Arnold-Chiari Malformation Support Group

ks, I am SOOO sorry to hear that you are still suffering! You have been through so much. And you have clearly described the frustration and disappointment you have gone through, as well. Try not to be depressed! Yes, it's okay and expected to be mad or sad...but I pray you don't become truly depressed because that just makes this all the more hard on you!

I just did some quick online research. I learn from posts like yours, and did not think much about glue being used in the PFD. Well, it seems that whenever there is a craniotomy, they do use a glue to try to make a water tight seal.

Fibrin glue, which was included animal and or human ingredients, was used extensively, but it was less than desirable in its efficacy of preventing CSF leaks.

I read on this site (which is the manufacturer's site)

http://www.confluentsurgical.com/p...

that "•DuraSeal is the ONLY dural sealant approved for cranial use in the U.S."

DuraSeal is blue, the site reads. And in the doctor testimonials, it says the benefit of DuraSeal is that, because it is blue, it can be distinguished from CSF.

Is what is leaking from your incision blue?

So, it seems that your NSG has to have used DuraSeal in your surgery since it is the only one approved in the US to use in cranial surgeries.

If he did use that, then it seems that the glue leaking should be blue.

It seems odd that there can be so much excess glue in your head that it would be leaking after all these many days since your last surgery! Doesn't it? Also, these glues (from what I've read online) seem to "set up" as soon as they are applied, so I am not getting why it would still be running this long after your surgery?

Here is a quote from Dr. John Tew on the DuraSeal site:
"DuraSeal sets up fast and doesn’t run"

So, if Duraseal doesn't run...and it's the only one approved in the US for cranial use...what is going on? Why do you still have stuff coming out of your incision? Is it blue, or is it clear and might still be CSF? I'm so sorry to raise these questions...I really do not know anything about these glues. But I've also never heard anyone online on the message boards talk about being told they had "glue" leaking from their incisions, and esp for this long post - op!

here4ya

Sorry to stir things up, I don't mean to.

Hi and sorry to hear you having so much trouble. My surgeon also used glue over the sutures on the duraplasty. I have been fortunate without leakage, but it doesn't sound right that the glue should leak. As for the dressing changes, paper tape doesn't pull the hair so badly. Good Luck to you.

Hi, Thank you for the advise. I can't use paper tape because it will not stick to my hair. I have an appointment tomorrow afternoon with the NS. I have a feeling I will be admitted again and given antibiotics. I have completely had it with all of this. I will let everyone know what happens.

We WILL be praying for you!!! Let us know when you can what happens. I'm so sorry!

here4ya

Hi all, Well the dr did a culture of the discharge from my head, and started me on antibiotics. I was surprised he did not admit me but relieved. I didn't want to go back in the hospital. I hope everyone is doing well.

I'm SO glad you don't have to go back to hosp!! Yay!! I guess it WAS CSF and not glue...so sorry 'bout that.

I pray this round of abx will be "what the doctor ordered," and you can get recovered and on with the benefits of the surgery!

hugs
here4ya

Well actually it is glue, and i got an infection probably from the stables. The NS explained that when he put the glue in it is blue then turns clear. Well I have clear gelatin like clumps coming out which he says is excess and is normally absorbed in the body. Well because of the infection and irritation he was coming out with the pus. One of the staples got infected so it caused a hole and with the irritation the whole got bigger and more irritated. Well he glued the hole shut to allow it to heal did a culture and put me on antibiotics. Now I wait for the culture to come back to make sure I am on the right antibiotics. Physically I feel like my body is fighting the infection just yucky and frustrated with NS for not testing this earlier other than that I just want to feel better.

I'm so glad they are testing. They need to test everything that comes out of that incision. If this proceeds further, well, just make sure they do!! I can understand your frustration for sure. You poor girl! May God bless you in every way, you need it.

hugs
here4ya

Hello, I spoke with the staff at my NS office today and found that I have an staph infection in my incision. He said the antibiotics would help the infection. I have to admit I don't feel as sick ( toxic) as I was feeling being on the medicine since tues but I still have quite a bit of drainage and we are doing dressing changes 2-3 times per day which is also better then before. It's not that I dont trust my NS but I want advice to see if I should pursue a 2nd opinion or keep on the road I am on. I am not running a fever and the chills have subsided. And there is no CSF fluid drainage so that seems to have been fixed since my surgery on 10-9 to fix the large leak. Keep the prayers coming. Thank you Kristi

ks and everyone, I was gone for a week, went to see my son. I am back now, obviously. Been thinking of you all.

Ks, I don't know what to say. I don't understand what is leaking!!! Is it clear fluid? If so, are they still saying it is glue? The glue gels, according to the websites, that is how it works. So, I just don't understand.

Given what you have written, I would get a 2nd opinion! Staph infection? That can really set you back, I've seen others really have a hard time dealing with this. I'm so sorry this has happened. I'm praying for you bigtime!

I think after all this time of being told it is glue, I'd go get another opx. It sounds like CSF...I pray you do not have meningitis. Glad you are doing so many dressing changes...but if there is so much leaking that you need that many changes, it concerns me. It should concern everyone here, hearing that. What do others think?

This is just a horrible situation, I'm shaking my head here...

let us know how you are doing since you posted!!

God be with you, KS. You've been thru so much. Do you still have headaches?

here4ya