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4760166 tn?1398357313

chiari symptoms back after second decompression?

It's been a long time since I've posted anything here -- I've been trying to wait it out ... hoping that things would get back to "normal" but it just isn't happening.  Some (Hopefully condensed) background -

2013 - first chiari decompression and c1 laminectomy. My own dura was used as the patch.

complications ... sterile meningitis that caused hydrocephalus.  Enter the shunt merry-go-round.

2015 - second, more aggressive decompression because of a large cervical syrinx and syringobulbia, which is I guess a mini syrinx / spot on my brain stem from compression.  Bovine patch was used and my cerebral  tonsils were completely removed.

since all my symptoms have returned.  Constant headache that is worse with straining / sneezing / laughing / most activity.  Intense nausea.  Heartbeat in my ears. Numbness in face /arms /hands.  Dizziness and balance issues that are almost funny, until I need to go up or down stairs, or shower!

I uploaded a few images from the last mri I had (12-7-17) ... It still looks like there is a herniation to me?  but since I have no cerebral tonsils, is it my cerebellum?  I have a broken shunt right now, it would not adjust either way ... they clog like it's their job.  So the day after Christmas I have an LP and then the 29th another MRI.  This last one was supposed to be with contrast and they tried two days in a row, but my veins all collapsed, even with ultrasound guidance going 3cm deep... so I'll be getting a picc line that morning.

Since most of us have a pretty good idea of what a normal MRI is and what isn't ... what do you guys think of mine?  they're the last three images in my album.  I don't know what to think.

Anyway, I hope you all are able to enjoy the holidays!

1 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi...welcome back but so sorry to hear about all that has been going on for you......may I ask, do you also have Ehlers-Danlos? I wonder why a different type of patch was used for the second surgery?....I will take a look at your pics not sure I will be of any help.....

Hope you can have a Merry Christmas too : )
2 Comments
I have no idea why he used  a different patch ... I've always had issues with foreign things in my body and he knew that since the get go.  The second time around he used bovine pericardium and I have been just about back to pre-decompression symptoms since.

Ive had so many shunts in this time frame ... VP shunts, LP shunts, and now an LPL (it ends in my pleural cavity) they keep clogging because of inflammation ... protein in my csf.  I think Ive gotten a new valve every 4-6 months.  We think I might have an allergy to the valves.  This last one medtronic made for me without silicone oil (which causes allergies in some people?) ... but I've been trying to get an MRI with contrast for about a year now.  Two days in a row they couldn't get IV access, even with ultrasound, so they were basically pointless MRIs.  He said if there is inflammation around the patch, contrast will light it up .... which is why I'm willing to go through a PICC line for the contrast at the end of the month.  

As things stand there is no endgame for me with these shunts.  They just keep clogging ... I would kind of like to find out it's the patch causing inflammation in my CSF and maybe a shunt would last me much longer.  The one I have right now is clogged so I'm in limbo waiting for these tests before I jump into another new valve.

My Christmas will be all right, I kinda wish I could hibernate. :)  I hope  you have a happy Christmas, too!
Maybe the patch is also the reason you need the shunt?  But if he knew you had issues with foreign matter not sure why he didn't use your own tissue for a patch.....

I pray you get this sorted out with the MRI at the end of the month....keep me posted and Good Luck,
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