Way-Post-Op Complications

[Sug_97]

I had my decompression, craniectomy and C-1 laminectomy (all pretty typical I think) in October 2010 (almost two years ago). I was 35mm herniated at the time of my surgery, with no syrinx. 2.5 months after my surgery, the back of my head swelled up with CSF pretty bad. Whenever I moved my head (even from giggling), it caused excruciating pain in the front of my head (left forehead region). My husband called 911 and when the paramedics came, my PB was 170-122 (I'm usually about 110/60), so they rushed me to the ER. They gave me CT scan and confirmed that the fluid was pushing upward, basically shoving my brain upward and it was shoving into my skull. They treated me with Morphine and monitored me for a while, then let me go home for the weekend and I was told to follow-up with my NS on Monday. I had no shunt put in at the time of surgery and since my pain was under control, my NS asked me to wait until 18 months had passed before deciding whether I wanted a secondary surgery to put one in. I've had swelling off and on since and I basically learned to gently press the fluid downward and the fluid would go into my neck. (I know it sounds gross, but the pain that night was worse than when I had my children; it was worse than anything I've ever experienced.) When the 18 months were up, I decided against having a surgery just to put a shunt in place. I've still been filling with fluid, but it hasn't been as bad as that night.

It was really hot yesterday. and I walked into the air-conditioned house and I got a real sharp pain on the left side of my head. I went to the bathroom and my head started to hurt right behind my right eye and my right neck started to spasm and feel half-disconnected (like it did pre-op). I took some Tylenol, Pseudoephedrine (thinking it was a sinus headache coming on), a muscle relaxers and I took a short nap. When I woke up, the sinus pressure was gone, but the pressure and half-connected feeling in my neck remained. It seriously feels like my head is too heavy for my neck - a sensation I haven't felt in almost two years (I'm literally holding my head up with my hands). It's not really painful, there's just no strength in my neck at all. It feels like there's a lot of pressure there too. But my head isn't swollen with fluid right now, it's actually flat and hard (which does happen sometimes). I'm fine when I lay down, but when I get up the pressure is tremendous and I'm so dizzy, I feel like I'm going to faint. Feels like my eyes start bobbling around.

It's Friday and I don't want to waste time and money at the ER. What do y'all think? Have any of you post-op'ers experienced anything like this?

[selmaS]

  A syrinx would show on a MRI and can be in the cervical, thoracic or lumbar spine so having a MRI of the complete spine helps rule out a syrinx.

[Sug_97]

How did you just find out that you have a syrinx? Can they develop post op?

When I had my surgery, they pulled up my dura and didn't find one, so I just assumed I was in the clear.

[MandyJo07]

I've had two surgeries, I am home now and apparently I have a Syrinx which is to blame for my most recent symptoms. I have a follow up appointment Sep 10.

[selmaS]

  Deff ask them to check u for Ehlers-Danlos Syndrome as it could be a big part of ur pain issues, I know as I also have it.

I took me my whole life to get dx'd....so I know how u feel....

  Please keep us posted

[Sug_97]

Your last surgery was in 2008? How many surgeries have you had, if you don't mind me asking.

[Sug_97]

No... it took me 10 years of MRIs to be diagnosed with the Chiari in the first place, but there were no other diagnoses made. I was diagnosed in late Sept. 2010 and because I was already very symptomatic (I had gone 5 years where I'd lose my ability to walk or use my hands for weeks at a time.) I had the surgery just a couple of weeks later.