Not sure what to do anymore.

Carlycko

New Member
Hi all,

I just found this form while searching Google for help. Since 2009 I've been dealing with a very large and painful pilonidal cyst. It's internal, no visible bump or anything at all. It was first discoverd after I went to the ER in pain, unable to walk. It was the size of a grapefruit they said, though completely internal. I've have emergency surgery multiple times now. The pain starts and then I can't walk . They drain it and I'll be ok for a while. One surgery for draining it left me hospitalized for a week. I've had cellulitis from it. It's been one awful ride.

They won't drain it anymore. I've seen multiple surgeons here and none of them know what to do. I live in Oregon. It's flared up again now and I'm on antibiotics but the pain is unbearable. I can't walk. I can't do anything. No surgeon around here is comfortable removing it.

I just don't know what to do anymore and if anyone has any advice I would appreciate it. The pain is taking over my life and I'm afraid. Thank you.
 

OregonBob

Helpful
I'm surprised you can't find a surgeon here in Oregon, the state where Dr. Bascom the perfector of the cleft lift procedure was invented in Eugene, OR. A state where I also live, and I had my cleft lift procedure and removed the cyst and clear out the entire sinus tract. I live in Corvallis and had a surgeon named Dr. Penner from Samaritan Surgical Specialist do the procedure for me in January.
 
Last edited:

Carlycko

New Member
I'm shocked that the surgeons where I live haven't heard of this or recommended me. I live in bend. Thank you guys for responding I will check out Dr. Bascom. Does the surgery usually get covered by insurance ?
 

miller34

Helpful
The surgery isn't widely known yet but it is getting more recognition. My surgeons didn't know either. I think a lot of people find out after running out of options much like you and then coming to wonderful places like this for assistance.

I also have recurring cysts and am finally scheduled for my own cleft-lift surgery in Indianapolis. I understand the impacts and fear; it can be devastating. Just know you aren't alone and there is an awesome support group here rooting for you.

With your record, you appear to be a perfect candidate for the procedure! Some of the best surgeons are now recommending the surgery as the best course of action in almost all cases. I'll give you a few informative links that will give you some insights:

Dr. Immerman -- The Cleft Lift Procedure

Dr. Sternberg -- The Cleft Lift Procedure - A Cure through Better Engineering

It does seem insurance companies are covering this procedure. Call Dr. Bascom's or Dr. Penner's office and ask. If they don't they may well be able to recommend you to someone who will accept yours.
 

Hopeful88

Very Helpful
I'm shocked that the surgeons where I live haven't heard of this or recommended me. I live in bend. Thank you guys for responding I will check out Dr. Bascom. Does the surgery usually get covered by insurance ?
I just had the cleft lift and my insurance covered it I had to pay my deductible, but that’s it.
 

OregonBob

Helpful
@Carlycko my surgery was covered by my insurance, I did have to pay my deductible and my maximum out of pocket was reached $4k, the surgery with a night stay in my case was $15k. You most likely won't need a night stay unless you have trouble coming out of anesthesia like I did.
 

Carlycko

New Member
So another question, I'm looking at my paperwork and in 2009 I was diagnosed with a perirectal abscess and fistula-in-ano. Though while others have said pilonidal. Are these related ?
 

Hopeful88

Very Helpful
So another question, I'm looking at my paperwork and in 2009 I was diagnosed with a perirectal abscess and fistula-in-ano. Though while others have said pilonidal. Are these related ?
No, those are not related at all. The perirectal abscess and fistula in ano deal with issues of the anal canal itself and the tissue surrounding the anus. The pilo on the other hand is usually right above the butt crack/in the butt crack. Stinks though! The cleft lift to deal with the pilo can get pretty close to the anus. The end of my incision is about an inch away, pretty common from what I hear.

Could they possibly deal with it all at the same time for you while in surgery?
 

Carlycko

New Member
No, those are not related at all. The perirectal abscess and fistula in ano deal with issues of the anal canal itself and the tissue surrounding the anus. The pilo on the other hand is usually right above the butt crack/in the butt crack. Stinks though! The cleft lift to deal with the pilo can get pretty close to the anus. The end of my incision is about an inch away, pretty common from what I hear.

Could they possibly deal with it all at the same time for you while in surgery?
I sure hope they can deal with both. After the first surgery I had for the pilonidal, when it flared up again it also caused a tract of cysts with multiple pockets which is what I think led to the abscess and fistula. Ughhh hoping there is light at the end of the tunnel.
 

Hopeful88

Very Helpful
I sure hope they can deal with both. After the first surgery I had for the pilonidal, when it flared up again it also caused a tract of cysts with multiple pockets which is what I think led to the abscess and fistula. Ughhh hoping there is light at the end of the tunnel.

I’m so sorry you have to deal with all this :( sending you lots of healing wishes and best of luck with surgery!!
 
Top