ANA Discussion Forum
General Category => Inquiries => Topic started by: Mama R on May 01, 2008, 07:30:08 am
-
I read a couple comments on here that indicated one could have a CSF leak way past surgery. One was 5 years after choking & nose blowing (possibly inconclusive) and another 2 months after surgery. I guess I just assumed that once one was past surgery for a few weeks this was unlikely. Insight anyone?
Also, I travel via airplane quite a bit and had asked my doctor if it would be okay to fly in July. My surgery was Mar 21st. He said yes but by flying sooner would be pushing it. Just wondered if anyone has flown soon after surgery?How soon and if any complications occured? My first fllight will be just under 5 hours and I would hate to deal with a headache that long, not to mention something more serious.
Becky
(AKA Ohio Also)
-
Becky,
I've flown many times, starting about 3 months after AN surgery, with no problems.
Regards,
Rob
-
Becky,
I believe some of the House Ear patients fly home within a few weeks of their surgery. I was told I could fly a few weeks afterward, but that was before I had my two CSF leaks. I'm still avoiding blowing my nose and sneezing only with my mouth open, as instructed. (I'm sure this creates as interesting a mental picture as it is in real life. Don't stand any closer than 100 yards if I look like I am about to sneeze ;D)
I am six weeks post op today, and you will be tomorrow. I did ask if I was out of the woods for a CSF leak at this point, and was told most likely, but the neurosurgeon nurse practitioner did say some people have a "late" leak. With all of my complications, I was afraid to ask.
By the way, nice hat. You look groovy. I don't think I would leave mine on long enough for anyone to make it fancy. You could start a business on the side for AN patients wishing to look trendy as they recover.
-
Becky -
My docs recommended not flying for 4 weeks post op. I had surgery 5/31/07 and was on a plane from Chicago to Denver the first week of August. I made a return flight about ten days later. I had no problems during or after either plane ride. I know people who travel to House fly much sooner, but I don't know what problems they've experienced - if any.
I never had a CSF leak, but from what I understand, although it is possible to have one way past your surgery date, the odds are fairly small. I'm not a doctor, but I'd imagine you're out of the woods at this point.
oHIo -
I totally forgot about the sneezing with your mouth open part of post op recovery until I read your post. I also loved not being able to blow my nose. Ah, memories LOL
Jan
-
Becky -
I was told that after Translab, the risk of a CSF leak was a "lifetime risk". My doctor said it could happen at any time after surgery - even years later as the risk doesn't seem to decrease after a certain amount of time. My doctor also does not seem to be as panicky about such a leak as some doctors sound. He actually told me that if it happens, not to go the the ER, but to call him first because if you go into the ER with CSF coming out of your nose, they will immediately be rushing you in to the OR to shave your head and attempt to make it stop, when he explained that while it is something that needs to be taken care of - it does not have to be taken care of THAT urgently. The leak is actually like a built in safety feature - if the pressure inside your head gets to be too high, your nose acts like a pop-off valve to drain some fluid to reduce the pressure. Sorry to make your head sound like a lawn mower engine or something, but you know what I mean. I'd have to say, with the way I've been sneezing from allergies this week, if I'm going to have a leak, it would be now! I feel like I might sneeze my whole brain right out! ::)
As far as flying, I didn't fly until last month - 14 months post-op, but when I asked about it at my 3 month post-op check up, he said it would be fine. When I did fly, I didn't have any problem at all - no headaches or anything. The only issue I had was with the area around my BAHA abuttment swelling a little, which could have just been from the air pressure and altitude changes or something.
And oHIo - thanks for the warning! I'll make sure to duck and cover if I hear you about to sneeze!!
Lori
-
I was told that after Translab, the risk of a CSF leak was a "lifetime risk". My doctor said it could happen at any time after surgery - even years later as the risk doesn't seem to decrease after a certain amount of time.
Lori -
I am shocked by this :o
Do you know if this applies to retrosigmoid surgery also - or just translab ???
Jan
-
I'm with Jan in that I've never heard that a CSF leak was a possible risk over a number of years. Hopefully some of the surgery folks can chime in on what they were told. Obviously, A CSF leak is a by-product of damage caused during the surgery where the "seal" keeping the fluid in place is broken or ruptured. I would think that would show itself fairly quickly after the procedure, certainly within days or a few weeks. However, I guess it might be possible that an area that is weakened from the procedure may take a longer period before it "fails" and a leak occurs. It will be interesting to see what others have heard.
Mark
-
Okay, so now I'm wondering if CSF leaks are always a possibility for anyone who has had any type of brain surgery ???
BTW, we really need an icon of a smiley face guy scratching his head!
Jan
-
Well, I don't know much about retrosigmoid, since that wasn't really an option for me, but from what I understand, and don't quote me here.. I'm not a doctor and I don't play one on tv... but.... once the "seal " (the dura), which is the covering of the brain that keeps all the fluid inside is cut, it will no longer be a closed system in there - I guess they can stitch it back together, but it doesn't actually re-seal itself so it's not water tight anymore.
If it does leak at the repair site, your body will respond by producing more CSF or increasing your intercranial pressure. If the pressure gets to be too much, the "pop-off" valve would kick into action and would leak fluid to reduce the pressure. It's your body's way of keeping things the way they should be.
Now, like I said - don't quote me on the technicalities here - but this is they way I understand it. Who knows, maybe my doctor just isn't as good a tailor as others and doesn't sew very well!
Lori
-
Who knows, maybe my doctor just isn't as good a tailor as others and doesn't sew very well!
When I was in the holding area prior to my BAHA surgery, I told my doctor that my brother who is a taxidermist sews better than he does! We both had a good laugh - but the nurse who was with us at the time looked like she couldn't believe I said that :o
Actually my doc did a great job on my AN incision. When I was looking at pictures of my BAHA site the other day, I noticed that you can barely see my AN scar :)
Anyway, Lori, your explanation makes sense to me. If I remember, next time I see my doc, I'll have to ask him his thoughts on this one. Or maybe I'll ask some of the nurses at work - they might know.
It's kind of weird though to think that my dura might not be water-tight ::)
Jan
-
I know my experience is a little (ahem) dated, but after my AN surgery in 1988, I flew uneventfully back home (5 hour flight from Florida to Las Cruces, NM, where I was living at the time) 10 days after surgery. In fact, my neurosurgeon kept me in the hospital 10 days precisely because I would be flying a long distance post-surgically.
I never even thought about a CSF leak as a risk!
-
Jan, I was just happy my doctor turned out to be a pretty good hairdresser! :D Couldn't really fault him for any sewing flaws, since I can't sew either. Maybe a little embroidery would have been nice - my initials or something...
I don't think the leak is a risk you need to lose sleep over. I just think it's one of those things that could happen - but it's rare. Just like AN's happen - but they're rare. I guess just something to keep in the back of your mind so if it does happen, you're not completely caught off guard and know that it's something that needs to be fixed.
Lori
-
Gotcha, Lori. I'm not losing any sleep over this issue - but somewhere in the back of my mind is the thought that if it rarely happens, I'll be that rare one. Afterall, I did get the AN ::)
BTW the embroidery would be a nice touch. Maybe we should start suggesting that to all the AN doctors out there.
My doc actually did a very decent job with cutting my hair - both for my AN and my BAHA surgery. When I told him he hadn't done a half bad job, he said "that's why they call us surgeons and barbers" :D
Jan
-
I was still having CSF leak issues over 2 months post op…
I was on an airplane home from surgery 6 weeks post op…
They drugged me up on Diamox for the flight
http://en.wikipedia.org/wiki/Acetazolamide
(Nasty stuff that you should really take BEFORE bed as it knocks you out ...otherwise you feel like a pregnant mama with morning sickness if you take it in the morning)
When it comes time to stop taking the drug wean off slowly as an abrupt stop can have you swell up like a puffer fish (as did with me) to then have more leaks.
How long CSF leaks can happen after AN surgery? Gee that is a very good question? I too would like to hear the medical answer once you get it.
Many patients fly home within weeks after AN surgery… "drugged" ;) :D
Daisy Head Mazy
-
Thx all for your input. I certainly feel better about flying.
I do think I will further the discussion with my doc. I love to work in the yard, landscaping, and am chomping at the bit to get out there. I am afraid I will overdo it as I tend to get moving along on things and forget.
As for the embroidery job, mine looks like a question mark..Do all translabs or did I hit a winner?
-
Mine is a question mark shape too. Add in the BAHA abuttment and I have a question mark and an upside down "C" with a metal post in the middle! I guess I won't ever be able to shave my head with all these scars on it.
I think in a million years when archaeologists find my skeleton, they'll take one look and say "what the....??". Maybe I'll be in a museum.
Lori
-
I had retrosigmoid and my scar is shaped kind of like this >
But these days it's faded so much it's really hard to see it.
My BAHA fixture doesn't look too bad either - kind of like a snapper that you would sew onto clothing.
Jan
-
Stop it already, I know I don't have one, you don't have to throw that in my face all the time!
I am so envious... :P
Steve
-
Well, you may be jealous of our scars and fixtures, but I'm jealous of that lovely blue mask LOL
And who knows, there may eventually be a BAHA in your future. Never say never ;D
"Lucky Jan"
-
i had translab too and had asked my doctor the possibility of leaks post op and he said it is rare. but i guess the opinion varies from doctor to doctor?
As to your flying question, when i was at House, out of state patients actually flew back after 2 weeks and some of them live on the east coast, so that was about 5 hours journey. I myself traveled to asia (12 hour journey) after 1 month and i had no issues - i just brought plenty of gum to ease my ear pressure (on the good ear) and ear plugs!
you looking good too!!! wishing u the best in your recovery!!
-
Steve,
How about I draw an upside down question mark, an upside down C and a sideways V on your head with a Sharpie marker and then we can use double-sided tape to attach a snap from the fabric store? We can attach a small I-pod to the snap and you'll feel like one of us!
But, of course you know that Jan and I will have to run out to buy some fishnet stockings to put over our heads so we can feel like one of you! Unless Jan already has some... I don't know what she does in her free time.... :D
Lori
-
Very amusing, Lori.
You know, I'm fresh out of fishnet stockings - I'll have to stock up soon ;)
I think Steve is just trying to flatter us, and our lovely skull markings and ornaments, because he's hoping we'll forget he still owes us knit hats. Wonder how that's going ???
Jan
-
Lori- Leapytwins -
Re: BAHA - I have seen a few picture and it looked as if it was too big to be covered by hair. Are yours? I am pretty good with SSD as I had
lost 50% prior to surgery but I haven't gone back to work and not sure I want to bother others by saying "What? What? What?" all the time!
-
I don't get my processor for another month, so I can't tell you from personal experience, but they are fairly small; about the size of the top digit of your thumb.
I've seen one "live and in person" and I had no idea the woman was wearing it until she told me about it - her hair covered it completely. BAHA processors come in different colors that help them blend in with your hair.
Jan
-
Mine is covered by my hair. I usually parted it on the other side, so as to offer more coverage, but just yesterday, I started parting it on the same side as my BAHA and it's still covered up. If I try to pull it back into a pony tail, it might show a little, but I still have a bit of a hair "deficit" I'm growing out from the surgery so I think with time it will be okay. And it's brown, so it blends in. If I decide to see if blondes have more fun, I might have an issue.... :D
Lori
-
Re the BAHA,
Since "adornments" are all the rage these days - tattoos and piercings and the like - I'm thinking I don't WANT to hide the processor. Maybe I'll paint it and attach little charms. What do you think???
Tamara
-
Tamara -
I know that at one point Joef actually had stickers on his processor. As I recall they were kind of like racing stripes. Maybe he'll post a picture for you 8)
Jan
-
Yes, the stickers were a nice touch, but charms might be a more feminine touch. I was thinking maybe flowers, but then I'd just sneeze more.
I still have the antenna my nephew gave me so I could hook it up to my "snap" for better radio reception. Maybe I'll just stick with that.
Lori
-
I probably should hear more of your BAHA experiences before I rule it out. Leapytwins - Didn't you just have the surgery? Input? Lori- How long have you had yours? Input? I know Anthem BC/BS said they may pay for the procedure but not the device. I figured if I opted I would talk with the Docs and see if there is special documention necessary for them to cover it. I've heard if it is referred to as a cochlear implant your chances of getting it covered are better. I also
read the device itself is $4 - 5,000? As always, thanks for your input.
Becky
AKA: Ohio Also
-
Becky -
I had my surgery on 3/4/08 - my doc recommends waiting 90 days for the processor, so I'm scheduled to get mine on June 4th.
The surgery itself was easy - nothing like my retrosigmoid surgery. It was an outpatient procedure and I had local anesthesia. I didn't feel a thing and felt great afterwards. I did get a lovely hat - similar to yours ;) - that I had to wear for 24 hours. Underneath the hat was a pink spongy bandage held in place by a small round plastic cap, that I had to wear for a week until the doc removed it. My hair covered the bandage & cap and I was able to shampoo my hair by holding a plastic cup over the BAHA site so it didn't get wet. When the bandage & cap were removed, I could shampoo normally. At that point, I also had to put neosporin or bacitracin on the titanium fixture 2x per day.
I found the worst part of the BAHA surgery was the intense itching I had post op while I was recovering. My doc said it was entirely normal and part of the healing process.
You are correct, a BAHA is similar to a Cochlear. Cochlears are for those who are bilaterally deaf (deaf in both ears); BAHAs are for those who are unilaterally deaf (SSD).
Although most insurance companies don't cover hearing aids, a BAHA is an implant, so they usually are covered. If your insurance turns you down on your first request, they usually honor your second. I believe the ANA will give you some tips on how to "protest" if your insurance company denies coverage.
I can't recall the cost of the surgery off the bat - both my doc and the hospital are in my network, so I only paid a $400 deductible. From what my doc and the audiologist tell me, my processor is supposed to cost roughly $2,500. My insurance company said they'd cover it, but I'm thinking I might have to pay an out-of-network deductible or some percent of the cost.
I'll let Lori explain the Dawn detergent and the toothbrush to you ;D
Linda (Catflower) and David (dpetty) also had BAHA surgery recently.
Jan
-
Re the BAHA,
Since "adornments" are all the rage these days - tattoos and piercings and the like - I'm thinking I don't WANT to hide the processor. Maybe I'll paint it and attach little charms. What do you think???
Tamara
You are my kind of BAHA wearer - proud to show it off! ;D
Steve
-
Becky - I had my BAHA surgery in November. I had general anaesthesia. I could have had local, but I'm not as tough as Jan, and besides, I have a 5 year old and a 2 year old - I figured I'd take advantage of the sound sleep - even if it was only for an hour or so. I had no problems and was out doing my normal things the next day. I got my processor in January (had to wait 8 weeks in between). I'm happy with it and would do it all again if I had to. It's one of those things you don't really notice until you forget to wear it one day and can't wait to get home to get it!
Now, I was waiting for Steve to chime in here about the Dawn dish detergent and the toothbrush, as we all know he's a BAHA wannabe (or would that be "wannahave"), but he didn't... so...the Dawn gets the bacitracin out of your hair (it takes grease out of your way) so your hair doesn't feel all slimy. The toothbrush is to clean around the abuttment. Jan and I are planning on going into business selling BAHA accessory kits with a bottle of Dawn, a toothbrush, a tube of bacitracin and maybe some batteries. Now I'm thinking perhaps we should throw in some sort of "adornment". ;)
As far as the cost - I can tell you that my whole surgery and the processor cost $33,000. That's paying the hospital, the anaesthesiologist, the surgeon, the OR fees and everyone else who happened to be at Vanderbilt that day. I could have saved a lot of money by having a local, but since my insurance paid for it, I didn't really care about the bill so much! :P If the doctor codes it properly, most insurance companies will pay for it. They will not usually pay for a regular hearing aid, but if it's billed as a prosthetic, it's usually covered. I have the exact code in my papers here if it comes down to it and you need it. Just let me know and I'll send it to you. The doctor and/or the audiologist will know how to get it through insurance.
Jan, your big day is coming!
Lori
-
Jan, your big day is coming!
Yes, it is !!! Just the other day I put it on the AN Calendar. But with all this talk of "adornments" I feel that I now need to come up with something really great to wear with it.
Any and all suggestions are appreciated ;D
"Tough" Jan
LOL
-
Gosh, and here I was all excited to be getting my stiches out this week ... I feel so left out...
-
Debbi - you still have a great reason to be excited!
Maybe so you won't feel left out, you can borrow Steve's I-pod and stick it to the side of your head so it looks like a BAHA. :D
Lori
-
Jan, your big day is coming!
Yes, it is !!! Just the other day I put it on the AN Calendar. But with all this talk of "adornments" I feel that I now need to come up with something really great to wear with it.
Any and all suggestions are appreciated ;D
"Tough" Jan
I'm thinking a Mohawk might set it off quite nicely... ;D
Steve
-
Speaking of stitches......I hear everyone getting there's out 7-10 days......Mine aren't coming out until 3 weeks post op??????? Wonder why the difference?
I think the adornments would be great....maybe like the little wine glass charms will work :)
Melissa
-
Melissa - the wine glass charms are perfect! I have some with little palm trees on them. Wanna go into business with us?
I got my staples out 14 days post-op. Am I the only one who had staples? Sounds like everyone else had stitches. I guess they needed something heavy duty to hold all my bright ideas in my head! Maybe my surgeon figured since he'd gotten all his other surgical tools at Home Depot, he might as well just use a staple gun to finish the job.
Lori
-
I'm leaning towards the mohawk - the weather is going to get warmer, eventually - but I'm taking the wine charm idea under consideration ;D
Staples? in your head, Lori? Sounds like you are really hard-headed LOL
And stitches for 3 weeks, Melissa? When do you get to wash your hair? I had stitches but they were removed 9 days post op. I couldn't shampoo until then - I'm a shampoo freak - so these were the hardest 9 days of my life!!! Okay, I just exaggerated greatly, but it wasn't easy to go 9 days without shampooing!
The more I read on this forum, the more I find that docs follow different protocols. I think it was Debbi who talked about getting her fat graft stitches removed soon; mine dissolved.
Jan
-
Sorry I did not read this sooner. I am the person that had a CSF leak at 5 years post op. I do know of one other person that had one at 10 years. I have flown several times (shortly after surgery) and did not have any problems with it and have never heard of anyone having a CSF leak because of flying.
Here is what caused my CSF leak: I was eating and suddenly began choking, I somehow managed to inhale something that felt like it was lodged in my nose (nothing was, but it felt that way). I started blowing my nose to clear it and did so continuously for a couple of minutes. All seemed fine, until a few hours later when I woke up to find my pillow very wet. I sat up and a clear fluid was running out of my nose, but would stop when I layed down. It was literally like a faucet. This went on for a day, I at no time ever considered it was a CSF leak. I called the doctor, saw him and he confirmed it was a CSF leak and said I could take care of it at home. He put me on heavy duty antibiotics and I was on bed rest (lying flat) for 7 days. I did see him every other day. On about day 5 it had cleared up. I am now 10 years post and have never had any other problems.
I am however VERY careful when I blow my nose.
My doctors have told me that it is possible, although rare, to have a CSF leak years later.
Cheryl
-
Cheryl, isn't it nice to be unique? ;) Well, maybe not in this case!
I had staples in my graft site too. I had those removed the same time as the ones in my head. I have to tell you, if I have a choice for any future injuries - I'd pick the staples. They didn't hurt at all coming out. I hate the feeling of those stitches as they pull on them. Maybe that's just me... I did have stitches for my BAHA implant though.
Lori
-
I'll be thinking of this during my next cold !!!! :o
-
I never felt the stitches being removed from my AN surgery - guess my head was still too numb.
I don't know if the stitches from my BAHA surgery dissolved or were removed ??? I don't recall the doc taking them out; I only recall him taking off the bandage and cap and looking at the site. If he removed them I surely didn't feel it.
Maybe I'm the hard-headed one ::)
Jan
-
My fat graft are supposed to be dissolvable......They said I could wash my hair 7-10 days after?? Stitches come out 3 weeks post op? Seems odd, a bit different than others that have posted on here?
Lori--I've got some "free" time coming up, We can get the AN sweat shop going for BAHA "charms", there are plenty of us that will be home recovering this month....wonder if we could make some manly ones for the guys? What would you use? Nuts and bolts? some sort of tool charm? ha ha :D
Melissa
-
Lori - I am very tired of hearing doctors tell me that what I have is either unique or rare >:( I just had wrist surgery for a very rare condition and also my recent post regarding Synkenisis at 10 years post op which the doctor called quite unique. Can I stop being so special now... ;)
Melissa - Don't forget to add Transear covers to your newly found business venture. I think it would be cool if hearing aid companies came out with something to decorate all aids.
Cheryl
-
Hearing these hair washing stories is making me appreciate my doctor that much more! I washed mine in the hospital the day my bandage came off and then every day after. He did suggest I 'try" to keep it dry until the staples came out, but I washed and rinsed it carefully and gently patted it dry, so that was as close as I got to trying. We nurses do make the worst patients, you know. And after my BAHA surgery I was allowed to wash my hair that night.
Hmmm... manly accessories... yes, I think nuts and bolts would work. I've got a bunch laying around loose in the garage/OR anyway. This could keep our start up costs to a minimum - and get my garage clean at the same time - making more room for surgical patients.
Ok, everyone to my garage with their hot glue guns! At least we know it's safe to fly now!
Lori
-
Hi everyone,
My translab looks like a question mark, too!!!
I had a CSF leak 11 days after my surgery, and instead of it coming out of the incision site, it came out my nose. They told me to come to the ER and someone would meet me there. They scheduled surgery the next morning. The doctor had to pack everything tight. He said since I wasn't using my left ear for anything (couldn't save hearing), he closed the tube up very small. Alot of packing. He also said it was partly b/c my eustachian tube was 4-5 times bigger than he had ever seen.
That was what caused it to leak. The first time I saw him in his office after that, he said "we are not out of the woods yet". (concerning CSF leaks). He said "never say never"!! So, maybe that might answer some people's questions. When I put my little finger just into my left ear, there really isn't a canal there. I can hardly get 1/4 of my little finger in it. He really tightened it up.