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CSF leak and continued headache
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CSF leak and continued headache

I have thus far been unable to get an answer to this question. I underwent Microvascular Decompression in May 15, 2009 to treat Trigeminal Neuralgia. After the surgery I suffered a CSF leak for 10 days (I believe it was caused by the shoving of my head into the "holder" for the post-op CT scan..just a guess though). I recieved a blood patch to treat the leak on May 26, 2009. The Trigeminal shocks have pretty well stopped, however, when I cough, sneeze, jump, run or go on a bumpy car ride it feels like my brain is slamming against my skull. I also get headaches now that feel almost as if my head is a pressure cooker about to explode. I also recently made the mistake of riding an amusing park ride (after much proding from my daughter) and it felt as though my brain was being pushed down because of the G-force. I want to know is this normal. I am worried that I am going to give myself brain damage from something as simple as a sneeze or a cough. Please, please help me. I have a 6 year old counting on me and I start nursing school in 2 weeks. If this is normal and I need to learn to live with it I will, I just want to make sure that there isn't something further wrong "up there". Thank you for your help!!
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Avatar_f_tn
Sorry I don't have an answer.  But I did have a similar experience after an LP.  I had a severe spinal headache for 5 days before they did the blood patch.  I've often, since then, felt a similar type of headache, but I don't know why.
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485259_tn?1326312778
Sorry I dont have the answer either. But since that was quite awhile ago since you had the surgery, I would ask your doctor who did it or your neurologist what the "normal" state is this far post-op.
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Avatar_f_tn
I saw your post and could not stop thinking about how similar your situation is to what I have gone through. I had Microvascular Decompression in 1998 after 5 years of pure hell. I too had a CSF leak after surgery. Your headaches are called Valsalva HA and they are common in people with intracranial pressure. I believe you might have a Arnold Chiari Malformation. I did, but did not know until 5 years after my MVD surgery. You need to google it and visit www.wacma.com and other chiari sites and see if any of the symptoms ring true for you.  I had to self diagnose myself even after my neurosurgeon knew I had this but did not think it was causing my problems. I will quickly describe what ACM is. It is when the back part of the skull is too small and your cerebellar tonsils are being forced down through the bottom of the skull blocking the Cerebral spinal fluid flow. I found my diagnosis on my MRI report but the docs thought the herniation was too small so told me nothing was wrong. It wasn't until I google Chiari that I found out what it was and it made so much sense. My Trigeminal pain started coming back about a 1 1/2 years after my surgery in 1998 but not as bad as before. I had terrible headaches and a whole bunch of other symptoms. After seeing many,many doctors that told me basically I was depressed and nothing was wrong I found 2 neurosurgeons in NY that knew what I had and validated everything I was going through. I had  skull (Posterior Fossa) decompression surgery and then a VP shunt put in to drain the fluid from my brain. After the skull decompression surgery my TN pain was better but after the Shunt was put in it totally disappeared. Dr Bolognese and Dr Milhorat saved my life. If you google these doctors please disregard the terrible stuff written about them. Their is some law suits against them which I believe are Bull Crap. They have helped me and thousands of others. I am not sure if all TN could be caused by Chiari or by hydrocephalus ( fluid build up inside the brain,high pressure)or not but these conditions can put pressure on the 5th crainial nerve which is what the Trigeminal nerve is.Hydrocephalus can be caused by other reasons other then Chiari. I hope this helps, Please don't give up looking for the answer it is out there. I am not sure if on this forum you can private message people but I would be happy to speak to you on the phone and see if I can help more. Take care, hang in there everyone suffering with this it is truly a vicious and wicked malady to deal with. It is unfair that anyone has to suffer from this. Sending Big Hugs to all of you suffering.
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