Hi All
It's been a long time since I have posted anything. I have Chiari decompression surgery on 6/27/13, so almost a year ago. Over the past 2 weeks I have noticed my symptoms returning. Head pounding with movement, numbess in arms, legs and fingers. Numbness of my nose and EXTREME fatigue. Has anybody experienced this? Does anybody have any advice for me?
Brandi
Brandi I think you should call your NS. Did you have the full decompression with the duraplasty and plate to the back of your skull? Have you had a post op cine MRI? I’m sorry you are having symptoms showing up, please keep us posted.
Thank you guys for responding to my question. I had a bony decompresion. The dura was not opened. I have contacted by NS and am scheduled for an MRI on June 5th. I will definitely keep you guys posted. I am anxious to see how it turns out. I have read some research that if you don't have the duraplasty that you have more of a chance of the symptoms returning. Not sure if this is completely accurate or not. Maybe you could let me know your thoughts.
Brandi, so glad they ordered an MRI. I know that only a bony decompression can result in a only a temporary relief in symptoms for some people. Other avenues to pursue are: neck issues like cervical stenosis and cervical instability, and cranio cervical instability. The CCI can result from Ehlers Danlos Syndrome- our ligaments become too lax to restrict pathological movement if heads in conjunction with our spine and cause spinal cord and medulla compression. We can also have congenital CCI like basilar invagination. Google the Brighyon criteria for Ehlers Danlos and see how you stack up. Not everybody with EDS has doughy skin or circus-worthy flexibility. A tough part of dealing with CCI is that not all Chiari surgeons will screen for or fix it, sometimes we have to find a new surgeon and start anew. I’m anxious to hear how your appt goes. Oh! This may help you… When my symptoms returned it was recommended that I wear a cervical collar that restricts the forward and backward motion of the neck- it was remarkable in the reduction of my symptoms.
Hang in there, jenn
Hi Brandi,I had my decompression and duroplasty done the same day as you,I also had C1removed.Im in the little island state of Tasmania,Australia.I wasnt even given a list of do nots,they did arrange for home help to come twice a week to help me shower.Neurosurgeon is a 5 hour drive away ,some years they do 0,1,sometimes 2 Chiari surgeries a year .I got all my info from the Mayfield Chiari Centre until I found this site recently.A lot of my symptoms seemed to go but my eyes have started playing up ,cannot concentrate for very long or I get very tired.I had a 6 week post op check but have not been given any other appointments.I was just told I'd be right in 6 months and what hadnt came right by then wouldnt.Thats it..
So the update for me is that I have an MRI scheduled for June 5th. Does anyone have an opinion if I should also be getting a CSF flow MRI also or will the MRI alone show why my symptoms have returned. Thank to everybody for a 'll the advice and knowledge.
Hi Brandi
It’s been five years since I had my surgery, and for the past two months, I’ve been having really bad headaches on the left side, and severe pressure in my left eye. I’ve also been experiencing severe numbness in my left fingers, arm, and thigh. I’m going to see my doctor in a few days. I hope all is well. The only advice I have, is to go to your doctor.