ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: MNTim on March 18, 2011, 05:52:39 pm

Title: CSF Leak Advice
Post by: MNTim on March 18, 2011, 05:52:39 pm
Was released from the hospital today following my second stay to stop CSF leakage.  I don't really want to return for further treatment so I am looking for advice from others who have experienced leaks on how I may avoid "encouraging" a leak i.e. lifting restrictions, etc.

Thank you to all of you for your past advice and prayers.

Tim
Title: Re: CSF Leak Advice
Post by: Suu on March 19, 2011, 01:04:54 am
Hi again Tim
The advice I was given was not to bend over for any reason and if I had to sneeze then to do it via my throat.  I know it's hard to explain but you'll know what I mean if you have to sneeze.
Keep your bowels soft and no straining. (I took 2 coloxyl nightly for 12 weeks and topped up on a mixture they gave me in hospital if I got constipated). The 'no straining' also means anything like moving furniture, using a screwdriver, or anything where you would usually close your mouth and 'push'.
No animals in the house and no-one with a cold near you either.
The doc said for 6 weeks but I still follow that advice and it's been 4 months since they blocked the tube completely (they had 4 goes at it so I'm petrified of it happening again).

If you get worried about it and you want a shoulder then I'm only a computer screen away. Email or PM me anytime.

Suu xxoo
Title: Re: CSF Leak Advice
Post by: kenneth_k on March 19, 2011, 01:45:51 am
Hi Tim.

Glad you're out of the hospital.

I'm still awaiting surgery, but I have allready asked my doctor, how long I should be carefull about straining. (just like suu wrote).

He said one month - I guess I will add another 2 weeks - better safe than sorry.

Kenneth
Title: Re: CSF Leak Advice
Post by: Suu on March 19, 2011, 04:09:46 am
Hi Kenneth
When are they going to be finally fixing you?
Regards,
Suu
Title: Re: CSF Leak Advice
Post by: MNTim on March 19, 2011, 05:43:25 am
Thanks for the info.  I like the example of "closing your mouth and push".  It is very descriptive and covers more than "don't lift more than 10 lbs.", etc. I was advised to not strain for 3 months. That seems pretty standard from what I was told after my previous surgeries. 

Kenneth,
It's great you are doing research prior to your procedure.  Keep using this great resource, I wish I had a year and a half ago.  I would have saved myself a lot of anxiety.

Best,
Tim
Title: Re: CSF Leak Advice
Post by: Suu on March 20, 2011, 11:18:28 pm
Hi Tim

How's it going today? No bending or pushing?

I still have fingers tightly crossed for you.

♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ * Suu  
Title: Re: CSF Leak Advice
Post by: hendi51 on March 21, 2011, 09:23:45 am
Lynn just had a translab craniotomy a week tomorrow and he was told three weeks. Maybe we need to extend that? He is having problems with his bowels even though he his taking a stool softener every night and terrible headaches. We are working on those.
Title: Re: CSF Leak Advice
Post by: MNTim on March 21, 2011, 11:01:38 am
Suu,
Thanks for following up.  Correct, no bending or pushing.  At Target this weekend I instructed the cashier to keep the bags light.  I forgot a bag and had a poor lady running next to my surgical side trying to get my attention.  I haven't figured out a good way to tell people I am deaf in my left ear.

Tim
Title: Re: CSF Leak Advice
Post by: Suu on March 21, 2011, 08:47:35 pm
Hi Tim
When you figure out how to let people know that you're deaf in your ear, please tell us all.
Short of wearing a t-shirt (which I have considered) I have no other way except to tell them after I realize that they've been trying to catch my attention.

Hubby still has a problem but is beginning to understand that it's his problem and not mine now.  I've got used to it, he hasn't LOL

Happy times are ahead - that's a statement and not a wish  ;D

Suu
Title: Re: CSF Leak Advice
Post by: vickee on March 28, 2011, 11:54:10 pm
I had CSF problems after my surgery.  After lumbar drains, CSF leak repair, and L-P shunt placement I still had swelling under my incision site.  I started doing acupuncture to help my healing process.  I swear the next dat after my first treatment the swelling went down.  Completely gone within a week.  No signs of leakage since.  I know it may be a coincidence or a combination of all treatments. It may be worth a try.  Good luck on your recovery. 
Title: Re: CSF Leak Advice
Post by: Suu on March 29, 2011, 03:54:30 am
Hi Vickee
That sounds like an idea I'd like to try. Thanks for the tips.
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ * Suu
Title: Re: CSF Leak Advice
Post by: tsl on March 29, 2011, 12:08:17 pm
Hi,
A friend of mine was on heavy-duty pain meds and ran into bowel problems.  He tried my things and finally tried Mirolax (over-the counter).  He swears by it and says that it saved his life!
Take care,
Theresa (tsl)