New, advice needed!

[Kate71]

Hello,

I'm a 38 years female from the Netherlands (which explains why my English sounds a bit funny sometimes ). I'd like to share my story with you in hope to get some support in decision-making about surgery.

I had my first flare-up when I was 20. My tailbone got hurt and I was told it was probably a cyst. I got antibiotics and was send to the hospital to make an appointment for surgery. But I was scared and since I didn't have any flare ups or complaints again, I canceled it. In the 16 years that followed, the p.s. seemed asleep. The spot would hurt sometimes, especially after long drives, but that was all.

Until in january 2008 I gave birth to my daughter. She was 10 days old when I got huge flare-up. I didn't want to have surgery right then, because I was breastfeeding and I wanted to stay with my baby. I got antibiotics again and I heard the word sinus pinolidalis for the first time. The other day, the cyst drained itself and that was it... I hoped it would go to sleep for another 16 years, but it didn't.

This month I got another flare-up. Not wanting to take antibiotics again, I decided to sit it out. But in the end I couldn't stand the pain anymore and I went to see my doctor. She send me to hospital right away, and they did a lancing that night. (I found out just today that it was a lancing; they just wouldn't tell me what exactly they did when I woke up, not even when I asked for it. So I spent one week between hope and fear, asking myself: Is it gone or not?)

Today I was told what I was afraid of: That I have to get the whole thing excised. In the meantime I had done a lot of reading on this site, so I asked about the more conservative methods, like Bascom. But the surgeon (not the one that did and will do my surgerys, by the way) would not really listen to me. He said the only one way to get rid of this thing is to get is entirely excised. And I was told to read no more horror story's on the internet. According to him, the excison operation won't be much worse than the lancing. (Question: Is this true???)

Next week I have another appointment, with the surgeon that will do the excision (If I agree on it...). I have a lot of questions for her, about the Bascom thing etc. But what do you think? Could it be possible that dutch surgeons just aren't that up to date as in de US? Or am I giving myself false hope?

My wound from the lancing is healing well, but I'm really scared for the 'real thing'. Also I have my own business and not being able to work = not earning money. And I have a small child to take care of. In how many weeks should I be able to work again (sitting job)? How long does it take to fully recover, sport again etc.?

Thank you for reading, I look forward to the responses!

 

[cricket1]

[o+o]welcome to the forum. i am very sorry your going thru this and i totally know what this is like having a kid to take care of too. i have four kids and am having a hard time as well.

well for first time surgerys an excision isn't such a bad thing. but never go with a closed excision as this could lead to further problems. open excision is an ok choice. of course the bascom is the best but for first time surgery, alot of times they just won't do it. if someone would let u get bascom, thats what i'd choose.

as for healing time, it varys greatly from person to person. i've heard of people returning just after 2 weeks and others it could be months.

it is best to get this taken care of. it can be lonely and confusing at times but we are here for u.[o+o]

 

[Kate71]

Thank you cricket. It's good to be not alone in this.

Actually, we have four kids too: my spouse already had three when I met him so we are a patchwork family.

What I found so confusing: I seem to have no 'pits' at all, I mean no little holes. A surgeon who took a look at it 5 months ago didn't find one either (this was in a period when the area was quiet). I suppose this makes the Bascom method useless for me?

But today, the guy who checked up my wound told me there MUST be a sinus hole.

If so, why didn't they find it?
And how do they know where to cut if there is no opening?

 

[cricket1]

the holes often open and close but underneath its not really closed at all. when theres no drainage it seems a small layer of skin just heals over it. the way the find it is by injecting a colored dye into the skin and than follow the tracts of color to remove all infected tissue. i think there being no hole isn't a concern at all.

 

[aliciakeysfan1989]

Hey Kate,

Indeed.. it's true.. holes most of the time open up, and close again.. that's what happened to me all the time too. But underneath, the pilo is "digging further"............. :S

Like Cricket already said: I wouldn't agree with a closed incision, because it's possible there will become infections underneath.. the best way to heal a wound is with an open excision, so the wound can heal from the inside tissue towards the skin. That's what helped for me the best way.........

Good luck!!

xx Hanneke

 

[Kate71]

I know about the closed incision and the risk of infections, so that's not what I had in mind... but I am wondering whether the pit picking procedure or the cleft lift could work for me. I want to discuss the options with my surgeon next week, but I wonder I she even knows about them... All the people in this hospital I spoke to thus far, told me open excision is the one and only way...

 

[nurselady]

I don't know too much about the different surgeries, but as a health care worker I can tell you that you definitely want to make yourself heard; talk to your surgeon about what you know, and don't let her dismiss your thoughts. You have a say-so in what they are going to be doing to you, and if there's a possibility that they can do it any other way then they should listen to what you have to say, especially if you would prefer that it be done the other way.

 

[Kate71]

Thank you nurselady. I hope I do have a say in it. We have a public healthcare system in the Netherlands that is slightly different from yours. Almost everybody can afford the insurance, that's the good thing about it. But on the other side, the system is really 'overloaded'. Surgeons do not have, or take time to broadly discuss matters whith you, unless you demand for it (which I will do ).
I will probably ask for a second opinion in another (academic) hospital anyway.

 

[Kate71]

Update.

I talked to my surgeon yesterday, I had an appointment for wound control (the wound from the lancing, which is almost healed up in 2 weeks) and used the opportunity to discuss my next step.
I admitted that I am really scared for the open surgery.
At my surprise, she said: Well, you don't have to; you could just wait and see what happens.
Then I said: but some of your collegues made it clear to me that I would be crazy NOT to have the surgery, because it will definetely be back, and worse.
She said: It probably will. But you never now.
When I asked her about the risk of tunneling, she said that tunneling is very rare and I must not scare myself so much by reading horror stories on the internet.


Honestly, I don't know what to believe anymore. Was she talking nonsense? Is there any chance it won't be back after the lancing?

Oh, and when I asked about the Bascom methods like pit picking she said: "We don't do American surgeries over here, so if you want one, go to America." (I would go tomorrow if I just had the time and the money!)

Anyway, I will keep on trying to find a surgeon who does know wat he (or she) is talking about...

The 'good' thing is she actually spotted a sinus hole. Only one, so that could be worse I guess... Noone has ever seen the hole before.

I looked at the 'pictures' section on this site yesterday and I was really shocked.

 

[cricket1]

yes a sinus hole is not good news. the wait and see approach is always an option. there is always a slim chance that it could be years before another flare up, but just know that if surgery is inevitable someday because this thing is just dormant, than the chances of the surgery being more extensive later is rather high. the smaller and sooner u catch this than the higher chance of a better outcome.i understand your fear for surgery too so don't think i don't get it cause i do; i just want to make sure u see what possible outcome there may be by waiting. i wish u the best of luck in whatever decision u make. please keep us posted.

 

[Kate71]

Thanks Cricket. I'm preparing myself mentally for surgery. If someone could just tell me how extensive it will be, it would be much easier...

 

[cricket1]

yeah that would definitly make things easier on everyone but unfortunatly thats such a waiting game and waking up to find what they have done. because thye doc can't see these and all the tunneling than they can't predict how good or bad the surgery will be. i feel that surgeons that tell their patients for sure how shallow this will, is just guessing and giving his patient false hope when they just have no clue until they get inside.