Hi, My Name is Audrey, and I'm Miss 26

[Audrey Levins]

I'm sucking.

Not in a vague paycheck-doesn't-cover-all-the-fun-I-want-to-have way, not in a Bad Hair Day way, not in a my-boyfriend-dumped me way, not in a bad-sniffly-cold way, not in a I-hate-my-evil-boss kind of way....

Oh, no. My suckage is concrete and inevitable, and cannot be solved by calling my best friend, getting a payday loan, buying a new conditioner, listening to sad songs, or eating a whole pint of Ben N Jerry's all by myself.

Nope.

I found out this week that I have to have surgery. For a condition that affects only 26 out of every 100,000 people. I'm not a girl who deals with those kinds of odds very well. I keep sitting here with that whiny part of my brain screaming, "WHYYYYYYYYYY?" I'd like to be a better person, and not wish those kinds of odds on anyone in the whole world but me, but unfortunately I am not a better person.

Why can't I be the 27th person amidst the hundred thousand? Why don't my lotto numbers have the same luck? Why didn't the irritating schmuck next to me in this sea of people get struck down with this, instead of me? I bet he takes twelve items to the Ten Items Or Less line at the grocery store....I bet he lies on his tax returns, and watches PBS but refuses to donate...I bet he always asks for the manager....I bet he turns his porchlight off on Halloween....I bet he doesn't rewind....I bet he litters biodegradable items and comforts himself with the fact that they'll decompose "someday"....I bet he requires a bag for a single item....I bet he's a cheap tipper....I bet he tailgates....

And yet he's fine right now, whoever he is. Mr. 27. And I'm still Miss 26.

Miss 26 has a Pilonidal Cyst.

Which has flared up twice this year, and has flared up again this week. Miss 26 has to have an operation next week which will prevent her from working, sitting, walking, or driving for, oh....anywhere from two to eight weeks. This is a surgery where they split you open right below your tailbone, excavate a lot of infected tissue, and leave it open. You have to rinse it out with saline 3 times a day, stuff gauze into it, cover it with more gauze, and somehow manage to live for a month or so without sitting. Drugged up on pain meds, in a fog, making no money, going slowly mad.

With a hole on your ass that could be inches deep and inches wide.

Yeah, I'm sucking.

Fuck, this is bullshit.

[Zabali_Clawbane]

((Audrey Levins)) I have no words. I'll pray. Keep us updated. :(

Have you found a way to tell your family yet?

Do you know if your insurance will cover it?

Maybe there is some way you can get some type of temporary disability payments so you will not fall behind?

I'll pray that something surfaces, and that you will stay sane will you convelasce.

[Mockingbird]

Audrey:

Been there, done that, got the scar.

Okay. What you will really have to be concerned with is the cleaning of the wound while it is healing. The discomfort isn't that bad.

The surgery was tolerable with the spinal they gave me, and as I heal fast(pre MS) within a couple of months it was fine.

You'll be okay. I promise. It is an inconvienience, nothing more.

Keep the faith.

[Audrey Levins]

Thank you, Zabali. Mr. Levins will be helping me with the convalescence....and with the cleaning and packing of the wound....and I just signed up for something called Carelink here locally, so the surgery/meds are pretty much paid for, except for a small monthly payment. (Thank God for that, or there would be no way I'd ever pay for any of this. Apparently the surgery, with post-op and anesthesia, costs about $3,000. There's no way I'd ever come up with that.)

Mr. Levins will continue working; I'm taking a leave of absence. Money will be tight, but it always is; I'm just glad I'm not paying out-of-pocket for the surgery.

And thank you, also, Mockingbird. I need words of encouragement; I've researched PC's and there's a whole forum devoted to them....and of course the kind of people who frequent a forum about it are the ones who've had problems, so they've all got appalling stories.

How long ago was your surgery? And did they leave it open, or did they stitch it shut?

And what, if I may risk sounding ignorant, does "pre MS" mean?

[Mockingbird]

Pre MS means before I was diagnosed with multiple sclerosis.

They left it open and the wound had to be packed and cleaned daily.

I'd go into more detail, but my right hand is tired and typing right now is difficult.

If you want more info privately, e-mail me.

[Jaade]

Pre MS probably means Pre Multiple Sclerosis.

Audrey, meet another Ms. 26.

I lived with mine for 3-4 years, and it was horrible. Embarrasing (no pun intended), painful and annoying. I first got it when I was pregnant (is there a worse time?!!?) and it was diagnosed incorrectly by my doctor (which wasn't a surprise). They refused to do anything about it at the time, because I was pregnant, and afterwards, I had my hands full.

It went away, and came back, went away and came back.

Finally came the day when it came back and would NOT go away. I couldn't sit down and was practically in tears. I told my BF that we had to go to the ER. They did the procedure right there, I couldn't take the pain anymore.

My surgery was in August of 2001. They do not sew it up, or you run the risk of infection. It has to be cleaned out several times a day, especially after showering (and um...TMI, but shower every time you go to the bathroom..#2). Take your pain medication about 15 minutes before the gauze needs to be changed.

Beforehand, buy a bunch of gauze, tape, and a heat pad. I got one at WalMart that I could heat in the microwave, and I just laid with that on my bottom for days at a time.

I didn't have any problems after it healed, which really did take some time (several weeks). Fortunately/Unfortunately, I wasn't employed at the time. Taking off work wasn't a concern, but I didn't have insurance, so I still owe the hospital a bit of money.

Oh, one last thing...something that really started to suck. After several days of tearing the tape off, it really really started to hurt, and my skin was raw. I used a lot of lotion to combat it a bit, but be careful with the tape that you buy, and have it attached to as little of your skin as possible. And, if possible, vary the exact location of said tape.

Almost two years, PC free and loving that. I hope to God it never comes back (they said it could :( )

And if you haven't read this already, and care to kow, there are three prevalent theories on how this horrid thing occurs:

1. Born with it
2. Really obnoxious ingrown hair.
3. Falling on your tailbone.

~J

[Audrey Levins]

Thank you for your replies, Mockingbird and Jaade. I have read that the best method, while it takes the most time to heal, is the open method.....I've also read about leaving it partially open/partially stitched. I won't know which method will be used yet on me; I have to talk to the surgeon, whom I was referred to for an appt. within a week.

The thing is, it's inflamed right now, and while it's not to the unbearable/can't sit/barely walk stage yet, it may get there, even though I'm on antibiotics....so I'm wondering if I should call the the doc and see if I can schedule the appt. with the surgeon earlier, perhaps going "under the knife" before it gets out of hand like it did the last two times. (The first time they lanced it open and packed it; the second time it drained itself. I don't think I can wait that long, or go through that kind of pain again. I'd rather have the op.)

And Jaade, I do remember the awful chapped feeling from the tape when they lanced it, and that was just for a week's worth of taping it. I'll be sure and try to get some "low tack" tape; that's just one more thing I don't want to deal with. :D

This is all a bit new to me; I've never had surgery before, or been to the hospital, or anything....so pardon me if I sound whiney. I'm just really frightened and dreading the recovery period.

Mr. Levins says we'll get cable for me, though, to entertain myself. :D Normally I never have time to watch TV, so I haven't had cable in years.

Hey, it's a tiny little thing to look forward to! I need all I can get.

:)

[Miller]

If it makes you feel any better, Mr. 25 was Rush Limbaugh.

[Shana]

Oh Audrey, I'm so sorry. What a truly appalling thing. It's no fun feeling like the law of averages is weighted against you... Anyway, I've always enjoyed your posts and you seem like a strong, plucky woman. You will pull through this! Keep us posted and good luck with the operation.

[Lynn Bodoni]

My husband had one of those years ago. He had the surgery, and I got to take care of him while it healed. The doctors tried stitching him up, but his wound got infected, so they opened it up again.

He said that it was more aggravating than painful. When I changed his gauze, I soaked the tape with peroxide to help loosen it.

Good luck.

Oh, and I got pregnant three times in two years, once on the Pill, once on foam and condoms TOGETHER, and once with an IUD in me. So I know what it's like to beat the odds in a bad way.

[Brynda]

I remember my brother-in-law having surgery for a PC. According to my sister, his experience was what others describe--more aggravating than painful.

In terms of surgery itself, if you have spinal anesthesia like Mockingbird had, you won't have the complications of a general, which in my opinion are the worst parts of surgery. I hate the drugged-out feeling and the nausea. The surgeries I had with only a local were a piece of cake compared to the ones with general anesthesia.

Along with cable, get yourself some other stuff to look forward to and keep yourself busy. I always make sure I have a good book started and a few more in reserve, plus special food I like. A new nightgown or some comfy around the house clothes are good, too--anything to look forward to or to keep me comfortable.

Best of luck. With any luck at all, it won't be as bad as it seems to you now.

[Jaade]

Audrey, since you've had it lanced before, you should know pretty much exactly what they will do.

Leaving it open and packing it is really the best solution, to keep infection away.

I didn't have general anesthesia, or a spinal. They did locals all the way around the area.

And lastly, Lynn...my mother got pregnant with an IUD as well. :)

~J

[Jaade]

Doh, I forgot one of the things I really meant to say.

Boxers..or nothing. I didn't wear undies at all afterwards, unless it was really loose boxers, so you may want to check into that. It's the most comfortable thing I could find.

~J

[ladybug]

{{{Audrey}}}

I had this surgery almost 15 years ago, when I was 13. At that time the cyst was leaking and staining all of my clothes. I really didn't want to have the surgery, but I couldn't talk my mom out of it.

The surgery itself wasn't so bad. I was able to go home from the hospital the same day. The first night was the worst, but the pain wasn't too bad as long as I didn't lay on my back. I didn't spend too much time in bed, either -- I remember sitting outside at the picnic table with my family about 24 hours after the surgery.

I had an open wound, so I had to soak it and pack it with gauze every night. The wound was very sensitive for the first couple of days, but after that the treatments were no big deal. I even went on vacation with my family while I was doing the wound care. By the time school started a few weeks later I had forgotten all about it.

Like other posters have said, I found the experience more aggravating than painful. Yeah, having to undergo surgery really sucked, but in retrospect, the minor pain and inconvenience were worth it in the end.

Best of luck, Audrey! Keep us posted.

[BoBettie]

You poor thing! You have my sympathy :(

[Dodeca Aww Hell With It]

Oh, do I have some stories to tell you!!!:p

Pull up a chair.

My brother had to have 4 surgeries for PC, and it seems to have cleared up for him.

So far, I have had 6 surgeries, the last one being in 1992, and I was scheduled for another surgery in 1995, but the wound closed on it's own.

The thing that is so damn irriatating about PC is that there is no one method/procedure with a 100% success rate, and the more procedures you have, the lower and lower the success rate goes.

PC absolutely kills whatever social life you had with the opposite sex. Period. End of story.

Speaking of periods, my friend Steve said it best when he described PC as "like having a period 365 days a year

2 of my procedures were of the "Leave it open" variety, but they never healed all the way up.

The other 4 were the "flap" variety, and the last one involved a plastic surgeon.

[whiterabbit]

This sounds AWFUL. You have my sympathy. I have a very different rare medical condition (we're talking one out of a MILLION here) and it's been known to piss me off, too.

At least the doctors have HEARD of yours. Mine, they might recognize the name from a paragraph in a med school textbook. Or they might not. ARRRRRRGH!

[RedDevil]

My brother is off work at this very moment due to this! I had to call him and go through the "guess what!" routine.

He's had the problem for the past 10 years or so, and finally went through the operation at the end of March. It was quite painful for the first few days, after that just uncomfortable and annoying. He did have a daily visit from a nurse to change the packing (the last visit was actually Friday just gone) and has had a few out-patient appointments as apparently it was quite deep.

He just had a few problems: a nurse didn't pack the area with gauze properly; he had a minor infection (antibiotics cleared it up) but apart from that nothing too bad. He does wish he'd done it years ago, the doctor says he shouldn't have any future problems.

He says it was a fucking pain in the arse lying on his front all the time though! ;) Anyway, we both send you our best. {{{Audrey}}}

[Audrey Levins]

Thanks a lot, everybody, for all the stories and kind words! As suggested by Brynda, I have a stack of books already; Mr. Levins is a very poor judge of what I'd like to read, so I thought I'd stock up while I can. I'm also getting two new sets of sheets for my bed...comfort and cleanliness are the keywords here....and I may "invest" in some boxers, Jaade. That makes sense.

Also for Jaade: You had locals all the way around? Was the cyst inflamed at that point? B/c when they lanced it the first time, I got 2cc's of Lidocaine injected directly into it--oh my God, it was like seeing a whole other rainbow--and I STILL felt everything the doctor did to drain/lance it. This is why I don't think I want a local; I'd rather be knocked out. That afternoon in the doctor's office stands as just about the worst two hours of my life.

The only time I've been "knocked out" was for my wisdom teeth removal....and they just gave me a shot in my arm. No IV, no nothing. Just this blissful shot in my arm; the doc said to "count backwards from 100" and I got to 98. No one I've talked to is familiar with whatever shot he gave me; most people assume I had an IV.....this was about eight years ago and I'm still kind of curious as to what it was. :D

I was groggy all day from it....in fact, I got up too quickly at home later and fainted....but I'd still take that shot over being awake. I'm a big chicken.

As for you, Lynn, props for taking care of your hubby. That enviable job falls onto Mr. Levins; you know it's love when he/she can stuff gauze into a hole in your ass twice a day.

My main goal here is good drugs. They gave me Vicodin last time for the lancing/packing and it didn't do anything at all for me but make me groggy; I still have half the bottle b/c I just stopped taking it. It was pointless. I hear Percoset is pretty good stuff. Anybody have any recommendations? I want to be out of it for several days following the surgery, so if any of these pain meds have that side-effect, I'd love to hear about it. :D

Oh, and Red Devil, tell your brother I do feel his pain. Literally. Your back really gives way after a few days of lying on your stomach...or at least, mine did. You spend so much of your time compensating for the PC that the rest of your body gets really worn out/sore. That's what I'm really not looking forward to; my spine is somewhat hyper-curved to begin with, so lying on my stomach all the time really begins to aggravate it.

Thanks, everybody, for all the support! It's nice to hear that other people have done this. I feel better already.

[Jaade]

Audrey, yes. It was an emergency procedure. Basically, since I couldn't have it done the first time it flared up, and the other times it had gone away on its own, I got really freaked out when it wouldn't drain like it had before, and the area around it was getting HARD and turning red.

So when I got there, the doctors decided they had to do it right then, not schedule me later. They gave me about 6 shots in a semi circle around the swollen area. It HURT, but I HATE HATE HATE needles, so you might not experience that. I didn't feel a thing when they did the actual procedure. BF held my hand the WHOLE time...though he was a bit grossed out. ~L~

I did faint on the way out of the ER though. I told BF I needed to sit NOW and he said, ok honey...we are going to the car, it's ok. I said no, NOW..and then a nurse caught me. ~heehehee~

Some people do have problems afterwards, but I'm betting you will do just fine. :)


Dodeca...ouch. :( I'm sorry you have to be in that percentage of people that don't get it fixed correctly. That was my worst fear. So far, I'm safe. How long after the surgery did yours reappear each time? Fairly quickly?

~J

[BoBettie]

Just a thought- the shot they gave you may have been Versed- it's what they used when I had the "look in your stomach with a camera" thing done.
http://www.rocheusa.com/products/versed/pi.html

They gave me the injection (through a port, I think- not in the arm) and I was OUT like a light. I woke up in recovery- never heard or felt a thing.

Good luck to you- that sounds perfectly horrible.

[Lynn Bodoni]

I've thought of one other thing, Audrey. You might want to invest in a couple of knee length sleep tees. Brynda mentioned a new nightie or lounge clothes. I've lived in San Antonio, so I know that you really, really need something cool and comfy. Something like this, maybe: http://www.roamans.com/roamans/product/product.asp?pf_id=20007&dept_id=739&rootdept=610&parent_id=735&

Wearing something like this makes it easier to take care of the wound.

[Dodeca Aww Hell With It]

Originally posted by Jaade
Dodeca...ouch. :( I'm sorry you have to be in that percentage of people that don't get it fixed correctly. That was my worst fear. So far, I'm safe. How long after the surgery did yours reappear each time? Fairly quickly?~J

I wouldn't say that it wasn't fixed correctly, it's not like the doctor was drunk when he perfromed the procedure, I just happened to be one of the approximately 10% of people who have surgery for PC where the surgery doesn't "fix" the problem.

Looking back, I think the longest period where I went gauzeless between my ass cheeks was about 9 months.

After my 6th and final surgery I couldn't sit down or lie on my back for 1 1/2 months and I wasn't supposed to climb stairs.

One of the more scary moments for me was the first time after each surgery that I would have to try and go #2. Because you have to exert a fair amount of pressure in that area, I was afraid that I would rip the stitches right out of the wound, which would not have been a good thing. Thankfully it never happened.

[Zenster]

Audrey, I am not a doctor, but I play one on TV.

You may want to lay off (as it were) the happy sauce during your convalescence. Alcohol is a vasoconstrictor and can interfere with circulation in other ways.

You may wish to increase your intake of vitamins A, C and E as all of these will help with tissue regrowth and healing in general.

I'll even venture that spicy foods and chile peppers are going to be right out.

Check with your doctor about these suggestions. Your situation is massively sucky but there is stuff you can do to speed the process. The first woman I lived with and another friend at the time both went through this and survived.

[Primaflora]

Would a child's plastic swim ring help for sitting? I know you can use those when piles are severe and episiotomies are hurting after childbirth.

Good luck with the surgery and with getting decent drugs.

[trabi]

Hi, sorry to hear about your bad luck. I really don't mean this to be in bad taste, and apologise for any offence caused, but have you considered maggots (http://news.bbc.co.uk/2/hi/health/1907065.stm)?

I'm not a doctor, but they sound to me like the ideal alternative to the constant changing of gauze, and apparently result in much less scarring than traditional methods for healing wounds, as they digest all the dead tissue but leave the healthy tissue.

[Mockingbird]

Things you will want to have for dressing the wound:

Gauze - the non stick kind for packing
A large gauze for covering the packed wound
Adult diapers(shudder).

Okay... the adult diapers were HUMILIATING. But they allowed me to leave the house and not seep through clothes, or onto my car seat(it happened the first time).

After the drainage slowed to the point I didn't need adult diapers, I had to wear... a maxipad.

I can buy anything and silence a clerk or wipe the smirk from their face with a glare. Wearing these was emasculating for me.

I did not date during that period.

My wound healed well, though there is a scar. A very noticeable one from what my ex-husband told me the first time he saw it by normal lighting.

[Cubsfan]

How do you leave a wound open and keep it from healing shut? Won't it heal over on its own even if it is not stiched shut?

Good luck!

[Dodeca Aww Hell With It]

Originally posted by Stinkpalm
How do you leave a wound open and keep it from healing shut? Won't it heal over on its own even if it is not stiched shut?


As I understand it, the packing of the wound with gauze is what prevents the wound from scabbing over, and the wound heals from the inside of the body outwards.

As the wound heals, less and less gauze is able to be packed into the wound. The first time my gauze was changed, they pulled an entire bottle of the stuff out of my wound. My dad said it was like watching a magician pulling one of those colorful handkerchiefs from his sleeve.

[Audrey Levins]

Thanks for all the additional advice! I do plan on going to the medical supply store for all the bandages, gauze, tape, etc....the only thing I'm wondering is that a lot of people say to use a "moist" gauze so that it won't stick to the wound--which would hurt like almighty hell, I imagine, to remove--but what is the gauze moistened with? Hmmm.

As per the new nightie...yes, that does make sense, Lynn. Normally I wear long pajama bottoms to bed but if I'm going to be living in this stuff, whatever's most comfy and easy.

Primaflora, they do make a seating "ring" specially for people with this condition....I haven't gotten one yet cuz I'm kind of broke, but I'm sure I'll get something b/c you're right, you can't sit comfortably for awhile without something keeping pressure/weight off your tailbone.

Zenster, thanks for the TV doctor advice. ;) You will be relieved to hear that I have already forsworn alcohol, and that I went to the store yesterday and bought lots of veggies and protein....also a multivitamin, and I've been drinking far more than my usual daily allotment of water. (I've heard zinc is particularly good for healing wounds, so I may get a supplement, but mostly I'd like to eat a lot of good fresh healthy food.)

Trabi, your maggot link was very intriguing, and I'd honestly think about giving that a whirl if I were in the UK....but I can't see American doctors even knowing what I'm talking about, much less administering them. :D

It's funny how many people turn up who've either had one of these, or know someone who has....it's just not something you usually bring up at parties. :D

[MisterThyristor]

I went through this as a teenager. I really recommend the "leave-it-open" version. My doctor injected a dye and then kept cutting until no traces of dye were left. The resulting hole was more than 4" long, 1" wide and 1 1/2' deep. Since it is close to the tailbone, it is low enough that the scar doesn't show with any clothes that I have.

But the only severe pain (I was under general anesthesia for the surgery) was when they removed the packing for the first time after the surgery. I remember biting the pillow during that part.

After that it was several months of sitz baths and using a Maxi pad to absorb any leakage (fairly embarassing for a teenage boy). But the pain was nothing, just a minor irritation, and did not cut back on my activities at all.

In contrast, my ex (wife at the time) had the surgery in her mid-30s, and was subjected to the process where it is closed off, with maybe a small hole for drainage. It healed over too fast, got badly infected and burst in the middle of an auto trip, releasing the worst-smelling fluid imaginable. I rushed her to the hospital for a second surgery, where they finally got it right.

I second the idea of trying out different tapes to find out which one irritates the skin the least -- there were about 4 kinds then, and probably more now. (cloth, paper, plastic, etc.)

So, cheer up! I don't think it will be all that bad, and I wish you the best of luck (and future health).

(I'm curious, though -- is the probability really that low? I know all kinds of people that have had that surgery. And do you know the statistics by gender, by any chance? I've heard that men get it twice as often as women.)

[Audrey Levins]

MisterThyristor, the dye your doctor used is called Dilute Methylene Blue, and it does indeed highlight all of the infected tissue he/she might normally miss during the surgery. I haven't had the consultation with my surgeon yet, but I have a list of questions I'm going to ask him, and that will be one of them...whether or not he's familiar with that.

The other ones will be how many PC surgeries he's performed, how well they went, what his post-op advice is, what his feelings are on open vs. closed, etc....I've had less-than-stellar experiences with state-funded healthcare, so I want to make sure I get the right guy or gal to do this. Most doctors I've dealt with have an "I'm God so stop asking me questions" attitude that really chaps my ass. No pun intended. It's one of those times when you wish you had private insurance and could afford private practice. :shrug: (In fact, part of the reason I'm in this situation is that the first Doc who saw me for this a year ago lanced it and packed it for three days, and never told me it was just the infection he was solving, not the cyst itself. I had to find that out on my own, this week. I saw a total of four doctors for this at various times, and it wasn't until the fourth one that it was all explained to me! I found out more in an hour on the internet than from any of them. Talk about pissed! I would've taken care of this the first time if I'd known it would keep coming back.)

Anyway, I got the stat on probability off one of the sites I visited; I don't remember which one....at www.Pilonidal.org, which was the most informative user-friendly site I've found, it states that 75,000 people get these per year. I don't know where she got that stat from, but she's got links to all kinds of medical sites/journals so I'd assume it's fairly accurate?

She also states that it's not gender-specific to the extent that a lot of people think, but a lot of the info we have on it comes from WWII, when they called it "Jeep Rider's Disease." Apparently lots of soldiers were stricken with it, costing the government millions of dollars.

And now I'm stricken with it, and will be costing the government several thousand. :D I'm so grateful for that, though; if I weren't eligible for some kind of help with this, there's no way I could afford it. Ever. It's bad enough having something like this occur without having to worry about how you're going to pay for its cure....and I've always worked in restaurants, very few of which offer any kind of insurance.

[Audrey Levins]

MisterThyristor, the dye your doctor used is called Dilute Methylene Blue, and it does indeed highlight all of the infected tissue he/she might normally miss during the surgery. I haven't had the consultation with my surgeon yet, but I have a list of questions I'm going to ask him, and that will be one of them...whether or not he's familiar with that.

The other ones will be how many PC surgeries he's performed, how well they went, what his post-op advice is, what his feelings are on open vs. closed, etc....I've had less-than-stellar experiences with state-funded healthcare, so I want to make sure I get the right guy or gal to do this. Most doctors I've dealt with have an "I'm God so stop asking me questions" attitude that really chaps my ass. No pun intended. It's one of those times when you wish you had private insurance and could afford private practice. :shrug: (In fact, part of the reason I'm in this situation is that the first Doc who saw me for this a year ago lanced it and packed it for three days, and never told me it was just the infection he was solving, not the cyst itself. I had to find that out on my own, this week. I saw a total of four doctors for this at various times, and it wasn't until the fourth one that it was all explained to me! I found out more in an hour on the internet than from any of them. Talk about pissed! I would've taken care of this the first time if I'd known it would keep coming back.)

Anyway, I got the stat on probability off one of the sites I visited; I don't remember which one....at www.Pilonidal.org, which was the most informative user-friendly site I've found, it states that 75,000 people get these per year. I don't know where she got that stat from, but she's got links to all kinds of medical sites/journals so I'd assume it's fairly accurate?

She also states that it's not gender-specific to the extent that a lot of people think, but a lot of the info we have on it comes from WWII, when they called it "Jeep Rider's Disease." Apparently lots of soldiers were stricken with it, costing the government millions of dollars.

And now I'm stricken with it, and will be costing the government several thousand. :D I'm so grateful for that, though; if I weren't eligible for some kind of help with this, there's no way I could afford it. Ever. It's bad enough having something like this occur without having to worry about how you're going to pay for its cure....and I've always worked in restaurants, very few of which offer any kind of insurance.

[Jaade]

Originally posted by Dodeca Aww Hell With It
I wouldn't say that it wasn't fixed correctly, it's not like the doctor was drunk when he perfromed the procedure, I just happened to be one of the approximately 10% of people who have surgery for PC where the surgery doesn't "fix" the problem.

Looking back, I think the longest period where I went gauzeless between my ass cheeks was about 9 months.

After my 6th and final surgery I couldn't sit down or lie on my back for 1 1/2 months and I wasn't supposed to climb stairs.

One of the more scary moments for me was the first time after each surgery that I would have to try and go #2. Because you have to exert a fair amount of pressure in that area, I was afraid that I would rip the stitches right out of the wound, which would not have been a good thing. Thankfully it never happened.

Yes, the way you explained it is what I meant. I read up about it on the internet as well, and read that for some people, having the surgery once, twice...even three or four times doesn't guarentee it's gone for good.

I was wondering how long it lasted because I am going on 3 years now. It hasn't flaired back up, but I can still feel a small bump back there which frightens me :eek: and I always worry about it coming back.

Regarding #2...OMG I was terrified too!

~J

[Mockingbird]

The gauze should be moistened with sterile saline. From there, being packed in your body will keep it moist.

[Drastic]

Good friend of mine once mentioned having one of these when she was younger.

This whole thread is making me think I should express remorse for not displaying nearly enough sympathy at the sharing. Crikey.

Good luck.

[dropzone]

Originally posted by Audrey Levins
Pilonidal Cyst

I sorta had one. My wife called it a "pilonidal cyst" and "operated" on it and cleaned it out before it got too big (she's the queen of half-assed--no pun intended--amateur surgery). No biggie, but you definitely have my empathy.

[alice_in_wonderland]

:(

It's a shame you have this Audrey - I have never had it, but I know a couple of people who have.

Both of them have indicated that the "leave the wound open" method is best for healing, and that after the surgery, you'll be much happier and more comfortable when everything heals up.

The boys and I are sending positive, healing vibes your way.

And may I humbly suggest that you treat yourself to something nice?

[Diogenes the Cynic]

Wow, this surgery sounds like a real pain in the ass :D


Ok, bad joke, I'm sorry.

You have my sympathies, Audrey, I hope you recover quickly, and hey, at least you get painkillers.

[astro]

http://www.pilonidal.org/guestlog.htm

[Zenster]

Audrey, one last caveat.

I'm glad you're laying off the nose paint if you're going to be taking those happy pills. They definitely don't mix well.

[Pixiesnix]

Is it too late to add a "Yikes, I'm sorry to hear that?"

[Audrey Levins]

It's never too late, KCSuze. I'm a sympathy whore right about now. :D I've been on the phone with all my friends, bored off my ass--geez, what is with the puns this inspires!--and frightening them all into tripping-over-themselves-sympathy. Nobody at the moment has a better story, so I'm a nine day wonder. ;)

I posted a link to that website, astro, but I stayed away from that page after reading about two stories....it was far too appalling for me to continue. Like watching a horror movie and finding out I'm the star. Even the caveat at the beginning is alarming....she basically says that people who post this kind of stuff are the people with bad stories to tell, so please remember that "only" 5% of surgeries go south.

Not really what this girl needs to hear right about now.

I like your suggestion, Alice. The thing is, I should be having this surgery in a week or so--depending on the current flare-up and when it dies down--and my birthday is July 19th.

And I have informed everyone I know that Audrey is having a hellacious birthday celebration this year. I'll be 25--which is a milestone anyway--and I'll have gone so long without a single drop of vodka that I'm sure I'll be the cheapest date alive. (This makes me sound like a raging alcoholic, doesn't it. Not really. I just have a Friday-night-out-with-the-girls routine that this has totally destroyed for the time being, and I'm going to miss it. And want it back, with a bang, by then.)

So yes, I believe I will treat myself to something nice. And all my friends better treat me, too. :D Thanks for the vibes!

[romansperson]

Originally posted by Audrey Levins
My main goal here is good drugs. They gave me Vicodin last time for the lancing/packing and it didn't do anything at all for me but make me groggy; I still have half the bottle b/c I just stopped taking it. It was pointless. I hear Percoset is pretty good stuff. Anybody have any recommendations? I want to be out of it for several days following the surgery, so if any of these pain meds have that side-effect, I'd love to hear about it. :D


There's a lot of research that's being done on pain these days, and some evidence shows that pain relievers work differently in women than men.

When it comes to opiates, different kinds latch on to different receptors in the body. Women seem to respond better to opiates that lock onto the kappa receptors. Here's a couple articles about that:

http://abcnews.go.com/sections/living/DailyNews/pain_gender_diff_020326.html

and

http://www.ucsf.edu/daybreak/1999/07/23_pain.html

An example of a kappa-opiod would be Nubain:

http://www.nursespdr.com/members/database/ndrhtml/nalbuphinehydrochloride.html

Kappa-opiods are also supposed to be less likely to cause constipation than other opiates such as morphine, which considering what you'll be going through, is definitely something to consider.

Of course, YMMV, since pain is different from person to person. Talk to your surgeon and see what he/she has to say about it.

You spend so much of your time compensating for the PC that the rest of your body gets really worn out/sore. That's what I'm really not looking forward to; my spine is somewhat hyper-curved to begin with, so lying on my stomach all the time really begins to aggravate it.

A really simple thing you can do to help with this is to stick a pillow under your abdomen while you are on your stomach. It helps ease the curve in your back so it doesn't get sore as easily. I'm sway-backed and this is the only thing I can do that will allow me to lie on my stomach for more than a few minutes.

[Audrey Levins]

Originally posted by romansperson
A really simple thing you can do to help with this is to stick a pillow under your abdomen while you are on your stomach. It helps ease the curve in your back so it doesn't get sore as easily. I'm sway-backed and this is the only thing I can do that will allow me to lie on my stomach for more than a few minutes.

Thanks for all the info on pain meds! I do intend to tell my surgeon that Vicodin doesn't work for me, so I'd like to try something else; I'll see what he/she suggests.

As far as my back goes....the pillow under the abdomen does help relieve my back, but it also causes stress to my knees/neck, etc., after an extended period of time, particularly if you're trying to do anything but sleep....this is what bothered me so much during the last flare-up, b/c it was so difficult to compensate for the pain of the PC during movement/lying down/walking around that basically every part of my body was sore from the unusual strain. (Try sitting down on a toilet without using your glutes. You'll be relying on your arms. Try walking without moving your hips. Your thighs will take all the extra work. Try getting out of bed without touching/using your backside. You'll rely on every muscle group that isn't used to that kind of strain.)

Basically after a week of this you'll end up with a sore back, sore arms, sore legs, a sore neck, etc., to the point that'll take another week after the problem's been solved before you're OK again. :D I don't anticipate this much of a problem with the surgery, since it won't be as painful as a flare-up....but it is difficult to try to read a book/watch a movie/entertain yourself in any way without sitting. You find yourself in funky positions that can only lead to additional strain/soreness on other muscles. :shrug:

I guess I'll just be happy when it's all over and won't come back, eh?

[Demise]

I'm really sorry to hear that, Audrey. I'll down a drink for my favorite SDMB bartender and wish you a speedy recovery. :)

[Apricot]

Perhaps dumb suggestion: Can you lie across one of those large exercise balls?

[Audrey Levins]

You know, Apricot, I'm willing to try just about anything. :D Thanks for the suggestion; a friend of mine's got one of those. I may sneak off with it.

Thanks, Demise. Please have an Absolut and Red Bull for me; that's my favorite. ;)

People always expect bartenders to have very high-brow or complicated alcoholic preferences....and the funny thing is, most of us are pretty basic.

[Sauron]

Sorry to hear about this, Audrey. I'll be thinking about you. Good luck!

[kambuckta]

What a bummer. :D

Best wishes Audrey and I hope it all goes brilliantly well for you. Just keep thinking about the happy-pills.

A friend of mine had a cyst when we were in high school, and I too now feel guilty that I didn't offer her adequate sympathy. Actually, I think it might have been my fault that she developed it in the first place, because we were mucking around in the school yard playfighting, and I gave her a kick in the rear. But she was too embarrassed to talk about it, so I didn't take it all that seriously.


I think I'll go ring her and offer my apologies now, even if it is 26 years too late.

[LifeIllustrator]

I don't want to show a lack of sympathy, because I know how these feel. I have had a reoccuring one in the past (crossing fingers).

I had it lanced the first time since I didn't know what the heck was going on with my ass. The doctor explained the whole PC thing to me.

After that, it did come back, and as soon as it got uncomfortable and on the verge of painful, I would soak in a very hot tub with a drawing salve and the thing would drain on its own. Never seen a doctor for it again, I just use my home remedy. It saves a lot of pain, discomfort, aggravation, and money. Plus, it is a pretty rare occurance for myself (YMMV).

I am jsut really, really, really (3 reallys) surprised about the procedures some of you guys have gone through for this thing. The doc even said mine (the first one) was one of the worst ones he has seen, and I am no brave man when it comes to pain, doctors and surgery...


Good luck!

[Dr_Paprika]

Pilonidal cysts may suck, but they can be corrected. I'm more worried about Mr. 3 of 25 million.

[Ephemera]

My best friend must've been number 52. He had this same surgery six months ago.

I think he's still out of work....

[Evil One]

Audrey...

My wife had one, and we used the "pack and heal from within" method. I'm surprised that nobody has mentioned the following, so I will. When the gauze is changed, there will be green pus on it. Do not panic. I faithfully cleaned and changed the gauze on my wife twice a day and saw the green stuff nearly every time. Things turned out fine for her.

[Audrey Levins]

I didn't even notice that someone had resurrected this thread! Thanks to all who continued posting, though....I already had the surgery five days ago, and it hasn't been nearly as bad as I thought it would be post-op. Mr. Levins has been faithfully pulling oozy gauze out of my extra asshole twice a day. :D

I can't believe I just cheerfully said something so disgusting. I have no shame anymore. It's official.

So far no green stuff though, Evil One. I'll keep an eye out.

[GoHeels]

Audrey, I'm a total stranger, but I just sent you some good vibes - hope they reach you.

And treat yourself like a queen after this is all said and done.

[CanvasShoes]

Oh you poor thing!!! My stepsister had one when she was just a teen. The doctor was SUCH a jerk too. The poor thing was in such pain, he gave her aspirin and told her to quit being a crybaby.

Best wishes for a quick recovery!

[CanvasShoes]

quote:
--------------------------------------------------------------------------------
Originally posted by Audrey Levins
My main goal here is good drugs. They gave me Vicodin last time for the lancing/packing and it didn't do anything at all for me but make me groggy; I still have half the bottle b/c I just stopped taking it. It was pointless. I hear Percoset is pretty good stuff. Anybody have any recommendations? I want to be out of it for several days following the surgery, so if any of these pain meds have that side-effect, I'd love to hear about it.

--------------------------------------------------------------------------------


Percoset IS good, though unfortunately it only lasts for about 3 hours. IMHO Vicoden is useless, it kept me awake, didn't do a whole lot for the pain, and made me sick to my stomach to boot.

They gave me 30 of each drug right after I had the surgery on my shattered fibula and ?? (the little rounded bone on the ankle on the inside of the leg?). The Percoset was "da bomb".