Chiari and Instability

[Amy0826]

Recently I had a chiari decompression (about 13 weeks ago).  I have swelling in the back of my head/neck, increased pain and decreased ROM.  MRI and flex/ext x-rays were done yesterday.  I believe they are looking for instability (CCI).  What exactly do they look at in the films that determine instability?  Is it normal to feel worse now than I felt 6-10 weeks out of surgery?

[Amy0826]

bovine pericardium

[selmaS]

  This indicates a CSF leak....it is a collection of CSF, blood and other fluids and can explain how u have been feeling....a leak can be caused by doing too much too soon, or the patch failed, or a stitch failed and it could be a very minute leak.

It may have sealed already if it is not growing...now to see if ur Dr wants to wait to see if the fluids are absorbed or if they will attempt to drain it......

May I ask what type of patch was used?

[Amy0826]

So I just got the MRI report and I'm very unsure what all this means:  "There is a meningocele at the level of the suboccipital craniectomy (w/measurements). There is also a larger (w/measurements) postoperative fluid collection which probably contains old blood products or proteniaceous fluid b/c its T1 signal intensity is higher than that of CSF on the T-1 weighted images. This collection extends from the occiput to the C2 spinous process, extending anteriorly to the right paraspinal soft tissues. There is no mass effect."  
Any thoughts?

[Amy0826]

Started back to work (teaching college classes) 6 weeks post-op.  Probably picking up the 2 year old around the same time, but trying still to limit this as much as possible.  Thanks for all your helpful info!  Looking forward to having my reports in hand.  From my observation of the MRI, it looks like an accumulation of fluid at the base of my skull/neck area b/c it's very illuminated.

[selmaS]

  May I ask when u started back to work?..lifting ur child?....these could be why u r also not feeling well u may be doing too much too soon.

I will send u a friend request so u can see my profile page pics and my journals of my surgery...u will see a chart in the pics for exercises to do post op...read the info under the chart as not all on the chart were for those that had decompression.

Sounds like u need help to get things done....

[Amy0826]

I was never told to do exercises, nor ever sent to PT.  However, I continue to turn and stretch my neck.  I think I am frustrated at the fact that there was no swelling 2 weeks ago and 4 weeks ago my pain was significantly better than now.  I've been off pain meds for 8+ weeks now, but started to take muscle relaxers again recently b/c of the worsening pain.  Any suggestions on how to get rest?  I am quite busy running around with a 2 year old and I teach 3-4 college classes per term.  And of course I don't need to mention cleaning and laundry and other house stuff...

[selmaS]

  Some of the cracks u hear/feel can be muscles getting tight....make sure u r moving ur neck with the appropriate exercises....it not only will keep the muscles from getting tight, but help prevent scar tissue from forming.

I also found they also help in holding my neck in place ...having CCI can cause may issues, but getting the neck muscles stronger is a great place to start.

It is typical for pain to return as we heal...it is "normal" but should not be new, or feel worse then prior to surgery.....

Sounds like u have EDS issues as well....and can cause u to heal slower then most, so rest, rest and then rest some more.....ur body was thru a major trauma....surgery is trauma to the body, so be patient  <3

[Amy0826]

Thanks!  Looking for all the support I can get right now.  I saw a Rheumatologist before surgery who ran calogen genetic testing which found a mutation, so he felt that EDS was the best diagnosis based on that and some clinical factors he found.  My middle son was clinically diagnosed with EDS as well.
At 4 weeks post-op I was having a lot of cracking in my head/neck and some sent tingling/numbness down my arm other times I got an intense h/a.  Flex/ext x-rays were done then and they said it must be just my healing b/c they didn't "see" any instability at that time.

[selmaS]

  Hi and welcome to the Chiari forum.,

Many times at 3 months post op some symptoms begin to return, this can be part of the healing process and u r not longer under the influence of ne meds at this time....

If ur Drs suspect CCI have they ruled out Ehlers-Danlos b4 ur surgery?

If u have EDS and CCI that could explain how u r feeling....

Not sure I know just what they look for in the flexion and extension xrays concerning CCI all I know is I do have it and that doing the neck exercises has allowed me to put off a fusion....