dura patch

[beentheredonethat2x]

I'm not sure what the material was that they used for my daughter's dura patch, but I have gotten lots of great responses to my previous question regarding CSF leaks and dura patch rejections. Her NS didn't even want to see her, but finally agreed after the neurologist called him up personally. So, her pain is intense and the NS hasn't offered anything for pain. He just prescribed a steroid, said the leak would eventually close itself off, and waited 6 days after her tests to have his NURSE call us. He didn't even call himself. Sad! She is 7 days into the 9 day course of steroids with no relief. Thanks to one of the posts recommending a surgeon at the U of Minnesota, my daughter will see a new NS next week. In the meantime, she is in bed. We use heating pads, ice packs, and the occasional Tylenol III left over from her surgery in August. Every day that passes that my daughter misses school and is still in pain is another day that I feel like a failure as a mother. Thank you so much to everyone who gives us advice, shares a story of your own, or simply sends words of encouragement. That is what's helping me get through each day

[ChiariWolf]

:-) Yes, doctors have a way of making us feel as though we're doing something wrong. Hey it takes the pressure off of them right. And now you as the mother see your child hurting... of course you feel that way. But just remember, it's not true. You are successful because you truely do care about your child.

Here is a site that I found last week. It discusses csf leak and what to do. Perhaps it will help in your fight. Just remember, in the long run a doctor is just your paid contractor. NOTHING more, just as with any other contractor you are responsible to see their work and determine if they are able to help in your situation or not.

http://wiki.noblood.org/index.php?title=Epidural_Blood_Patch

For what it's worth my heart goes out to you. I can not even imagine taking care of my own flesh and blood with this type of ailment. It would most definately be much harder to care for my child that it is to deal with it in person. Please, give yourself credit for the wonderful person that you are. Then go give your daughter a good heart felt hug. I think it safe to say we all hope your new NS has eyes open for this visit. Remembe, 'real' parents love their children. They try to prevent any harm from coming to them, but we just can't do that we have to continue doing the best we can to help them through each of lifes imperfections.

Wolf

[selmaS]

Ditto what Elizabeth said...I know u r frustrated by a Dr that is not doing well for his title, but u r deff being the best advocate and mom to ur DD that u can be......aside from taking the pain for her which I am sure if it was possible u would.

I pray this other dr is able to help ur DD with her leak issues....and she is seen soon.

Keep us posted
Godspeed
"selma"

[n40066]

my friend, not knowing you personally, i'm sure you may be many different things and there are thousands of adjectives that could be used to describe your talents as a parent...however, a failure is certainly not one of them!  you have done and are doing everything in your power to help your daughter and are her greatest advocate in her quest for relief!!!  were you sitting on your butt, watching your child cry out in pain and doing nothing but channel surfing with the remote, THEN i would consider you both a failure as a parent AND a human being!!
God gives us tools to help ourselves...he doesn't do the job for us.  he gave you this forum as a tool.  a tool you have used to take matters into your own hands and seek out additional roads and methods to get your child the help she needs.  and in the process, you have become part of an aliance that will stand firm and true behind you in support of your decisions thru out this process of discovery and awakening!!!  even though the majority of us are united only in writen words and spirit, our voices will be heard and the medical community will be forced to eventually take notice of our suffering!  you and your daughter are a huge part of that process!!!
a failure as a mother?  no way.  a pioneer in the fight for your childs right to prompt and cohesive medical care in regards to chiari malformation?  absolutely!!!

wow!  don't know where all that came from, but do you get my drift?  you're not a failure because you are doing eveything in your power to help your baby.  i know how difficult it is to watch your child suffer in pain and not be able to fix it.  my son suffers terribly with rapid cycling bipolar and i hate that i can not do anything to fix the torment he suffers on a daily basis.  but rest assured that you are a good mother and God and the right dr. can heal all wounds!  good luck with the new ns and keep us posted!