Cleft Lift pain 5 months post-op

matthew88

New Member
Hi everyone,

I’m posting because my cleft lift seems to be having trouble healing, and I’m wondering if I should be doing anything to help it. I had the surgery done in January by a surgeon who is experienced with the cleft lift procedure, and he says that my scar looks great and shows no sign of infection or recurrence of pilonidal disease. Ever since the surgery it has been painful to put pressure on the area (sitting or lying on back), and this pain got less severe during the first two months of healing but hasn’t shown improvement since then. The pain feels like a very uncomfortable burning. This pain used to go away whenever I would lie on my stomach, but recently the surgery scar opened up and now I’ve been feeling the burning pain all the time. It bled a bit but seems to already be healed back together, but the increased pain has stayed.

I contacted the surgeon and he said that my pain is likely from regenerating nerve endings inside the skin and that it should go away with time. He said that the scar opening does not indicate a problem. I am still concerned though because my pain hasn’t been improving and it’s been a pretty long time since surgery. Is there anything I can do to help the pain go away? Is it possible for a cleft lift to “fail” without a recurrence of pilonidal disease, and do you think I’ll need another one?

There are two things I should mention that might be hindering my healing process: (1) I had two surgeries from a different surgeon prior to the cleft lift procedure—both were debridements with fibrin glue—but these did not work; and (2) I have a spinal injury that affects my level of physical activity and also prevents me from lying on my side (I spend the day on my stomach).

Does anyone have advice about how to get this fully healed? I am tired of dealing with this and was discouraged by my recent increase in pain, so I’d appreciate any help I can get. :)
 

ellysparkles

Very Helpful
Can you make an appointment with the surgeon so he can physically see what's going on now? I'd be a little concerned your scar opened up 2 months later. Any smell or anything like that? Or drainage that's yellowish/green? Is the area hot to the touch?
 

matthew88

New Member
Can you make an appointment with the surgeon so he can physically see what's going on now? I'd be a little concerned your scar opened up 2 months later. Any smell or anything like that? Or drainage that's yellowish/green? Is the area hot to the touch?
I sent pictures to the surgeon and he said everything looks fine. I’m hesitant to make another appointment because I live four hours away. There’s been no drainage with an odd color or any bad smell so I don’t think it’s infected. It’s not hot to the touch—there’s just burning pain in the surgery area especially when I put pressure on it.
 

ellysparkles

Very Helpful
I understand about the travel and don't blame you. Sorry, I misunderstood when you write that it healed back up.
 

Guest_2

New Member
May I ask who did your fibrin glue procedure? It is hard to find anyone who does those these days - thanks!
 

matthew88

New Member
May I ask who did your fibrin glue procedure? It is hard to find anyone who does those these days - thanks!
Sure! It was Dr. Clint Cappiello at Johns Hopkins in Baltimore, MD. I went to him because I was already receiving treatment at Johns Hopkins for my spine. He is a very nice guy, but the fibrin glue treatment did not work out for me. I had a pretty bad case (two large draining sinus tracts) and wish I had gone for the cleft lift procedure first. My first fibrin glue surgery healed me temporarily after several months of recovery, but the sinus tracts quickly opened back up when I returned to sitting. He did the surgery a second time on me, but it only made me worse. It could possibly work for you if your case isn’t too bad, but otherwise I would suggest getting a cleft lift if you are willing to travel to someone who knows the procedure. My cleft lift has been feeling better since my original post, and it is the best surgery to permanently remove the disease. The only downside is the surgery scar which honestly doesn’t look too bad. I wish you luck with whatever treatment you choose!
 

thecount

New Member
Sure! It was Dr. Clint Cappiello at Johns Hopkins in Baltimore, MD. I went to him because I was already receiving treatment at Johns Hopkins for my spine. He is a very nice guy, but the fibrin glue treatment did not work out for me. I had a pretty bad case (two large draining sinus tracts) and wish I had gone for the cleft lift procedure first. My first fibrin glue surgery healed me temporarily after several months of recovery, but the sinus tracts quickly opened back up when I returned to sitting. He did the surgery a second time on me, but it only made me worse. It could possibly work for you if your case isn’t too bad, but otherwise I would suggest getting a cleft lift if you are willing to travel to someone who knows the procedure. My cleft lift has been feeling better since my original post, and it is the best surgery to permanently remove the disease. The only downside is the surgery scar which honestly doesn’t look too bad. I wish you luck with whatever treatment you choose!
who did your cleft lift? I am in maryland and having trouble finding a surgeon in the area who will do the procedure. Thanks!
 

matthew88

New Member
who did your cleft lift? I am in maryland and having trouble finding a surgeon in the area who will do the procedure. Thanks!
It was Dr. Wadie in Raleigh, NC—he is fantastic! I found him on this forum and drove from Virginia to see him. I’ve had a great experience with him and I know others have as well. If you want someone closer to you, I’ve heard of Dr. Caplan in Philadelphia, PA and Dr. Rosengart in Pittsburgh, PA.
 

Guest_2

New Member
Capiello seems to be a pediatric surgeon were you able to see him as an adult? Sorry just trying to determine because it's impossible to find anyone doing fibrin glue and I can probably only do that one right now - thanks again!
 

matthew88

New Member
Capiello seems to be a pediatric surgeon were you able to see him as an adult? Sorry just trying to determine because it's impossible to find anyone doing fibrin glue and I can probably only do that one right now - thanks again!
I saw him when I was 16 and forgot that he is pediatric, sorry about that. I hope you can find a name from somebody else. I assume that not many surgeons do the procedure because it doesn’t have the highest success rate. To my understanding, the fibrin glue treatment only addresses the secondary symptoms (the cysts and sinus tracts), but not the primary cause for pilonidal disease which is the deep cleft. If it helps, here’s a list from Dr. Immerman of the many ways people treat the disease.
 

matthew88

New Member
Just wanted to update that my scar has stopped opening up and the skin seems healed, but I am still in lots of burning pain. I think my nerves got injured during my cleft lift and are not healing. I saw a pain specialist and was prescribed gabapentin, but so far it hasn’t given much relief. I might try a cortisone injection - has anyone had success with those?
 

seattle_pilonid

New Member
@matthew88 - i had my cleft lift surgery with Dr Wadie around 4months ago, and I am unable to sit more than 30minutes without getting pain on the stitches/scar. i wonder if theres something in the way he does cleft lift that results in this never pain
 
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