Hello all, After benefiting from the information posted on this website so much, I feel compelled to tell my ongoing story and to keep this thread updated as I continue my battle. Please feel free to ask me any questions you have about pilonidals. This first post will probably be a little long so bear with me. I'm a 26 year old male and have had two previous surgeries which failed to cure me of my pilonidal problem. Like most others, I knew I had a problem after seeing blood on toilet paper (May 2006). I immediately went to the doctor who diagnosed me with a pilonidal cyst and referred me to the local surgeon (small town in the southern USA). The surgeon confirmed the existence of a pilonidal sinus and said he could perform an open excision surgery, but I would have to remain in the hospital for up to 5 days afterwards because packing the wound would be 'extremely painful' and he wanted experienced nurses to do it for me. Needless to say I got a second opinion. The surgeon I saw next laughed when I told him what the first surgeon had told me, and said he could remove the cyst and stitch it up (closed excision) and that I would experience zero pain. He was correct. I let him perform the surgery and he removed the cyst, stitched me up, and I was healed within 7 weeks. Zero pain. However, 2 years later I again noticed blood on the toilet paper. At this point I knew the cyst was non life threatening so I waited a few years (2011) to have the surgery. I was living in a different town at this point in my life and again chose a local surgeon to perform the surgery. He told me that the previous surgeon must not have gotten all of the cyst and that's why it recurred. Again I was treated with a closed excision surgery, this time utilizing a drainage tube. After a month everything seemed well and that I was on my way to healing. The surgery was performed in December 2011. By the middle of February 2012 I noticed blood on toilet paper and intense itching in the area. The surgeon told me it was just where a small area was slow to heal and for me to not worry about it.... This is where the story gets interesting. In the beginning of March I moved to China, pursuing a dream of mine to travel the world. The surgeon knew about my plans and assured me I would be okay and that everything would heal fine. While in China I was absolutely okay for the first month when I noticed an extreme amount of clear fluid coming from the wound. I was able to take a picture of my wound which immediately freaked me out and made my way to the best surgeon in city I could find. He told me the cyst was back and that he could remove it, but I would have to stay in the hospital for a week. A week in a Chinese hospital with no close friends or family to take care of me...No thanks! I bought a one way ticket back to the USA, bought some individual insurance and scheduled an appointment with a trusted surgeon in my home state. This surgeon recommended an open excision surgery which would have to be packed daily. I accepted and scheduled the surgery (June 13, 2012). However, during a night of critical thinking about my predicament (something I should have done much earlier!) I decided to scour the internet for as much information as I could find about pilondal cysts and the people who are suffering from them. I was amazed to see how many people have had difficulty resolving their issues, and realized that I was one of those people! I read intensely about the cleft lift procedure and even phoned Dr. Rosengart in Pennsylvania and Dr. Bascom (cleft lift inventor) and talked with them personally about my situation and the benefits of cleft lift. I then scheduled an appointment with my current surgeon and asked him questions about he cleft lift, which he absolutely knew nothing about. I was amazed. How could long time practicing surgeons not be educated on the latest surgical methods, especially seeing how they were producing positive results. There is no lack of scientific research and articles in medical journals about the cleft lift procedure. Anyway, with my new found knowledge of the cleft lift procedure I hastily cancelled my open excision surgery and scheduled an appointment with a cleft lift practicing surgeon in Nashville named Dr. Hueneke. He is a 5 hour drive away. My consultation is tomorrow, June 19th 2012. Besides wanting to see if I'm a good candidate for cleft lift, I intend to ask him his approach to treating pilonidals and what he knows of the recurrence rates for his patients. I will document my consultation, potential surgery, healing, and future experiences with this disease, cured or not cured. This website has been such a big help for me and I want to help others who are going through this. Leist22 LESSONS LEARNED SO FAR: 1) Don't blindly trust your surgeon. Empower yourself by learning about this disease and treatment options from online resources, medical journals, and talking with knowledgeable surgeons. 2) Pilonidal cysts will not kill you. Do not rush into excision surgery unless you MUST. Take time to educate yourself so you can make informed decisions on how you want to solve your problem.
Thanks for sharing your story. I will be thinking about you tomorrow through your journey and waiting to hear what you learn. Safe trip.
I'm really glad you chose to post your entire story! I'm also glad you're taking the best steps toward getting the cleft lift and getting this whole mess taken care of. A lot of our members' posts are over time which may confuse new members. Your one post is able to put everything into one and include one of the most important things pertaining to Pilonidals: Do not blindly trust the first opinion of any doctor dealing with this. Especially if any type of excision is suggested. My general surgeon was just that: a general surgeon. He did what he knew to do with the excision, but he had never even heard of the cleft lift until I brought it up. He originally told me I would heal in 6-8 weeks maximum. He also kept telling me that I was healing well etc. Then, my colorectal surgeon, 4 months post-open-excision, (who did my cleft lift) told me that I would have been lucky to heal from that in A YEAR even. Take everything doctors/surgeons say with a grain of salt and never ever hesitate to get a second opinion. Specialists (especially colorectal) will know more about Pilonidals than any regular office doctor or general surgeon will. And do not ever stay with a doctor or surgeon who seems any bit unsure about something being best for you. If they are not sure that any surgery is best for you or that they can perform it well, then the chances are it's not and they can't. Leist, I really wish you the best of luck with your cleft lift route and I hope/know you will be very happy with the results. Having had a failed open wound when I was assured such great results, I can't even imagine your situation with 2 failed closed wounds. Just keep us updated like you say because we need more of these full stories since so many people find their answers and leave!
Update 6/21/2012 I had my consultation with a plastic surgeon who had performed cleft lifts for the past 10 years. He examined me and is concerned because my cyst is located very low on the cleft, with a few centimeters of the anus. He doesn't know if he'll be able to get enough skin below the cyst to pull the flap for the procedure as he has never seen a cyst this low before. He has sent an email to Dr. Bascom inquiring about what should be done. He will be getting back to me next week. Due to the amount of drainage and pain caused from skin chaffing because of the drainage, I'm eager to get on a path toward healing. I still have an option of going with the open excision surgery if it turns out I'm not a candidate for cleft lift. I really am ready to get this thing out of me!! Question: anybody had a cyst low on the cleft and have healed? Any advice?? Thanks guys!
Just wanted to check in and say I am still holding out hope that Dr. Bascom will be able to give advice to your surgeon on how to perform the surgery for you. There have to be others who have had their cyst located low the way you do and I'm hoping they come forward with some advice.
The doctor is Mike Hueneke in Nashville. He is a plastic surgeon who has been performing successful cleft lifts for the past 10 years. He has just never seen one as low on the cleft as mine is. He is contacting Dr. Bascom in Oregon for advice on how to handle my condition. Feeling impatient, I contacted Dr. Rosengart (leading Pilonidal cyst surgeon) in Pennsylvania and asked him his opinion on my cyst being so low in the cleft. He said he has done many surgeries for patients who had cysts low in the cleft, and even involving the anus. He has had good to excellent results for all of them, although patients with the disease nearer the anus require more time to heal and a more vigorous approach to keeping the area maintained until healing. I'm considering flying to Pennsylvania to have him look at me and possibly perform the surgery, however there will be drawbacks to this since I will not be able to see him rapidly if needed and checkups could be expensive (plane ticket, hotel room, etc). So I'm in a predicament. I'm having daily/almost constant drainage from this thing and cannot perform basic activities such as lying on my back (due to drainage)! I am eager to get this thing out of me ASAP! I have a surgeon close to home wanting to perform an open excision (I've previously have had 2 closed exision surgeries which failed). I have a plastic surgeon who seems very knowleadgeable, but is questioning his procedure for a cyst close to the anus. And I have a VERY skilled and knowleadgeable surgeon in Dr. Rosengart who is far away. I guess I could spend some more time looking around a little closer but I'm eager for removal and the closest (assuming I go to Nashville) is 4.5 hours away. How would you guys feel about having the procedure done and then flying home a week later and not having your surgeon in the immediate vicinity post operation? I guess I could spend a few weeks in Pennsylvania as I suspect that is the time frame when the surgical site will be most dynamic post operation. But as far as monthly check ups go I'd either have to pay for plane tickets or send him pictures. Anyway...thanks for the advice guys!
Please contact Dr. Pelta in Atlanta just to see his opinion/if he thinks he could help you. When I had my consultation and surgery with him, he was so excited about how high mine was and he also expressed why.. he told me he's had to perform this surgery on people with the cyst much lower. He also explained to me that it required having to take much more skin which will also result in much less crack left. If you see my pictures, I still have a fair amount of a crack left.. But hat should be the least of your worries. What you need is to get this taken care of and I'm very very serious when I say that I hope you can get this cleft lift to work rather than getting an open wound that will almost definitely have trouble healing if it's low and deep. From the way that my surgeon made it sound, I believe he can help you and there's definitely no harm in at least trying. Plus Atlanta will obviously be closer to you than some other options. If you do have to go to PA, I believe it would be worth it. From what I've heard about Dr. Rosengart, he sounds very helpful and like he would work with you to assure you the best healing and post-op assistance. Good luck.
I would say that going to PA is an option you won't regret. Speaking from experience, I am now 20 days post-op and nearly healed. I had a very low opening and it looks very good. I would not be in this position without the help of Dr. Rosengart. I suffered for 1.5 years after a previous failed closed operation. In just a few days I should be able to begin running, working out, and swimming again (among other things). He will stay in touch with you via email as he has many patients from great distances. I am a 4 hour drive away so I stayed for 3 nights in a hotel about 1/2 mile from the hospital (on the U. of Pitt campus). You can get a hospital rate at almost any hotel in the area to curb your expenditures as well. Good luck to you.
Update 7/6/12 I had an appointment in Atlanta GA with a colo-rectal surgeon who regularly performs cleft lifts. After looking at my open sinus he said a cleft lift would be what I needed. He also said that most of his patients with disease as low in the cleft as mine heal fully only 50% of the time. He mentioned that Dr. Tom Bascom has been claiming to achieve a 100% success rate. This was intriguing. The ATL doctor told me to roll up some gauze and keep it over the sinus, so drainage is not a problem for me anymore and I feel like a new man. I talked to a few other highly regarded cleft lift surgeons (not Dr. Bascom) and they agreed with the 50% heal rate for wounds low in the cleft ( I sent them some pictures). I was not very happy with their predictions of a 50% heal rate for my predicament so I finally contacted Dr. Bascom's office and sent him my disease history and pictures. Dr. Bascom called me back a few days after from his cell phone to discuss my situation. He told me that after looking at my pictures he was very confident that he could perform a successful surgery and that my wound would heal. He said that there are things that need to be done differently when disease is near the anus, but he has had good success. I told him about what the other doctors had told me and Dr. Bascom said he would be weary of going to them too. I'm guessing that since Dr. Bascom is the son of the inventor of the cleft lift procedure and has performed many many cleft lifts with variations and has seen the disease in all sorts of locations on the cleft, that he is the very best doctor to go to. So I made an appointment with him for surgery next month!!
Which doctor did you see in Atlanta? Either way, congratulations! Traveling so far wouldn't be your first choice but it will be worth it. Good luck and keep us updated
Hi - I'm new on this board, really appreciated reading your story. I've also been dealing with some minor symptoms that make me think I might have the beginnings of a low-cleft pit, and I can also appreciate your problems with drainage (I developed one 11 years ago, had 100% successful surgery but the couple months leading up to it living in a college dorm were NO fun), so this has been very interesting reading for me indeed. Best of luck next month, hope you get it resolved!
Hi leist. We are scheduled for the end of the month, and I will soon start the thread detailing our whole story and the blow by blow of surgery etc. Thanks for asking. Are you scheduled?
He is scheduled July 31st. Here's another coincidence-he was almost scheduled August 7th. We gave him a choice between the two dates figuring either would give him time to heal before school and he wanted to get it done sooner. I guess we'll be going through it together.
hey all, I've had this problem and have put off surgery for years whilst managing the area fine. Last week I finally decided to get the closed excision surgery and the doctor explained that I would heal within 6 days, which was great but as Leist22 explained dont blindly trust your surgeon/doctor. Most of my stitches healed but right at the lower cleft 1cm wide it didn't and yesterday I had to have it packed ( closed excision failed ). The packing seemed to keep going right underneathe the stitches up past my coccyx bone. Its been quite painful but the worst problem is that the packing is right next to the butt hole making it difficult to for me to go to loo (havent gone yet, sorry dont mean to be graphic). Added to this problem every time I go to sit down bent over on the toilet the packing leaks a lot ( the nurse did say this could happen and advised me to take a shower afterwards put some dressings over the packing. I'm wondering if anyone else has experienced this and has got any advice on how to deal with it? I have weeks of this to come, if I come with a way to manage it I'll post my advice. cheers
Saintybalboa - I had an open excision 15 years ago, and the bleeding seemed to go on for the whole healing process. Just recently also had a cleft lift, and again that is bleeding a lot - I guess some people as just prone to lots of bleeding...
saintybalboa, After my 2nd failed closed excision surgery I had tons and tons of bleeding. I was actually living overseas at the time of failure and had to return to the USA to seek treatment. The bleeding/drainage/pain was constant, and it was ruining my life. At that point in time I decided that I was going to give the cleft lift a try. I found several medical papers written by Dr. Bascom in Eugene Oregon about the success of the cleft lift procedure for patients who had the disease low on the cleft (like you). Mine was also right near the anus, almost touching it. I visited 2 surgeons who were listed on this site as recommended doctors who knew the cleft lift procedure. Problem was, they both gave me 50 percent chance of healing. I finally gave in and saw Dr. Bascom. I had the cleft lift procedure performed by him on August 7, 2012. HANDS DOWN BEST DECISION OF MY LIFE! There was minor bleeding a few days post surgery, which is normal. After I came back home (2 weeks after surgery) I had no pain, bleeding, drainage, opening of the wound..nothing. It was healed. Every now and then I have minor itching but that's it. The cure for this disease is in the hands of a skilled doctor. This disease is not incurable, it's not that "some people heal better than others." In my opinion, the ONLY way to go is to have the cleft lift surgery by a very skilled doctor. The cleft lift surgery is not as easy to perform as the normal open/closed procedures, hence why many surgeons choose the older, gruesome methods over the newer, more difficult procedure (even though it works). There is no packing, drainage, wound re-opening, bleeding or pain post surgery. In my case, and credit goes to the skill of Dr. Bascom, whenever I had pain or minor drainage Dr. Bascom would figure out why and solve the problem. It's not OK to bleed from an open wound near your ass, especially after a surgery that was supposed to fix it. In my opinion, I would not go to another doctor in the world other than Dr. Bascom for this surgery. He truly knows what he is doing.
