Have you had the Cleft Lift?

[blue.sunshine]

Good evening all.... I'm new to this site, found it a few weeks back when I was researching my pain (we all know 'that pain') & I came across the terminology/ condition, and then this website. My PS has chilled down, I consider myself extremely lucky! I have not had any surgeries or lancings, mine just drained naturally & it was not even that extreme to begin with. I believe this is my first obvious flare up. I know I am very fortunate, as I was not forced into immediate surgery. To me (and I'm sure to most of of us on here), living a pain free life is the most important thing. I do not necessarily want to have surgery (for obvious reasons such as recovery time/ medications/ down-time/ complications, etc)......but who knows what the future might bring w/ my PS. I'm taking the time now that I can, to get a few consultations w/ different Drs. & research as much as I can, which includes getting feedback from others who've had a Pilo & ways in which they either manage, or have treated it.

So far, the cleft lift is looking like the surgery with the quickest recovery, lowest recurrence, & all around best results. This website is tricky...some posts are a few years old with members long gone. I don't blame anyone though as this condition is not one I'd want to revisit once recovered lol. I guess my question is, has anyone reading this had the cleft lift, and what was your experience & results?? Even if you had it 20yrs or 20 days ago, I'm open to all & any feedback (good & bad). My main questions evolve around healing/recovery, & any side effects from it such as continued pain at the scar, recurrence, or mobility. Or anything else from your personal experience you'd like to share. FYI, I'm not concerned with scarring in an appearance sense, but more curious if the surgery would inhibit mobility or cause any long-term pain. I'm not jumping into any surgeries yet, but more or less want to be prepared if I have to.....

Or, if you posted your story on here & can link me up to it....there's so much to this site I am still uncovering.

Thanks in advance. I know all of our situations, bodies & experiences are unique so I'm grateful for all replies !
I hope everyone is well~

 

[Wais1]

Hi ... what therapy’s have you tried to make the wound heal without cleft ... for example right now I’m looking in light therapy device and laser therapy device which help the wound heal ... like the ones they use for shoulder injuries and back injuries as well ... a device called b cure laser has had clinical trials on it ... maybe that’s a good idea ?

 

[blue.sunshine]

Hi Wais1 - As of now my wound is not closed up fully. I believed it was a sinus but that was confirmed by a Dr. I have only been doing my regular daily showers (I did this anyway even before the cyst), but now I add to that some extras like witch hazel (Tucks) pads/wipes, sitz baths every day or other day, & also wipe the area with Stridex acne wipes. It seems to keep the area clean, dry & uninfected. This is just my particular case though.

I have only just begun researching surgical options, as this is totally new to me. I was told the cleft lift is the best one for me, should I get one. As of now I'm still monitoring my cyst/sinus & how it responds. I heard about the laser therapy, but just confirmed w/ my Pilo surgeon that he does not see much benefit from it & is not satisfied with the results. From what he told me, it's a newer technique but has potential for recurrence b/c it does not remove all the damaged tissue. I never heard of the light therapy, that's interesting though. Can you send me a link on that?

I truly do believe though, after all my research so far, the cyst will never go away. I think it either just stays dormant & some people manage to live with it that way.....or it becomes too much pain wise, etc & must be removed.

I wish they had less invasive options to treat it. I was hopeful laser surgery could be used on mine (it seems logical), but was told the opposite ;/
Again feel free to share your links on the laser & light therapies you came across...it would be interesting to see.

If you're curious about the ways I've been managing it, you can check out my blog here: https://www.pilonidal.org/xfforums/...eatments-in-pennsylvania-or-in-general.15189/

 

[Nana Tadros]

My 2 sons both had bad pilonidal disease and several failed surgeries. I understand what you are thinking of when you get this diagnosis. The answer is not simple to what is best done. This disease has the tendency to be a long lingering condition with flare ups. The best surgery for this condition is as you mentioned the cleft lift surgery. However, some patients can benefit from something called pit picking. You need to find a surgeon who takes care of a lot of these patients. Check www.pilonidalsurgery.org. Dr Wadie is the surgeon who did my 2 sons surgeries with great results. He happens to offer both the cleft lift and pit picking

 

[CarrieZ]

Hi there! First of all I’d like to say I’m
sorry you’re having to deal with this horrible disease. I had a long four year journey with 4 surgeries total and many complications after the first three I had done.

I would strongly recommend getting a cleft lift done! I had my last cleft lift done by Dr. Sternberg in March of 2019. There was so much scar tissue and issues from the previous surgeries I’m thankful he was able to do such an amazing job with what he had to work with.

But if you do decide to get the cleft lift done make sure you are seeing a specialist surgeon who has had LOTS of experience with the surgery and great reviews. I cannot stress it enough. My second surgeon (who was a colorectal surgeon) did two “cleft lift” surgeries and did not have enough skill to properly execute the surgery. And because of that both cleft lift procedures failed. In fact after he did the surgery my incision completely SPLIT in the top, middle and bottom. I had lots of bleeding. And that was by far the most traumatic experience of my pilonidal journey.
And I healed up just fine with my final cleft lift with dr sternberg. It’s all in the surgeons!!

as far as recovery goes mine was rather painful (because of all my previous surgeries) but if this is your first one it shouldn’t be too painful! You can usually get back to work and daily activities within 4-6 weeks. My scar has healed nicely and I can finally work now and exercise and not have to worry about it running my whole life.

best of luck to you friend!!

 

[concernedman]

Hi there! First of all I’d like to say I’m
sorry you’re having to deal with this horrible disease. I had a long four year journey with 4 surgeries total and many complications after the first three I had done.

I would strongly recommend getting a cleft lift done! I had my last cleft lift done by Dr. Sternberg in March of 2019. There was so much scar tissue and issues from the previous surgeries I’m thankful he was able to do such an amazing job with what he had to work with.

But if you do decide to get the cleft lift done make sure you are seeing a specialist surgeon who has had LOTS of experience with the surgery and great reviews. I cannot stress it enough. My second surgeon (who was a colorectal surgeon) did two “cleft lift” surgeries and did not have enough skill to properly execute the surgery. And because of that both cleft lift procedures failed. In fact after he did the surgery my incision completely SPLIT in the top, middle and bottom. I had lots of bleeding. And that was by far the most traumatic experience of my pilonidal journey.
And I healed up just fine with my final cleft lift with dr sternberg. It’s all in the surgeons!!

as far as recovery goes mine was rather painful (because of all my previous surgeries) but if this is your first one it shouldn’t be too painful! You can usually get back to work and daily activities within 4-6 weeks. My scar has healed nicely and I can finally work now and exercise and not have to worry about it running my whole life.

best of luck to you friend!!

How long did it take before you were pain free?

 

[AGoodCyster]

Hey @blue.sunshine! I too had one flare up (it drained on it's own) and then had intermittent soreness when I sat for long periods of time or in certain positions for the following year. I debated whether to leave it (seeing as I only had one flare up and it had simmered down) or go for surgery to relieve myself of the weight and worry of another flare-up (the first one ruined a trip to Italy! ha). I too did not want to go for surgery for fear that it might cause additional problems (hence why choosing the right Dr. is critical per Carrie Z's point). This page on Dr. Immerman's website was really helpful to me: Pilonidal disease with minimal symptoms - Evergreen Surgical Pilonidal Clinic

I pulled the trigger this past Dec (2020) and got it taken care of. I had my surgery with Dr. Immerman in Eau Claire WI (he takes self referrals). The surgery and recovery has been a breeze. No infection, and much less pain that I experienced during my pilonidal flare up incident (took Ibuprofen once and nothing else during recovery). I'm 2-months post-op: I can sit for long periods to work, walk around, bend over, shower, sleep, workout etc.). Scar is off the midline, and hasn't caused any issues with mobility. I'm so grateful to have this taken care of once and for all! Good luck with everything.

 

[Ssaul24]

Hi all! I had a wound open for 3 years after 3 surgical attempts. The last 2 surgeries were left open. I came across Pilonidal Treatment Center of NJ and after almost losing hope, I tried one last attempt. The doctor there was so caring, explained everything to us. My recovery was amazing. First 2 weeks I took it easy and was afraid to sit, not because it hurt but because I was afraid and felt strange. By week 3 I was almost feeling normal and so glad no open wound. Stitches were dissolvable and my drain was out by day 8. I am now 8 months out, feeling great. Playing sports and living a normal life. Wish I had my cleft lift procedure years ago and avoid all this suffering and almost losing hope for a cure.

 

[Shelby0511]

I just had mine done on Tuesday the first few days I was in pain but the pain is starting to subside it just fells really stiff and sore now. I have a closed wound with stitches that are going to be removed by my surgeon on March 10th if it’s healing well. I am also on amox/clav twice a day to prevent infection. I have been dealing with mine for 9 years and the last time I went to have it drained I was told it was too much scar tissue and it was time for more intervention

 

[CoryB]

I had the cleft lift procedure done 3 years ago by Dr. Immerman. Quick recovery and I NEVER have any issues regarding any activities. Obviously, there is a difference in the shape of your rear, but it is well worth not dealing with any issues. Hope this helps!