Just got home from the E.R.

Question

Mike's "swimmy headedness" got way worse this afternoon.  Talked to the NS office and they sent us to the ED to rule out CSF leak.  No leak - praise God for that!  But they did put him back on high dose steroids for inflammation in the brain.  Blows my mind that they can tell us he has inflammation in the brain causing these symptoms, but send us on our merry way....  I am one nervous wife for sure!

selmaS · Answer

Hi, yes it does say that but this is an older study..and I wonder how many that had complications may not have been tested for EDS b4 surgery as that could affect recovery...as they do these studies they do find these types of things out.....

  It is hard being part of a study u never know what they r going to do.

 We all hope that u will get the best care and that they r using the study to improve care for all of us : )

rmlyonsfamily · Answer

http://www.ncbi.nlm.nih.gov/pubmed/21806360

Selma - am I reading this right?  The bottom of this states "Nine patients were treated with the combination of Durepair and DuraSeal and this subgroup had a 56% complication rate."...  this would be Mike's group - right?  He had both the Durepair and either DuraSeal or Adherus (we don't know which was used - that's part of the clinical trial).  

Not sure I like a 56% complication rate.

selmaS · Answer

To me it sounds like it makes it's own adhesion when it is applied...not sure glue  in the adhesive sense was needed for this.It says it will adhere on contact to the dura only or it can be sutured....

 Having EDS, this would not have worked for me as it is collagen, but still a foreign matter being added...

   This is very interesting material....thanks for sharing : )

rmlyonsfamily · Answer

The study is the Adherus Adhesive Clinical Trial.  The way I understand it he not only sutured the durepair patch on, but used an adhesive as well.   Is that what it sounds like to you?

I read a little about the Durepair - Here's a good site with info on it.  

http://www.medtronic.com/for-healthcare-professionals/products-therapies/neurological/cranial-repair-products/durepair-dura-regeneration-matrix/index.htm

selmaS · Answer

That is very interesting...most do not remove all of C1...and that is not uncommon, but the durepair that is intriguing....

 I had a glue used for my closure along with sterri strips, I did not have staples or stitches....was the adhesive just for the closure of the dura? And is that what the study is looking at?

rmlyonsfamily · Answer

Selma - Dr. C also answered a few questions for us I thought I'd pass on - 

First - he said he didn't do a complete C1 laminectomy - he only removed the posterior arch, not the whole vertebrae.  

He sutured the dura to a dural substitute called "durepair" and then used an adhesive on top of that (the adhesive was part of the clinical study they put Mike in).  

Just thought it was interesting...

rmlyonsfamily · Answer

Mike's Neurosurgeon just emailed us to check on him!  Yep...  he's pretty awesome in our book!

selmaS · Answer

If there is nething I can say regarding this, is it can be a slow road to recovery...even when the patient begins to feel good....they should continue to rest and take it easy....slow and steady wins...so no rushing : )

rmlyonsfamily · Answer

No - they didn't do a LP or check for meningitis.  They did do a bunch of labs and they all came back ok.  

Today he looks a little better, not quite so hazy.

I guess we got to confident b/c he's been doing so well!  Definitely smacked reality back into me that my husband had brain surgery a week ago!

selmaS · Answer

Hi...glad they ruled out the leak...but so sorry he is still feeling so poorly.

 As zygy mentioned, if he continues to feel bad  ask about a LP for testing of  meningitis .

  Sending <3 ((hugs)) and prayers to u all.

Sexybare · Answer

hang in there mike and family, it will get better. ill be praying for you all, hugs Dana

zygy2 · Answer

Are they checking for meningitis?  Any fever or just headaches?  There is aseptic meningitis which is not anywhere near as terrible as bacterial but it still makes you feel pretty bad.  Steroids would make that feel better.  They do the spinal tap to check for different types of meningitis.  I hope things get better soon!  -zygy