When to get a second opinion?

ATL85

New Member
Hello all, first here is my back story: Back in the spring of 2005 when I was 20 I had my first pilonidal cyst. At the time I thought I had just fallen on my butt and ignored the swelling lump until until it became so painful I couldn't even sit. The school nurse at my university simply cut the skin and squeezed it like a pimple, taped a gauze pad over it, and sent me on my way. After reading on the forum this was a very useless treatment, although it did relieve the pain. Not surprisingly it swelled back up in the fall of 2005 and I was treated by a surgeon. He lanced it, cleaned it out, and packed the wound open to heal from the bottom up. This seemed to have worked from 2005 to 2017 and a couple weeks ago I felt the lump swelling up. After some gentle pushing puss came out of the drainage tract and I had no more pain. However, it has started swelling again and isn't draining on its own.

I feel much more knowledgeable after reading the forum here, which I wish I had done before what I did on Friday. In the interest of some immediate relief through lancing I called my general practitioner but he felt uncomfortable treating it and got me worked in to see a surgeon who is married to someone in my doctor's practice. Now we get to the part that freaked me out. The surgeon said he only wanted to treat it through excision because otherwise there was no point in doing anything because it would just come back. When I protested that I had just moved to Atlanta in January and had no where near enough time off to be treated through this process and needed something with a shorter healing time even if it meant a higher chance of a recurrence. It was like this guy didn't even hear me. I know no one ever probably goes through excision happily and there is never a good time to be laid up recovering for that long, but I feel like in my case I need to try something else first. The surgeon proceeded to tell me horror stories of patients who did not treat their pilonidal cyst and I left with my anxiety sky high which is how I ended up here on the forum.

I only have one cyst and it only appear to have one drainage tract, although I know that after opening me up may reveal there are more tracts/sinuses. The surgeon I saw said I could try to get a second opinion if I wanted, and if I kept looking long enough may be able to find someone else who would do something other than excision, but that there was no point in doing any other treatment.

So now we get to my question, if you were in my situation would you go get a second opinion? If my treatment in 2005 kept me problem free until 2017, it seems like jumping to excision with open healing is the most extreme option. My thoughts are if I try a more conservative treatment, like pit picking, and it fails I can always have excision in the future. I'm concerned that the close minded nature of the surgeon means he is not up to date on possible treatment methods for pilonidal cysts. The surgeon specializes in breast surgery and general surgery, which may mean he is not familiar enough with pilonidal cysts to be the guy to trust. The whole time he kept telling me about how he treated pilonidal cysts when he was an army surgeon during the Vietnam war, which in his mind made him an expert.

I've found a general surgeon (Dr. John S. Kennedy of DeKalb Surgical Associates) through the Georgia forum who did the Boscom pit picking on one of you guys successfully, and I've been thinking of calling him on Tuesday after the long weekend to see if I can see him for a second opinion

I'd really appreciate any thoughts or comments you all can provide! I'm so freaked out by excision and what it means for my job after just moving here that I cant sleep at night due to the stress.

PS I forgot the most annoying part of the story....The surgeon I saw wouldn't entertain the notion of lancing the cyst to give me temporary pain relief because he wanted to go ahead and get the excision scheduled for right after memorial day! So as I write this I've still got my swelling pilonidal cyst with increasing pain to keep me company over the long weekend...
 

Laurie

New Member
Hello. I'm sorry you are having to go through this.

Although I agree with this surgeon regarding excision to ensure there are no additional tracts & to avoid recurrence, I would definitely get a second opinion.

My first surgeon was not confident enough for me so I got a second opinion. The second opinion basically said the same thing your surgeon said but when I asked if there was any other option (I wanted to avoid excision at all costs due to anxiety, work, etc....) he said he could lance it to buy me a bit more time. He did say it was best to just get it over with and also explained the horror stories if I chose to wait (but did it kindly).

He ultimately left the decision up to me, which is how it should be. These are our bodies so the choices are ours to make based on the information given to us.

I opted for the surgery (open wound) and am now 8 weeks post op. Mine was apparently much larger, deeper & had several tracts once he got in there. I'm guessing had I not had the surgery I would have been one of those horror stories.

Bottom line, it is always your choice, not the surgeons. If he won't do anything other than surgery and you want to wait, find a doctor that will give you some relief, even if temporary. Seems to me you are aware that eventually you will need to have the surgery once you are settled. As you said, there is never a "good time" so I'd get it taken care of as soon as you can. Best of luck!
 

ATL85

New Member
Thanks for your insight Laurie. Is there a reason you opted for excision instead of a cleft lift? The amount of healing time for excision is what terrifies me, but after reading all the positive stories about a cleft lift I think I would like to opt for that instead of excision. I've only found one doctor in Atlanta whose bio references cleft lift, and previous doctor's in Atlanta referenced on the forum have since retired or moved away. Needless to say I book an appointment with her to get a second opinion.
 

Laurie

New Member
Thanks for your insight Laurie. Is there a reason you opted for excision instead of a cleft lift? The amount of healing time for excision is what terrifies me, but after reading all the positive stories about a cleft lift I think I would like to opt for that instead of excision. I've only found one doctor in Atlanta whose bio references cleft lift, and previous doctor's in Atlanta referenced on the forum have since retired or moved away. Needless to say I book an appointment with her to get a second opinion.
At the time of my appointment with the 2nd opinion doctor I was in such excruciating pain and felt very comfortable and confident in his abilities, I scheduled the surgery.

I was not aware of this forum until after I'd scheduled and was unaware of the cleft lift procedure at the time. I looked a few days before my surgery date but couldn't find a doctor in my area that did that procedure.

The healing time is long but if I never have a recurrence it will be worth it. I still have a wound vac machine, went back to work 2 weeks ago, expected to be discharged from wound care in 2-3 more weeks. It's time consuming as I go 3x per week to change foam and canister. Everyone's experience is different. Most I've seen don't need a wound vac machine.

I read a lot of horror stories about the open wound procedure, luckily it has not been bad at all in my case. Just frustrating.

Is your cyst large?
 

ATL85

New Member
Thanks for the information! I'm not sure what a large pilonidal cyst would be. It's feels/looks like it's about the size of a nickel, maybe slightly smaller. Even though it's been swollen for several days now I'm feeling lucky that there isn't a huge amount of pain involved, but it certainly is uncomfortable. It's nowhere near as painful as the first one I ever had all those years ago.
 
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