Leaky head

[Tamara]

Hi all,
  My eye issues seem better today - with better vision.  I saw the opthamologist today, and hope to get the temporary eye weights early next week.  Better vision makes me feel more normal.  Yay.
  But, I now have a leaky head.  We've wrapped it in an ace bandage, but it was leaking pretty much earlier.  Just clear, nothing gross.  I've got my postop appt tomorrow at 9.  Any other advice?  I called this afternoon, and the dr. didn't seem to think it was too big a deal.  Pooter, are you still dealing with this?  Actually, now that my vision is better, I am OK with coping with this.  Amazing what a difference that makes.

Tam

[er]

Hello Tamara,

You are going to enjoy your eye weight. It really makes a difference in opening and closing your eye.
Sorry about the leaky head  hope the doctors appointment figures out what it is. 
I sure hope you are doing well?
eve

[leapyrtwins]

Hi, Tamara -

I'm glad your eye issues are getting better and I'm sorry about the leaky head.

I remember my doc and I talked about leaks prior to my surgery.  I had a little bit of a concern because I was going out of town a few months post op and I had heard that leaks can occur at any time.  I assumed I should head to the nearest ER if a leak should happen, but my doc said no, I should just call him.  I thought that was a little strange because he would be in Illinois and I would be in Colorado, but he insisted that a leak wasn't a huge emergency like I thought it was.

Moral of my story, if you called the doctor this afternoon and he didn't think it was a big deal that needed immediate attention and could wait until tomorrow, I wouldn't spend time worrying about it.  Obviously if something changes drastically between now and tomorrow's appointment, call him again.

Jan

[4cm in Pacific Northwest]

I just knew the eye weight would help. YEAH!  Did you get the temporary stick-on kind?

Actually CSF leaks can be of a concern however since you are seeing the doctor right away I will refrain from  saying anything - as seeing a physician is the thing you should do. Much depends on how and where the leaks are. Mine came through the nostril on the AN side and did heal with time -without a shunt being placed. Nevertheless it was scary as I was out-of-state from my neurotologist -once I was home and this was happening.

You sound like you are in good spirits. 

I have heard from both patients and credible doctors that it is worth taking vitamin B 12 while you are dealing with Bell’s Palsy – to assist with the recovery.
http://en.wikipedia.org/wiki/Vitamin_B12

I was not rigorous about taking this. Whether this contributed to my synkinesis is not known- in hindsight I wish I had taken it regularly during the recovery stage… and now recommend that others do.

Keep us posted.

Daisy Head Maize

[Pooter]

Glad the opthamolgist gave you the temporary weight.  That's great!

I still am dealing with swelling near the "hole".  My doc put me on a diruretic.  Among other things, it slows the production of CSF.  I think the theory is that the CSF production is slowed, swelling goes down allowing everything to heal.  That's the theory anyhow.  I don't have it leaking anywhere else (nose, ear, etc..) which my doc says is a good thing.  I now get headaches especially when I get up from a laying position.  Today, the swelling is up, but I forgot to take the med yesterday morning and didn't take it until late, so I skipped last night.  I can't help but think the swelling being up contributed to the massive headhache this morning.  My doc also had me wrap it up with an ace bandage.  My swelling goes up with it off and I feel more comfy with it on anyhow (for now).  I do get "leakage" (not much) especially at night when sleeping.  I sent email about that and the headaches to my doc but no response.  I can't help but think it's just the incision where the swelling is finally being able to heal and therefore "casting off" itself at night.  But, as I said, my doc hasn't responded to my email about it yet.  That's my gut.

Let me know what you find out also.  We can compare notes.  I hope it all gets better soon; for both of us.

Brian

[Debbi]

Keeping my fingers crossed for both of you, Tammy and Pooter.  Any kind of leakage is unsettling.  Tammy, can't wait to hear how you like the eye weights.  I may have to find a different opthamologist and talk to him/her about that!  The opth. I went to never even mentioned it.  Huh.

Sending good wishes your way - and good luck at the doctor today!

Debbi

[TP]

Fluid out of your incision is something you want to bring to your Dr's attention. He will more than likely ask you to check your temperature and if it gets to a certain level he will want to see you. I don't want to alarm you but I had this happen after my AN was removed. I went into his office to have stiches (without novacane) and a few days later it still was leaking and I had to have a CSF repair surgery. I got menigitis and went home with a pic line and administered antibiotics for 12 days (6 hours a day). Unfortunately my inicision leaked again and went back into his office for stiches (without novacane) but it didn't help and went back into the hospital a couple days later for a lumbar drain but two days later had another CSF leak surgery. That one did the trick.

Hang in there and make sure you are resting. I will be praying for you!!

[cmp]

Tammy,

So glad your eye issues are improving, and I hope the temporary weight will make a huge difference in keeping you comfy till your blink is up and running!

I didn't have any leaks after my '89 surgery, so I can't offer any useful input on that. I can imagine that it would be pretty disconcerting, though! But if your doctor has been advised of the leak and not gotten worried, chances are you can relax, too especially since you're scheduled for your post-op tomorrow. Good luck--we'll be awaiting your report!

Carrie

[Kaybo]

Debbi~
I went 7 years without an eye weight!  Please seek out a Dr. that can help you!  It can make ALL the difference in the world and is VERY easily reversed!  The intial eye surgeon that stitched my eye copletely closed mentioned it, but then never did again - I thought I couldn't do it since I'd had my eye sewn shut before (once again: young & naive) and then I moved & the Dr. here NEVER mentioned it.  When my mom got BP and had a external weight, I asked my opth. and he said that would be GREAT for me - why had he not mentioned it the 100 times I'd been in for scratches I don't know??    These things kind of make me go "HMMMMMMM..."

K

[Debbi]

Kay - makes you want to scream sometimes, doesn't it?  Also makes you realize that, as a patient, it is incumbent upon us to be informed and take some measure of control of our own medical care!  After I get through the current infection scare, I will revisit the opthamologist thing, definitely,

Meanwhile, hoping to hear a good outcome from Tammy!

Debbi

[Jim Scott]

Tamara:

I'll just pop in here for a moment to add my voice to the 'AN chorus' that are uniformly pleased to learn your eye issues are improving and you're getting the gold weights to alleviate some of the discomfort.  Excellent. 

The 'leaky head' thing sounds a bit problematic and would concern me - but apparently not your doctor - which seems a bit peculiar as your description gives me the distinct impression that you have a CSF leak.  However, I'm not a physician and so I'll defer to your doctor's opinion that the leak is 'not a big deal'  I sincerely hope his optimism is justified.  Meanwhile, keep some towels handy. 

Jim

[Tamara]

Yep, it's officially as CSF leak at the incision site, which I'm told, once again, is "quite rare".   I'm on a medication (probably the same one as you, Pooter) to decrease CSF production.  My dear Don, scoutmaster that he is, had me adequately wrapped last night so I wasn't too drippy.  I am to do nothing over the weekend (gee, looks like I won't be down at the Rave!), and go in again on Monday morning. 

My family is going to wheel me around the Botanical gardens this afternoon, and friends are coming over with steaks to grill for tonight, so I have something to look forward to.

Eyesight is not as good as yesterday for some reason, but not as bad as it was either.  I hope to get the eye weights early next week. 

One more apparently rare (though good) post surgical outcome is that my tinnitus is very diminished or gone entirely.  Go figure.

I wish I could keep up with the rest of you guys better, but it's taking all my energy to do this at the moment.  Please know I am thinking of you all, and wish all upcoming treatment cases the best.

Hugs,
Tam

[Kaybo]

Tamara~
Don't try to keep up with anyone - let everyone else go at YOUR pace!  Have fun!

K

[Debbi]

I agree with Kay - let US keep up with you!

Can't believe you have a CSF leak - rotten luck, Tammy.  I will hope that the drugs help (they seem to be helping Pooter) and that you are better by Monday.  Meanwhile, take the doc's orders to heart and have everyone wait on you hand and foot! 

BTW, I am (after several mis-cues) having my PICC line out on Monday.  Deliriously Happy doesn't begin to describe how I feel - four weeks with this thing in my arm is enough!!

Continueing to keep lots of good thoughts and prayers for you, Tammy.  Take it EASY this weekend!

Debbi

[lori67]

Tamara -

Relax, enjoy your steaks, your friends and your roll through the gardens.  No need to keep up around here - it seems we all lag behind every now and then, but then eventually catch up again. 

Jan, I think you and I have the only doctors that don't get too worried about CSF leaks.  Mine told me the same thing - don't go to the ER - but call him instead.  Fortunately, I haven't had to worry about it yet.  I hope we can keep it that way! 

Lori