Going on a year and a half now, this is my story..... (Warning: Very long and detailed story)

Discussion in 'Pilonidal Discussions' started by Marc1, Dec 6, 2017 at 6:21 AM.

  1. Marc1

    Marc1 New Member

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    Hi, my name is Marc im 17 and I was diagnosed with a pilonidal cyst in June of 2016. After approximately 7 surgeries since first being diagnosed, I am still not healed. Ill give you a bit of insight on my journey so far. It started as what I thought was a severe boil and treated it as such but later started to experience very extreme pain(to the point where I couldn't sit down for a few days because it felt like a knife going into my tailbone.) I saw a dr. and was diagnosed, I was told that I should contact a surgeon immediately due to the severity of my case. After making an appointment and meeting with the surgeon he told me he would like to get me booked for surgery immediately to remove it. Fast forward to surgery day (mind you this was my first surgery ever) the entire surgery took 3 hours. I was then discharged from the hospital and thus started wound recovery. I was told to in short keep the area clean and apply bandages every so often, my surgeon wanted me to visit him every 2 or more weeks. The surgeon had also said after doing this exact procedure over 300 times it was by far the worst case he’s ever seen......which didnt help me mentally at all, anyways I was given heavy opiods for pain as well that helped but later down the road I realized were really messing me up. After attending to my wound for so long I did the best I could with the knowledge that was given to me to care for the area, and unfortunately during another visit the dr. told me that the wound was infected and I that I needed another surgery to assist the infection and clean up the wound. Fast forward again and the surgery was about an hour and a half, however this time I was given a portable vac that I was to carry around wherever I go, so that it drain out all the fluid and bacteria that was at the wound site. This also included an every other day nurse visit to my house to remove the bandage and to replace it and to make sure my vac was working properly. All was going well until about 3 weeks the nurse that was assigned to me couldnt make it so the agency sent another nurse out. In my mind I thought that every single nurse sent out to me had wound specialist training and knew exactly what they were doing which they dr. had reassured me of, however it was not the case....... When the new nurse arrived she had told me what she was going to do and it all sounded correct however what she didnt tell me was that it was her first time doing it, so when she went to remove my bandage she pulled too hard and mind you I had stitches, she pulled each and every one of them out. It was the most painful and unforgettable experience ive ever had, I gave out a screech and sat there just grunting and the nurse had told me that I was severly bleeding and I needed to get to the hospital, and after her pacing after 15 minutes panicking and calling her supervisor after I was laying down and bleeding out she frantically went to see if anyone was in the house. Luckily my sister was there and she contacted my step-dad who was close by. When he arrived he was in shock of the situation but very calmly grabbed towels for the bleeding and rushed me to the hospital, which is 30 minutes with traffic from my house and we finally arrived and i got out of the car with 2 beach towels soaked in blood. I still till this day dont understand why she didnt call 911. Anywho it just so happened my surgeon was in a surgery at the hospital when I got there and rushed over to me, cauterized my wound and shot me up with meds and told me that I needed emergency surgery. Once again I was discharged and in recovery this time I was told to take sitz baths every time I was to have a bowel movement and to clean the area and bandage it up, etc. If it could get any worse, it did... After one of my many check up appointments afterwards I was told that I should see a plastic surgeon cause my problem now was for the area to close up. All in all the surgeon/dr. that I was seeing was terrible and I knew from the first surgery but thought that he knew what he was doing after attending to so many cases relating to pilonidal cysts. After hearing from that dr. we contacted a plastic surgeon and after meeting him he wanted to have a surgery in which he would rotate a flap of my skin in hopes that the area would heal and this would be the fourth surgery however I had very good expectations of the plastic surgeon for he had way more knowledge and expertise from the first one. After that surgery things were going well and I had still been doing the sitz bath’s and wound care and a couple of other various techniques. Fast forward, I had another 3 surgeries with the plastic surgeon all in part of trying to close the wound and one surgery the wound had opened so much and apparently the plastic surgeon had found a drainage tract deeper in me from my pilonidal cyst that he had taken out. Ive had multiple different drains after surgeries and one that had come out before the dr. had seen me and he was suprised cause he double stitched it, which then I had to take gauze and stick it into a hole on my butt cheek that went 6 inches deep. Anyways the last surgery I had was about 2 months ago and ive been healing really well, the plastic surgeon I was seeing decided to start experimenting with different techniques since we’ve exhausted the typical ones and suprisingly it has worked for now. He had me taking vitamin A+D ointment and putting it around the wound in hopes that the wound heals from the outside in and to clean it with low strength hydrogen peroxide before I put the ointment on and put gauze in there afterwards. Ive learned from my own personal mistakes of doing things I shouldnt be doing, such as things that would put strain on my lower back, and Ive progressed a lot since the beginning and ive gotten so close to fully healing multiple times but have yet to get there. Its gotten as small as the size of a pencil eraser and now the size of the tip of a pen and it may sound like im pretty much done but im not..... Its gotten this close before and opened a large amount, for me anyways its really hard to heal especially in that area. As for life as a 16 year old now 17 year old I havent been able to run/ exercise, use a pool, and recently havent been able to drive because I dont want to risk it opening from any direct pressure and havent been to a regular school in a year now, ive been doing my classes online. Im now in my senior year wanting to go to college next year but havent been able do much as for fun in a year and a half now. Its this situation has taken over my life and I just want to live again...... Ive learned a lot about this(what I wanna call) disease and ive found various treatments and techniques that have helped along the way. Even though I am not out of the woods yet I would very much like to help others that are going through treatment for it and really really wish and sometimes think about wanting to come up with a easier and more simple cure for it. I really really do not want others to go through what ive gone through and I think about it quite often. If anyone has questions at all, please feel free to ask id love to help and I do apologize about the longevity of this story and the possible poor grammer, its 6 am and I havent slept yet. I appreciate all that read this and if anyone has any reccomendations or suggestions on wound recovery specialists please feel free to message me!
     
    Last edited: Dec 6, 2017 at 10:33 PM
  2. Susan Stanford

    Susan Stanford Helpful

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    Marc, thank you for sharing your story. I am so sorry for what you have gone through with pilonidal disease. My son has suffered with this disease as well. Are you in the UK?
     
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  3. Marc1

    Marc1 New Member

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    No, I live in the US, California to be exact. I appreciate your kind words, thank you!
     
  4. Susan Stanford

    Susan Stanford Helpful

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    There is an expert on pilonidal disease in California! My son had 4 excision surgeries over 6 1/2 year’s that failed and left him with chronic, draining, infected wounds. I finally began searching on the internet for an expert on piolonidal disease and I found Dr. Sternberg in San Francisco. We live in Tennessee and came 2000 miles for him to do a cleft lift procedure on my son. He healed him! He has performed over 1500 successful cleft procedures and healed one woman who had had 16 previous surgeries. Hopefully, you are almost out of the woods and will be completely out soon. But if not, please contact Dr. Sternberg and send him your info to get his advice. He truly is an expert on this disease. His website is www.pilonidalsurgery.com
     
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  5. Marc1

    Marc1 New Member

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    I will definitely check him out if things don't go as planned, that's really close for me as well! Thank you so much Susan really appreciate it, means a lot!
     

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