has anyone had a leak repair?

[girlinxile]

So my decompression surgery was on Oct. 9th, by the beginning of November I started to notice a bulge at the back of my neck. I had a leak but the surgeon believed it was likely to resolve on its own. It still hasn't and I am still having a lot of symptoms so went for a CT last week and went back to the doctor yesterday. She said at this point I could try the medicationbut that the medication is awful and 3 weeks from now I could still have the same bulge. My insurance ends at the end of this month so it would be more of a for sure fix faster (which with no income right now is what I need) to just get the surgery done. So as of right now. So on the 27th for something along the lines of subiccipital pseudomeningiocele repair and possible lumbar drain.she was running late (1.5 hours) and she left to try to make sure she could get me in before the end of the year...but she never came back, her nurse did but only with the consent form. What she did tell me was that she was going to look in and see if she could find the leak, reinforce the edges either way, and repair it. If she doesn't see the leak she will place a lumber drain in and I will have to lay flat in the hospital for 5 days. The point of that is to lower the circulating CSF low enough that the patch has less pressure and can remain "dry" for 5 days and potentially heal itself. I just called to ask them the actual name of the surgery... probably something I should know.

So I plan on talking to at least her nurse before that with questions but wondered if anyone on here had any experience with either the surgery or the 5 day drain. How long was your recovery, how was it in general, did it work? This is so specialized and is only used as a fix that I haven't been able to find any info on line so any information would be greatly appreciated :)

[The_beat_goes_on]

Good luck! I hope they're able to help you.  Let us know how it goes!

[girlinxile]

Well.. I go in at 730 for a repair. She said if she can find it she will fix it, if not then a lumbar drain flat on my back for 5 days. My husband plans on staying around the clock except for the few hours they kick him out for report/shift change. He is on it, especially when he knows what to look for. So any help on what to look for would be great with this drain malfunction you mentioned. Thank you for your input!

[soccero]

i  had a csf leak after one of my surgeries and after the waiting game to see if it would heal my dr went back in to try and find the leak and he found that my patch in my dura was completely frayed so he had to totally redo that. i felt much better after it was fixed let me no if you have any more questions!
molly

[Ginaginapilotina]

I had a csf leak 2 -3 weeks after surgery. It was frustrating because the surgeon didn't want to admit me. After being unable to pee from the severe compression in my neck from the buildup, I went to the ER again. I had a foley catheter (which I was actually anxious to have put in), and a lumbar drain put in. The lumbar drain for a week took care of everything. Sounds like my leak may have been bigger too? Only thing is, watch out for the safety of the lumbar drain! Long story! If you have any further questions - just ask, I'm also a Neuro background bachelors prepared RN. Best of luck!

[selmaS]

  Hi...so sorry u r still having these issues....did they try a blood patch?

Talk with zygy2 or Molly/soccero.....both had very similar issues.....

I had to lay flat with a CSF leak....no fun I can tell u...but mine was not related to my decompression, mine was after I had my DD and a student nurse pulled me up while I was sleeping in recovery, she wanted me to use a bed pan...I told her I was to remain flat so I didn't get a leak...I laid back down and he pulled me up a 2nd time this time I was yelling and a diff nurse came over....it was too late at that point....ugh...

For me laying flat for 5 days did the trick...u also need to keep hydrated.

Good luck and talk to one of the girls as they can offer more insight ,