My Story

Discussion in 'Pilonidal Discussions' started by Kurt M, Mar 10, 2014.

  1. Kurt M

    Kurt M New Member

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    thanks for responses. currently had to start a course of anti biotics again to hopefully prevent current recurrence by noticing it before it makes it to severity level where anti biotics have very little effect, and requires medical proffessionals to get it to come out. I hate having to decide whether to take anti biotics or not... knowing all the problems they can cause. Sleeping so little lately just from the anxiety increase... guess I'm doing better than I could be though.

    Responses made me feel somewhat less scared with the responses about how it open excision doesn't always turn into a nightmare. I'm without the money to travel and get a cleft lift done elsewhere. It sucks cause I'd prolly go get a cleft lift, but the financial burden it'd put on my family would be upsetting as I do not have anywhere near the kind of money to pay for it. Also have a opioid painkiller dependancy already, which is one of those things that worries me for surgery since I already do not have that same natural endorphin production most users go into pilonidal surgery with, will likely be at much higher painkiller dose than most pilonidal surgery recovery patients are due to the tolerance that I already have, which in turn will be that much harder to get myself off it when alls said and done..

    Its about 10months since that first flare up so I guess im still within the "new-comer to pilonidal disease" stage where it probably effects you more psychologically than after having dealt with this (pain in the a**) for a longer period. Probably(hopefully) gets easier over time. Still waiting on surgery date, surgeon said "in the fall" but he doesn't seem to care as much as I feel like he should, especially with all the potential complications of living with a pilonidal (increase in potential for squamous cell carcinoma, potential for infection that can make it to the stage of sepsis, etc). A lot of the time honestly I feel like I'm going to die.. but I think its the result of having like somewhat severe health anxiety.
     
  2. Kurt M

    Kurt M New Member

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    Going to toss quick update up. Generally I've been doing better, but going to be brief because I need to get myself into a scalding hot bath (we alll know these)

    Flare up is currently happening, I have been in pain for the last 3weeks not necessarily severe (consider that I am on 8x percocet 5mg per day for chronic pain though as well) until recent. I felt the "oh no" about 3weeks ago, of which within a few days I began my course of keflex (6th course to be exact in the last 10months). Luckily my anxiety helps with hypersensitivity I guess, I kept it away from a full unable to walk in pain flare up for 11months till now. I had some bleeding coming from my cyst/abscess about 8 or 9 days into the 10 day course of keflex, of which I knew then it was surely infected and I didn't just assumptively take antibiotics for nothing, great I guess, but IS IT REALLY haha.... but oddly, it stopped bleeding. I put on a topical anaesthetic/anti inflammatory cream (lidocaine diclofenac) daily multiple times to aid in pain relief, as I and my doctors think I have nerve damage under the coccyx from my first tailbone, after all the usual tests (MRI, bone scan, etc etc). I worry putting this on covered the bleeding area and made it stop draining as a result..... where now im getting that "starting to walk weird" pilonidal problem time...

    Luckily I have an appointment with my GP tomorrow, so she can look at it and decide whether I should be hospitalized or another dreaded course of anti biotics, but I will report back with update if i live to talk about it (haha health anxiety that thing where every time my pilonidal is filling up, I feel like im going to die before I make it onto the other side.

    I think partially why I've felt better lately though is because I have talked it over with parents and we're very seriously considering travel to get a cleft lift by a specialist. Partly in due to what the overall majority of sufferers here tell me to do, partly just because I don't want to be unable to do anything for months and months and months and maybe have an unhealing wound. After all, my sinus never even fully healed. I think I maybe blame that on the inexperienced surgeon who lanced it at the ER and practically gave me PTSD from the experience, although maybe more sinuses end up like that than I assume.

    Just sucks to go through this, hopefully I'll get a note tomorrow from my doctor to ensure they give me a fentanyl shot or some full on anaesthesia level sedation if another lancing is necessary. I will not go through that again, just thinking about it makes me want to file a complaint with the ER that preformed my first lancing although it would be meaningless im sure.

    Will report back if I survive lol. Big thanks to this site, support for people that otherwise may not have it is truly one of the best things the internet can be used for.
     
  3. Kurt M

    Kurt M New Member

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    I made it through the recurrance.... but again I find myself heavily depressed..

    I just got my wisdom teeth pulled on wednesday the 15th(2 days ago), all 4, and despite the procedure going relatively fine... I've struggled with my insomnia much to my defeat over the last few days. The day of the wisdom teeth extraction I got 30-45minutes of sleep total prior to the 12am appointment.... just getting a few 10-20minute spans of sleep after 10:00 AM. Despite the stress relief of no longer being worried about the surgery, the next night again, I am awake until after 10am before I get any sleep. Last night I broke down at 4AM again and took sleeping pills, which got me about 4 hours and then I was up for another 2, and then fell back to sleep for another 2 hours...

    Insomnia just messes with my head so god damn much, I literally go from having days/weeks of being somewhat mentally stable, to being so beat down that im like dying.... seriously sucks. Well off to try and sleep.... hopefully I'll have all this surgical stuff behind me in the near future.
     
  4. LILLY

    LILLY Very Helpful

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    You said awhile back that you have sought mental health support. I would suggest you keep in close contact with them and work to get a medication regimen that will even you out. All of these extreme feelings should be reported. You really don't have to live like this.
     
  5. stephen

    stephen New Member

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    I just thought I'd throw this out there for all my fellow Pilondial cyst sufferers....I bought a Silkin Flash N Go, a light implused hair remover...bought it from Bed Bath & Beyond...every time my cyst tries to flare up, I zap it with the FlashnGo...once in the morning and once at night...makes the thing go away! I figure that eventually the cyst may stay away permanently ( I wish!). I had surgery and they told me it wouldn't come back....WRONG!!!! Hot baths don't do a thing for me. But the Flash N Go is worth a try my friends....the website even offers a 60 day free trial but I'm keeping mine! A few zaps of light are less painful than more surgery!
     
    Tonster found this helpful.
  6. stephen

    stephen New Member

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    prayers go out to you Kurt M...if I had the money, I'd send you some to help you out.
     
  7. Kurt M

    Kurt M New Member

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    thanks for responses... been making more calls to get a cleft lift figured out. Just getting hindered by other stuff constantly, like got incredibly sick a week and a half ago with severe allergy response and stuff (with no known allergies this was cause for concern) ended up @ ER and had to be on Prednisone for 4days to get my immune system out of overdrive, still dealing with having severe heartburn daily since that all happened & rashes whenever i scratch.. health problems galore fun stuff.

    Been calling around today to a doctor I heard did the cleft lift, Jean Lauzon, in Surrey, British Columbia. They said when I called now that he DIDN'T do the procedure and gave me a phone number to another plastic surgery person that may do it, although seems like they have communication errors since my dad called and heard differently I'm pretty sure. Kinda sucks, might need to go all the way to somewhere in the U.S to get the cleft lift done, don't think I'll put myself through any procedure as sub-standard to the cleft lift as many of the others are, not worth the risks really...

    Anyway if anyone has information on people in Canada that do the cleft lift do not hesitate to post it really would help as I'm kinda trying to avoid reaching a dead end on finding a cleft lift surgeon within Canada, would rather be able to stay within the country.. thanks for reading!
     
  8. Kurt M

    Kurt M New Member

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    bumping with good news.

    Surgery on my tailbone w/ a specialist who happened to be trained in the US to know how the cleft lift method & many other methods for pilonidal cyst removal, as well as the fact hes a plastic surgeon.

    My surgery begins around 7:30 AM - 8:00 AM FEBRUARY 2, 2016

    sorry for no updates for any who have followed any of what I've wrote so far, I'm in a lot better place now mentally & both pain control/control over my entire life in general, and have high hopes for this surgery. The surgeon said theres about a 2-3% chance for the surgery to have a complication in the healing outcome stage, but its been very infrequent in young people that hes done his procedures on that exercise the proper post-op care, and I'm pretty meticulous about that kind of thing.

    so many moments in earlier posts here was like 100% impossible to see any light at the end of the tunnel, but since meeting the surgeon who is going to be operating on me & being confident enough in his skill & peoples reviews of his ability as a surgeon as well as my own doctors review of him, it was easy to not be so panicked about finding someone competent in Canada to do this procedure anymore.

    My procedure will have a drain for some amount of time following the surgery, which is going to suck I'm guessing, haven't googled what they looked like even as to not make myself have sleepless nights prior to surgery, even though I might anyway just due to 3years anticipation of this surgery; ultimately that feeling of not knowing exactly what the area of your body being operated on is going to be looking like right after you wake up, whether there will be a worse problem below the surface than the person knows about, etc.

    Trying to be mentally prepared though, hard for someone with moderate to severe anxiety disorder though not going to lie. Having the right supports & doctors & gameplan helps though.
     
  9. ellysparkles

    ellysparkles Very Helpful

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    Hey Kurt,
    How did your surgery go? Sending your some good thoughts and prayers! Wishing you a speedy and easy recovery.
     
  10. Melbourne_Mum

    Melbourne_Mum New Member

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    Hey Kurt, just wanted you to know there are lots of success stories on here and not to worry too much. My daughter just went through it after having to deal with the pain for a year while writing final year of school. She had the modified Karydakis which is a cleft lift with a small flap and it went pretty well. 4 weeks since surgery and although the first 2 were uncomfortable, but not too bad! It's healing up and she says it was well worth it. We were surprised to find that there were quite a few colorectal surgeons that offer this op / I really think the cleft lift is the answer. Ellysparkles helped us through it. I see she responded above.
    Don't be too disheartened. Just get all the facts (and don't terrify yourself with the google images!)
    Good luck and remember that lots go through it and come out the other side, healthy and pain free. (Melbourne,Aus)
     
  11. Kurt M

    Kurt M New Member

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    Update on my flap(cleft lift style method) surgery healing progress:

    Surgery: 02/02/16


    i am back doing everything I was doing prior to the surgery, starting sometime around day 6 or 7. Late day 2 to day 5 was moderately rough, no worse than the day 2-9 of wisdom teeth recovery after all 4 wisdom teeth removed. I also had that done in the last 18 months or so , so thats why i mention it.... this surgery doesn't have to be as bad anywhere near the degree people say/are shown as long as its done right, it wasnt for me, somehow, and i have moderate to severe chronic pain both physical & nerve pain, mild to severe IBS (whch anyone who has, knows its scary as hell having a surgery on your coccyx w/ a wound right next to rectum despite having to go to the bathroom very unpredictably (for some, predictably) & often in a rush, with pain related to that as well..

    by, Kurt - 15/02/16

    fantastic experience thus far, with much shorter lived '''terrible'' moments compared to the amount of improvement & feeling overall beter since then.. not feeling like such a sick person anymore! finished w/ my 10 day course of clindamycin, so figured I'd have waited till that was done 2 post update. cheers and gl to all
     
  12. bonder007

    bonder007 New Member

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    So happy to hear everything is going so much better for you! Just wondering who your surgeon was since I'm also in manitoba, although Winnipeg is a 4 hour drive for me. Everyone I seem to talk to goes straight to the open excision and won't even think there's another way. Thanks so much!
     
  13. Melbourne_Mum

    Melbourne_Mum New Member

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    Wow Kurt, that is just amazing. It's 7 weeks now since surgery and my daughter's incision is STILL draining! The surgeon says it's just a small hole at the bottom of the 10 cm wound. The fluid is a browny yellow - thin. She's now on a 10 day course of penicillin. Hoping it will clear up.
    Can't believe how quick you healed. You are so lucky! Well done.
     
  14. psmm1

    psmm1 New Member

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    Hi Melbourne_Mum, It sounds like your daughter is in a similar situation to me. I hope you don't mind me asking you a couple of questions.

    When you say drainage, how much are you talking about?
    Also, does the hole look like a scab that hasn't healed over properly or is it a clean sinusy looking hole?

    I had my surgery done on 14th Jan (Karydakis procedure) and I have a opening approx 1cm long at the bottom of my stitches. When i went back to the hospital 4 weeks after surgery they told me that the opening is a sinus which has opened up (i.e. a recurrence). But after reading your comment I have a glimmer of hope that maybe its just draining from the wound? the first draining was approx 1.5 weeks after surgery then it closed up until it started draining again 3.5 weeks after surgery (a little bit of blood and pus), then in the 4th-6th week it was draining a small amount of browny/yellow thin pus, now its only draining a little bit of blood. I am talking very small amounts, no need for a dressing. Also it probably doesn't apply to your daughter but as soon as I got someone to shave around the wound and pluck the hairs out around the sinus hole (week 6) the brown/yellowy discharge stopped and switched back to red (blood). So basically its been draining non-stop for nearly 3.5 weeks now but only very small amounts which is only really evident if i press a bit of toilet paper or tissue against it. Thanks in advance - I know I should probably trust the medical professional but she hasn't exactly filled me with confidence thus far.
     
  15. Melbourne_Mum

    Melbourne_Mum New Member

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    Hi Psmm1,
    Apologies for the late reply, it's birthday week in our house - 3 of us! Crazy.
    Your situation does sound similar. Although I think my dsughter's draining a bit more than yours. She wears a pad and there's probably a teaspoon amount every day. We're at 8 weeks now - almost the same as you. Unfortunately the drainage started to turn yellowy green and was thick so I took her to the GP. They did a swab and the results are due tomorrow. She's on Augmentin Duo Forte penicillin so it shouldn't be infected. I don't know - this is so exhausting. She had to defer starting university so it's very annoying.
    She was supposed to see the surgeon today but he was called away for an emergency.
    Anyway it was explained to me that he removed a lot of tissue and all the sinus tract as well as the sinuses, which is I think the point of the Karydakis. So there are a lot of gaps under the flap which need to fill in and sometimes they fill with serous fluid. Let's hope it's just this!! I will write if there's any more news.
    Good luck, hope yours improves. Are you comfortable sitting? My daughter finds it very hard after a few minutes.
     
  16. psmm1

    psmm1 New Member

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    Geez! I hope the draining doesn't carry on for too much longer. The yellowy/green colour does sound like it is infected though? I went to the hospital 11 days after my surgery because it was draining, they said faint red colour I shouldn't worry at all, bright red is probably still ok but green or brown(?) usually means it's infected.

    Did she have a cleft lift or Karydakis?

    As for the sitting - It's not very painful anymore, I am sitting 9+ hours a day at work, but i sit on a coccyx cushion and lean forward as much as i can to keep the weight off my tailbone/wound. I started sitting at the 3 week mark as per the surgeons instructions, but I could only sit minutes at a time. It was more uncomfortable rather than painful, however when getting up i had to take the pressure off very slowly otherwise it was quite painful. It seemed the more I sat the more comfortable it got (but that was probably just because the wound had more time to heal).
     
  17. Kurt M

    Kurt M New Member

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    i appreciate the responses... sorry for always waiting so long between responses. Tapering the Oxycodone & hydromorphone doctors have had me on for 3years daily from chronic pain related to severe infection causing nerve damage and coccydynia as well as PTSD @ un-anaesthetized lancing procedure on fully abscessed ready-to-blow golfball sized swelling on my tailbone, off to the side slightly but pretty much directly over it. ol rookie following basic procedures that he probably had only read about / watched / been told about, put me through the most intense pain of my life on that table. still prolly won't fully forget it ever and how I've never reached closer to 10/10 pain as a man just having tears come down my face while not crying just shaking and tearing and almost breaking the stretcher I was on from how much pain I was in while he digged in my ass, as well (ESPECIALLY) when he put that packing up there as tight as he could without anaesthesia yet still. WOOP WOOP! how we get treated in ER's ftw!

    I reccomend getting a cleft lift or advanced plastic surgery flap method from an extremely reputable surgeon such as the one I did (Dr Avi Islur, supposedly based off google has over 10,000 procedures done and is ranked the #1 surgeon overall for all of canada, who is a plastic surgeon. this is the man who did my procedure, and im basically back doing everything I was now entirely. Not even the slightest complications from the surgery, other than slight numbness over certain area which is somewhat common since I already have neuropathic pain & nerve damage in that location via infection. not surprised)

    +as for when i was sitting, literally days to maybe week at most after the surgery I was back in the computer chair on the coccyx cushion gaming. Maybe im also more used to high levels of pain, but im used to high levels of narcotics as well, so i was tolerant to my medications as well as dealing with the acute surgery pain, and still was doin great. Depends on who does your surgery and the subjective conditions of each and every one of your very important upper / middle buttock areas that we all have :wigglebum::cheer:
    I was traumatized and wasn't myself for months after my first PC abscess flare lancing without anaesthesia on the area to make me unable to feel it, nightmares and the whole 9 of the situation and felt horrible most days.

    My surgery caused no traumatic experience whatsoever , simply just high stress levels prior & after for probably 2-4weeks both before and after the surgery, due to having anxiety disorder and boarderline OCD among other mental issues, and physical issues / chronic pain, this isn't surprising to experience stress like that.

    Ultimately my surgery did not traumatize me unlike my lancing and infection flare the first time around, I would reccomend surgery if you know you have this problem PRIOR to the infection or abscess ever even occurring/getting problematic before you even put yourself through what I went through as a result of this. 7-10days after surgery my life was better than ever prior for 3years since diagnosis, and got exponentially better each day.

    Get your surgery, get better. Its the way to deal with the problem, and get you back to your life. Even if it doesn't succeed first time and requires more times, getting rid of it is whats necessary. Its like a cancer to us who choose to have lived with it, really not worth the mental weight/health results from having it.

    Pain wise the surgery was not even serious, if you are given narcotics that work for you for your pain prior to surgery so that you are verified to not be having a weird ''first time use'' reaction AFTER the surgery, and then having to scramble to the doctor again to get more drugs to try for first time... For me I had worse pain days with general chronic pain than what the surgery did, my tailbone was just uncomfortable due to stitches that were relatively rough as far as the quality of stitch went. Not soft ones.

    2 months of healing process or more is still worth it w/ cleft lift if you don't have to go the PTSD route from a bad bad pilonidal experience during an infected cyst. F that. Its so much more intense of a daily thing dealing with than the drugged out wound care.

    Best of luck to all.
     
    Last edited: Mar 28, 2016

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