Round Two for Blood Patch

[adventurer53]

Hi to Whoever is watching this site. My spinal fluid leak is back!!! I had a week of relief from this pain that drains the life out of you. Then it started leaking again. I was still taking it easy and not bending or lifting things. I'm scheduled for another blood patch on Dec. 24th at Mayo in Rochester MN. It's about a six hour drive for us. Would appreciate your prayers. This is going on three months of this leak. On the brighter side, my view out my window is a total winter wonderland. the trees are laden with snow and the bare branches are covered with snow and frost. These are the little joy pops that God sends my way to help with these diseases. Merry Christmas to all of you. Thanks for your support!! It makes a difference!

[selmaS]

  Hi, Merry Christmas...sounds like u will have a White Christmas....how beautiful...I hope u get some pics to share with us....


SO sorry to hear u still have a CSF leak...or that it ruptured again....

Do u know what type of patch that was used? and if u might have EDS? I know I ask these questions all the time, but I am seeing a pattern forming....and feel it can be the patch along with a Dx of EDS.

  I pray this next blood patch does the trick. ((hugs))

[linnielou232]

So sorry to hear about the leak.  I had 2 of them also and it does drain everything away from you.  I am hoping and praying that this patch will work for you.  What a wonderful gift it would be.  My NS ended up putting me in the hospital for 10 days with a drain which sadly didn't work and ended up having surgery.  I will be saying prayers for you on Christmas eve and hope this patch will work for you.  Happy to hear you have a beautiful site to look at this Holiday.  Our snow here in MI is on it's way and we will have snow tomorrow.  Bless you this Christmas.
Linda :)

[goldenclover]

Hi.  I don't know if I'm posting properly, but I'm wondering about the leaks.  Your description of draining the life out of you.  I can definitely relate to that feeling.  But would a CFS leak always lead to that awful headache?  Or can you have the "life draining" feeling without that terrible headache?

I needed a blood patch several years ago following an LP.  Recently had chiari decompression and more recently tethered cord release.  

I get so fatigued, but I don't have the low CFS headache that caused me to have the blood patch.  

How are small, slow leaks diagnosed?  

Thanks for any insight.

[selmaS]

  HI and welcome to the Chiari forum.

A smaller slower leak is more difficult to dx as  the person would slowly  adapt just as many of us have done with the Chiari SX....

A Slow leak may not be detected until it grows....mayb from a sneeze or cough....just as with Chiari SX being triggered by these a leak can also be affected by these as well. Lifting  , bending etc...can also affect the leak.

Some smaller leaks will mend themselves, with plenty of rest and drinking fluids can lead to healing....when they do not heal, and u know they r there that is when the blood patch is utilized....and I am sure it is the SX that help determine that it is a leak....then the testing.

[adventurer53]

Merry Christmas! I always enjoy your input. I looked again at the symptoms of EDS and I don't think I have it, but will keep it on the back burner. I think I have the problems in the spinal cord area more because of the multiple surgeries and how jeopardized the skin and tissue around the dura is. They think that the scar tissue tears away and creates the hole. You also asked what kind of blood patch. They use my blood. I've also had the fibrin glue in the past, but to my knowledge he is going to use my blood again on Monday. What other kinds are there?
     Do they hit a lot of your nerves as they go in? They usually hit a few bad ones that give me some quick zingers and/or jump my leg up. Not looking forward to it, but the pain from that is quickly over and I'm hopeful to get relief.
     Hope you can enjoy the Holidays with family and friends.

[selmaS]

  Hi...no I meant what type dura patch...and if u had EDS it could explain why it tears away...this is y I feel this may be an issue....those with EDS can have fragile skin and can rip, tear and for this reason they do not use staples on the incision or stitched for that matter as they can tear right thru them, instead they use glue and sterri strips.....

Also with EDS the more surgeries the more scar tissue issues u may have...I really think this should be looked at sooner then later...and let me tell u I was the same as u when I read about EDS...that is not me I said...boy was I wrong.....

Thank u and I pray u have a wonderful Christmas as well : )

[goldenclover]

Adventurer,
I hope that the blood patch does the trick and that you feel better right away.