Pilonidal Study: Laser Hair Depilation as Treatment

Discussion in 'Pilonidal Discussions' started by Sasha, May 5, 2017.

  1. Sasha

    Sasha Administrator Staff Member

    Joined:
    Jul 25, 2000
    Messages:
    1,797
    Helpfuls Received:
    30
    Location (Country):
    USA
    Greetings, all. I've been contacted by a representative from Nationwide Children's Hospital in Columbus, Ohio about a study they are working for treating Pilonidal with laser hair removal. They are in the funding stage and will be recruiting participants from the local area soon. The PSA has become a stakeholder to assist in their study. Information about the study is here: https://clinicaltrials.gov/ct2/show/NCT02778152

    I offered to post their questionnaire here on the forums to gather opinions from people suffering to help their research be as extensive as possible. The questions are below.

    If you feel so inclined, please copy/paste the questions and add your answers. I'll forward on to the research team.

    *********************************
    1. Pilonidal disease is a very difficult problem and treatment often takes a long time. Is there anything that you wish you knew at the beginning when you were first diagnosed with pilonidal disease that you know now?



    2. In our study, our main outcome we are studying is the rate of returning pilonidal disease at one year of laser hair removal as it compares to chemical hair removal/shaving. Other outcomes include days of school or work missed, satisfaction with your healthcare related to your pilonidal disease, your quality of life related to your healthcare, how well you are complying with treatment, and the burden that treatment of your pilonidal disease you must endure. What outcomes do you care about most and do you think we should study?



    3. In our study, we are allowing all-comers with pilonidal disease to enroll. Do you think this is acceptable or do you think we should limit this study to patients who have only had one episode of their disease?



    4. In our study, we have patients that enroll be randomized, or chosen by chance, to either get laser treatments or come to clinic for chemical hair removal/shaving. In the group that gets only chemical hair removal/shaving, we will allow them to undergo laser treatments free of charge after one year. If you were faced with this potential delay depending on which group you were randomized to, would you still enroll in the study? (For healthcare providers, do you think patients will…)




    5. Do you think pilonidal disease is an important area to study? Why?



    6. What was the worst part of your experience with pilonidal disease? (pain, smell, number of visits, physical limitations, fear, social limitations/withdrawal)



    7. Did you need to have a caregiver/parent help with your pilonidal disease?



    If yes, did you feel any of the following: embarrassment, shame, loss of personal dignity.



    8. Is there anything else you want to share with us about your experience with pilonidal disease or how we should design/conduct this study?
     
  2. wewillsucceed

    wewillsucceed New Member

    Joined:
    Apr 23, 2017
    Messages:
    1
    Helpfuls Received:
    0
    Hello Sasha,

    I have seen a lot of posts from you which have been really helpful. Thanks for keeping this website organized throughout the years. I want to help spread awareness of this disease as much as possible, most importantly correct in nature.

    I have added below the story I posted in this website in stories page. I will answer briefly questions above as well:
    1. Just that physician should have told me that it is pilonidal cyst and referred me to a Proctologist. Instead it took a year to be referred to proctologist by physician then general surgeon.
    2. Yes do we need to remove the hair life long after surgery?
    3. Study must be divided into single occurrence cases and then two or more.
    4. I will not.
    5. It is definitely. It's like hidden everywhere, no one knows exact info on this. Even surgeons go by their experience.
    6. Smell, number of visits, physical limitations, fear, social limitations/withdrawal and the worst was not able to do abs workout in the gym (I know it doesn't sound like worst)
    7. I had caregiver after the operation and she was really well experienced about this and had seen this before. So no embarrassment or shame.
    8. Please read my story below.


    My Story

    Here is a good(mostly) overall story for pilonidal cyst from my perspective. I am now 27 years old and had marsupialization a week ago.

    Not the best story writer but I'll write it from bottom of my heart or better is from the bottom of my butt.

    So this started somewhere around summer of 2012. I saw that there was a crust like something on top of my crack when I woke up. I was not sure what happened last night. Then it happened again and then again. It was mysterious thing, not a wound, not a burn, and definitely not a STD. After a few months it stopped and left a bump there. Fluid constantly draining out of it, slowly. It wasn't painful. At first I believed that it will cure itself and then when it didn't I started to not think about it and just let it be.

    I was really embarrassed about this and would not talk to anyone about this, even my close friends. My underwear would have marks from draining fluids, so I would choose darker shades of underwear. This didn't solve the problem but was atleast better than a white underwear. Somedays it was all fine and very little puss would drain and no pain. Some days would be blood drainage and lot of liquid, with pain but bearable.

    It wasn't untill I graduated and started working in Feb 2016 that I went to a physician. He would recommend me to take antibiotics and come next month. Did that and nothing changed. He gave me other antibiotic next time and advise to take bath in a tub with warm water. Did that and nothing changed. It was after 3 months that he referred me to general surgeon. I went to him and prescribed me anti biotics again which gave explosive diarrhea but nothing happened to cyst. Then after couple of months he opened the cyst that was on top of my crack and drained, cleaned, and stitched it. I thought I was cured but this wasn’t the end.

    I went back to him to get stiches removed and it was still draining. The assistant physician put some ointment in it and said to take warm water tub bath and hopefully it will go away. So, a month passed in hope of getting cured. I went back to physician and then he examined it again carefully and referred me to a proctologist. I saw my rectal surgeon the same day and she said its PILONIDAL CYST. This was the first time I heard the term and I had it for almost 5 years.

    She set me up for the surgery immediately and I went back home. I started my search on this and came this website. I assure there is plethora of information in this website. I believe it is great tool for anyone going through different stages of pilonidal. So I read stories, forum, homepage info etc. I wasn’t sure what procedure I should choose. Before surgery, I went back to Surgeon to explain her what I learnt and ask her opinion. She was helpful in explaining and letting me decide what I am comfortable with. She suggest marsupialization and backed up with her experience of dealing these cysts.

    I met with another surgeon, just for second perspective. He looked at my cyst and said that it was a good choice to go for surgery and let a proctologist do the job. Also bonus info, this general surgeon had pilonidal cyst himself when he was 18 and he removed it at the age of 29 by closed surgery. He said no reoccurrence after that and he looked like 50-55 years old. After meeting up with this general surgeon for advice and searching internet for hours, I went for surgery.

    They prepared me for surgery by giving me local anesthesia and I don’t remember when the surgery got completed. I was laying on my back and woke up after 1 hour of the procedure. My roommate’s mom was there throughout the surgery and drove me back and took care for couple of days. Such a selfless lady.

    So post op, I am changing my dressing everyday. FYI, I had cyst with no abysses, hence the cut or opening is small and is already 25% recovered after 4 days of surgery.

    I just wanted to tell the people suffering with this. Please go out and get with a surgeon. This will not heal itself. I believe only half of the people having this condition visit pilonidal.org and only half of them write here or even less. Most of them do because they suffered a lot and seeking solution. If you wait till it is really painful to get fixed, that will be too late. You will be eventually alright but it will be a longer recovery time and more intricate procedure. That’s all I can tell from my experience and hopefully more people become aware of this and get early diagnosed.

    It’s been 4 days only and I feel already better. Hopefully I will recover soon. Oh and during my internet search I read something like this from a gentleman who just had surgery; “I pray that all the fellow pilo mates get well soon and find a cure that suites them. This is the last or second to last time you’ll see me here, as in few weeks I will be back on track doing things I love. I will be somewhere in a forest or climbing a mountain or conquering the ocean or lifting heavy ass weights.” Chao!
     
  3. pilofighter

    pilofighter New Member

    Joined:
    Jan 4, 2017
    Messages:
    49
    Helpfuls Received:
    2
    1. Pilonidal disease is a very difficult problem and treatment often takes a long time. Is there anything that you wish you knew at the beginning when you were first diagnosed with pilonidal disease that you know now?

    Oh gosh, absolutely.

    If I knew what I know now, back in 2007 I would have had it lanced/drained, and gone for the absolute minimally invasive procedure. I would have chosen GIPS/pit picking first, and if it came back, I would have done it again. I understand there are now even LESS invasive things like laser. I rushed into the cleft lift, and I regret it.



    2. In our study, our main outcome we are studying is the rate of returning pilonidal disease at one year of laser hair removal as it compares to chemical hair removal/shaving. Other outcomes include days of school or work missed, satisfaction with your healthcare related to your pilonidal disease, your quality of life related to your healthcare, how well you are complying with treatment, and the burden that treatment of your pilonidal disease you must endure. What outcomes do you care about most and do you think we should study?

    Do no harm. I would be happy to keep going in for whatever, as long as I could be confident the disease would be stopped in its tracks, and would NOT get worse. So I would be worried about laser or something like that leaving it below to continue spreading/worsening.



    3. In our study, we are allowing all-comers with pilonidal disease to enroll. Do you think this is acceptable or do you think we should limit this study to patients who have only had one episode of their disease?

    I think the "severity" of the disease should be clearly defined, it seems totally scattered. Is it # of sinuses? Time from first noticed? # of procedures? Probably working your way up from least severe, like when someone first notices it, would be best.


    4. In our study, we have patients that enroll be randomized, or chosen by chance, to either get laser treatments or come to clinic for chemical hair removal/shaving. In the group that gets only chemical hair removal/shaving, we will allow them to undergo laser treatments free of charge after one year. If you were faced with this potential delay depending on which group you were randomized to, would you still enroll in the study? (For healthcare providers, do you think patients will…)

    Probably not... I mean, the sufferers of this want it done with, so if laser is that in the beginning, I can't imagine wanting to wait for it.


    5. Do you think pilonidal disease is an important area to study? Why?

    Absolutely. It's a nightmare for those who go through it, and nobody talks about it. You only hear of people having it or knowing someone with it when it comes up first. It's not conversation-friendly like "Oh I just had knee surgery."



    6. What was the worst part of your experience with pilonidal disease? (pain, smell, number of visits, physical limitations, fear, social limitations/withdrawal)

    Pain, embarrassment, anxiety, inability to talk about it, now post-cleft lift, anxiety that I rushed into the "nuclear" option. Lack of education on the subject, both patients and especially doctors.


    7. Did you need to have a caregiver/parent help with your pilonidal disease?

    No, it would have helped immensely, and I might not have rushed into the cleft lift. I was overseas.


    If yes, did you feel any of the following: embarrassment, shame, loss of personal dignity.

    No, I have talked to a close family member at length about it, but that person is the ONLY person I can talk to. It was and is very isolating, so yes embarrassment shame and loss of dignity are absolutely factors.

    8. Is there anything else you want to share with us about your experience with pilonidal disease or how we should design/conduct this study?

    I support this and anything minimally-invasive wholeheartedly. Doctors are sometimes all too keen to rush into hacking your ass apart, without considering long-term effects, or the mantra to "do no harm."
     
    JoyceRedn found this helpful.
  4. nmbr1sun99

    nmbr1sun99 New Member

    Joined:
    Nov 2, 2009
    Messages:
    39
    Helpfuls Received:
    0
    Location (Country):
    United States
    1. Pilonidal disease is a very difficult problem and treatment often takes a long time. Is there anything that you wish you knew at the beginning when you were first diagnosed with pilonidal disease that you know now?
    - I wish i knew how long the expected recovery was going to take (almost a year for the incision to close)


    2. In our study, our main outcome we are studying is the rate of returning pilonidal disease at one year of laser hair removal as it compares to chemical hair removal/shaving. Other outcomes include days of school or work missed, satisfaction with your healthcare related to your pilonidal disease, your quality of life related to your healthcare, how well you are complying with treatment, and the burden that treatment of your pilonidal disease you must endure. What outcomes do you care about most and do you think we should study?
    - Laser hair removal should be listed as a means for future prevention. Shaving and/or creams can cause in grown hairs which is a leading cause of the cyst. I had to miss 2 weeks of work, and had countless follow ups for care of my wound. Also I went through many states of depression as the healing was taking so long. My quality of life was not good during the recovery phase.


    3. In our study, we are allowing all-comers with pilonidal disease to enroll. Do you think this is acceptable or do you think we should limit this study to patients who have only had one episode of their disease?
    - Leave it open for everyone


    4. In our study, we have patients that enroll be randomized, or chosen by chance, to either get laser treatments or come to clinic for chemical hair removal/shaving. In the group that gets only chemical hair removal/shaving, we will allow them to undergo laser treatments free of charge after one year. If you were faced with this potential delay depending on which group you were randomized to, would you still enroll in the study? (For healthcare providers, do you think patients will…)
    - Yes i would still enroll



    5. Do you think pilonidal disease is an important area to study? Why?
    - This is very important as it impacts the quality of life for many individuals.


    6. What was the worst part of your experience with pilonidal disease? (pain, smell, number of visits, physical limitations, fear, social limitations/withdrawal)
    - The worst part was recovery. I relied on my fiance/wife to help care for me during the 2 weeks i was basically in bed. Then the depression hit with the slow healing process. I am always fearful now of the way i sit, and the activities i do because of the scare as it feels un-natural when i used to exercise.


    7. Did you need to have a caregiver/parent help with your pilonidal disease?
    - My fiance/wife was my support and care taker but on a limited basis.


    If yes, did you feel any of the following: embarrassment, shame, loss of personal dignity.
    - No


    8. Is there anything else you want to share with us about your experience with pilonidal disease or how we should design/conduct this study?
    - I tried to have my insurance company approve laser hair treatment but they denied it stating that it was not a medical procedure that would be beneficial to my care. This was even with a note from my Doctor. The cost of laser hair removal for an insurance company over the cost of surgery is something that should be compared.
     

Share This Page