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Hello everyone,

I'm posting this hoping that someone can help me. I received a surgery in January 2009 to have a pilonidal cyst (caused by ingrown hair) near my tailbone excised, as well as closing the canals that caused the cyst in the first place. So far I have not had any recurrence of cysts or related symptoms. Unfortunately, for the 2 1/2 years following the surgery, I am still in a lot of pain from an unknown cause in that area. Here is some background information:

I'm a 25 year old male.
Pilonidal cyst excision was done in 2009 for a cyst that formed in 2008. Canals were closed - the canals are the drains into the cyst that catch ingrown hair.
Cyst was caused by ingrown hair
Pain has been deep, dull, aching, and throbbing since the surgery. Also some sharp surface pain upon contact.
Not an infection, no cyst showed up on MRI 2 years later.
Chiropractor seemed to believe that my tailbone lost some function and that my scar tissue bonded painfully to surrounding soft tissue. Unfortunately this was a theory and I can no longer afford to see him on a regular basis.


I'll try to make this as brief as I can to spare your eyes. I went back to my surgeon about a few months after the surgery to follow up about the pain, but after multiple visits and many rounds of antibiotics, the pain was still there and the cause of the pain was still unknown. The surgeon told me that she has not seen this before and most of her surgeries for this problem ended up being completely successful. I decided that I was going to have to seek other help.

Over the next year or so I saw other medical doctors, doctors of osteopathy, plastic surgeons, multiple chiropractors, massage therapists, physical therapists, rolfers, acupuncturists, surgeons, colorectal doctors, colorectal surgeons, spine surgeons, pain management specialists, upper cervical chiropractors, etc. etc. I saw every doctor or professional in my town and in neighboring towns that I could think of, and I even traveled almost 200 miles to NYC to see if anyone knew what was causing this problem. It wasn't until I saw a pain management specialist that I was told that I could have coccydynia (tailbone pain). She ordered a seated MRI and told me to come back to see her. I got the MRI and it revealed that my coccyx looked fine, although it was slightly hooked. No dislocations or breaks, no severe damage, just a slight hook. Again, no solution.

I began writing letters, writing emails, calling random doctors across the country, and even got as desperate as to send emails to doctors in Europe in hopes that someone has the experience to discover what my problem is. I even sent the digital images of my tailbone when possible. Aftera few months of searching, I ended up finding a chiropractor in NYC who said he might know what the problem is. He informed me that it could be soft tissue tension due to the slight hook in my tailbone and asked that I come into his office for a consult to evaluate the problem.

He explained what he thought the problem was and then what we'd have to do. He had to perform tailbone manipulations, acupuncture, and massage therapy to the area to get the tailbone to function properly again. Due to the sensitivity of the problem, I prefer not to release his name. It was very unpleasant. His procedures definitely helped to relieve my pain in short bursts and after about 8 visits, it was noticeably better for longer periods of time. However, this chiropractor was not covered by my insurance, was very expensive, and required very expensive train rides there and back. I can no longer afford to see him and the pain is coming back and getting worse. My quality of life is rapidly diminishing.

I agreed with him that the tailbone could have been part of the problem since what he was doing was obviously helping me, but there was still an extremely painful spot where my pilonidal canal was closed up that hurts to the touch and hurts especially when I sit or lay on my back. I feel like this is the major culprit in my pain problem, but I don't know what to do next. I can't deal with this pain anymore, and I'm getting more and more desperate. I can't afford to spend another thousand dollars seeing the chiropractor and have it not work out or just provide temporary relief. Does anyone know what this can be?

Has anyone experienced this? Please, any help at all, no matter how small will be greatly appreciated. Thank you in advance.

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Neverending,

I am experiencing VERY similar pain, however, I haven't actually seen a doctor yet. I am convinced this is a very serious issue that doctors may just snub their nose at. Have you heard any recent news?
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get some heel rescue cream or the hoof-saver they use on horses and rub it into your cyst scar tissue then use a beauty stone or ultra fine foot sandpaper stuff to bring down the tissue & do your feet too

all that stuff is right around the body's zero point so no room for excess skin at all
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I finally went to the doctors and completed a round of antibiotics. I haven't had any pain yet, however, it was never really consistent. The doctor said that my cyst, apparently, is still in the early stages even though I have felt the pain for years. It can't be seen on skin. I only use to feel a little bump and pressure when I exercised. At this moment, I no longer have the bump and haven't experienced pressure. I must wait and see if it returns.
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My daughter had surgery for a pilonaidal cyst as a nith grader in high school. Her incisions did not close and she had two recurrences, two more surgerires, and then had some of her tailbone shaved off. She is now 23 and in such agony every day. She has tried massage therapy, accupuncture, cushions, shots from pain management specialists and nothing helps. She cannot work and can barely function most of the time. I feel so helpless and wonder what we could have done differently early on.
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I am presently experiencing this pain, same area of cyst extraction. Mine was done many years ago; in May 1971. Healed good no issues since, until 45 days ago. presently experiencing pain. Dr. is still looking to see what is creating creating the pain. I was doing great until this pain came along. Meantime it is very painful to stand/ walk, get around.

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I had a pilonidal cyst removed in 2000.  Since then I have had no pain to extreme pain in the area where the scar tissue is.  I have seen many doctors, acupuncturist, and other alternative doctors to see if they can help.  The doctors tell me the area looks great and they do not see what the problem may be.  

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Hello, I'm starting to experience post-surgical problems. I had surgery May 2012 for a pilonidal cyst. It took a little longer than usual for it to heal but my doctor assured me everything would be fine. And it was...until recently. The past few weeks I've been having pains that shoot from the surgical area down my right leg. It's been hard to walk at times. Today my leg actually gave out to the point I couldn't move. It feels like a nerve. I'm wondering if it could've been damaged during the surgery. I'm going to call my regular doctor tomorrow. The bad thing is, the doctor that performed my surgery last year left in July to go work at another hospital. Hopefully I can get some answers and relief soon. And I hope you feel better as well. I will keep you updated on what my doctor finds, maybe it could help you as well.
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My husband had same surgery and he is in extreme pain and has lost feeling in feet and lots of nerve pain in legs. Not sure where to go.
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My 16 year old granddaughter had 2 pilonidal, open wound, surgeries in 2011, She had her third, a Bascom flap procedure, recently on April 9th. She still cannot sit even 3 minutes without feeling that she's "sitting on a rock". Her doctor is concerned about the pain because the area looks very healthy, no fluid buildup nor infection. The second surgery went very deep, all the way down to her tailbone. I was shocked when I saw the open cavity. I think what has happened is that there's not enough tissue over the tailbone. We don't know what else to do right now either. She has a follow-up appt. on May 31st.

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Hi, I'm new here, a guest. I'm in the same boat as all of you. I had my 3rd pilanidal cyst removal a year ago. Although its been successful I too cannot sit down for more than a few minutes...as someone said it's like sitting on a rock. Someone else wrote that it was a deep, dull aching pain, like a deep bruise. I have that too. I also feel like there is motor damage to my left leg....it's hard to describe and complicated by lower back issues.

I'm having trouble finding anyone to help me. I keep getting sent from one doc to another. I'm scheduled to see a plastic surgeon in July. I'm hoping he can cut some scar tissue out of it...it always feels so tight and swollen.

 

I get hydrocodone....for degenerative disc disease.....and yeah it helps a lot. Problem is it's too weak and I have to take 10 a day to keep things in check and I can't do that for all the obvious reasons. Thanks for listening.

 

 

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I have the same problem and thought I was alone!  I am 36 years old.  I had a 6 inch long, 3.5 inch deep pilinoidal cyst removed 6 years ago with the flap procedure.  Huge Frankenstein scar, but everything healed fine. For the past two years, I have been experiencing extreme pain when sitting for longer than an hour or so.  As others have described, it is strong and stabbing ache that feels like a terrible bruise from sitting on a bleacher but times a hundred.  The incision area has taken on a swollen look, but not read or infected-just enlarged all around.  I had two MRI's done two years ago at great expense, but no problem was found.  I visited a plastic surgeon but he was not help at all.  He said he had never heard of this issue before and I should just learn to deal with it or lose weight (I had gained approx. 20 lbs since surgery, but am under 200lbs).  The only assistance the surgeon offered me was a surgery to make "my scar look prettier."  I left in tears and feel hopeless.  The doctor half-heartedly mentioned a condition where scar tissue continues to grow in excess and traps nerves in the tissue, causing pain.  Has anyone else been told this?  Suggestions for relief?  With so many people having this problem-there must be some doctor out there willing to help??-Disenchanted...

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i am 18 years old an had my cyst removed 3 years ago.. i have bee experiencing severe, chronic pain for months and have no found a solution. I am currently on lyrica  three times a day to help my nerve growth but it only prevents my legs from going numb. my doctor has recently been tossing me around with different medications all to which i have reacted badly towards. I have extreme difficulty sitting for long periods of time, walking and running. Breathing occasionally shoots pain up into my lower back which gets painful to the touch. The pain is growing by the day and the problem is getting worse. I had an MRI which showed nothing but some scar tissue, which is not a surprise because the open wound was cauterized 7 times. it is becoming a problem that affects my every day life and is becoming a hinderance. i am at a cross road because i need something and i need something to solve this problem soon. Im tired of the medication that just continuously tries to covers up the main issue. I do not want to be in constant pain 24/7. We are now currently trying to get with a speciaist in Philly to hopefully solve this problem ... non of them take my insurance which is the current problem. I use tylenol, lyrica and bengay/icy hot to help relieve the pain. IF any has any suggestions please let me know... 

 

because this sucks. 

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I am 45 and had my surgery 18 years ago.  Luckily I have not had a recurrence, however, recently I am noticing a dull ache in my tailbone and hip area.  First I thought it was an ovarian cyst and got an ultrasound which revealed I did not have one.  I do sit at a desk for long periods of time for my job so perhaps the area is getting irritated.  The scar tissue theory that I'm reading about on here sounds most likely.  I too was thinking about consulting a Chiropractor.

I will say that if you are faced with surgery, be sure that the sinus and all of the deep roots are removed and that the wound is kept open, packed and left to heal slowly from the inside out.  This will reduce your chances of recurrence.  Best of luck to all...hang in there.

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Hi, I'm 34 years old and had my cyst removed 2007.  I have been fine until recently.  I pulled a muscle in my lower back exercising.  Ever since then I have had a throbbing pain around the area.  I have gone to Dr's and massage therapy as well as much streatching and "foam rolling' which seemed to help for a very short time.  My muscles in my legs get so tight its ahrd to walk. The mornings are tough to get going and I feel much older then I am.  I only take ibuprophin but it doesn't see to do much.  I hope someone finds us some relief.  Somethimes I question the sugery at all, I could have continued to have it drained and not have this pain.  But at least this isn't a nasty infection.

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