I had my decompression surgery for my chiari in March of this year. I had neck pain for a very long time after that. My NS never did any tests just gave me more time off work said it takes time to heal. Eventually he said I didn't need to see him anymore even though I still had my neck pain. Went back to work for a couple months with the pain. On a Sunday I yawned and heard a pop in my neck following excruciating pain. Had my husband take me to the ER had a cat scan. Results came back with stable c1 fracture. Said haven't seen anything like this in 25 years. Sent me home in pain, told me to contact my 'S without fail the next day. Went to my appt. He played it off as a fluke and treated me like I shouldn't be in that much pain to have to use a walker when it hurt. He ordered a J brace and was told not to take it off and wear it for 6 weeks. He said he removed half my c1 vertebrae and that it's the other half that's fractured. He said of all the chiari surgeries he hasn't had this happen in 25 years. Right there tells me it's from the surgery. I'm wondering if he weakened my c1 vertebrae during the surgery. I'm still in a lot of pain, can't move my neck, I have pain shooting down my arms and numbness and tingling in my legs. Has anybody heard of this happening? I don't know what to do I'm so miserable.
I haven't heard of a fracture. I had decompression last year with C1 removal. The Ns did mention that I may have problems with my cervical discs and I do :(. I have an Aspen Vista Collar for 4 months now. We have gone to another Doctor for a second opinion because I was diagnosed with Ehlers Danlos Syndrome in may which is complicating my health to sya the least. Hope you can find someone who can help.
Oh my goodness, Dawn! That is ridiculous!
You definitely need a second opinion about your neck. Maybe even from a Neurosurgeon that specializes in spine repairs? Might someone like that have better ideas about how to treat the fracture?
I'm sending (gentle) hugs your way.
Donna
This is very serious. Please see someone else as soon as possible. I am so sorry you are in so much pain. Please keep us updated. I am very worried about you.
Yes, please see a different neurosurgeon.
I just had my first visit with Oro and he actually told me my neck had to be fixed prior to considering decompression. The pressure of the brain pushing down on the spine can cause compression and stenosis (premature breakdown of the vertabrae &discs). I have both in the c-spine and rupture in the lumbar as well.
Think of the spine as a piston of motor. Which repeatedly hammers the brain with movement. Over time they both suffer injury.
Did you have a c-spine MRI prior to surgery? I have heard several times that c-spine issues are very common amongst us with this condition. I have also heard it is common to do a C1 laminectomy (remove C1 vertebrae) with the 1st decompression surgery to make more room for the brain.
I would check the MRI prior to surgery if you can for evidence of a previous issue.
I hope you get to feeling better soon…
Hi Dawn..
Oh my goodness...I am so sorry you are having such problems...I hope that you get some answers..I, too,agree with the other members that replied...get another opinion.
Please let us know how you are doing and if you are getting anywhere with another opinion.
Take care,
Lori
I've not heard of this but agree with the others on getting another opinion! I'm sorry you are in so much pain and I hope you feel better soon!
Dawn, did you have a mri or ct scan after surgery prior to thefracture? Did yr surgeon send u to physical therapy? My fiance had decompression almost a year ago and has neck pain too even after PT. He gets massages and ice and heat for now. I think its likely after a decompression anything related to the area is possible. Hope things get better for you!
I went to a different NS for a second opinion not realizing it's the same guy who read my ct scans at the ER ( the one who sent me home) who is also in the same building as the NS who did my chiari surgery. He claims my NS did my chiari surgery correctly and agrees that surgery can't fix my fracture. He gave me orders to get a bone density test done and blood work to check my parathyroid, kidneys, white blood cells, etc. I will get my results this upcoming Monday. I am waiting to find out these results before consulting a third opinion. I will keep everyone updated when I get to that point. Please continue to pray for me. Love you all.
No I did not have a cspine Mri, but I did have cat scans and mri with contrast before surgery. My chiari showed up and a mild anterolisthesis. Both my neurologist and neurosurgeon said my problems was from my chiari not the anterolisthesis, so I did the chiari surgery. I did not have anymore ct scans or mri after the surgery. I went back to work 4 months after surgery. Complained of neck pain all the NS did was give me a month more off work cause he thought maybe I went back to work too soon. Still had the neck pain while I was off work. Went back to NS he insisted that he fixed my chiari and felt that I no longer needed to see him even though I was still having neck problems. Went back to work and then weeks later went to my primary Dr. And he did no tests just felt my neck with his hand and called it a sprain and gave me naproxen to take twice a day. A week later I got the fracture from a yawn after church. So here I am worst off than I was before the surgery :(
pebbles said:
I just had my first visit with Oro and he actually told me my neck had to be fixed prior to considering decompression. The pressure of the brain pushing down on the spine can cause compression and stenosis (premature breakdown of the vertabrae &discs). I have both in the c-spine and rupture in the lumbar as well.
Think of the spine as a piston of motor. Which repeatedly hammers the brain with movement. Over time they both suffer injury.
Did you have a c-spine MRI prior to surgery? I have heard several times that c-spine issues are very common amongst us with this condition. I have also heard it is common to do a C1 laminectomy (remove C1 vertebrae) with the 1st decompression surgery to make more room for the brain.
I would check the MRI prior to surgery if you can for evidence of a previous issue.
I hope you get to feeling better soon...
I did not have any scans after surgery and before the fracture. I didn't get offered physical therapy either:(
Momo said:
Dawn, did you have a mri or ct scan after surgery prior to thefracture? Did yr surgeon send u to physical therapy? My fiance had decompression almost a year ago and has neck pain too even after PT. He gets massages and ice and heat for now. I think its likely after a decompression anything related to the area is possible. Hope things get better for you!
I will continue to pray for you:) please get a third opinion from the highest recommended neurosurgeon you can get to, definitely someone outside of that hospital group who has been treating you. Anterolesthesis does cause symptoms, that right there is enough to warrant a third opinion not to mention making sure the fracture is treated correctly.
So my bone quality is excellent. All my bloodwork came back ok. NS ( the 2nd opinion one who is in the same building as the NS who did my decompression surgery who are friends in real life...didn't know that at first or I would have got a different second opinion) said that he doesn't know why this happened and told me that I'll heal and to not make a big deal out of this. He said the surgery was done exactly the way he would have done it. He added 6 more weeks to my recovery so a total of 12 weeks it's already been two. Said in 6 more weeks I'll get xrays done to see if I still need the brace. I'm glad that I don't have anything more seriously wrong with me, but I hate that they can't explain why this happened. I tried googling my situation and can't find anything like mine. There has to be a reason how a yawn can fracture your c1 vertebrae. I was going to get a third opinion but afraid I'll just be wasting my money being told the same thing. My gut says this is from my decompression surgery like they took too much c1 vertebrae off or cause a hairline fracture that got worse, but I could never prove that cause they never did anymore tests or scans after the surgery. They definitely aren't going to admit they made a mistake...it'd be nice if they did so I could have peace of mind. I've been out of work most of this year and its like they don't care as long as their getting paid. Just frustrated is all.
Well it's been almost 9 weeks in this hard collar and I'm still in pain. I yawn, cough, sneeze it hurts. It's painful to turn my head. I was told my fracture would be healed by now. I go back next week to see my NS and get stays done to see if I can get this hard collar off, but I don't think it's going to happen. I did some research on EDS recently because I heard that it can cause instability of the neck. I was never diagnosed with EDS but I'm wondering if I did have it and that's why I'm worse off after having decompression surgery. I'm thinking about being tested for EDS type 3. What do you think?
Google the Brighton test and Beighton test. That’s a basic testing criteria for diagnosis- test yourself. I had decompression 9 months ago and am in a collar for pain. The collar keeps the pain tolerably low, but if I forget it for a day I suffer for it. I’m seeing Henderson in MD to see if I have the instability issue. I am hypermobile and although my surgeon screened for it, I either slipped the cracks or he wasn’t eager to get to the bottom if it.
I’m sorry you are still suffering Dawn. You have really been through the ringer. If you are going to pursue the instability issue beware that it further narrows the neurosurgeon pool. Just like with Chiari, many of them are just not educated enough on the chiari/instability connection to diagnose or treat them.
How are you doing emotion-wise?
Jenn
Emotionally I'm good--most days. Occasionally I get sad thinking about everything I can't do...as simple as laying on my side, cuddling my husband and kids, or not being able to be the mom and wife they deserve. I can't do much. I constantly have a pull feeling from my neck to the middle of my spine. My migraines are frequent. It's a chore to hold my head up on my own. When I bend down or over my lower back hurts. The tension in my shoulders and neck can be unbearable at times. My jaw and face feel sore but I think it's from wearing this hard collar. If it wasn't for my faith in God I don't know what I would do. Even holding onto that faith is hard cause everything is working against me in my life. My husband and I are financially burdened, we don't know if I'll be able to work, our house and chicken coop almost burnt down this week. We don't have money for heat and its getting colder, and my husband is so stressed he's missing work from being sick. It's hard, but I continue to read scripture and pray about it. Emotionally I'm as stable as I can be. Thank you for giving me that information.
Dawn you are one strong lady! I hope hope hope you get some relief soon.
God bless and hugs, jenn
Update: I no longer need to wear my brace. Dr. Said my fracture healed well. He told me the pain I'm describing is normal and to just come back if my pain gets worse. I'm scheduled to go back to work in 6 weeks :) All good news :) I didn't ask about the EDS because I'm healed and that's all that matters. Thank you for your prayers and encouragement <3