CSF leakage surgery

[angie343]

Hello friends,
Has anyone ever experienced a problem of not being able to urinate at all after a folly cathiter removal post surgery?

[ThePeachy1]

Selma has way more knowledge with all of this than me, and you have some of the best specialist.  I will be thinking of your dd and your family and please know you guys are not alone. hang in there and keep us posted.

[selmaS]

I know u r concerned, and I know Dr B has mentioned both surgeries for me as well.I am getting the decompression first bcuz they feel it could cause more issues bcuz of how crowded my chiari is.....ur DD did not have the time for them to choose one...

I pray the leak can be stopped via a blood patch.

Keep us posted
"selma"

[angie343]

Hey Peachy
She still having problems not urinating and she did not urine on the bed. I'm sorry if I posted that. They are going to try again to remove the fc today and see if she will go. And as for the CSF leak, that has me worried to because that was the reason for the second surgery. Dr B says the reason they did not leave in a drainage this time was because they were able to dry it all out in there. The doc has put some extra stitches on the incision and they will monitor it but if it contiues to leak they will have to go back in her back. This is so nerve racking for me and fustrating because if that turns out to be the case , it makes it her third back surgery in less than two months. The first was tethered cord 3/25, second CSF leakage 4/15 and now possibliy another CSF leak. And on top they want to do the decompression surgery. Which I am seriously thinking of holding off until my daughter recovers from the first surgeries. This definetly puts doubt in my mind. I know that Dr B from TCI is a good NS but at this point we are scared. My daughter is 20 yr old. God Bless

[ThePeachy1]

um angie, is she still on an iv?  how much aprox is she taking in in fluid oz per 24 hr period orally?  sounds like theres is way more important things going on here than urination without the fc. so let them leave in the fc and go with that while they focus on the other things. Am I reading above that you are saying she is leaking cf thru her incision site?  and leaking possibly urine in the bed, which indeed does mean she is able to urinate without the fc, I can not help but think that if they at all thought of this as a factor that they would be monitoring her INO.  But the leaking CSF worries me much more, especially if thats what the surgery was for and if she is leaking thru the incision site not a drain site. If you dont mind how old is your DD, I am sending my best for you all and you are in my thoughts.  Best wishes I know you are in good hands.

[angie343]

Hello ThePeachy1, thank you so much for your support. The doc seems to think it is related to her CM not being able to pee. I can't help but think it maybe due to all the hard meds she is on. The doc are worried of an infection if they keep taking in & out. They are not monitoring her input & output. She is on a reguler diet.  Her incision site is also having some drainage problems too, I know it is normal for this to happen but she is leaking a lot. So the doc thinks it maybe some CSF leakage again. The nurse have to change her sheets often. The doc covered it up again to monitor the leakage and see where it maybe coming from. If it is they may have to go back in. I do not know how much more back surgeries she can take and not to mention she may or will need the decompression. I am trying to hang in there for her and be strong. I know god hears our prayers, I have to keep the faith. Thank you again for everyone support. Everyone is difinetly in our prayers, I know my daughter is not alone going thru this condition. God Bless.  

[ThePeachy1]

angie my hopes and prayers are with you guys on the recovery.as far as issues with the foley,  I have had differant surgeries before that involved folies. during those times I encountered people that had difficulties with urination afterwards, I personally never experienced it. with that being said it is so hard to tell how much of it is mechanical ( foley) related, and how much of it cm related, not to mention that any intrusion such as a fc can highly increase the chances of a UTI which can decrease urniation, I am sure the med staff have her on anti biotics to handle this though right?  are the monitoring her INO, are her kidneys functioning when the fc is in place and it is just not that she feels the need for a 8 hour period when it is out? I am not understanding that? unless they are worrying about her backing up or something. I am sure they are more on top of it than I could ever be since they are medical professionals, I know after 1 of my surgeries, I didn't go for several hours but no one worried about it,  continually removing and replacing seems like it would cause a lot of irriatation to a seriously sensitive area. I will be thinking of you and please keep us updated. My best to you guys

[angie343]

No, she had hers done at a hospital in east meadow bc that is where her first TC surgery was done by Dr. B, ( he is great) so far no complaints. However, when it is time for her CM surgery she will have to go to TCI. She did ask them if the meds could be causing her symtoms or some of them but they said they doubt it. I have read up on all of them and they all list some of her side affects. It is hard to tell them apart from the CM symtoms.  It is her inability to balance herself and lapse of memory, headaches, slow speech, sensitivity to light, and can't stand up on her own at all is what is worrying me, also the not being able to pee too that has us so worried.
Lots of luck with your surgery and I will pray for you. God bless  

[selmaS]

Hi Angie...yes...I am going this Thursday for the decompression.

Did ur DD have hers done at TCI?? That is where I will be....it is becomeing more real each day closer I get......

U could be right...she has been in the hospital for how long now...3 weeks??....I am sure the meds r playing a part in this.

I have been getting some new symptoms that only goes to show I made the right choice.

"selma"

[angie343]

Hey SelmaS
There's no pain involved. The docs keep taking out and putting it back in. They are only allowed to leave it out for 8-10 hours. She has a small tube going into the vigina area and the bag attached at the end. This is all so fustrating, before the surgeries she was urinating on herself and now she isn't at all. I think it maybe all the meds she is on. I keep praying for her health. I do not like seeing her suffering with the pain and CM symtoms. God bless.
SelmaS I wrote to u on another discussion about Dawn surgery. How r u doing? Have u seen your docs?

[selmaS]

Hi Angie-

I am not sure about a folly cathiter, but when I had urodynamic testing and a cathiter was used I did have dificulties being able to go....I did ask for an antibiotic to make sure I did not get an infection.

Again, I am not sure of what a folly type is or what kind I had for the testing.....is there pain involved?

Or is it just being able to get a stream started?

"selma"