New Cyst and Beyond Scared- SO MANY QUESTIONS!

Discussion in 'Pilonidal Discussions' started by ruhnay, May 5, 2012.

  1. ruhnay

    ruhnay New Member

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    Hello. I'm about to type a lot, but I really hope at least someone reads it to give me some hope, advice, or any help at all.

    So about a year ago I experienced some extreme tailbone pain and I went to this Bone and Joint Clinic and they took some x-rays and saw some inflammation, but said it was related to me sitting in an awkward position on my tailbone too much. They gave me some anti-inflammatories and some pain killers and after a week, all the pain went away and I thought I was all done with that craziness.

    However, about a week ago I started feeling the same tailbone pain, so I went to a health center because the Bone and Joint place couldn't take me in for a few days and I wanted something for instant relief. The doctor told me that she thought I had the beginning stages of a pilonidal cyst and that I should go see a surgeon immediately to have a cyst removal surgery.

    You should know, I am quite possibly the biggest needle- and hospital-phobic in the universe, so the idea of having any type of surgery made me basically collapse. I was paralyzed with fear and called my mom who works at a hospital. In her attempt to calm me down, she got in contact with a doctor she knew and made me an appointment to get a second opinion. He also wrote me a prescription for some pain relievers so I could function until my appointment.

    I did tons of research, but all the pictures I found of pilonidal cysts are WAY worse than what I see on myself. I don't have any holes, and until today I haven't seen anything at all. It just feels sore and it's very painful to put pressure directly on my tailbone. I looked in the mirror about an hour ago and now I'm starting to see a bit of a lump there that just looks inflamed, but with no whiteness or anything. Does this mean it could be something else? Or is it just really deep? Or is it just the beginning stage and will get worse?

    I'm trying to prepare myself for my appointment, which I'm already going to be panicked beyond belief for. After much consideration, if they offer me surgery, I feel like it'd be my best choice because the idea of being awake while someone cuts me open to drain it sounds HORRENDOUS- especially after reading some stories on here where people weren't even on a painkiller during the process. I was also told that surgery would remove the entire thing and the problem would be done with forever. Why do so many people want to avoid the surgery? Is it really that bad? I think being put under anesthesia would be the easiest thing for me to go through because I don't have to be aware of anything that is happening so I can remain calm. What types of surgery are there? Is cleft lift the thing they are referring to by removing everything?

    My appointment to just be looked over is on Thursday. My college graduation is May 18th. I have no idea how bad surgery would be, but it would kill me if after all this time I couldn't even walk for my graduation. How long is recovery time usually?

    Any advice or answers to my very many questions? THANK YOU TO ANYONE WHO READ ALL OF THIS!
     
  2. Jah is Real

    Jah is Real New Member

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    Sounds like you are in the beginning stages of PD. The pain is excruciating. Try to avoid sitting.

    The main reason people want to avoid the surgery is because it sucks. There is an painful, long recovery and no guarantee it will stay away/

    There are 3 types of surgey ; open excision (they cut it all out and left open to heal), closed excision (cyst removed and stitched up) or you can have it lanced. The cleft-lift is an entirely different procedure. No gurantee that will cure it though.

    Recovery time is 5 weeks to a year. Could be longer but that's on the extreme side. All the best.
     
  3. ruhnay

    ruhnay New Member

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    Thank you for responding!
    I've done some more research on the cleft-lift procedure and haven't seen anything negative about it at all. Have you ever heard anything bad about it? Seems like the best alternative to the typical surgeries that seem to give people so many issues.
     
  4. Jaredsmom

    Jaredsmom Very Helpful

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    Speaking as a mom of a former pilo patient, I will try to answer some of your questions.

    The reason so many people want to avoid the typical pilo surgery, called excision, is because it is oftentimes very very painful, heal time is slow...and sometimes there is problems with getting the wound to heal at all....or if it does heal, getting it to stay closed. Another issue is in the reoccurance rate....excision surgery does not have a good enough success rate to warrant the extreme pain that comes from the wound needing to be packed daily, sometimes for months, and the slow heal time.....if it heals at all.

    when my son was diagnosed with pilonidals, he had a simple incision...called lancing, and a draining of the abscess. He was supposed to be healed within 2 weeks. After six months of my doctor's assurances that the wound should eventually close, we looked for a miracle. I reasearched cleft lift, read the testimonials here on this forum.....i also looked at the pictures of excision surgeries......the pictures were enough to make me feel like vomiting. THAT did not look like a cure, it looked like butchery. I decided .... based on testimonials from people who had had cleft lift done.....to have that surgery done instead of excision.

    The surgery was quick, and the post op pain was mild. The wound looked clean and neat.... there was a minor glitch due to a stitch that refused to dissolve, but that was taken care of when the surgeon removed it with a pair of tweezers during a check up, and the wound closed and stayed closed. my son resumed his pre pilo activities....including horseback riding.....and we kept our fingers crossed......praying there would be no reoccurance.

    That was four years ago. Today my son is a normal man....he bikes, he rides his horses, he lives his life without fear or worry of a reoccurance. He lives a normal life.....thanks to cleft lift.

    NOTHING in life is a guarantee, nothing is 100% perfect....but cleft lift is the best chance ANY pilo sufferer has at a PERMANENT cure.....

    and by the way, his butt does not look deformed or weird. That is a common misconception about cleft lift.....it does not cause your butt to look deformed. And naked, my son says all he has is a small silver, thin line above is cleft about 3 inches long....other cleft lift patients report that they have NO visible scarring at all....not even a thin silver line....

    My opinion: if you have the chance to have a NORMAL life back and there is no physical deformity caused by this cleft lift surgery....you'd be a fool not to give it a shot.
     
  5. ruhnay

    ruhnay New Member

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    Thanks so, so much for your response. That's definitely what I wanted to hear.

    Two more questions- is anyone able to get this type of procedure or does it have to be an extreme circumstance after other surgeries have happened? And did you have any difficulty finding a surgeon who knew about this procedure? It seems like it is a new type of surgery so not all surgeons would be prepared to do it.
     
  6. Durango

    Durango Very Helpful

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    Great post Jaredsmom. To answer your questions Ruhnay, the cleft lift surgery actually is not that new, it has been around for several years. I have no idea why more surgeons are not practicing it. If your looking for a surgeon there is a list on this website. Anyone can get a cleft lift. From my understanding initially it was reserved for patients that had extreme circumstances or difficulty healing from other operations but now many doctors perform the operation as a first procedure. If you find a surgeon that performs the cleft lift and pit picking he/she may want to do the pit picking first (that's what my doc did). If that's the case I would give the pit picking a shot because it is a pretty simple procedure that can be done in the office with very little discomfort or scaring afterwords.

    Take a look at this website I found it very helpful prior to my surgery. http://www.pilonidalsurgery.com/

    I'm glad to see that your doing your homework before getting an operation. Good luck
     
  7. ruhnay

    ruhnay New Member

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    Thank you very much, Durango! I actually read your posts earlier about your cleft lift and feel even better knowing you've had such a great outcome. I'll look more into the pit picking for sure.

    Is it normal that my cyst hasn't developed into a big pussy thing or that I haven't developed a sinus? It is just a big lemon slice-sized lump right at the top of my butt. I'm hoping it won't get any worse. Three more days until my appointment!
     
  8. Durango

    Durango Very Helpful

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    I don't know if there is anything that can be considered normal with a PC. I never had pain at the bottom of my tailbone and never had any open sinus. I just had a cyst that formed at the top of my crack. About every three months for 6 years it would get large and I would drain it on my own using a heat pack or hot water. I think everyone is different and we all have different symptoms but from your description it certainly sounds like a PC. Good luck at your appointment.
     
  9. ruhnay

    ruhnay New Member

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    Well, the cyst has gotten quite large now that I've run out of anti-inflammatory steroids and the pain is unbearable. I can hardly walk at all. I still have my appointment tomorrow to be checked over for the first time by a surgeon. My mom called around at some other hospitals trying to find someone who knows how to do the cleft-lift procedure and we've only found one close to us (a 3 hour drive) and they won't be able to take me for surgery for another TWO WEEKS.

    What should I do? How can I control/minimize this pain beforehand? I definitely can't live like this for the next two weeks. I'll be surprised if I can handle this for even a few more days. Agony is an understatement.
     
  10. Jah is Real

    Jah is Real New Member

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    To minmize the pain, take a hot bath but avoid the area. lay on your stoamch, try to avoid sudden movements. Take your time when getting up and moving around. When you use the bathroom you might find the pain is worse. Don't force anything and try not to push. The Doctor will thoroughly examine the area. I wish you all the best.
     
  11. Durango

    Durango Very Helpful

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    If you can not get it to drain on it's own by using a heat compress or hot bath then you need to go get it drained. I suppose the surgeon will do that for you tomorrow. Good luck
     
  12. razonian

    razonian New Member

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    I had a PC a long time ago and it was painful and I just lived through it and it finally went away..but the bump was always there and for years i'd have bloody boxers...i dont know why like an idiot i did not just go see a doctor about it...anyways up until 2 months ago it got painful again and it became swollen and the pain was just unbearable. It's size became huge (like the size of a tennis ball..well ok not that much but its diameter i guess) and it just felt like it was pushing out of my skin and expanding and it hurt a lot. I went to the doctor immediately and he made an incision and let it drain. Then next day he set me up with an appt with surgeon. He made an incision too but nothing drained. He told me to continue taking the antiobiotics and pain killers the doc the day before prescribed and after a few days it went down drastically but there was still a bump. Then I went to the surgeon again in 10 days and he said it's really small now so the surgery would be easier but i opted to delay for a month so i can finish some stuff at work and i couldnt get sick leave in time and i had no more pain so i was like why not. Finally I had the surgery 3 weeks ago, I went in alone and was alone the entire time except when my friend came to pick me up. First time every having any type of surgery done. I understand you're scared, but these people are professionals..it's what they do for a living so don't worry. They put me under gen. anesthesia and i woke up an hour later and the surgery was done...they did some more tests to see my bp etc and i was out of there in 2 hours. They stitched me up and tomorrow im getting them removed. I'm able to sit up for the most part for at least a few hours but it starts hurtin after a bit. It's not really pain its just discomfort but it may be from the staples and not the surgery itself. You'll be able to walk in graduation, but the ceremonies are usually a few hours so sitting for that long may become annoying for you and they have seating arrangements with your name in alpha order so...maybe you can ask someone who is running the show if you can just leave after you get up and do your 'walk' so you dont have to stay for the entire time.

    I should also mention that this type of surgery happens a LOT. My surgeon said he's done this many times...just because you don't see a lot of responses on this forum or if you see a lot of negativity about something doesn't mean it's always bad...it's kind of like buyin something on amazon..you see bad reviews...doesn't make it bad..just means he/she had a bad experience with their product but people usually only put effort in writing something if its negative....the people who had a good experience are out there enjoying t heir life.
     

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