Leaky head

[Jim Scott]

In reference to CSF leaks: I had done online research prior to my consult with the neurosurgeon I picked to perform my surgery (next to choosing to my wife, the best choice I've probably ever made). While discussing possible complications, I asked him about CSF leaks.  He look puzzled at first and then replied: "CSF leaks?  I haven't had an AN surgical patient with a CSF leak in years".  I had already decided that I wanted this highly experienced and compassionate surgeon to perform my operation but that really helped cinch the deal.  Oh, and I didn't have a CSF leak.

Jim

[Tamara]

Thanks for the support, everyone.  My dr. says that in the 400 or so AN cases he's done, he's only had one other CSF leak.  So, it seems to be another oddity for me.  I've got a lovely do-wrap over the ace bandage, that together with the palsy, and occasional eye patch, makes me a true vision.

The roll through the park was absolutely beautiful - perfect weather, light breeze, and roses and peonies in full bloom.  One of those days when I know why my ancestors chose Wisconsin.

Leaking seems to be under control at the moment.  Will keep ya posted.

Tam

[leapyrtwins]

Tam -

glad the leaking is under control; hope it stays that way 

Jan

[4cm in Pacific Northwest]

Quoting Tamara
I'm on a medication (probably the same one as you, Pooter) to decrease CSF production.

I was on Diamox (Acetazolamide) for this
http://en.wikipedia.org/wiki/Acetazolamide

If you are on the same drug and it come times to stop taking it do not do this abruptly but wean off slowly. I had an abrupt stop and blew up like a water retained puffer fish- everything swelled and the CSF leaks started all over again.

Just a little advice from the CSF leak experienced.

Daisy Head Mazie

[Pooter]

Why get off that med?  I looked through your link and nothing jumped out at me..  Why'd you get off?

Brian aka Pooter...

[4cm in Pacific Northwest]

Pooter,

Well after a month the drug does not do much. Also ultimately you do not want to be on drugs when you are finally recovered.

These are the side-effects (cut and pasted from link above)
Side-effects
“Common side effects of using this drug include numbness and tingling in the fingers and toes, and taste alterations (parageusia), especially for carbonated drinks; both are usually due to mild hypokalemia (low potassium levels). Some may also experience blurred vision but this usually disappears shortly after stopping the medication. Acetazolamide also increases the risk of developing calcium oxalate and calcium phosphate kidney stones. Everyone will experience more frequent urination as a result of using acetazolamide. One should drink more fluids than usual to prevent dehydration and headaches. Acetazolamide prolongs the effects of amphetamines and related drugs�

It is a diaretic and you do not want to be on this too long- only long enough to help clear up the CSF leak. (You do not want to mess up your kidneys and other good stuff)

The key is to wean off it rather than stop it abruptly - as to avoid messing up your system.

Because your name is “Brianâ€?  I am assuming you have never experienced pregnancy morning sickness.  The nausea I got from this drug was equivalent to that…    so I was keen to stop taking it.

For the record I am at 10 month post op and can say I am now on NO drugs at all. Healing happens and it does eventually get better. What made the big healing difference, for me, was daily physiotherapy exercises in my routine at home.

Daisy  Head Mazie

[wendysig]

Tamara -
Sorry to hear about your CSF leak, what rotten luck.  Hopefully the meds will take care of it and I'll look forward to seeing how your are doing.  Sorry I haven't replied before now, but was off line most of the day.  I hope when you see the doc on Monday he has god news for you.  Jut try to take it easy and, I know it's much easier said than done, but try not to stress out too much about this. 

Wendy

[Pooter]

Daisy Head Mazie,

I agree that one doesn't want to be on the med long term.  Tamara and I have only been on it short term, though.  I've been on it a little over a week and Tamara has been on it less than that.  Other than carbonated beverages tasting funny (and I think some mild dehydration), I haven't had any of the side affects.  Oh, and more frequent trips to the bathroom, but that's typical.  I don't plan on being on this med long-term.  I plan on being on it long enough to reduce the CSF and let things heal, but not beyond that.  Heh..You're right that I've never experienced morning sickness because of pregnancy.  I never have had nausea on the med either.  If there were bad side affects, I think I would get off the med too.

Congrats on being 10 months and on no drugs.. That's great! 

Brian

[Tamara]

Yep, that's the same med.  When I was at the dr yesterday, he basically used some adhesive to seal up my head.  Don said it was pretty much like super glue.  So, Lori, I'd like to suggest that you add a supergluing station to your garage set-up.  It seems to have worked pretty well, as I am no longer leaky.

Tam

[leapyrtwins]

Note to Lori - stock up on the glue 

Actually docs use "super glue" for a lot of stuff these days.

Both my children were super-glued (by medical professionals) when they were younger.  My son had a cut on his chin glued and my daughter had a cut near her eye glued.  I was told it was easier than stitching them and appropriate since neither cut was too deep.

Modern medicine is just so amazing to me!

Jan

[Debbi]

Well, I am continuing to wish lots of healing on Pooter and Tammy!  I'm happy to let you two duke it out for the do-rag contest, thoguh...

BTW, on the Garage thing -  Willie has offered up some power tools.  He's got somethign that is used to saw apart houses, so that might be an overkill, but maybe the skil-saw??  We noticed that the surgeons on my surgery charged us for use of the micro-tools, so maybe we can charge people for the power tools...??  Lori?

Debbi - off the juice!

[leapyrtwins]

Second note to Lori.

Great suggestion by Debbi 

We definitely want to charge for the use of tools.  Hospitals get big bucks for this stuff, so we should too!  We'll have to buy some high-powered microscopes too - or better yet, take contributions.  Debbi, does your husband have any of those just lying around 

In addition, if we own tools we can rent them out to others.  I was told by my doc that Cochlear rents their high-speed "skull drills" to hospitals and although he didn't say this, I'll bet they make a neat little profit.  That's probably how they can afford to give out those nifty "gift packs".

Ah, I can see this garage business coming together now 

Jan

[lori67]

Superglue - got it on my shopping list.  That will save wear and tear on the sewing machine, but we won't be able to add any button-holes or zig zag stitching to anyone's head.

And house cutter-aparters.  What the heck - some people have thick skulls -  we may need that.    Besides, good to have some backup tools, James has a bad habit of not putting his away when he's done with them, so of course he can't find what he's looking for when he needs it.

And Tamara, glad your leak has been patched.  The actually do use the super glue stuff alot, especially on faces, because it doesn't leave as bad a scar as regular sutures.

Jan, i don't have a high powered microscope but my kids have toy binoculars and a magnifying glass. Will either of those work?

Lori

[cmp]

Tam--

I'm sorry to hear it turned out you have a CSF leak--hope the med is effective (with no side effects!) for you, and you heal quickly with no further complications.

The "roll through the park" does sound like it was lovely! Please take it very, very easy... Looking forward to hearing a good report after you see your doctor on Monday!

[calimama]

Hi all...

Just trying to get back into the swing of things here. i realize i need to update my profile at the bottom.

I too am frustrated (Debbi) that the opthamologist i visited last week was SO unhelpful. I have been seeing her annually for a few years because my mom developed glaucoma very young (late 30s) and it runs on my mom's side. Everytime i have gone there for a checkup and field testing she says.. why are you here again? your eyes are terrific! So here i go in there REALLY needing some help and NADA. For the double vision she said... oh you have to wear an eye patch for that (as i sit across from her with an eye patch on). And she said you just have to wait and hope it clears up or get surgery after 6 months (how about some advice that is actually helpful! like should i being trying to keep both eyes open a lot to help the adjustment, or what??). Like Debbi's experience, she made NO mention of the temp eye weight, which i could really use! (i feel silly that i forgot to ask... or maybe i did and she just ignored me). I also asked about where i can get a NICE eye patch - all i can find after all my searching is the nasty black ones with the super tight (right across the incision too!) elastic. I am hoping that family/friends in the US might find one that is flesh coloured or at least white (even pink!) so it is not BLACK on my very white face. I asked her to refill my prespcriptions for drops, ointment, and she did give me a script... however when i took it too the pharmacy they said oh these are just OTC! I am planning to ask my surgeon for a referral to a competent opthamologist who might do something for me. SHESH.

Debbi i have not been able to keep up with the 30+ pages you have going on post surgery... but i have checked in a few times and know you had a few hurdles, but i think you are just about past that so that is great news.

I have not had any leaks and interestingly when i left the hospital at day 7 i asked the risk and was told that it would have happened already and the docs had "no concerns" about me. Ironically, i was told nothing like what i have read on this site about not lifting things, not blowing nose, etc. But i have used the advice i have read here as psydo instructions.

good luck to one and all....

Trish