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Avatar universal

The verdict is in....

Quick background for those who don't remember/follow me.  Decompression surgery with C1 laminectomy about 7 months ago.  No major complications until several months later I started having some drainage from the incision. A CT showed no leak, the surgeon stitched the area in his office. When that didn't take he did a minor surgery for wound revision.  Took stitches out 3 weeks later, incision started draining again after a few weeks.  Because my mom had just died, the surgeon said to make another appointment to see him because he didn't want to complicate my life further. He said he needed to "bandage" it, so I just assumed minor fixes were still appropriate.  No big deal.

Fast forward to my appointment today.  The last week the drainage has been bad; at times running down my neck. The incision itself doesn't look too bad, but he took one look and decided that the only option left was to open the entire area (before he just revisited the small area that was open) and redo the dura patch. He's tried so many other things and ruled out simple complications and none of them worked, so this is the last resort. And, he wants it done soon given that the infection risk is high with spinal fluid leaking out of my skull.

So..looks like I'm going back to surgery within the next few weeks.  He put me on 10 days clindamycin to prevent infection, and said he wants me in the OR before it runs out.

Very frustrated. I was so taken back by this news today that I didn't really ask too much about the surgery.  I was somewhat prepared for the first round because of all the others who had posted after similar procedures.  But, without the laminectomy, I don't know if my recovery will be any faster or easier, etc.
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1667208 tn?1333107849
So sorry for all that you are going through.  It really bites to keep having surgery!  My incision was not leaking but I had leaks from the dura and had four surgeries on my head to try and get things right!  It is horrible to have to do it again!!  I did have an LP shunt for a while and when they took that out my spinal fluid would not stop coming out my side.  They started with more stitches and then added glue and no matter what they did I had spinal fluid coming out my side and I had to go in for another surgery to fix that too!  Have you been diagnosed with EDS?  This seems to be my answer for why things had not healed as they should have!  What do you have for a patch? MY head did not stop leaking until they removed ALL of the synthetic patch and used my own tissue!  Good luck!  -Zygy
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620923 tn?1452915648
COMMUNITY LEADER

  zygy said much of what I planned to...find out what kind of patch they plan on using this time, request ur own tissue and if u do not know yet, find out if u have EDS as this can be a reason this is going on.....

I sometimes may sound like a broken record saying check for EDS but this is how it can have an effect on ur recovery....I can not stress enuff that ur body can reject foreign matter (patch) and cause excess CSF to build up and leak, and u can get infections as a result...if they continue to put a patch in of nething but ur own tissue u may continue to have these issues.

I am sending prayers ur Drs will harvest the tissue and that this will be the last time u have to go thru this.....do let us know what day when u find out....wishing u all the best <3
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5640779 tn?1375813366
So sorry. I can only imagine how you it's feel. I'm 4 weeks post op. Makes me think the extra pain of harvesting my own tissue may be worth it. I know it's frustrating but at least it's fixable. Good luck and may you be able to put this behind you soon :-) Lisa
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4816750 tn?1368804670
I am sorry that you are going through all this.  You are in my prayers with a swift kick to CM.
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Avatar universal
Thanks everyone for your support.  I promise I haven't forgotten to update! I would have gotten the surgery last week, but I'm struggling with insurance.  I turned 26 in May and filed to have my family insurance plan transitioned into an individual policy until I start my new job in August which will come with health insurance.  Seems simple enough, but now over a month later they still haven't processed the paperwork. VERY frustrating, and I can't get a surgery date until I have insurance.  

In the meantime, my head still leaks.  And, maybe I'm just hyperaware, but I'm starting to get pressure headaches in the C1 area when the leaking occurs.  I'm hoping it's not a worsening of the CSF leak, because I certainly can't afford out of pocket brain surgery.
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620923 tn?1452915648
COMMUNITY LEADER

  There should be a way to get the change pushed thru faster....since u have a medical need....there should not be a lapse once u fill out the forms and send in a payment u r covered .....

I pray the Ins issues get straightened out long b4 u get worse....
Helpful - 0
Avatar universal
Insurance has FINALLY been figured out.  I called the neurosurgeon today, and they moved some things around and I am having surgery next Wednesday, July 9th. At this point, I think the extent of the surgery won't be known until he gets in.  All he is saying is "open the whole thing up," and he's skeptical about the condition of the durapatch. Whether he plans to replace it or just try to close it I think is a decision he will make once he's in there.  

Getting to the point of being able to schedule surgery was such a process, and it's just now sinking in that I'm having surgery for the second time for this. Like I said before, it's hard to anticipate what I'm in for so it's almost worse than the first time around.  If anyone has any experience with having surgery just to revise the durapatch, I'd love to hear about it!
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620923 tn?1452915648
COMMUNITY LEADER

  Congratulations on finally getting it all sorted out.

A prayer thread will be posted for you....know I have you in my thoughts and will be sending you good vibes ~~~~
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