Severe neck stiffness post foromen magnum decompression

[Rachyp15]

Hello, I am new to the group.  I've been reading previous posts and find it reassuring that I am not the only one experiencing the symptoms that have been described e.g. Sickness, shaking, anxiety, throbbing pains and shooting pains. Oh and head not feeling connected to body -that's a weird one (people look at you weird when you say that)
My question is has anyone suffered with extreme neck stiffness that causes so much pain prevents you moving.  I am 30 from the UK and 7 weeks post foromen magnum decompression, after being diagnosed with chiari malformation 1 (11cm) with syrinx. I have not had an easy recovery which I suppose is expected, not had a full day of feeling well. But the last 5days I have been suffering with this awful stiffness in my neck down into my shoulders and upper back when I am in a sitting position no what matter what my posture is and the only way to relieve it is to lie down. This morning I woke up and was in horrific pain couldn't move hardly.  I've have taken a diazepam and it's eased considerably.  I was just wondereing if anyone else has experienced this and how long it lasted for? I have not been back to see my neurosurgeon yet.  I am hoping he will call for me soon as I have lots of questions. I will call them today to chase up. Thank you in advance for any help.

[selmaS]

  Have you followed a neck exercise routine along with heat? It is very important post op to keep the muscles from getting tight

Hang in there and keep us posted on your progress.

[selmaS]

  Hi and welcome to the Chiari forum.

One of my long term issues long before I was DX'd with Chiari was a stiff neck and my ROM was not good either ....my ROM post op is far more then I ever had prior.

Have you had any other related conditions rued out? It is possible to have related conditions that could be causing your neck issues....Like Ehlers-Danlos Syndrome which ca cause CCI...cervio cranial instability.

Being that you are in the UK I am not sure how easy it will be to get more answers before they decide to do surgery or not...but more testing should be done.

[Rachyp15]

Hi thank you for your response.

My symptoms before dx were daily headaches and am stiffness. My rom were not to bad. Now after surgery I have not suffered like neck stiffness with so much pain like this ever.  I've tried doing some neck and shoulder physio exercises which help for a short time.  Only just started 6weeks post op maybe I'm not moving enough and I'm seizing up?

I will look up ehlers-danlos syndrome. See if it matches my symptoms. I will be hopefully be seeing my neurosurgeon for a follow up within a few weeks so will get some answers from him fingers crossed.

I hope no more surgery will be needed,recovery from this one is so tough.
Thanks again :-)