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This is regarding my daughter.
She had a bump so bad she couldn't sit.
I took her to the doctor and she recomended a surgeon to look at it she said It would be a samll incisition and nothing more.
The surgeon called me from the hospital to tell me that he could not make it to his office due to a emergency surgery.
He told me to bring her to the hospital and he would see her there.
Once he saw her he suggested emediate surgery.
He tlaked about visiting nuse and all this stuff to tell you the truth I was totally overwelmed.
She had her surgery and he said she has a lot of pus and he could not believe she tolerated the pain.
When he took the dressing out I was in shock! She had a deep hole that reached her spine which I can clearly see.
it was about the size of a lemon wide.
He said it may come back she was on her senior year a missed just about everything.
4 months after the wound finally closed but she was still complaining about the pain.
He said she looked fine and she could attend college three months in to college she went in the emergency room where they cut her skin sorroundings and opened it so that it can close correctly he thought she had a pocket but the cyst was back.
The doctor saw her again and this time cut her entire rear end to make sure he got it all. She got 3 mayor infections after surgery I thought she was going to die on me. She stayed in the hospital for a week.
This time I could see her spine complete open. Another 5 months and no college or refund. She complained again and had the doctor heard I was looking for another doctor so he sent her for surgery with a plastic surgeon.
this was the worst surgery pain wise she ever had.
To top it off the dam thing opened up from the inside and parts of her skin from the inside were hanging out.
He surgested onother surgery and it took hours and 4 of the hospital top surgeons to make sure he was doing it right.
She is in college now again.
Guess what its back!!
She doesn't want surgery I dont blame her I don't know what to do I lost my business and my contracts she lost her first year of college and now may loose another one because she can hardly sit.
I dont know what to do.
Help me please!!!!
In Reply to: Pilonidal Cyst posted by Julia on October 02, 2003 at 19:03:23:
What a nightmare. This is from Dr. Stoll's Archives although you know all of this after what you have gone through.
Pilonidal Cyst Walt's Sebaceous Cyst Q&A Archive Pilonidal Sinus Self-Help Page by Wayne
A special kind of cyst/abscess that occurs in the cleft between the buttocks due to nidi. Forms frequently in adolescence after long trips that involve sitting. After surgery, an inflated donut needs to be placed properly when sitting to keep all pressure from the area of the tip of the tailbone to prevent nidi from popping up again.
The first surgery for a Pilonidal Cyst problem is normally done with the primary closure. This has about a 50% rate of recurrence among even the best surgeons. There is a 70% failure rate for the second surgery, and a 90% failure rate for the 3rd surgery. The failure rate is NOT due to the skill of the surgeon (except in the case of an real butcher) but due to the congenital remnants of the skin tissue which NO ONE can determine before or during the surgery. After the first recurrence, most surgeries are left open to heal by "secondary intention". This is mainly because it would not have recurred unless there was a much wider distribution of "nidi" than was originally allowed for. SO, the amount of tissue removed is much wider. So wide, that it would take a skin graft to cover the wound. Since any "nidi" trapped by THAT surgery would destroy the skin graft, surgeons opt for the safest approach which is closure by secondary intention.
Prevention suggestions for an infant with a Pilonidal Dimple: He/she should probably avoid horseback riding and be sure to use hair remover every 2 weeks starting just before puberty --- forever. Sitting for long periods (especially on hard surfaces) is something he would be wise to avoid.
The single most important thing, for preventing new flareups, is keeping from putting pressure on the spot. This is what the donut is for.
Next, the most effective thing is to apply a hot compress to the site.
In Reply to: Pilonidal Cyst posted by Julia on October 02, 2003 at 19:03:23:
Tell your daughter that she's not alone in going through this. I have been there and so has my sister.
I am 24 now, but when I was fifteen, I noticed that when I sat down, it felt like I was sitting on a rock. I looked back there and there was a hole the size of the tip of a needle. Well, it got bigger, and my mom took me to the doctor. The doctor discovered there was another hole above it, and a very teeny one opening up just below it. It was like a nightmare.
Anyhow, the doctor ended up doing an in-office surgery (9 shots in the rear-end). Well, of course, come the time it was supposed to be all healed up, it was not. The doctor found more holes, and did another surgery, and swore she got it all. Well, I thought this one worked, and then a couple of weeks later, I sat down on the toilet, and I saw blood pouring into the toilet -- very scarey. It turns out it had just temporarily closed itself and had not healed right.
So finally, the surgery that worked: The doctor suggested that I have what she called a Z-Plasty, in which they pretty much reconstruct the crack of your rear so that it is not so deep and would not rub so much. It is a full fledge surgery, and they stitched it and everything. Other than occasional soreness (very slight) after sitting all day during the first couple of years, it has been fine. It's actually still numb in some spots.
Even though I have a scar (looks normal through pants, but I can't wear a thong bikini in public), it was definately worth it. Especially every time I read other people's experience with the cysts, it makes me grateful.
My sister (just weeks after I had my Z-Plasty) started having pain as well on her tailbone. So the doctor just went ahead and gave her a Z-Plasty (which, when I think about it now, might have been a bit too soon for such a permanent surgery because they hadn't tried anything else), and she ended up getting a bacterial infection, so they just had to drain fluid through the stitches. But both of us are fine now. It brought my sister and me closer together, and we both have the same scar.
Tell your daughter that I'm so sorry she had to have this problem. I felt like such a freak of nature when I had it because my doctor told me that only "hairy" people usually get this, and that it was amazing to him (I had a guy doctor and a girl doctor) that I was so unhairy. The doctor that did mine (the lady) was doing it the first time and being supervised by the male doctor who had done 500 of these surgeries in the army.
I still don't know if it was the *best* decision, but at the time, it seemed like it was the only decision to make. I worried about the scar and that my future husband would find it weird, but he loves my whole body like it is (and any guy worth keeping will feel that way). You just have to explain it *REALLY* bad so that when he finally sees it, it won't look as bad as he pictured it :) But really, I can wear most thong panties, and I actually like wearing them because it covers up most of the scar (only pinkish is showing).
Anyway, I just wanted to share my story so that your daughter will know that there is a surgery that worked for me when I thought it was hopeless (though it's permanent). If she has any questions that I might be able to help her with, feel free to ask.
Take care :)
In Reply to: Pilonidal Cyst posted by Julia on October 02, 2003 at 19:03:23:
Julia-I am so sorry for your daughter. I know exactally what she's going through. Go to the website www.pilonidal.org
It is a site designed specifically for pilonidal's and there is tons of information there for you both!
XOXO
Cathy
In Reply to: Pilonidal Cyst posted by Julia on October 02, 2003 at 19:03:23:
Hi, Julia.
Listen to Sally.
I wish she had known what is in the archives about this before getting on this treadmill.
Let us know what you learn. There are those who are recommending a "tush cush" in place of a donut but I have had no experience with them.
Walt
In Reply to: Re: Pilonidal Cyst posted by Sally on October 02, 2003 at 22:52:19:
Thanks everyone for all the advice.
I have read the archives from before her first surgery, i have sugested the tush cush and no going there with a teenager.
I will keep you all posted thanks again.
:)
In Reply to: Re: Pilonidal Cyst posted by Cathy on October 03, 2003 at 07:44:18:
Ive been there. I guess I have done my search.
Thanks.
:)
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