Help with headaches after decompression surgery and shunt ligation

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Comment by Susan J on February 10, 2012 at 11:23pm

I had horrible pressure and nausea with my psuedomingeocele. I was given morphine when I had my decompression surgery. Morphine and I didn't mix well. I threw up every hour on the hour until my mom and sister helped convince the doctor to give me sormthing else. Later it was determine that I ripped the patch off when I was throwing up. It took a lot to convince anyone that there was something going on. I could feel the fluid. It kept getting bigger and bigger. I was continually told that this was normal swelling. I was almost 8 weeks post op and my instinct told my this was not normal. By this point I was throwing up everything I ate. I finally got the doc to okay an MRI, but was told it would be Tuesday before I could get it done--you know insurance approval and all that. This was on a Thursday. I am fortunate that my cousin is the business manager to an imaging business. He got me in that night, didn't bother with insurance. The radiologist just needed the order. I had so much fluid that I was sent straight to the ER and earned a reservation in ICU for 5 more days. I had so much fluid that it was pushing out about 3 inches at the back of my skull where they remove the skull bone. My brother described my head as a new science fiction reverse cone head. Ha ha. They drained 4 ounces of fluid which they figured was only about a 1/3 of the fluid. I was repeatedly told they were surprised that I still had my neurological functions in check and that I wasn't having seizures. They wrapped my head extremely tight hoping this would help and allow it to seal itself off. I wore that wrap for about a week and half. It didn't work. I had to get a VP shunt. A year later, I got a new doc ( a wonderful blessing named Dr. Velat) in the clinic. After a lumbar puncture and shunt revision, he went back in and fixed the leak. I had been told that I had psuedo tumor, but it was determined that my pressure level was most likely fine. When they redid the decompression surgery, I had to stay in the ICU for 5 days with a lumbar drain to rule out spontaneous pressure spikes. I never had a single high pressure reading. I most likely never needed the shunt. The leak just needed to be fixed. My shunt was ligated, a new patch was put in and I have had no problem with the psuedomingeocele until January 10. I got the stomach flu and I am fairly certain that I ripped it back open. I can feel the fluid again. The pressure is back in my head. My vision is blurry again. My headaches are constant, every day occurance. I go the the doc Tuesday.

Discuss with your doctor the options of fixing the leak vs. getting a shunt. If I could have it to do all over, I would not get the shunt. I hope you have a better relationship with your neurosurgeon than I did. I was at a teaching hospital. I never knew who would come through the door. I have seen 10 neurosurgery residents, 2 fellows and 1 real deal. Make them go over all the pros and cons of every option. I wasn't given the option of fixing the leak. I was scared and not to the point of really questioning everything. Good luck I hope you are the lucky one and the fluid corrects without surgery.


Susan

Comment by Christine on February 10, 2012 at 3:03pm

Oh my goodness, you have been through so much.  Before my decompression surgery, they did try occipital nerve blocker injections twice on me.  They didn't work.  I would give it a shot.  You're on so many meds, it's worth a try & it may give you some relief. Don't blame you for not wanting to take narcotics.  That's not the answer.   I too have a pseudomenningocele.  They're doing the wait and see approach with me.  Seeing if the fluid disapates.  If not, I may need a shunt.  When did you find out you had the fluid build up?  The pressure in my head at times is intense!  Especially with weather changes and sudden movements.  Feels like my temples & forehead are going to pop off! I do hope you find relief soon.  Thinking of you and I do feel your pain. 

Christine XO