ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: MNTim on March 07, 2011, 08:41:26 pm
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I was diagosed with a nearly 6 cm tumor in Aug. 2009. After two surgeries to reduce the tumor size (preserve facial nerve) and a final one to remove the tumor I have developed a leak from my left nostril. A sample was sent to the lab today to determine if it is CSF. I may be jumping the gun but I want to be prepared to deal with it if it is.
Can anyone adivise me on how quickly the situation should be addressed and procedures used? I seem to recall reading that sometimes the leak will disappear (false hope?)?
After my last surgery (Jan. 31) I developed a leak out of my suture and had to return to the hospital for a lumbar drain. I am really not looking forward to more procedures after two years of this.
Any assistance is appreciated.
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Hi, Tim - and welcome ~
I'm sorry to learn about your post-op CSF leak but, as you well know, this does occur in some AN surgical patients. If the sample comes back positive for CSF, I'm sure your doctor will advise you on your options. I suspect a drain would be used but that is pure speculation. Of course, the leak may stop of it's own accord, but I wouldn't assume that, although it does happen. I trust that other AN surgery patients who've developed late post-op CSF leaks will add to this thread with relevant advice that will be helpful to you.
Jim
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Hi Tim
Sorry to hear about your leak. I think there is no one way of dealing with a csf leak as it varies with countries and doctors. I think drains and shunts seem to be most common in the USA, I myself had a more radical procedure done (Subtotal Petrosectomy and Blind Sac Closure). I was told but my ENT that if you leak straight after surgery you have a better chance of the leak stopping by itself. My leak started 3 weeks after my surgery and I was told surgery was the only way to stop the leak. I had to wait another 5 weeks before I could have that done which was a very scary time as I had to be careful not to contract meningitis, so I put myself in a kind of isolation till surgery.
In general this can be very serious and you need to address this asap, the longer you leave it the worse it gets and can cause some terrible head pain.
Jacqui (NZ)
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I have been down that road as well. My advise is to wait for the labs' to come back first.
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Thanks for the feedback.
Labs came back positive for CSF. I meet with surgeons on Friday to discuss treatment. I will have a CT Scan in the a.m. to gauge if ventricles are draining. If all is normal with pressure they plan to open up the incision from previous surgery and close off eustacian tube. They will also insert a lumbar drain and monitor me for several days after the surgery.
Tim
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Good luck Tim, Ill share Little of my story with nasal csf, and what was thought to be csf from the incision site. I had a LP shunt placed for the csf leak, which has worked great at least thus far. The drainage from my incision turned out to be benign fluid. Apparently my body was tyring to to get rid of some excess bone wax from surgery. The wound had formed a fistula over the 4 some some years I was dealing with it. Long story short, I had sought care that was closer to home for two surgeries to correct it, when that failed, I went back to Barrows where I had my An and another tumor removed. They revised the incision, found the fistula, cut it out, removed all the bone wax, and packed fat into the site. I share this because my condition was very rare, and may offer some help, or at least something to ask your Doctors. Again, Best of Luck.
Mark
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I also wish you luck and hope surgery will fix your problem.
Kenneth
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Tim ~
I didn't experience a CSF leak so I don't have any advice to offer but I certainly hope (and will pray) that whatever surgery you have is successful in permanently ending your CSF leak.
Jim
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Tim,
I wish you the best of luck with your surgery. Hope all is successful!
Wendy
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G'Day Tim
I had 5 CSF leaks and the last operation to fix it was the one they seem to been going to give to you.
They ended up completely closing off the eustachian tube with tummy fat and putting in another lubar drain for 10 days (just to make sure). No leaks since thank goodness.
All the best of wishes and good luck.
Suu
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Thanks Suu,
I am sure that the two previous procedures have aggravated the problem. I began with a leak from my incision last month. They were able to control that with extra sutures and a lumbar drain. As my ENT said, "you are living proof that CSF can leak from anywhere." I think there was already a leak in my left nostril and closing off the leak at the incision increased the nostril leak. They are taking it one step at a time and I have told them not to rush treatments. Sitting at Mayo now waiting on a consult.
Tim
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How did the consult go, Tim?
It's funny how CSF can find a way out of the body but it's even more stunning how the doctors go about closing it off again and again.
I've got fingers and toes crossed that you have a permanent outcome to to this.
Warmest wishes,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
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CT scan did not show hydrocephulus so the aforementioned treatment is the plan tomorrow.
Funny thing about Mayo. You have to call an automated line between 8:15 and midnight the night before your surgery to get a time. I live 1.5 hours away so surgical time is pretty important. Minor details!
Will be monitored most of the week for pressure (lumbar drain) so I will have plenty of time to post.
Thanks for all of the input and support.
Tim
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Good luck Tim. Univ of Iowa calls you the afternoon before for the time of surgery. I've been thru the leak surgery and did fine but Iowa doesn't do the drain after. The whole affair is not what we wanted to go thru! I wish you well!
Cheryl R
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Had surgery yesterday and being monitored to determine if leak was stopped. Dr.s feel good about it.
Thanks for all of your thoughts and prayers.
Tim
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Tim .....
You have been in my prayers. Sure hope this is the end of your trials! Sounds encouraging that the docs feel good about it.
Continuing thoughts and prayers.
Clarice
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Thank you Clarice,
I am recovering at Mayo and am sitting in the visitor lounge as we speak. I have a lumbar drain so I am being monitored closely.
Anyone that had a nasal leak experience "phantom leaks"? I sometimes feel like fluid is running out of my nose but when I touch the area it is completely dry.
Tim
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Hi Tim.
Ahhhh - the good old lumbar drain. At least you are allowed to move around ;)
I know the feeling and also feel it sometimes at my incision site. Is it not weird???
Take care.
Kenneth
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Kenneth,
Thanks for reassuring me that I am not totally crazy.
Tim
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Hi Tim
I still get that feeling every now and then even though the tube is totally filled with fat and stitched. It used to be like a 'wet' feeling with me too. You'll know it if it starts because it literally runs like a faucet.
I have all crossed for you and hope like crazy that this has worked for you.
Cheers,
Suu
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Surgery ("repacked" eustasian tube) was Monday and have been "dry" to today (Friday). The lumbar drain was removed this morning. So far no leaks. I am hesitant to lower my head for fear of the dreaded "leak" but also realize if it happens it is better to deal with here.
The plan is to go home this afternoon.
Great care at Mayo! Very dedicated nurses.
Tim
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Hope everything works out great! Your not crazy about the leak feeling, I still check my pillow case and towell each morning, and after every shower.
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Hi Tim
Thank goodness you're calm and level-headed.
I was told not to sneeze or bend over for 6 weeks after my last surgery. If you have to sneeze you need to bring it through your throat. As crazy as that sounds it's pretty doable when you know what the alternative could mean.
I have all crossed for you mate. Keep on keeping on and we hope for some more good news soon.
Suu xxoo
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It has been 1 1/2 yrs since my last CSF leak repair and I stiill get nervous doing anything. The doctor said to gone on with life and I can do anything. He said it was finally fixed. But it is still in the back of my mind all the time. Good luck to you