate people too to help support you while you go through this trauma. I am here just as a member to offer that support. I hope people respond to you soon. I will keep you in my thoughts and prayers. ginnie

-- 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.

Hello mdr1216 and welcome to NeuroTalk although I'm sorry for the reasons that brought you to us.

I hope you're not offended, but I broke your post into paragraphs to make it easier for others to read.

I'm afraid I don't know much about chiari malfunction but I did want to welcome you to the site. Please let us know if we can help in any way.

i am new to this site, but a very close friend, a loved one has been recently told she has a low cerebellum. I have been reading about all this and find some frightening similarities with her symptoms and your experience. She too has problem swallowing, in fact has lost the use of one of her vocal cords all together, she just lost her job because of it. She goes to the doctors tomorrow, what questions does she need to ask to get the answers she needs? please respond soon thank you

First, let me welcome you to Neuro Talk. You can get lots of good information here. Also support for what your friend is going through. There are others that will respond to details of what you want to know. all questions write down for the appt. any fears, write down, also if you have discovered information on the internet that scare you, bring that up to your doctor. don't let the information overwhelm you before your doctor has chance to explain things better. Many people have good resolution with this condition. Have some hope that things will turn out OK. We will be here to support both you and your friend. This is a great site, whenever I have trouble medically, I run back here for that support, and the friendships that I made. ginnie

I would like to join your all in this forum. I also posted several comments in the forum about Laminectomy I had in 2010 (6 hour surgery) after which I developed a big pseudomeningocele in the low back area. In 2011, they addressed the pseudomeningocele (2 hour surgery). Just like in some cases I read in the Intrernet, my second scar is longer than the first one. They patched the torn dura and I was happy. Two days ago I had another MRI. The pceudomeningocele is back which means the fluid is still leaking or leaking again as the dura is torn... I have no idea what to do. I haven't talked to my neurosurgeon yet (he is fantastic!) No way I want another surgery. I wonder whether lumbar puncture would help to get the fuild out. Did anyone have those? I don't have the typical headaches that everybody experiences but I did faint 6 months ago and that was the main reason i decided to do my second surgery. I guess I can live with the sensations I constantly have in my head, but I don't want to be dragged to an emergency room if I faint in the street and people around wouldn't know what to do. Besides, I am concerned about those complications that huge pseudomeningoceles lead to.

Sorry to read that you have had so much happen. I have a friend that had the same kind of thing. He did have the lumbar puncture proceedure. I looked it up too, and it was mentioned as one of the possible things to try besides surgery. Rather than all your symptoms, maybe talking to the neuro and asking about this would give you some comfort and hope. With my own conditions, I am reaching out for help too, even though I am not sure it will work. I am at least asking about it. I wish you the best. ginnie

It sounds like you have the same problem I did. When they were in there for the 2nd surgery did they test your spinal fluid pressure? When I got my first leak my headaches weren't as bad as before the surgery, but the pressure was unbearable at times. When they tested my fluid initially I was at a 24. Once the fluid pressure was drained I went down to a 12. After they repaired the dura I did have a lumbar drain, which was incredibly painful. They scheduled a 20cc drain every 2 hours to take the pressure off the internal sutures for 2 days. I had to lay completely flat while it was draining which made the pain worse. 2 weeks after my surgery my pain came back full force, and my neurosurgeon admitted me that day. More MRI's confirmed the leak had returned and before they would do another surgery I had to get a spinal tap done. I laid flat on a very hard x-ray table( which was the hardest part since I could not turn my head from side to side) then they inserted a needle similar to when you have an epideral done. Once the needle was in my spine I had to turn on my side, and they inserted a small device into the needle to measure my pressure, which tested at a 29. After draining quite a bit of fluid my pressure only dropped to a 19. I had a csf shunt procedure later that afternoon. My shut was set to a 12, and a week or so later I had to be dropped down to a 9. I am currently at a 7. My advice would be to have the shunt done. As uncomfortable as it is at times, depending on how high your pressure gets, it can be very harmful to your brain an your everyday motor skills, along with a lot more health/physical problems. I am sorry to hear about your 2nd leak. I hope this helps and things work out for you!!