ANA Discussion Forum
General Category => AN Issues => Topic started by: Tamara on June 19, 2008, 08:28:03 pm
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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
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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
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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
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I just knew the eye weight would help. YEAH! ;D 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
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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
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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
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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!!
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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
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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
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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
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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
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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
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Tamara~
Don't try to keep up with anyone - let everyone else go at YOUR pace! Have fun!
K
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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
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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
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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
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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
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Tam -
glad the leaking is under control; hope it stays that way :)
Jan
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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
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Why get off that med? I looked through your link and nothing jumped out at me.. Why'd you get off?
Brian aka Pooter...
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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 “Brian� I am assuming you have never experienced pregnancy morning sickness. ;D 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
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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
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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
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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
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Note to Lori - stock up on the glue :D
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
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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!
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Second note to Lori.
Great suggestion by Debbi :D
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 8)
Jan
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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
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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!
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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
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Trish-
Pretty unfortunate that both of us seem to have gotten "dud" opthamologists. I think I'll ask my neurotologist when I see him tomorow (for the spitting sutures and incision check) if he can recommend someone who has worked with other AN patients. I was hoping to find someone out here where I live in NJ, but if I have to drive into NYC to find someone competent, I'm in. Like you, Trish, I think there is more I could be doing!
Meanwhile, Tammy, I hope that all of us leaky headed folks dry up SOON!
Debbi - still spitting sutures, but at least soon-to-be- picc-less!
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Ya know, sometimes you really do have to shop around for someone competent. Unfortunate but true. The opthamologist I saw was OK, and doesn't really "do" lid issues, but he was going to hand off my chart and request to the one who does - and you can bet I'll be on the phone first thing tomorrow tracking on that. Barring getting the eye weights, I'm going to take one or more (however many necessary) of the little leftover weights from my sons' Cub Scout Pinewood Derby days, and some medical tape, and there ya go. My husband was concerned when I mentioned this as he thought I might be serious (heh heh, I AM)
I'm still hanging in here, still non-leaky, though my head feels really tight and can be uncomfortable that way. On the plus side, no headaches (I was worried about that, as I've had maybe 2 headaches in my life), and no tinnitus.
Tomorrow will hopefully be a great day all around - Debbi will be picc-less, and my son (the one with 2 broken arms) gets one of his casts removed, and the other one shortened to a below-the-elbow one. Then he can bathe himself, which I think everyone will be happy about! AND, I hope to get a good report from my incision check. I do think it will be awhile before stitches come out though....Happy enough to not be leaking CSF (hey, don't I NEED that stuff??)
Hugs to all,
Tam
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Trish -
sounds like you need a new eye doctor - someone a little more familiar with the issues you are having who will be more helpful. But, it sounds like you already realize that ;) Sometimes you have to be your own advocate, so it's a great idea to ask your surgeon for a referral; surely he's had other AN patients with eye issues and can point you in the right direction.
Tamara -
while it's unfortunate you are having eye problems, it's great to hear that you are keeping a good attitude. I have a few of those Pinewood Derby weights you talk about; I'd be glad to send them your way if you need them ;)
Debbi -
you've got to be SO thrilled to be hours away from being picc-less ;D
Wishing all you guys the best in the days ahead,
Jan
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Trish,
Re: quoting you
“I too am frustrated (Debbi) that the opthamologist i visited last week was SO unhelpful.�
You need a “Neuro-Ophthalmologist�
I have been in Canadian waiting rooms anticipating to see a doctor before- and even in Ontario :-\… HUGS
Nystagmus
Here in the USA I too had double vision and this is why I was prescribed the Diamox -as I had swelling causing this. The nystagmus was temporary and was caused by post AN surgery swelling affecting the cranial nerves- thus the nasty Diamox :P prescription.
Here are more details on “nystagmus�
http://en.wikipedia.org/wiki/Pathologic_nystagmus
Here is a video of what it looks like as the eye involuntarily vibrates or jiggles from side to side
http://video.google.com/videoplay?docid=7594210740186980863
RE quoting you
“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…�
Here in the USA (I am a Canadian residing in Oregon) I went to my ophthalmologist, and his partner, as soon as I returned to Oregon from my surgery in California with the eye issues. They did not prescribe the eye weight but promptly referred me to a “Neuro-Ophthalmologist� who specialized in Oculofacial Plastic Surgery (I did not have surgery). It was the Neuro-Ophthalmologist who fitted and ordered an eye weight for me. He had a hunch that once the swelling went down, and with time, this issue could be waited out without surgery - thus the eye weight.
This is my #1 “eye guy� for my post AN treatment complications
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11302
A Canadian Neuro-Ophthalmology I suggest you contact
His Neuro-Ophthalmology department there has a woman on the faculty who also is a CANADIAN :) :-*
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=13290
I understand she specialized in nystagmus.
I suggest you call her directly and see if she can recommend you a “Neuro-Ophthalmologist� there in Ontario.
I actually found my neurotologist (my #1 surgeon and team leader) through calling reputable academic Canadian neurotologists- for highly recommended surgeon down here. My experience is that in the neuroscience medical field of professionals their world is small- and they often all know of each other as they meet at conferences, symposiums or simply went to university together. Try to not be upset with your current ophthalmologist as she just may not be in-the-know … I think this might be just out of her league. However she should have identified her limitations and referred you to someone more specialized in this. Put aside anger and frustration and keep moving forward to get the best care for YOU.
The eye weight
Here is the temporary eye weight product link
http://www.fci-ophthalmics.com/pdfs/blinkeze.pdf
Print this up and take it into your specialist
Here is the on-line ordering page that also is for Canada
http://www.medcompare.com/OphthalmologyWeb/moreinfo.asp?ltid=2&type=product&id=34993&cbid=5
Eye bubble bandage
The eye patches from the store do have elastic and I too could not wear these as it pinched the incision from the surgery. I was given these eye bubble bandages.
http://www.medcompare.com/details/31030/AfterCare-Eye-Bandages.html
These stick on. If you wash these in cold water you can reuse these. (hot water messes up the glue) The glue looses the adhesiveness after a while and I just taped mine on with tanspore tape once these lost their stickiness.
Here is a random Canadian link; I pulled up on Google, on that product,
http://solutions9.3m.com/wps/portal/3M/en_CA/Nexcare/Home/Products/FirstAidSupplies/Tapes/FlexibleClearTape/
Eye patch option idea
While I was still in the nystagmus stage (which did eventually clear up) my husband covered the outside of the eye bubble bandage with back electrical tape to block the light. This made a huge difference- and I could walk and balance better too. However this is a temporary solution.
The black patch was not so bad- as I joined the Captain Deb pirate club ;D :D ;) , here on the forum, for a short time ....as I walked like a "drunken sailor in the wind."
http://anausa.org/forum/index.php?topic=5183.0
&
http://anausa.org/forum/index.php?topic=5182.0
The eye weight will help with dry eye and will allow you to blink but it will NOT help the nystagmus (and double vision). The nystagmus does take time and a reduction of swelling- before it resolves.
Healing Happens
Know that yesterday I went on a huge all-day rigorous hike here with the family
http://www.oregonstateparks.org/park_211.php
My vision is now great! I did have to wear sun glasses… but so did many other hikers. 8) I scaled the steep hills with no balance issues ... less than a year after I was going through what you are going through. Healing does happen… Neurological things take longer to heal ...lets say than something like mmmm ::) … a knee surgery, etc. Hang in there. :)
You are you best advocate
You must be the #1 person hounding these doctors for good follow up care. Write a polite and gracious letter to your ophthalmologist (now matter how mad >:( :-\ :'( :-[ you are at them right now) and print up the products sheets from the links I have given you- above and enclose. If you are having double vision I am suspecting that you are experiencing “nystagmus�… and you really should see a “Neuro-Ophthalmologist� ASAP. You need a referral as that is the way the Canadian Healthcare red-tape-system works :-\. If the ophthalmologist does not write this for you - then ask your neurotologist to write one.
I really think you will get results with this approach… PM me if you still have issues. I am sure we can point you to the ANAC group and they can also help advocate for you "IF" you continue to have issues with getting referrals to qualified specialist for your post op care.
http://www.anac.ca/aboutanac.html
They have some excellent people on their board.
http://www.anac.ca/boardofdirectors.html
Register as a member so you can get their literature and booklets.
http://www.anac.ca/membership.html
Our ANA has an eye booklet- but I think it needs some updating with the counsel of “Neuro-Ophthalmologists�
https://secure.baxinternet.com/~anausa/for_sale.html
In the meantime be sure to keep your eye moist with all the blinding goop and drops as you do not want your cornea to dry out. We do have a drinken sailors in the wind club ;) :D ;D here on the forum for those attired with a pirate patch 8)... arby dar!
Hang in there- we are here for you.
As smiley PEARLY whites says "Huggles!"
Daisy Head Maizy
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DHM- You are a Goddess!!! Your post has a treasure-trove of information and I am going to spend time tonight reading through all the great links you posted. Teh pictures of the eye weights and bubble bandages are particularly interesting - thanks so much!
Debbi (off to get spitting sutures and picc line removed)
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Oh you are welcome- it is just a google royality queen thing ;) :D ;D ... look what our google KING is up to
OK 8) AKA Steve...
Now this thread is cool and releveant to be added here too ...as it is a great eye patch resource
http://anausa.org/forum/index.php?topic=6745.0
Daisy head Maizy
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DHM -
I second Debbi's commendation of your efforts. Thanks so much. I've got the Blinkeze eye weights ordered through the opthamologist and expect to get them by Thursday. My lid is closing a little better on its own, so feels a bit better.
Deb - hope you are enjoying being picc-less!
My news isn't so hot - my head is leaking again, and the sealant doesn't seem to be working. I go in tomorrrow afternoon for some additional stitches/staples, and an industrial-strength coating of sealant. If that doesn't work, I have to go back to the hospital for 5-6 days and have a lumbar drain. And if THAT doesn't work, I get to have my head reopened and repacked. I can't tell you how awful those last two options sound at this point...I've pretty much decided on avoiding hospitals for the rest of my life. So, please pray that this procedure tomorrow works. Sigh. So far staying off the ledge, but I can see the appeal at this point.....
Tam
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Tam -
NO LEDGES!
I'll keep my fingers crossed for a good coat of glue this time - and I hope that's all you need. No more hospitals!!!
Keep us posted!
Lori
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Tam -
I'm so sorry to hear you are leaking again :(
I hope the doctor's "patch" job works tomorrow and that you can stay away from the hospital.
Keeping you in my prayers and hoping for the best,
Jan
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Oh, Tammy. I am sending extra prayers for you - and I REALLY hope you won't have to return to the hospital. As I know from personal experience, not only is it hard physically, it is also very hard emotionally. I will hope that the exrra strength sealant does the trick.
I know this feels awful, but please try to relax as much as you can. Also, try to get as much rest as you can. I know this next bit of wisdom is pretty pointless, but I'll say it anyway - try not to get discouraged and stay away from the ledge. (I've been out there on the ledge - it isn't really a very nice place.)
warm wishes and hugs coming your way,
Debbi
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The ledge is never a very nice place :(
Keep the faith, Tam.
Jan
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Tamara,
I pray that overnight, and spontaneously, your CSF leaks stop.
Between now and seeing your doctor stay clear of all persons with cold or illness- as currently you are vulnerable. Keep tabs on your body temperature.
Praying for you…
HUGS
Daisy Head Mayzie
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Bleh Tamara! I feel sorry for you! My "leak" never came out so aside from the swelling and headaches (both better now with a new med) is the chief concern for me right now. I hope your head stops leaking and/or the new staples/sutures plus the sealant work for you! Both of the other options are yucky!
I'll pray that the leak gets better for you!
Brian
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Tamara -
Sorry I fell behind on this thread! I'm so sorry for what you're going through and pray that everything will be okay. I hope any or all measures short of having to go back to the hospital do the trick. I'll be watching for your posts and you'll be in my prayers.
Wendy
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Well, I now have additional stitches or staples, and a whole lot of adhesive. I have a truly lovely bonnet with a huge bandage over the left, but don't appear to be leaking at this point :D I go back to the dr tomorrow to have him check it so will keep you posted.
I'm wondering if the fact that my original bonnet was removed only 24 hours after surgery might have set me up for this...??
I am getting a bit bored and antsy so I think I must be feeling better, so that's good news! (Don't worry, I'll still take it easy)
Thanks for all the support, guys, I really appreciate it!
Tam
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Tamara -
glad the leaking has stopped; keeping my fingers crossed that it's a permanent thing.
I don't know if the original removal of the "bonnet" was a factor in your leak. From what I've heard on the forum, all doctors have their "rules" but I'm sure they all know what they are doing.
IMO antsy & bored are both good things ;D
Jan
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Well, I don't know that this is necessarily a good thing - but you've now joined the "multiple-bonnet" club.
??? We're a special group!! (Not that we wouldn't prefer to just be "normal" ANers...)
I hope that your head continues to be dry, Tammy. Remeber to take it easy and give your head a chance to heal.
Debbi
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Tamara -
I just read the news that your CSF leak has apparently stopped, what great news!! Being a member of the multiple bonnet club, you are in good company with Debbi and a few others. I hope you're not starting a trend (Yikes!-- I hiope you know I'm just kidding about that). Glad to hear you are feeling better too. Hopefully each day willl be better and better.
Wendy
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Well, I don't know that this is necessarily a good thing - but you've now joined the "multiple-bonnet" club.
I believe that full membership requires the posting of at least one "bonnet" picture on the forum... :)
Steve
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Gee, Steve, too bad I saw your post too late, ::) and the bonnet is gone already, replaced by the ever popular Ace bandage. So sorry....
Good news is that the apparently liberal use of stitches, staples, and glue applied on Wednesday are working at the moment and I'm no longer leaking. Yay! Someday in the future, I suppose I'll be curious as to how these will be removed, but at the moment it's enough to be dry.
Tammy
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Tammy -
bonnets, Ace bandages, we'll take whatever pictures you're willing to post :D
Seriously, I'm glad the glue & everything else is still holding strong.
Here's to dryness!!
Jan
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Tammy-
Here's hoping you wake up with a dry head tomorow!! (There's something I wouldn't have imagined myself saying to anyone six months ago... ;))
Hope your stiches and staples and glue continue to hold.
Debbi
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Tammy -
I second what Debbi said. I hope you are on the mend and the worst is behind you. Hoping you wake up with a dry head sounds kind of strange, but appropriate! I'll be keeping my fingers crossed for you.
Wendy
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Hi all,
My head is still dry (YAY), and at the dr visit this morning, he said it also looks less puffy under the skin (another YAY). I'm still keeping the Ace pressure bandage on, at least until ALL the puffiness is gone. But I think I'm hopefully in the clear.
Still having eye issues (am calling to bug the opthamologist about the Blinkeze again this afternoon), but I've been managing to move the corner of my mouth a bit the past few days, so I figure that's a step in the right direction.
My cleaning people came again today (last day, though), so I'm enjoying not cleaning. I started driving a few days ago. What with the wonky head and poor vision, I'm driving like a granny, but oh well, at least I'm out there. No parking problems so far. My husband went back to work, and I hope to be getting on with my life a bit more now.
Sill enjoying visits from family and friends (who also bring food!) so that helps, too.
THANK YOU all for all your support and note-comparing. It really does help a lot. :-*
Hugs,
Tammy
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Hi, Tammy:
Just a quick message to let you know I'm very encouraged by your progress. One Step At a Time. You go, girl. :)
Jim
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Tammy -
it sounds like you're making progress! and a dry head! Yea!
Sometimes recovery requires baby steps, but you're well on your way ;D
Keep up the good work.
Jan
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Tammy,
Glad to hear you got good news from the doc. It sounds like you're going great and will soon be out of the woods, so to speask. Take care and don't overdo it.
Wendy
P.S. Sorry to hear it's the last day the clarning people are coming -- I don't know about you but I hate housework!
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Tammy--glad your leaky head "adventure" has come to an end at last! May your recovery be all smooth sailing from here on in!
Carrie
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Tammy wrote
"...but I've been managing to move the corner of my mouth a bit the past few days, so I figure that's a step in the right direction."
Wahoo! That this is happening so soon is a VERY good sign! :)
Cheers,
Daisy Head Mazy