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I have had a pilonidal cyst for a few years now - I'm 24.
I have been doing hot compresses for about 6 months now, and they are the only thing that seems to keep the openings down to a managable size.
I have 2 openings about half an inch each.. but they have been bigger than an inch each before.
I read the archives but there are just 2 questions I can't seem to figure out an answer for.
1) Should I do hot compresses until the openings are as small as possible without closing? As part of a daily routine? Or just when they become painful/inflamed/drain a lot? One time I got them down to less than dime size.
2) The "tunnel draining" that the cyst does, the "tissue damage". I have read the horror stories about when the surgeon opens up the cyst and there are gaping tunnels going all the way to a person's spine.
I'm just wondering how this cannot be a major problem, especially if I am to let this go on for the next 50 or 60 years of my life. Will hot compresses slow this tissue damage at all? Is there anything that can slow/reverse the tissue being eaten away inside of me? As long as it's draining will it not increase in size?
I read Walt's post about how it's ok to go for a lifetime with this thing, I am just wondering if I can have some advice about what makes the cyst not tunnel deeper and deeper and hit vital organs etc.. or why this isn't an issue?
Sorry for such a long post,
Brandon
In Reply to: pilonidal-no surgery-long term posted by Brandon [1528.4] on January 13, 2004 at 11:09:12:
Personally, Brandon, I would have them removed. At this point it sounds like the tunneling could be extensive and the surgeon must remove all the tunnels, sinuses, and cysts to hopefully rid you of this problem. The longer you put off surgery, the more it tunnels and causes problem. JMO Check out www.pilonidal.org for more.
In Reply to: Re: pilonidal-no surgery-long term posted by Anne [201.29] on January 13, 2004 at 11:32:07:
Really? Even though I have only had serious pain once in the past 5 years?
I've been on pilonidal.org and it seems like they ALL had surgery.. that's why I was coming back here for some advice because I know Walt has some different ideas on that.
Can you really tell how extensive the tunneling has become by the size of the openings of the wound?
Thanks... Brandon
In Reply to: Re: pilonidal-no surgery-long term posted by Brandon [1528.4] on January 13, 2004 at 11:42:41:
Brandon... an MRI using contrast could give an indication of the extensiveness. Some people on the board at pilonidal.org could help give more detail as I haven't had it done. You might hear that you'll never know until a surgeon opens you up. But I know there are a few people there who have had the MRI w/contrast and might tell you different. I'd start a thread there "MRI w/Contrast"... good luck.
In Reply to: Re: pilonidal-no surgery-long term posted by Brandon [1528.4] on January 13, 2004 at 11:42:41:
I am a member of pilonidal.org and have been for over 2 years.
I had an MRI w/contrast and all it showed was that I did infact have a cyst. The surgeon had no idea how big it was or how many tracts it had until he opened me up. It ended up being quite a large cyst with many tunnels! I know it seems like we have all had surgery and we push it but we don't try and force our beliefs on anyone. If you felt like that there please accept our apologies. I know we don't intend for that to happen.
In Reply to: pilonidal-no surgery-long term posted by Brandon [1528.4] on January 13, 2004 at 11:09:12:
If it doesn't hurt, I would NOT have the surgery. I have had mine since 1996 and I am able to control it nicely. The surgery is horrible if left open (I am told) and then the odds of it coming back are very likely. Good luck :)
In Reply to: Re: pilonidal-no surgery-long term posted by Hope [1371.1] on January 13, 2004 at 17:32:12:
Hi, Brandon - although I have not had a pilonidal cyst, I do know that Dr. Stoll recommends tht you leave it alone if it is not extremely painful. Some have had them successfully removed, but I think there are very few of those. Be sure to read about real people's experiences with this operation before you decide one way or the other. Good luck!
In Reply to: pilonidal-no surgery-long term posted by Brandon [1528.4] on January 13, 2004 at 11:09:12:
Thanks, Brandon.
So long as the openings drain they will not "tunnel". It is the pressure of blocked tracts that causes tunneling.
If I had this, I would only do enough soaks to keep the openings draining.
Remember that one of the complications of unsuccessful surgery is that the missed tracts will get blocked by scar tissue and so begin tunneling.
Hope this helps.
Walt
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