Looking for advice

wound nurse mom

New Member
Hi all, I am so grateful to have found this site. My 21 year old son had an excision of pilonidal cyst and sinus in August 2019. He had a drain which I removed a few days later as directed by surgeon. I should start by saying I am an RN certified in wound care which makes this so very difficult for me as I can not do anything to make this condition better. Believe me I have thrown all kinds of fancy wound products at this thing..anyway, the original incision dehisced slightly and had a small lower area that would not close. Another surgeon silver nitrated this closed in November 2019...the original surgeon had left the organization and we were left to use the new surgeon who took his place. A few days later we are in the urgent care with an abscess. He was prescribed antibiotics, saw surgeon a few days later and lanced it in his office, ultrasound showed a large underlying abscess, surgeon called seroma from original surgery . Anyway, packed with iodoform gauze, multiple other tricks I had access to and the area still persists. to this day. My son is a junior in college and thankfully he is close to home so I was able to commute to his apartment for dressing changes. This went on and he was told he needed another surgery to open the wound and leave it open which could take 6-12 months to heal. My son is not interested in another surgical procedure to just fail again. We decided to go see a plastic surgeon in our area that i had worked with previously and has had some experience with PD. He assessed everything well, reviewed all options including another excision left open to heal, silver nitrating the sinus until it heals...his main thought was conservative treatment which he and others felt is the way to go about treating this terrible disease. We saw him mid January 2020. He suggested using a piece of rolled gauze between the buttocks to separate and manage drainage until heals by forming scar tissue. We have been doing this faithfully since, 5 weeks later we have no real progress. I will say the lower site has completely resolved and has been closed for about 4 weeks now, but the site that was i and d'd is still draining daily and he is changing gauze multiple times per day as he says "I feel gross." My heart breaks for him and everyone dealing with this disease. I am looking for treatments that have provided the best success rates. I have read alot on this site regarding cleft lift. We live in PA and there is a surgeon mentioned near us that I am considering reaching out to. Dr. Caplan. The area is small, minimal depth and does not probe deep as far as tunneling. My question is do we just wait it out and hope this fills in and covers over and hope for no reoccurrence or would anyone suggest pursuing other options such as cleft lift? Also has anyone tried silver nitrate before surgery with success? I help so many people with chronic wounds every day and this is so difficult for me to not be able to help my own son. i just want to get him what he needs so he can move on to his senior year of college with this as a distant nightmare. Thank you all in advance. My heart goes out to you all. I have spoken to so many people that have dealt with this horrible beast and all had horror stories with months to years to healing with recurrences...
 

KatieMarie

Very Helpful
I am so sorry to hear about what your son is going through. It really is a terrible disease. I am a nurse as well and work in the ICU. Your son's story sounds very, very similar to mine. I had a closed excision in April of 2018. About a week after my surgery fluid started pouring from my wound and they had to remove the sutures to let it open and drain. It eventually healed over but I had a small hole at the bottom that would bother me from time to time. About three months after my surgery the hole started draining fluid. I went back to my surgeon and he told me it was not a hole, just an indent from scar tissue. However, I knew this was wrong because it was painful and draining. I then had an area at the top of my incision open and drain fluid as well. I assumed the two areas were connected and I had some kind of pocket that wasn't healing underneath where fluid was accumulating. For nine months my incision would drain, close, swell with fluid, and reopen. They tried packing it until it closed, using silver nitrate multiple times, and two round of antibiotics. They kept telling me it was not a recurrence of the cyst and was just the original wound taking a long time to heal because "it's in a difficult area". I became so frustrated that I insisted on a consultation with the wound clinic. Their suggestion to me was to have an I&D in the OR followed by hyperbaric oxygen treatments. I was devastated and having another surgery was the LAST thing I wanted to do.

A week before my appointment with the wound clinic, I started reading more on this site about the cleft-lift procedure. I then found multiple scholarly studies online that showed the cleft lift provides better outcomes and long-term healing for this disease. I had also been reading all about Dr. Immerman and his experience with this procedure, as well as amazing reviews of him on this site. I reached out to his office and was scheduled for surgery a month later. I traveled from Michigan to Wisconsin to have it done on January 24th, 2019, and my wound was actively draining on the day of my surgery. Dr. Immerman performed my cleft-lift and I have been perfectly healed ever since. It was an almost painless recovery compared to my first surgery and I was back to normal activity within two weeks. My incision had no issues healing and I am so happy I decided to have it done. I would go back to Dr. Immerman in a heartbeat if I had to. He informed me that I did have a recurrence and what they were planning to do would not have healed my wound because it does not address the anatomy issue that causes the cyst to begin with.

Everyone is different as far as how aggressively they want to treat this. Some people would rather wait and see if their wound eventually heals and some people would rather just get a larger surgery out of the way that has a chance of healing it for good. I definitely understand how daunting it is to face the possibility of another surgery after one has failed and left you discouraged and in constant pain. However, the cleft-lift really is the best option out there in my opinion. I definitely encourage you to continue to research and go to the best surgeon possible (if that is what your son decides he wants). Dr. Immerman has an amazing website with a ton of information about the cleft-lift, misconceptions about pilonidal disease, FAQ pages, and why current treatment options tend to fail. The website is Pilonidal.net (This is also where you can reach out for a consultation. People travel from all over the country to see him)

Please let me know if you have any questions or even want to see photos of my healing progress from my Cleft-Lift with Dr. Immerman. It was the best decision I made and I hope your son can find complete healing as well.
 

wound nurse mom

New Member
I am so happy you found a permanent solution and can get back to life:) Thank you so much for your supportive words. I have been researching the cleft lift procedure as well and have come across Dr. Immerman's name multiple times. We live in PA and have seen some others refer to Dr. Caplan. I am doing lots of research on him right now. I would travel anywhere for complete relief for my son. I will be discussing these options with my son over the weekend to see what he would like to pursue. He is in last semester of classes until May. Hoping to get something taken care of as early as possible so he can enjoy college life his senior year! Thanks again! I may have more questions in the near future!
 

wound nurse mom

New Member
I made a consult appointment for my son with Dr. Caplan in Philadelphia for March 16 while he is on spring break from college. Any specific questions we should be asking? Looking forward to getting this nightmare over for my son and getting him back to a real college life:) Thanks in advance!
 

KatieMarie

Very Helpful
That's great! I'm glad he's on his way to getting this fixed for good! I didn't see Dr. Caplan, but I think good questions to ask anyone are how much success he has personally had with the procedure, what the healing process is like, if he recommends any vitamins or supplements prior to and after surgery, if he uses any drains postop, activity restrictions, wound care etc. Wishing your son the best through this process! It really was a simple and easy recovery compared to other procedures. The cleft lift has changed a lot of lives on here and I know you are both making a great decision! :)
 

wound nurse mom

New Member
So my son has finally been able to see Dr. Caplan in Philadelphia for his consult which was scheduled for March but due to this pandemic was delayed...I was really impressed with Dr. Caplan's mannerism and concern for what my son has been going through for so long. I wish we would have seeked out a specialist when this all started. He is very confident that he will have a successful cleft lift procedure which is scheduled for June 16, could've been sooner however my son is in the middle of an online summer college course and wanted to finish that first...my son is of course apprehensive about the outcomes of this procedure as he has been through so much and was always told same thing. Dr. Caplan said the surgeon never removed the actual pit and therefore is why he has had such a time of this along with nonhealing wound since surgery. Anxious for a long term solution so he can put this horrible disease behind him and move on to enjoy his senior year of college along with getting his life back! Will keep you updated on his healing progress once things get done! Hang in there, there is help out there, you just have to fins the right one:)
 

wound nurse mom

New Member
Just a quick update...my son had his cleft lift Tuesday and is doing very well! Dr. Caplan is amazing! He has been fantastic from time of consult to post procedure. We couldn't go into surgical center due to covid restrictions but staff at Paoli Surgery Center was very attentive, communicated with us very well as well as treating my son with respect. Dr. Caplan called us post procedure as well as came out to our car to follow up. We were kept up to date with all of his care. First day post op was painful but able to sit for periods of time, walking. Today says pain is quite improved. It's tough because he has dealt with pain for so long prior to this. No drain used for his procedure. Light dressing to protect with steri strips which I will remove Monday and text a picture of incision to Dr. Caplan since we live further away and I'm a wound nurse, lol. He will follow up June 29 in office for post op check. Had a bowel movement without issues, showered without issues. No drainage. No squatting, water soaks or sports or activities that could potentially cause a fall for 4 weeks. Anticipate most routine activity to resume in 2 weeks or so. So happy with the process from consult to current and pleased with his recovery thus far. Just wish we would have pursued this option long ago...If you are dealing with excision after excision, living in pain everyday, please seek an educated surgeon and discuss your options especially cleft lift. I am already seeing a change in my son's mental health! If you are in the Philadelphia area, I highly recommend Dr. Caplan! I'm looking forward to my son's full recovery and getting his life back and enjoying his senior year of college and a pilonidal free life! All the best to you all!
 
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