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214864 tn?1229718839

Pilonidal Cyst Causing Lower Back Pain?

Hello and thanks for reading my post, which may sound strange. I have had a pilonidal cyst for around 35 years. I had a surgeon that wanted to do extensive surgery that would take 6 weeks for recovery. I couldn't afford to take that much time off. So he lanced it, as had been done about 4 times before, instead of performing the surgery. After this, the only care it needed was an occassional needle ***** and draining by my wife, maybe about once per month for 29 years.

Now I have developed osteoarthritis as diagnosed by a rheumatologist. I have a lot of lower back pain constantly whenever I sleep for more than 6 or 7 hours. I also have flairs of pain in other joints.

I am wondering if any of you have ever heard of a pilonidal cyst, which makes tunnels with hair and pus in many directions, entangling with the nerves of the lower spine? It is well documented that this happens, but I would like to know if any of you have ever heard of it, or have had personal experiences with it.

I plan to go for an MRI soon, but I have so many other problems that it makes it hard to get out (heart disease with some failure).

Thanks very kindly in advance. Merry Christmas and Happy Hanukkah  :)


23 Responses
Avatar universal
It's interesting that you should post about a pilonidal cyst.  If you read my post below concerning Adhesive Arachnoiditis, you will see that I recently had lumbar surgery, in which my neurosurgeon discovered calcification within the dura mater (the casing in which the spinal fluid and nerves are contained).  She had never seen this before and after checking with a couple of other neurosurgeons, they were also puzzled.  Initially, I wondered how I could have something like that, but it dawned on me that years ago (in the 70's) I ALSO had a pilonidal cyst - in fact, it's so long ago now that I can't remember what kind of surgery I had on it....I remember being out of work for about a week or more and that it had to be "packed" to heal from the inside out. Eventually life returned to normal and I never thought about it again until after my recent experience in the operating room.  Now, I'm not saying that your current problems are associated with that pilonidal cyst....but I would certainly mention it to your physician, since it is in the same general vicinity of where you seem to be having pain.  Also, another possibility is that you have developed arachnoiditis in the lower back, near the area where the nerves exit the spinal canal (called the cauda equina because the nerves resemble the look of a horse's tail.)  When you develop arachnoiditis, instead of the nerves free flowing, they all "clump" together in a big tangle and can cause considerable pain.  These are all things that can be addressed with the MRI. NONE of these things may apply in your case, but I wanted to let you know that I also had a pilonidal cyst about 35 years ago, so it may be possible, if not probable, that this contributed to your situation today.  Only your neurosurgeon will be able to tell you that.  Try to have a happy holiday and let us know how your problem is resolved!  Joface
214864 tn?1229718839
I am so sorry to take so long in thanking you for all of your very good information in your reply! Really, I forgot where I posted my question. I always hate to see a reply not responded to with appreciation...

Your knowledge of the spine really impresses me. I know little to nothing other than it can cause a lot of pain. I get the stinging, burning and aching type of lower back pain. If not for tramadol, I don't think I could make it in the mornings. It is much better at night which is wonderful, but confusing.

Yes, I had my cyst lanced and packed many years ago. After so many days I was to remove the packing. I was young, slim and flexible then. I bent over in front of the mirror as I pulled out the packing, and when I saw the "hole" in me, I almost fainted, lol.

My wife was sick a couple of months ago and couldn't p-r-ick the head and drain the cyst, so I tried to myself, with finger nails and way too much pressure, while in the shower. Needless to say it became almost as bad as in the old days. I had been reading on a PC board about the two different types of surgeries. I even saw where one young man documented his open wound healing with vivid photos. I also read where a second and third surgery was often required. Anyway I made an appointment with a surgeon after reading about these types of cysts turning into cancer. I cancelled the appointment after seeing these pictures....

I have read a few stories about these cysts becoming entangled with spinal nerves and growing into the base of the spine (coccyx ?).

I read a story where a woman had something like the calcium covering you had. The surgeon removed the calcium, but did not see a pilonidal cyst inside the coccyx (?). She still had pain, so she went to a second surgeon where either an MRI or just intuition caused this surgeon to perform another surgery where he removed the entire cyst, that was hidden by the structure of the spine. The lady was wanting to sue the first surgeon.

I wish that I could find this story for you. It probably has nothing to do with your condition, but you could understand the technical details much better than myself, and maybe there is a minute possibility that it might pertain to you. I sure hope not

I can't imagine all of the back/spinal surgeries you, and probably many who post on this board have had. I have always heard of problems resulting from back surgery it seems. I really hope that you are feeling better and have recovered from your last surgery. I am going to do some real "digging" on the subjects you mentioned in you post. Thank you so much. I probably just have a slipped or bad disk, but I HAVE to get an MRI and someone looking for two things. One the PC, and two the lower spine.

I have a neurologist due to having a stroke a few years ago. Could he read the "spinal" part of the MRI? I also have a rheumatologist, due to osteoahthritis, that I asked to have an MRI done on me last fall. He said "wait until the next appointment", which was four months later. I have since made and cancelled two appointments with him due to worsening of my heart condition. It is hard to get enough energy to go out.

Thank you so much for your very helpful information. I just hope that I didn't scare you about the "story of the woman with the cyst"  :(

I may have it all confused. I will try to find it.

Happiest of holidays and most of all health to you,

Jack (55 today, lol)
1 Comments
Hi... Me, me, me pick me. Lol. I have had Pilonidal cyst excision surgery in 2015 and it was a success,but now 2 years later I suffer with the exact symptoms you had. Please update me on your condition. I would appreciate the help, as I am at a loss. And so is all of my doctors.
Avatar universal
First of all...happy birthday!!  Oh, to be 55 again - lol!! I have 7 years on you, but even with my spine surgeries, I don't feel that old.  The only reason I seemingly know so much about the spine is I am an internet nut and have a real like of all things medical...so I gathered as much info as I could before agreeing to surgery. The number one thing to remember is that doctors are not gods...they're human beings and some of them are more highly qualified than others....the goal is to seek out the best you can find since you have one life and one body.  I was fortunate to have good enough insurance to be able to do that and consider myself blessed in that regard.

With respect to your question, yes, a neurologist could definitely explain the results of the MRI to you.  A radiologist "reads" it before it ever leaves the facility where it is performed.  I don't know in your case, whether it will be your personal doctor or the rheumatologist who will order the test for you, but be sure to ask them at the facility you have it done for a release form you can sign, because you want a copy of the radiologist's report sent directly to you. (Doctors don't tend to share those things unless you specifically ask for it and provide a release, due to the privacy issues.)  Do you have a cardiologist for the heart condition?  I sure hope so....don't forget to keep them informed as to what is going on with you as far as the pc and the back issues.

Please DO try to locate that article for me!  I would never dream of going after my surgeon, since I didn't even remember myself that I had a pc when I was younger.  BTW...I can't believe you have lived with that all these years and haven't gotten rid of it....the pain alone would have driven me insane years ago!!  Again...happy birthday and best of luck!  Joface
214864 tn?1229718839
Here I am again late as usual :) Thanks so much again as usual. I get lost sometimes, lol.

I agree with all of what you said. Goodbye...Ha ha ha. Really, it's like my mind looking in the mirror, when it comes to doctors and the patient having the ultimate responsibility for their health. Yes, I have been through cardiologist like....well I have had quite a few.

With heart disease, doctors are very secretive for a couple of reasons. One is malpractice and the other is that telling a patient the unadulterated truth can further do them physical harm.

I am also like you in that I have studied heart disease religiously since 2003. I have learned much from people like yourself, and reading all of the info out there. It makes me mad sometimes that the best info is pay per view, and that Pub-Med goes out of their way to make it hard to get to what you want, plus the info is dated. (Our tax money)

I really didn't have a lot of pain with the PA, except for the first 3-4 years. I am used to it coming to a head (sorry) and getting it drained (sorry again). It does scare me to think of what could be going on down /in there.

I will do my best to find the article I mentioned for you. I make no promises, lol. If I can remember my search phrase I can find it. Thanks so much for the birthday wishes. You are still very young in your mind, and more than that you are very kind :)

Jack
Avatar universal
i am 25 years old and i have several cysts on my lower back, the hurt when i push on them and cause a nerve like pain shooting pain, it is causing me lower back pain, what can i do to fix this problem.
214864 tn?1229718839
Are all of these cysts high in your crack, with maybe some lower in the crack? I could say "folds" or "creases" between your buttocks, but my description, though raunchy leaves no doubt as to the location of the cyst.

Are these cyst infected? Many really hairy people get pilonidal cysts. They are caused by hair. Pressing on these cyst will cause them to get infected, if they are pilonidal cysts. That is for sure.

You will probably have to see your family doctor in order for s/he to refer you to a surgeon. If you do not have a family doctor or PCP, then go to a walk in clinic and you can have a doctor there to examine these cysts and tell you what kind they are, maybe. Same goes if you have a family doctor.

I know of another type of common cyst known as a congenital cyst. They have nothing to do with hairs.

We, as humans tend to have problems within the area where we used to have tails :) That is what my long time, old family doctor that first treated my cysts told me.

I think what determines which type you have is based upon what they remove from it. If it has a core of hair, it is a pilonidal cyst and if not, a congenital cyst, which are less of a worry.

Before you let a surgeon talk you into extreme surgery, like that which is done for a pilonidal cyst, think long and hard about it. This surgery is suppose to permanently get rid of the cyst, but the recurrence rate is high and the surgery is a nightmare.

At this time, before anything, you need imaging of your lower spine and pelvic region to determine the connection between these cysts and the nerves in your back. Either an MRI or CT Scan. I do not know which would be the best imaging mode.

Good luck to you and let us know what you found out :)

Jack
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