CHIARI MALFORMATION... SEVERE PAIN 8MONTHS AFTER SURGERY
Posted , 4 users are following.
HI EVERYONE I JUST TURNED 29 YEARS OLD ON THE 2ND OF JULY. IM A MOTHER OF A 1 YEAR OLD SON. I RECENTLY HAD CHIARI MALFORMATION AND SYRINGOMYELIA SURGERY IN NOVEMBER 2014. I AM STILL HAVING SERVERE NECK PAIN EVERYDAY AND MY NEUROLOGIST SAYS THAT THE SYRINX IS CLOSING BUT I SWEAR THIS PAIN FEELS LIKE THE PAIN I WAS HAVING BEFORE SOMEONE PLEASE HELP ME I AM SO TIRED OF BEING IN PAIN EVERYDAY. I AM IN SO MUCH PAIN I CAN'T TURN MY NECK OR LIFT MY HEAD UP. CAN ANYONE TELL ME WHAT THEY THINK COULD BE WRONG??
0 likes, 5 replies
emza1910 jasminecrawford
Posted
hayleybell jasminecrawford
Posted
firstly I must inform you that I am NOT a doctor or have any neuro medical training!!
i was diagnosed with Chiari 7 years ago ( no syrinx) & had my decompression surgery in May, so I am still fresh on the road to recovery.
my neck has healed considerably well, but I didn't have neck symptoms beforehand, mine were a long list of other symptoms before surgery!
it is good news that your syrinx is shrinking. I am assuming you are having regular MRI's post op.?
from the team of specialists I have been seeing (neurosurgeon & specialist neuro nurses) I have been told to expect neuro surgery recovery to last up to 2 years. You must be 8 months post op now, is severe neck pain your only problem?
It must be hard having a little one to look after, lifting them all the time could be effecting your muscles and nerves healing, but then again, it is impossible at times not to pick them up for a cuddle, especially at that age.
my youngest is a heavy 4 year old & I can't lift him as it hurts me.
Perhaps it may be all the fluid readjusting itself as the syrinx shrinks & the fluid pressures settle?
I had a small collection of fluid in my neck a few weeks ago (apparently normal post op) & it hurt like hell.
what does your neurosurgeon say?
look forward to hearing from you
Hayley
hayleybell jasminecrawford
Posted
jasminecrawford hayleybell
Posted
Farmerlady jasminecrawford
Posted
I had chiari surgery April 2 this year. I was looking for other's stories bc I am still having symptoms too but much better than at my worst before surgery. I'm sorry you are hurting so much. That has to be miserable with a toddler to care for.
I am a tennis player and was in good shape before the surgery so maybe that has made my recovery quicker, but who knows? When I learned I needed the surgery, I started doing neck execises to strengthen the muscles and I resumed them as soon as I could after surgery and will keep doing them. I don't know if you are able to right now but if you can do a little each day and maybe increase gradually, building the muscles may help with the pain.
I get down on hands and knees and line up with the side of the couch and push my head against it for a count of 20. Then I turn around and do the other side. Then I put my forehead on top of the cushion and push down, then under the upholstered arm and push up. When I push against it, my head isn't moving- it is static exercise. As with any exercise you have to balance your muscles by doing the opposite sides. This builds my neck muscles up and I have fewer symptoms.
Best wishes!
Laura