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Way-Post-Op Complications
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?
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?
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.
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.
When I had my surgery, they pulled up my dura and didn't find one, so I just assumed I was in the clear.
COMMUNITY LEADER
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.
I've never heard of Ehlers-Danlos. I do have joint problems and have for years, but I just figured I wasn't exercising enough.
My cervio cranial instability is still problematic, but it seems to come and go (not constant like it was before my surgery).
It always bothered me that the only option my NS was giving me was a surgery to run a shunt from my head to my thigh, then it dawned on me, he's a neurosurgeon and not a neurologist. I've never even seen a neurologist. Anyway, I emailed my NS and told him about my problems. I'm having another MRI done on 9/23 and he said once he sees the MRI results, he will see if there are any other options (like seeing a neurologist and a ENT specialist), other than surgery.
The ENT (ears, nose, and throat) specialist is because I've had fluid coming out of my left ear for a long time now. I saw my general practitioner about it and he just said he sees no sign of infection. But because I could feel it dripping every day and can stick my finger in my ear and my finger is wet, I didn't give up! I Googled it and found out it is common with Chiarians.
It's very odd how so many things that seem unrelated all seem to always come back to one thing, chiari. =(
My cervio cranial instability is still problematic, but it seems to come and go (not constant like it was before my surgery).
It always bothered me that the only option my NS was giving me was a surgery to run a shunt from my head to my thigh, then it dawned on me, he's a neurosurgeon and not a neurologist. I've never even seen a neurologist. Anyway, I emailed my NS and told him about my problems. I'm having another MRI done on 9/23 and he said once he sees the MRI results, he will see if there are any other options (like seeing a neurologist and a ENT specialist), other than surgery.
The ENT (ears, nose, and throat) specialist is because I've had fluid coming out of my left ear for a long time now. I saw my general practitioner about it and he just said he sees no sign of infection. But because I could feel it dripping every day and can stick my finger in my ear and my finger is wet, I didn't give up! I Googled it and found out it is common with Chiarians.
It's very odd how so many things that seem unrelated all seem to always come back to one thing, chiari. =(
COMMUNITY LEADER
We do have a EDS group here on MedHelp with plenty of videos and links to info, u may want to check it out-
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
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Hi and welcome to the Chiari forum.
What u describe sounds a lot like cervio cranial instability.,..like we r bobble heads, our neck can not hole the weight of the head and it feels like it will just bob all over if we do not hold on to it.... so bumpy car rides can make us feel really bad....
Were u dx'd with Ehlers-Danlos too?