Need surgery, at a loss again

Riley

New Member
Hi guys. So I've been aware of my cyst for like 9 years, had intermittent issues for 4 years, and now am experiencing monthly flare ups I've been talking to the colon/rectal surgeon I see here for a few years about this, and his preferred method is to clean it out and let the wound heal open from the bottom up. He's said my case "isn't complicated" and I think (not sure) that the scarring might be more minimal vs something like a cleft lift, especially since my cheeks hide a good portion of the sinus tracts. That's one reason I'm considering doing it his way, another is that last time I looked into it (which was a few years ago) I couldn't find someone in AZ that does cleft-lifts anyway.

I'm at the point this thing is driving me nuts. I lost my job due to coronavirus, but was uninsured and planning on paying out of pocket anyway. Now that I have the time, and the fact it's flaring up like every three weeks, I was thinking that maybe I should do it now. Then at the same time, the complications of doing something like this during a pandemic seem dangerous too. Another factor is now I do have to time to travel out of state if I could find someone to do a cleft lift. The healing process of the open wound with the way my doctor does it seems like a horrendous healing process. I was just going to trust him and do it though. His office quoted me around $1,600 for the outpatient procedure.

I guess I came here today to ask thoughts on the different types of surgery, the scarring, and about whether or not to do it in this current climate. And maybe if anyone has some management tips. I'm about to take an Epsom salt bath, I think a heating pad aided me in it popping overnight. It's almost like only one section of it comes to a head and drains, then there's another pocket that doesn't feel like it drains and I feel like that's why it keeps getting reinfected, but who knows. Hope everyone is staying strong out there!
 
I’m in AZ too. If you’re going to advanced surgical associates RUN AWAY. I saw dr. Haley first with dr. Kadika (sp?) assisting. Dr. K is listed on here as someone who does the cleft lift but my surgery with those two proved to be unsuccessful and a nightmare. After that Haley brought in dr. Testa a plastic surgeon and the dude totally botched me. Sew together my glute muscles and I’m ruined for life. Can’t tell you how much I’d love to sue him. Anyways, surgery #5 was with dr Immerman and he did fantastic. It’s been about three months now and things are great. I know you said you aren’t exactly in a position to travel but if you can ever finds the means I’d recommend Immerman.
Also, before you go through with this procedure make sure you ask this surgeon really thorough questions like 1. How many people have you done this on 2. What’s the success rate 3. What’s the plan of action if it doesn’t work. Etc. obviously your sinus/ place where the cyst keeps growing back isn’t going away and it will need to be dealt with. In my situation before I ever had surgery I had 1 Sinus and it developed into a chronic wound. So consider that yours may be a chronic wound and may not heal properly. Dr Immerman firmly believes (and I do too) that your wound will never heal unless it can get adequate oxygen and in a butt crack....it don’t get no oxygen. So the likely hood of it being a successful or speedy process is very slim. However, if you do go through with the procedure make sure you get lots of protein and go on walks so your wound gets proper blood flow. I’m sorry this is a less than ideal problem in a less than ideal place. Wishing you the best
 

lorenrobb

New Member
Hello,

I’m sorry to hear that you’re going through this. I had a complicated pilonidal cyst journey that started in 2010 (located in Orange County, CA where there are two great surgeons) with what I thought was a pimple, but ended up being a cyst that actually reached all the way to the bone. I say this because I researched what a pilonidal cyst was after I was informed and it seems there is a bipolar method of taking care of it: easy or drawn out.

Mine definitely was deeper than most. I went into my primary care, who initially gave me a local anesthetic and then sliced and drained it open. At first it wouldn’t drain because it was so deep but then a bunch of puss released. I would recommend this route first to get a sense of how deep it is in order to gauge surgery. Hopefully not the case but after 9 years of you dealing with this, I’m not sure, it may be deeper.

I was told by a friend that they had the surgery and they were back to climbing ladders in 4 weeks. I had the same heal from within surgery (8 times) over a span of 2 years. Since the spot doesn’t get much oxygen and you have to avoid sitting on it, it’s a tough recovery if it’s super deep. Healing from within takes time and I would get to the last leg of healing and my skin wouldn’t fully close/attach, I would see the surgeon again and they’d recommend another surgery. Another complication was that I was a student who studied abroad for one post-surgery wound and it got infected which almost killed me by getting into my blood stream. I only bring this up not to scare but to highlight how a surgery I thought would be rudimentary ended up being more severe because I didn’t take it seriously.

As the previous comment touched on, please do all you can if you have surgery. Drink fluids, get enough protein (preferably collagen to promote skin healing), walk to get blood flow (I definitely didn’t out of fear of tearing my wound), possibly using nitrates to irritate the wound and promote healing and sleep.

Luckily I was a student at the time so I had my parents help with cost. I had HealthNet HMO so copays for surgery were only $75. I did see plastic surgeons for guidance but ended up down this route. I know you’re in AZ but if you’d like the surgeons names I can provide them. Hope this helps and you have a speedy recovery in any rate.
 

Riley

New Member
Oh hi fellow Arizonan! Last night when I was browsing I saw a post on here from years ago from someone saying they were in Tempe and I was telling my best friend it made me feel better to know I'm not the only one in the area with this issue haha.

I've been seeing Dr. Stephen Brown from Affiliated Colon and Rectal Surgeons. I never asked him how many he does a per year, but he's said he does them often enough and has a good success rate with the open wound. He's always pretty confident it'll work every time I've expressed hesitation, he's aware of what the cleft lift is but I don't think he ever learned it. I've been so worried about the healing process but he seems to think it'll be fine. Right now I'm just dealing with the monthly flareups but I've seen him twice the past year and we've discussed the surgery, but I've never been in a position to do it/haven't been ready to take that leap of faith.

Just curious, were your failed surgeries the open wound kind? Having the open wound heal during the fall in the Arizona heat doesn't seem ideal to me either.

I might be able to travel because I'm currently unemployed due to the virus, but traveling and staying in a hotel for five days post op and flying back during the pandemic seems like too much of a task. I was thinking about checking out Dr. Stefanie J. Schluender in Tucson, cause at least that would just be a two hour ride south. Someone on here said they got a cleft lift from her. I've been hesitant to go that route because I thought the scarring would be more minimal if an open wound healed properly, but the risk of it coming back worries me too!
 

Riley

New Member
Hi Lorenrobb, sorry I didn't see your reply when I did my last reply! Thank you for sharing your story and for your advice. That's exactly the situation I'm worried about with the open wound healing! My doctor has told me multiple times he thinks it will heal uncomplicated, and he has lanced and drained it once four years ago.

Since I lost my job cause of corona I'll have to be looking again here soon, and the idea of starting a new job, or job hunting with a healing wound on my backside also sounds terrible, but so does taking time off a new job to get it done. I also travel pretty often, and have been afraid of a situation happening like your study abroad! I've already had to deal with flareups on international plane rides and while staying in a hostel and I'm so ready for it to be over. Luckily it's not too bad cause mine usually drains, but the idea of it getting life-threatening infected abroad is pretty scary.

If the cleft-lift surgery would actually get me back to functional life faster and the scarring isn't terrible, I'm starting to consider it more, though it would likely involve travel.

Funny enough, I just realized exactly where Dr. Immerman is located, and I'm helping my friends move nearby next month! It's not an ideal situation for the surgery, I'd need my mom with me probably to help out and we'd have to stay in Wisconsin. And elective surgeries might be canceled right now anyway. But I'm wondering if I can at least get a consult with him to get the opinion of one of the best! Hopefully his office is still doing consults.
 
Yeah this is complicated. Again, if you can...cleft lift with a specialist. For my surgeries: #1 bascom flap (technically this is a cleft lift just a different name) failed. Opened within two weeks as doctors didn’t flatten the cleft. #2 debridement and closure (so you can consider it bascom flap part two lol) #3 plastic surgeon went rouge and made up his own surgery. Sewed my glute muscles together (this is typically a surgery they do for people with chronic bed wounds like deep deep deep no tissue left over the sacrum) #4 basically just opened me up again and sewed me back shut. After every surgery my incision would fall apart with a matter of weeks. After the 4th surgery I knew something was wrong because I was draining massive amounts of fluid and no one could tell me why but didn’t seem to care either. I was still draining fluid regularly when I went for #5 successful cleft lift a month and a half later.
So long story short. No open excisions. All closed surgeries

really if it were me I would never go to a colorectal surgeon for this stuff. It’s not even in their field. If I could go back in time I would have never had gone through with the surgery just because the surgeons appeared confident and competent. I want numbers. How many people (need a ball park number). Percentage of successful outcomes from one surgery , two etc. you need to remember that these surgeons have no knowledge of what happens to you after you leave their office and frankly they don’t care. Make sure you find someone who really truly knows their stuff. It will save you time and money and honestly maybe even your ass. I’m not trying to scare you I’m just being candid.
 

KatieMarie

Very Helpful
I agree that the cleft lift is the best option and Dr. Immerman is amazing! My first closed surgery by a local colorectal surgeon in Michigan failed and left me with an open wound for nine months! I traveled to Wisconsin and had surgery with Dr. Immerman while my wound was still open and draining. He performed my cleft lift and I’ve been healed every since! It’s been just over a year and a half. If I could do it all over again, I would’ve gone to him first, no matter the distance. He has changed so many lives!
 

KatieMarie

Very Helpful
Also, his website pilonidal.net has some amazing information and that is where you can reach out for a consult. He can look at photos through email.
 

ASZpilo

New Member
Hi Riley, My son and I just returned home from Wisconsin six days ago. We traveled from Ohio to see Dr Immerman. My son has been suffering with this disease since 2016. He has been through six failed surgeries, including the Y flap procedure performed by a colo/rectal surgeon and a plastic surgeon.
I would 1000% recommend Dr. Immerman! I wish we would have gone to him five surgeries ago.
The process is pretty easy, when you call the office they will review your case via pictures and history through email. Dr. Immerman will determine if you are a candidate for surgery. Due to covid we needed to be in Wisconsin four days before surgery so my son could be tested. He was seen the day before surgery by the Dr. on Thursday the 18th, then Friday was surgery. As crazy as it sounded to travel to Wisconsin for this surgery at first, now I feel it is crazy to not go!
Dr. Immerman is absolutely fantastic!! He understands the mental and physical trauma associated with this disease. The entire staff at Sacred Heart Hospital are wonderful! It is a smaller hospital where you are treated with such care and common sense. He has preformed over 600 surgeries to fix the disease.
We stayed at a fantastic Airbnb called Middle Ground, very affordable, much cheaper than a hotel, plenty of room to spread out and close to the hospital and Doctor's office. Not a lot of stairs to deal with post op. We stayed six days after surgery to have the drain tube removed by Dr. Immerman.
I could not believe that my son was able to sit in a chair the day of surgery, and tolerated the ten hour ride home. Two weeks post op, the incision is dry and clean, everything looks really really good.
 
Top