Is cleft lift really the best/only option?

#1
Hello everyone. I've been a pilo sufferer for over 5 years now. I've had 3-4 lancing/draining and recently consulted with a few different surgeons. After much research, a lot of people say cleft lift is the only way to go. However, I have also seen some posts about people not being happy with their cleft lift and say and say they still have soreness/issues even with their cleft lift several years later. I'm someone who loves to work out and be active and sometimes it seems like no matter what option I go with, I will always have an issue with the area of the disease.

I also wasn't thrilled to hear from my surgeon that my cleft left scar would be 6-7 inches long. That's a pretty big scar and honestly kind of worries me...I also hear of pit-picking (which many say has a low success rate, some say it works) and even people saying to try laser hair removal.

It's all just very overwhelming honestly and I don't know what I should do. I think my biggest fear is getting a cleft lift surgery and then still having issues with just trying to live my life.
 
#2
Hi there!

I am so sorry you are dealing with this. In my opinion the cleft lift is the best option. As long as you get it done by someone who is extremely experienced. That is key. A lot of people on here have had great success with this surgery when done by the right person. I had my cleft lift a little over two weeks ago and haven’t felt this good in almost a year! I had virtually no pain and the recovery was very easy. I had a failed surgery in April of 2018 and lived with an open wound for 9 months. I honestly wish I would have done the cleft lift sooner. Yes, the scar is long, but its much better than the constant fear of the cyst coming back and having to go through more surgeries. There are other procedures that are successful for some people, but the cleft lift is very reliable and addresses the anatomy that causes the disease to begin with, so recurrence is far less likely and rates of complications are lower than other procedures. I flew from Michigan to Wisconsin to have it done by an expert who has been doing the cleft lift for 25 years with a 98% success rate. It was well worth the travel, and people have traveled from all over the country to get it done by him. His name is Dr. Immerman. Here is a link to his website that has a ton of information about treatment options and the cleft lift procedure.

http://pilonidal.net

Here is another link to Frequently Asked Questions that is a great resource. There is also a link to photos of what the scar looks like after the surgery.

http://pilonidal.net/faq/

My advice is to do as much research as you can and don’t be afraid to travel to get the cleft lift by the most experienced surgeon you can find. I truly believe my issues with this are over and I am so happy with the result! Yes, people have had success with other procedures, but I was not one of those people and the pain I went through from a failed surgery was not worth it to me. Please feel free to send me a direct message if you have any questions about the surgery itself.

Katie
 
#3
I second what Katie has said! I also had the same reservations due to being a police officer and spending the majority of a 12 hour shift sitting in a car with lots of pressure on the area due to the ballistic vest and duty belt. I asked Dr. Immerman about this and he told me he cannot think of any of his patients who are having continued discomfort in the area. I am 4 days post operation and it is sore, but not near as bad as I expected. I just sat in a car for 5 hours on the way home and even that wasn’t terrible. Dr. Immerman was also very happy with me that I did not have any other surgeries done, but also got onto me for not seeing him 5 years ago. I had four pits in my midline from waiting so long and he said the tissue underneath where the sinus used to be was very inflamed. He said if I had waited longer the tissue could have eroded and left me with a large open wound in at the bottom of the cleft. I am from Missouri and both Dr. Immerman and OakLeaf Surgical Hospital were in-network with my Anthem Insurance.
 
#4
Hi there!

I am so sorry you are dealing with this. In my opinion the cleft lift is the best option. As long as you get it done by someone who is extremely experienced. That is key. A lot of people on here have had great success with this surgery when done by the right person. I had my cleft lift a little over two weeks ago and haven’t felt this good in almost a year! I had virtually no pain and the recovery was very easy. I had a failed surgery in April of 2018 and lived with an open wound for 9 months. I honestly wish I would have done the cleft lift sooner. Yes, the scar is long, but its much better than the constant fear of the cyst coming back and having to go through more surgeries. There are other procedures that are successful for some people, but the cleft lift is very reliable and addresses the anatomy that causes the disease to begin with, so recurrence is far less likely and rates of complications are lower than other procedures. I flew from Michigan to Wisconsin to have it done by an expert who has been doing the cleft lift for 25 years with a 98% success rate. It was well worth the travel, and people have traveled from all over the country to get it done by him. His name is Dr. Immerman. Here is a link to his website that has a ton of information about treatment options and the cleft lift procedure.

http://pilonidal.net

Here is another link to Frequently Asked Questions that is a great resource. There is also a link to photos of what the scar looks like after the surgery.

http://pilonidal.net/faq/

My advice is to do as much research as you can and don’t be afraid to travel to get the cleft lift by the most experienced surgeon you can find. I truly believe my issues with this are over and I am so happy with the result! Yes, people have had success with other procedures, but I was not one of those people and the pain I went through from a failed surgery was not worth it to me. Please feel free to send me a direct message if you have any questions about the surgery itself.

Katie
Hi Katie! Thank you for your info. Do you mind if I ask a couple of questions? I will be in a car for over 4 hours if I go through with cleft lift surgery. I'm nervous to be sitting in a car ride for several hours just a day or two after surgery. How was your pain/discomfort 1-2 days post op? How long after surgery did you go on a plane?
 
#5
I had no pain at all, just minor discomfort when sitting. But it wasn’t bad enough to keep me from doing it. Dr Immerman usually injects a long acting numbing medication into the incision that keeps it numb for up to 72 hours after surgery. I was able to sit for all of my meals the day after surgery with only a small amount of discomfort. I did stay for an entire week, so I can’t speak for traveling right afterward, but I do know people on here who have driven 5+ hours home the same day of their surgery and not had any problems. I think it’s good to expect some minor discomfort but I don’t think you will have any issues. Also, don’t worry about the incision. The drive won’t hurt it and I’m very confident you would heal just fine! The day I traveled home (7 days after surgery), I had a 2 hour drive and a 1.5 hour flight. I wasn’t exactly comfortable but I was actually in more pain with my open wound on the way there than I was on the way back. It’s definitely manageable. I also had absolutely zero discomfort when walking around the airport or hotel. The good news with driving is you are able to stop and take a break to walk around as needed! The discomfort always went away when I stood up and moved around a little bit.
 
#6
I had no pain at all, just minor discomfort when sitting. But it wasn’t bad enough to keep me from doing it. Dr Immerman usually injects a long acting numbing medication into the incision that keeps it numb for up to 72 hours after surgery. I was able to sit for all of my meals the day after surgery with only a small amount of discomfort. I did stay for an entire week, so I can’t speak for traveling right afterward, but I do know people on here who have driven 5+ hours home the same day of their surgery and not had any problems. I think it’s good to expect some minor discomfort but I don’t think you will have any issues. Also, don’t worry about the incision. The drive won’t hurt it and I’m very confident you would heal just fine! The day I traveled home (7 days after surgery), I had a 2 hour drive and a 1.5 hour flight. I wasn’t exactly comfortable but I was actually in more pain with my open wound on the way there than I was on the way back. It’s definitely manageable. I also had absolutely zero discomfort when walking around the airport or hotel. The good news with driving is you are able to stop and take a break to walk around as needed! The discomfort always went away when I stood up and moved around a little bit.
Thanks so much Katie, for sharing your experience with me. Did you require any help from someone post op care to the surgery site such as changing gauze, any packing, etc? I have parents who are willing to help but of course things like that are embarrassing for me and I'm hoping I will be able to do these things myself. Oh, and how long did they make you leave your drain in for? I'm kinda worried about walking around and in and out of cars with a drain attached to me, Lol. Just some questions I thought of today. Thanks again! :)
 
#7
I did have my fiance there to help but there really isn't any wound care required. The incision will be covered with gauze and tape for the first 24 hours, so he did help me take that off so I could shower for the first time. If I had to, I'm sure I would have been able to remove it myself. I was just wanting to be extra careful because it was very numb and somewhat hard to see/reach. After that, I was able to cover the drain insertion site myself with a small piece of gauze and tape and keep gauze over the incision with just underwear holding it on. After about 4 days, you don't need to cover the incision itself at all, as long as it doesn't have any drainage (which is very rare). He also recommends you tuck a piece of gauze between the butt cheeks at the bottom of the incision for about 4 weeks after surgery. I was also able to do that myself. You should be just fine if you don't want your parents helping with your incision. It's nice that you know they are willing to help though in case something comes up. The drain does require "stripping" which is a technique to keep it from clogging. I was able to do this myself (I am a surgical ICU nurse and have a lot of experience with these drains). But doing this doesn't require anyone to have to look at the incision itself. So your parents can help you with that, or you can learn to do it yourself. It is very simple and easy to do. The drain is usually in anywhere from 5-7 days. It depends on the amount of drainage you have. Mine was removed five days after surgery. It is held in with a stitch, and also a piece of tape over the tubing itself, so it would take a lot more than a small tug to pull it out on accident. I think you will be just fine. I rolled around in bed with it in, walked around the hotel, etc. I would keep it tucked into the side of my underwear against my hip or in my hoodie pocket. They will give you hospital mesh underwear to wear after surgery that is very stretchy and not tight around the butt. One time I had the drain sitting on the counter and walked away without picking it up. It fell off of the counter and swung from my butt...LOL nothing happened and it stayed in just fine. During showers, I would just hold it in one hand. If you want to see photos of what the incision looks like immediately after surgery, and the drain, you can private message me and I'd be happy to share them with you.
 
#8
I third Katie! My son had a cleft lift done in February of last year with Dr. Jeffrey Sternberg in SF and he also has a success rate like Dr. Immerman. I think that was key to deciding to go forward since he had had a failed surgery from another surgeon a year before (not cleft lift). My son also developed an infection in that area, which complicated the situation, but Dr. Sternberg was able to address, unlike the other doctor. Some surgeons claim to do the cleft lift, but do not do it properly, so make sure you do your research. My son said his recovery from the cleft lift was so much better than the surgery he had prior and his scar is really not that bad at all. He is so happy to finally not have to worry about the drainage anymore! Good luck!
 
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