CHIARI MALFORMATION... SEVERE PAIN 8MONTHS AFTER SURGERY

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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??

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  • Posted

    Hi... I had my decompression in may 2012.. And it took me a while to rebuild me neck muscle back up. I'd moan to the doctor sayin my neck jus wants to hang down n he explained that it's cus because of the surgery and them cutting through the tissue.. And does take a while for it to settle down. I still suffer now and it's been three years. But it does depend on Wat I've done. X
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  • Posted

    Hi Jasmine, sorry to hear you are in so much pain.

    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

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  • Posted

    P.S---- is this a new symptom or have you had it since the op? 
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    • Posted

      Hi Hayley thanks for responding. Yes I had this problem since the OP idk what to do I see my neuro every month and all he does he prescribe me percocets which I hate taking and it only helps for 29-30 mins. I know this is crazy but I told him that I've been trying different pain meds to see what really helps me function and doesn't make me sick like the percocets I told him that I've tried Marijuana. My uncle has to have it for his glaucoma and that takes my pain away for the whole day and it even gives me a appetite. The percocets keep me in the bed and makes me very nauseous. I really hate them. But of course he tells me he can't prescribe me any so idk what to do. It helps me throughout the day with my son and helps me sleep at night. The percocets make me sleepy and not wanting to do anything. Now he wants me to go see a pain management doctor. Smh these Georgia doctors are really not helping me I'm thinking about going to get a second opinion because something is really wrong I know my body and this isn't right.
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  • Posted

    Hi Jasmine,

    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

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