- Date:
- March 30, 2002
Story
I'm a 16 year old girl from the UK. First of all I think it's
really good that so many people are able to post their experiences
up on this web site, "good on ya" to who ever thought of it! I've
read quite a few peoples' stories and have a lot of sympathy for
everyone because nobody knows the pain until they have one!! In the
UK I think they treat pilonidal sinus's different, maybe because of
the NHS, I don't know! Every case has the sinus or abscess removed
in hospital and is left with a cavity. I would advise everyone (if
possible) to have it removed and not lanced because it has a higher
success rate of not returning. I had my operation on the 31st
October 2001, I had an abscess for over a week before which was
extremely painful. It was about 7/8cm's deep and I have had to have
it packed every day since the day it was done. I am in my last year
of High School and have missed around 10 weeks of school, so will
have a disadvantage when taking my GCSE'S in a months time. I know
that over in this country you never really hear of people who have
had a pilonidal sinus until you have one yourself. Therefore nobody
understands how much pain you're in and how it puts your life on
hold until it heals. I know I can't wait till it heals and I can go
out and have fun again!!!! Good luck to everyone!!!
- Date:
- March 29, 2002
Story
Elaine here, otherwise known as 'EML,' posting my surgery
experiences. I thought I'd put it on the Stories page since it is,
really, a continuation of my story of my personal struggle with
pilonidal disease/pilonidal cyst saga...
I'm going to try to get something typed here so I can somehow
provide some more help/insight to others out there awaiting
surgery--my experience wasn't a bad one, mainly due to the type of
anesthesia that was used/how they do things at the hospital where my
surgery was at.
We arrived way early that morning, but I wasn't going to be late
like I was a week earlier when I had my testing done at the Medical
Arts Bldg.
Anyway, I had to register, and the woman who registered my info.
then led me and my family to the Same-Day Surgery Department, where
some more info. was collected from me. I then had to give them a
urine test--for pregnancy, although I know I am not pg. I could've
signed something as a waiver but figured, what the heck, let the
ins. co. pay for something else, esp. with all the grief that they
put me through recently...
Then a woman, not a nurse, had me go into one of those infamous
"holding" rooms/areas and got a plastic bag and put my name on
it--to put my belongings in so they could lock it up in a small
closet in that room. I had told her that my monthly cycle was 'on,'
so she said to let the nurse know it.
I told the nurse about that (hee hee), and she got some stretchy
type of underwear for me to put on and had me use one of those
hospital maxis, which, btw, isn't as great as what's on the market
now, but I obliged and figured, well, if it needs to be addressed
anymore, I'll let 'em know it, and they can deal with it from then
on out...LOL
A cute male (don't know what dept. he normally worked in) who was
helping with Pre-Ops that day administered my IV. Evidently, my
veins aren't easily visible, so he gave up looking on my left arm
and went after the right arm. He was having trouble hitting the vein
and said he'd try one more time, but if he didn't succeed, he'd get
someone else to do it. Well, he tried getting it a certain way, and
it went in the vein, but my arm looked like it was going to be a
sight!
At one point, I had to call the nurse to get assistance getting
out of the bed/hauling that IV w/me to use the restroom prior to
surgery, and the IV had slipped, causing a slight leaking problem.
The nurse ripped off what tape that guy had put on there and
plastered around 5 pieces of clear tape to my arm like there was no
tomorrow! Yup, the sucker ain't goin' nowhere now, I said to myself!
She cautioned that there would be a bruise afterwards if I didn't
press firmly on the area. A second nurse rebuffed that, but, folks,
I DO have a lovely bruise to show for it, but it looks better than
it did a week ago...
A female chaplain came in and asked if I wanted prayer. We are
Christians, and I accepted, and I had thought at first that she was
a nurse!!
The cute guy had also asked me a sleuth of health questions. He
said, "We're used to dealing with people who have at least 7 health
problems; you don't have any?? We won't know how to act! You should
have no problem, then!" He mentioned the anesthesia and said,
"You're young; you shouldn't have any problems." I thought he was
talking like I was going to be getting general anesthesia, which I
didn't want, but you know how it goes.
A 'student' that was to be part of the anesthesia 'group' which
consisted of 3 people came in and talked to me. She said I was going
to get what's called MAC anesthesia. Yeah, I hadn't heard of such a
thing, either, but I looked it up online, and it stands for Managed
Anesthesia Care, supposed to be deemed a 'safe' form of anesthesia
that's often used in small surgical procedures. You're either
lightly or heavily (I must've been on the heavy side...LOL) sedated,
but if someone were to tap you on the shoulder, you'd respond.
She said they would be watching me and my vital signs, etc. like
a hawk and would take action--action being knocking me completely
out--if they noticed that I started feeling pain, etc. At that time,
a breathing tube would be placed in my throat, but, since I'd be
unconscious, my reflexes wouldn't try to 'fight' it. Again, that's
if they deemed it necessary to 'put me out cold'...
Sounds like a plan cause otherwise I wouldn't be able to 'let'
them shove anything down my throat!!! LOL
I wasn't really nervous, although I was 'ancy' about the sedation
part. The doc was running late; the surgery had been set to start
around 1:00 p.m., but it didn't end up starting till closer to 2.
Well, they wheeled me in there, but the doc wasn't in the room at
that point in time but was soon thereafter. They yanked off the
stretchy undergarment and had me roll over onto the operating table
which had a raised 'something' in the center, perhaps for those
patients who had to have part of their body slightly upward--can we
say have one's butt in the air, so to speak?? LOL I got oxygen put
over my nose, but, since I was lying face down, I could barely lift
my head enough for it, but I didn't let it overwhelm me.
Anyway, they must've attached LARGE velcro pads on the sides of
my hips in order to allow room to operate on the area at hand, and
the anesthesia team started 'juicing it up,' meaning they started
administering the anesthesia while the doc was shaving me. As she
started shaving me, she commented to a member of the surgical team
about the 'congenital pit in the natal cleft' that I had, probably
meaning the matted hair that had gotten embedded in it. Because of
the power of the MAC (sounds like a credit card, eh?? LOL), I was
never aware of the Lidocaine being injected into the area to be
operated on...yeah, buddy! Hee Hee It was great! No fear, no panic
attacks, no NUTHIN!! :-)
At first, it started to feel as if I were spinning and trying to
consciously get a grasp on what was to come next. Well, so much for
THAT theory! LOL It must've put me in a twilight zone cause I only
had fleeting visions of my eyes opening and then fluttering here and
there, but no recollection of what in the world was taking place on
my derriere! LOL
Toward the end, they must've decreasted the amt. of anesthesia
cause I distinctly remember something being shoved in my butt,
gauze, no doubt, then they taped it, but it wasn't like I was
feeling pain or anything. Maybe it was the finishing touches on the
entire thing!
Anyway, at some point during the op, I remember someone, and I
think it was the surgeon herself, telling a 'tall tale' to the
surgical team, and they were laughing over what she had said. I
could've sworn a cuss word was thrown in that conversation, and I
thought I said to them, through my daze, "I heard that, but I'm not
telling anyone!" Hee Hee
Also, I had accidently gotten a pencil lead poked in my behind,
closer to my hip, when I was a teenager, and I had sent the doc an
email prior to Surgery Day to see about this--see if she would take
it out--but she took one peek at it before she started shaving me
and said she wasn't going to mess with it. Ah, one less cut on the
ole butt! LOL
After they roused me after the op, I commented in a looney voice,
"That was some good stuff! That was better than having a baby/having
a C section!" I think they just laughed. :-)
I felt a tad bit woozy but not really while I was back in the
'holding' room, but I quickly regained my wits. Thankfully, they
used Lidocaine to numb the operated area cause I didn't feel pain.
Well, when the doc did get in there to talk w/us, she said I had a
small/simple cyst, which had gotten 2 inches from my tailbone. The
sinus tract that she removed also--it contained small, coarse hairs.
When I tried to ask her about the 'area' on my backside which I had
thought was a sinus--the pilonidal sinus--all along--she said that
it didn't have anything to do with the pilonidal cyst.
I don't know if it's just a mole or freckle, but I'm going to ask
her more about it when I see her in around 5 weeks.
She mentioned hair removal, and I told her I'm already 'on
it'--that I'm going to try hot waxing. She said that I can 'do
anything' that I want--meaning I'm not going to be down and
out--well, it's easy for her to say cause she doesn't have a gouge
in her rump that prob. feels like a bull got a hold of her! LOL
Well, I can walk up stairs, hold my 20-lb. son, and do other
things; it's just the sitting part that's questionable.
I felt nausea welling up inside of me on the way home. Eating
some animal crackers that I got from CVS helped calm that problem. I
actually walked out of the hospital afterwards, even though I had a
choice: wheelchair or walk out by myself. I felt able enough to walk
out of there.
She did not say what the technical name of the actual technique
that she performed was, nor did she show my mom or MIL how to pack
the wound--I was bandaged like a mummy, I knew that much! No, I
never got to see the cyst or sinus, and I didn't ask to--they
probably had it en route to the lab--who knows??!!
Anyway, instructions were to soak in a warm tub that Sunday and
remove the gauze. Then the gauze (new) had to be repacked inside the
incision using Q-tips. That was it! No other explanations were
given, really! The nurse, though, advised that I take it easy.
I was given Percocet for pain, and I was also prescribed Citrucel
and Kondremul, which is a laxative. The latter 2 are OTC, but the
doc wrote it down like it was a prescription.
I got a generic pain medication for Percocet, which is Oxycodone
w/apap, whatever that stands for, and it's in tablet form, with no
refills.
Now, I was trying to make it w/out the pain medication, so I
didn't end up taking any till the next day, which was Saturday. I
also wasn't thrilled about taking the Citrucel; my mom told me that
if you didn't mix enough water w/it, that it might settle in one
location and be really nasty, so I thought I'd let my body do it's
thing and wait it out--this is for BM's, folks--bowel movements.
I had to be able to do # 1 on my own before I left the hospital
last Friday. Drank 3 little things of apple juice, and all was well!
LOL They said I could leave as soon as I did # 1 and they felt
satisfied with what I had done--no problem!
Well, to make matters worse, so to speak (OT= off topic here), my
son, age 1 1/2 years, had been taken by me to an urgent care center
two days before--Wed., March 20. He had an ear infection. Ok, so he
wasn't improving, and when I had gotten home Friday after the
surgery, my hubby thrust my son at me, said, "Here, he wants you,"
and I was holding him practically nonstop from then on out.
My hubby wasn't being very supportive, and we had a slight
'blowout' that evening. He has a difficult time showing compassion.
Maybe he gets it from his dad; whatever the case, I resigned myself
to the fact that, again, I was on my own with this pilonidal cyst
saga and would follow it to the 'end,' whatever the 'end' may be.
Hopefully, you will understand what I'm trying to say.
Ok, so we took my son to the ER at a local hospital last Sat.,
and the ER doc took a look at him, and I pointed out that his gums
were extremely red--not looking normal, and he had blisters on his
tongue and lips, etc. He diagnosed him with having herpangina, an
infection similar to foot and mouth disease--except on the other end
'of the scale.'
Great; just great (insert sarcasm)...
Well, he said the ear infection was full blown and wasn't
improving and that he needed a different, stronger antibiotic, so he
prescribed that as well. Not only these 2 maladies, but my son had a
slight case of oral thrush on top of it! Now, there are 3 problems!
He got 3 prescriptions:
1. Zithromax for the infection/ear infection 2. CVS's brand of
infant gas drops--OTC, but wrote a prescription, nontheless 3.
Nystatain Oral Suspension for the thrush
Last week, I had been to CVS's pharmacy three times for
prescriptions. They totaled over $60, and that's with using hubby's
insurance's prescription card.
My mother-in-law came over Sunday afternoon instead of morning to
start to deal with the unpacking/packing of my wound. She said I
have 3 black stitches in there. Well, she thinks the doc shoved a
foot (yes, a foot) of Idoform Packing Strips (gauze) in there prior
to stitching it up cause when my MIL went to re-insert the packing
strips, she could only get about 6 inches in there.
We don't know if the stitches are dissolvable, either. Well, 2
days ago (Wednesday), I was out getting groceries (again, sitting,
even with a pillow underneath me in the car, isn't very good!), and
when I was standing by my car, I accidentally backed up ever so
slightly and bumped my incision area, which really ticked me off,
not to mention it was more sore. It had been on the sore side most
of the day, and that was not helping anything.
When my MIL packed it that evening, she said it looked like there
was fresh blood on the pad, meaning by bumping it, it could've
caused it. Not only this, but when she started packing it, I had to
halt her after only 1 inch of gauze was put in there cause it was
EXTREMELY SORE, FOLKS! I waited a few minutes, then she finished
putting it in, but it wasn't too bad.
It is sore on a daily basis, and sitting is done on the other
butt cheek, etc. I sit on cushioned surfaces, too. Lying down is
done on my side. I have to deal with packing/unpacking of the wound
for 2 weeks, at which point I'll see the doc's nurse practicioner--Friday,
April 5. At that time, she/anyone else around who is helping--will
determine if the stitches will be removed or will let the skin
grow/cover them. Like I said, I don't know if they're dissolvable.
It also will be based on how I'm healing -- if I have to repack
longer than 2 weeks.
Also, to add 'fuel to the fire,' I have hemorrhoids, and they've
been severe for the past 2 days. I called and spoke to the nurse
practicioner, and she advised not to use Tucks or cream but to do
the 'sitz bath' scene. I will have to find something to put over the
'pot' so I can sit in a small amt. of warm water and not get my
bandaging wet.
The doc replied w/an email cause I had questioned her about this
earlier in the day, and she said that Tucks are too irritating due
to the witch hazel that's in them and to not use the Proctosol that
an 'old' family doc had prescribed to me in 2001. She recommended
using baby wipes. I've not used anything yet, so I might try the
wipes. I am going to address my hemorrhoids when I see the surgeon
in a matter of weeks.
The first day the packing was changed, blood evidently came out
of the incision and got on my bathroom linoleum floor. It quit that,
though, once the packing had been completed. I didn't get too shook
up over it. If it had kept on, then, yes, I might've gotten bent out
of shape, but I've been maintaning my cool throughout this entire
ordeal.
I believe that having a positive attitude plays a large part in
the healing/overall emotional well being of the person afflicted
with this thing. I felt immensely BETTER right after surgery just
KNOWING that this crazy cyst/sinus had been removed from my butt!
I know that even though packing, etc., is uncomfortable, and
sitting is 'iffy,' that each day will get easier, and things will
improve. If it should come back, which I hope mine does NOT, then I
will most likely go under the knife again.
The doc made such an incision that leaves a slit open, just
enough to stuff Idoform packing strips in it, and it is evidently a
certain technique that she learned at dealing with these things. It
is not left completely open--healing by secondary intention. A small
portion of skin is open.
I will continue to keep everyone posted on my progress.
If I left anything out (where, you ask!? It looks like a NOVEL
here! LOL)
Take care,
Elaine
- Date:
- March 28, 2002
Story
What a great website!!!!i won't go into the details of my fight
with pilonidal disease,since it closely resembles many of the
stories i have just read...at least i don't have to explain to any
of you why my underwear is stained, why i sometimes have to sit in a
strange position,or why i keep sanitary napkins in my bathroom (i am
a single man)..discovered this website after my second major relapse
in 14 years..i searched the internet to see if there was anything
new i could learn, and i found this site...my AIM nickname is
bmegirr if anyone sees me online and wishes to share some 'tricks of
the trade'...
- Date:
- March 13, 2002
Story
I was wondering how my surgery would go and the recovery period.
After reading many of the stories here, and my doctor commenting on
how long the tunnel was, I thought I would be in agony. Not so
thankfully.
I had my first pilonidal cyst about 7 years ago, shortly after I
was diagnosed with Celiac Sprue. I ignored it and it burst and went
away. It kept getting reinfected about every 6 months and I
continued to ignore it (meaning no medical attention). It was sore
and stunk, but nothing major. Then early this year it became
reinfected and this time hurt like hell. Every time I would go from
a sitting to standing position (or vice versa) tears would stream
down my face. It was time to get it looked at.
I had the surgery two weeks ago and I'm doing great. I have yet
to see it, but my wife tells me is was about 3.5 to 4 inches long,
3/4" wide and she didn't say how deep. The doctor told me it was one
of the bigger ones he's done. (Not exactly what I was shooting for.)
I left the hospital after the surgery with 1 bottle of Tylox and one
of 600 mg of motrin. I took the Tylox, but that really upset my
stomach. But I noticed that the pain wasn't really that bad, so I
took only one Motrin the next day and nothing else the first week
while I stayed home. I bathed three times a day and the damn tape
was the worst part. (If anyone is going to have the surgery, have
them shave the area first.) I returned to work after a week and have
had no real problems during the last week. I have a desk job and
stood most of the time (I can crank my desk really high), but I've
been sitting the last two days.
I am so glad I overcame the horror stories and fear and had the
surgery. I wouldn't think twice about having this done again if
necessary. It hasn't really been all that bad, and I still remember
the pain from the cyst before the surgery (never mind that awful
smell).
One very happy survivor with a very good story to tell. ben
- Date:
- March 03, 2002
Story
03 MARCH 2002
Im so glad that I'm able to connect with so many people of the
same inconvenienced problem, my name is Jay and for the past 4 years
I've entrusted a hospital docter to remedy my condition.
Please people intervene seriously, after all this is a health
problem and your health is serious to you. Because your the
recipient who's suffering.
It all started from being a kick boxer, after excersises where my
buttock area became a sweat valley.I managed to erupt sweat spots
from which hair follicles were being pressed forcefully back into
the skin.
After 4 surgical operations i started to de-value the NHS and its
appointies.I then proceeded down the road to get better treatment
privately(which merely was a que jumping excercise).same hospital
docter in a pin striped suit who charged £90 for a 10 minute chat
where i was in a stalement dilema.
My hospital doctor has not been able to comfort me in my repeated
flare ups of pilonidal sinus's.
I was originaly trying to allocate a site for alternative
treatment for pilonidal sinus besides NHS surgery.And on my travels
i think I've picked up some usefull trials for you all, none of
which have been sampled by myself.But soon as i finish talking to
you i will.
Here they are: - Use vitamin tabs A&K for post operative surgery
- Massage vitamin E over wound - Take a course of Flucoxacillin from
your GP - Washing of pilonidal sinus area with antibactrial soap and
teatree oil - Visit a chinese herbalist from Manchester and undergo
a detox diet, from which he will drain the inflamed sinus - Keep
using your wifes sanitary towels as the cheapest form of drainage
collection.
But most of all i would appreciate some feedback for alternative
remedy of pilonidal sinus besides NHS surgery.
l look forward to your replies and hope that i have given you an
insight into this problem.
- Date:
- February 28, 2002
Story
There is life after pilonidal cysts! My daughter had the surgery
February 7, 2001. We've both posted stories and comments on this
website. I won't sugar coat it. It was extremely painful for her. It
was embarrassing and it was a nuisance. It was difficult for me to
watch her suffer and changing those bandages and packing several
times a day for weeks and weeks got old for me and especially for
her. The incision finally healed and then it reopened. In June, we
thought she was going to have to repeat the surgery. She said she
refused to go through that again - like she had a choice! The
incision did finally heal for good! She continues to play fastpitch
softball and has had no problems since!! Looking back, it was a
horrible experience but she survived! If you're facing surgery or
recovering, try not to get discouraged (that's easy to do), IT WILL
GET BETTER! Best wishes to you!
- Date:
- February 27, 2002
Story
Well, I can't believe I found this website! I have looked
everywhere (well, not everywhere, then...) for one like this and I'm
so glad I found it.
I first noticed my cyst in July 2000 and lived with it for one
year exactly, when I had it removed and left the wound opened (the
best method, as I was told). Okay, no problem at all. My mom used to
come to my house to make the bandages 3 times a day and everything
went fine. I was 50 days off work to heal but then, when I got back
to work it still hadn't closed completely! I was devastated. Then,
on December 2001 (at the 22nd! What a Christmas) I had to do a
second surgery. Okay again. I was a bit scared but if it was to be
fine, then it's okay. Let's do it, right?
Well, I was healing and then, after 45 days at home (again it was
an opened wound) my husband found a second little hole (there was a
tiny little one before but the doc told me it was normal to have
that and it was healing). I was more devastated then ever! So we
called the doc and when I got in her office the wound opened again
(once again it has closed just the top part, not the inside part)!
Alone and it was there, opened like it was after only 1,5 week after
the 2nd surgery... I still can't believe it... So, I'm off work for
more 20 days and now we're all worried that I might have diabetes. I
wonder if someone has this disease too or if the very same thing
happened to you.
I hope I come back with a good story to my cyst any time
soon.
Késsia
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