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Dear Dr Stoll:
I have had either the same cyst removed 5 times or 5 different cysts removed. The last was removed 9 years ago. I have since given birth to three bouncing baby boys. The last being March of 2002 and I am still breast feeding. I had all types of removal procedures and the type that seemed to last longest for me was "leave open to heal from inside out." This takes months to close and years for the scar tissue to be solid instead of granule. I am feeling TERRIBLE and started running a fever this morning with the telltale (no pun intended) burning pain. I have called my GP to schedule an appointment and feel my condition is getting worse my the hour. With my first cyst I passed out from infection at home alone (very scary). When dealing this time, what questions should I be asking my doctor? What type of tests should I ask for and what could other issues be? I was reading about Hemonigoma and I could not find out much about this. My father has a history of melanomas and my mother is a diabetic. I would assume that there are long term health issues with having so much chronic infection. Should I continue to nurse my son. Everytime this condition slams back into my life it is very emotionally devastating and now that I have small children to take of I am concerned about my strength and health. Knocked down but not out, Lisa
In Reply to: Pilonodal cyst back after 9 years and 3 babies posted by Lisa on August 16, 2002 at 14:33:10:
Have you read the archives on this web site on Pilonidal yet? You should really go through them before you think about having surgery again. Dr. Stoll does not recommend having surgery as, you know, it's a complete waste of time, it doesn't last and can make you worse than you were before.
There's a lot of information on how to treat the cyst and cause yourself the least amount of pain. Start from the oldest posts first, he usually posts what to do first and then points people to look in the archives.
In Reply to: Re: Pilonodal cyst back after 9 years and 3 babies posted by Beth E. on August 17, 2002 at 01:55:14:
Thanks, Beth E.
Sorry for the misunderstanding. Surgery sometimes is necessary even with the 50% risk of possibly making things worse.
Namaste`
Walt
In Reply to: Pilonodal cyst back after 9 years and 3 babies posted by Lisa on August 16, 2002 at 14:33:10:
Thank you Dr. Stoll. Too many times and I'm sorry sometimes on this site people put the fear of surgery into someone. I know that you always recommend learning as much as possible before making the surgery choice. It's not best for everyone but surgery has helped alot of people.
The only other thing I wish is that the 50% rate not be used. It's not proven, no long term recurrance rate as ever been researched. And to use a 50% rate based on what you see on this site is very misleading. However if you know of some research that have been done and proven the 50% recurrance rate then please tell me. So far I have found none.
Lisa, I can understand your frustration. I've had two surgeries and four lancings on my pilonidal. The last surgery was June 19th and has so far been successful. But lets face it the real question is how will I be in lets say ten years. I wish I knew. My flare-ups were very painful and I ran fevers alot. I even fainted after one of my lancings. I would check with your doctor about the breast feeding I know that these are big infections that get into your bloodstream I wouldn't think it would hurt your baby but better to be safe.
As for your past surgeries. What type of doctor did you use? Colon/Rectal? Also since you may have a nest of cyst inside and thus make surgery tricky there is the flap surgery. I don't know how your flare-ups are and to me that is what determines whether you have surgery or not or if you have numerous surgeries. For me there is no living with it option. But I don't know how yours act so maybe living with it is an option for you.
I do suggest you read the achives you can learn alot. But also a site with lots of information is www.pilonidal.org check it out.
Good luck
just another suffer
In Reply to: Re: Pilonodal cyst back after 9 years and 3 babies posted by just another suffer on August 19, 2002 at 12:19:22:
Hi, Just.
Since I learned the 50% rule in medical school and observed the same results in my 30 year practice, I have not bothered looking up research articles. Remember that that 50% includes a lifetime cure. If there is EVER a recurrence, it has been a failure to "cure".
I do find it interesting, though, that there seem to be no studies, other than that of surgeons touting their particular "innovative surgery"---which studies have to be suspect until someone else replicates them. How many of them do you see replicated? If there was actually a successful surgery, that worked a lot better than 50%, don't you think everyone would be doing it? Who will gain by doing such a study averaging the long term results of all surgical approaches to this condition?
Until I see replicated studies, showing the superiority of one approach, I will continue to report what I was taught and what I saw in my practice.
Namaste`
Walt
In Reply to: Pilonodal cyst back after 9 years and 3 babies (50% cure rate.) Archive posted by Walt Stoll on August 20, 2002 at 08:48:49:
I have not found any other source of medical information on the Pilonidal that says anything about a long term recurrance rate. I've seen alot of information on post op infection rates but not long term rates. And you may have a point in that if no research has been done to prove or disprove the 50% rate doesn't mean it's incorrect or for that matter correct. That's one of my biggest points to the med profession on the Pilonidal is that we need better documentation and research on it.
I have seen your opinions to other people and I've always been impressed with your decision to educate people on the Pilonidal before making any decision on what to do about it. The only thing I've ever had doubt about is any long term recurrance rate yours or anyones. But I've only ever found yours.
As for successful surgery there is alot of them, unfortuately the people who come on your site and other sites are suffering now, alot do not come back years after their surgery to give you or anyone else updated information, I'm sure some do but to make a comparsion to the ones who are suffering now it just wouldn't be an accurate survey.
As for the doctors giving information on success rates based on patients would also not be accurate based on the some reasons.
So the fact that there really has never been an accurate study of recurrance rates on Pilonidals after surgery the best thing for any doctor including you is to tell people that.
The fact is however accurate that everyone's Pilonidal's can act a little different. If someone has a open draining cyst that only gets infected and drains every few years doesn't mean they should have surgery. If someone has a cyst that doesn't open several times a year has to get it lanced goes has several months of healing alot of pain can't work... they would be better off having surgery.
That's just my thoughts as a person who suffered from a cyst.
just another suffer
In Reply to: Re: Pilonodal cyst back after 9 years and 3 babies (50% cure rate.) Archive posted by just another suffer on August 20, 2002 at 11:26:52:
Thanks, Just.
I wonder why medical schools still teach the 50% recurrance rate. I also wonder why my personal clinical experience matches that rate?
I have not based ANY of my statements upon the numbers presented on this website. That would be foolish since they are obviously self-selected for those who are still having problems. I would hope that you would give me at least that much credit.
Immediate post-op statistics are especially spurious for this condition. Whoever does the definitive study is going to have to do at least a 30-40 year followup.
Namaste`
Walt
In Reply to: Pilonodal cyst back after 9 years and 3 babies (50% cure rate?) Archive posted by Walt Stoll on August 21, 2002 at 09:00:47:
I'm sorry I really don't mean to discredit I really don't. I think you do wonderful things for people on this board. Giving them a place to start is so important as it was for me.
If you were taught that in med school it must have come from someplace. However in my experiance alot of doctors do not know how to handle this kind of cyst and they send people off in so many wrong directions. It's a shame.
We both agree not enough study has been done on this to give any rate a solid background but you can only give people what you've experianced. I just know for me when hearing the 50% rate scared me from surgery and surgery was and is my only option. Will I be saying that in 10 years. Yes because if I have two to three lancings a year with packing surgery is actually the better course than just more lancings. Even if it only lasts two five or ten years thats better than so many lancings.
Thanks for your time in answering this you are very busy I please I didn't mean to be insulting or anything. I hope you don't mind a little doubt on the 50% rate that's all.
Thanks
just another suffer
In Reply to: Re: Pilonodal cyst back after 9 years and 3 babies (50% cure rate?) Archive posted by just another suffer on August 21, 2002 at 10:12:06:
Hi, just.
I enjoy honest doubt. That is one of the ways we all learn.
For the 50% for whom surgery is the answer, it was one of the best decisions of their life. For the rest, it may be one of the worst. Remember, you are not cured of this until you die of old age without a recurrance. Sad but true.
I invite disagreement so long as the person does it honestly and with some facts or clear thinking behind it. Sometimes I will be wrong and sometimes I can help the person see where they are missing facts.
Namaste`
Walt
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