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 :)
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
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,
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
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 :)
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.
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 :)
Thanks for all of your help. I have seen a neurologist and had an MRI of the lower back. The Mri didn't go as low as I really wanted it to, but it did show the claudia equina, but I do not see how anything from an MRI can be detected by looking at the "tail", unless the imaging goes lower, or a ct scan is used.
My Rheumatologist wrote down that I had a pilonidal cyst, on the order for the MRI. Anyway, they found 2 herniated disc; L4 to L5 and L5 to S1. There were also some more strange words to describe these conditions, but I never understood what they meant. I believe they had to do with the are and direction of the herniation......The neurologist prescribed me 3 weeks of physical therapy, with decompression and massages. 45 minutes per day, 3 days a week. I called around and ask one of the folks about the message part. They said "what do you mean by message". I said good day, lol.
Needless to say, I haven't gone due to lack of energy. My insurance covers most of it though (I don't care :). It covered 80% of my cardiac rehab.
Thanks again and I hope that you are well and as happy as can be,
You mentioed that this surgery for the pilonidal cysts are murder. My 14 year old grandson had one burst a lot of puss came out. When he went to his family doctor to have it lanced they came across two more and sent him to a surgine. They said it can take 3mon. to one year to heal.
My daughter is thinking of taking him out of school for that time period. Whats your opinion on the matter. I don't like the idea, what is an alternative to surgery?
I too had a pilonidal cyst. Mine was long standing first appearing at 17yrs old and with severe flare ups off and on. at 26 my cyst became so bad I was tols that I had no choice but to have emergency surgery because the infection had entered m;y blood stream. that was 3yrs ago I have had chronic lower back pain since. Some days it feels like a ho;t vice is wrapped around the last 4-5 inches of my lower spine the pain radiates deown my hips to my legs to the soles of my feet. recently my feet have been going numb sporaticalyy. My doctors seem to think this is no big deal or not related to my surgery. I suspect they think because of my age group and the region I live in they belive I am seeking pain medication and nothing else. I want answers. I am going to go for an MRI as soon as I can afford it I can not take this pain anymore!!!!!!!!!!!
I have had a cyst for as long as I remember. I have had a few flare ups which I treated myself with baths and antibiotic cream. Now that I'm 59, I've developed pain in my tailbone plus lower back pain. I never knew the back pain could be associated w/ the cyst- thank you for the info. I don't want to have surgery, but plan to discuss this w/ my doc next month. NM
Although this forum was informing it also has put a dark damper on my future with pilonidal disease. Im only 21 and I have already had a pilonidal surgery done. It was not the big shabang surgery it was just a lets remove as much as we can and leave the butt crack alone. Its been about a year and a half since the surgery and although i can not see any signs of the cyst i can in a way sense it growing. Recently i have had lower back pain resulting from nearly no physical activity and i think it is from the pilonidal cyst. I think it is from the cyst firstly because it is in the lower back region above the crack. Secondly, when i feel above my crack it almost feels like a bruise is there and it feels warmer as if something was inflamed. Now concerning the latter, i realized that swelling can result from a back injury but it just does not feel like back pain swelling. I am almost positive it is because of the cyst. Needless to say i wish i never got this disease. On another note, i also have a double hydroceal or however you spell it which basically means my nuts are larger due to a minor hernia... sort of a hernia. Anyways, when my back hurts or i try to stretch my back to make the pain a little better i can kind of feel something in my nuts so im a little unsure of what my problem is if the two problems are associated with each other. Either way im gonna say that these problems are not going to go away soon and they are only going to get worse...rats.
Just did some more research. Turns out the hydroseal (hydrocele) can cause back pain if it is large enough and unfortunately mine is somewhat large. However, if you get the hydroseal (hydrocele) fixed it can alleviate the back pain. Since the back pains have pretty much just started and heals within a couple days im going to wait it out a little bit and then whenever i can see a doctor about it. Im really confused however about what the cause of my back pain is. I hope it is not due to both diseases but due to my young age Im thinking that maybe the reason i have this pain at a young age is because of the two things working together. Will check back for responses or to give any updates.
I had the same problem with my doctor thinking I was just seeking pain meds. An xray showed that I had a mild case of scoliosis. I'd been complaining of back pain for about a year and his response was always "your scoliosis shouldn't be hurting you that much" or don't we all, just something you have to get used to..." The pain was so debilitating, I had to take a leave from work. Feeling like a total failure, and completely inadequate, my parents finally convinced me to pretty much demand that I be referred to an orthopedic surgeon. This new doc got me to bend down and within ten seconds he found a large pilonidal cyst in my lower back, on the opposide side of where my spine curves...Needless to say I was pretty relieved that it wasn't all in my head and that I had gone ahead with more investigating. I go for an MRI in a couple of weeks (thank you OHIP) to see if there's anything he missed.
I hope you're able to get the answers you need soon, and don't let ignorant doctors let you start second guessing yourself.
cyst surgery is hell i went through a phase needless to say i still am i had a cyst removed and 24hrs in he hospital i did fine i went back to wear i was staying 2 weeks after i was cleared to go back to normal activity i was rushed into the er cause it got infected i had nurses cleaning it before and after i was in the er i must say that was 3 years ago and now i find my self with a new one back under the knife again for me ri ght now it hurts like hell to sit and i am no where near comfortable i am not in the same place as i was i had medical care round the clock now i am busy busy busy
Hello all! I have had 2 surgeries from this disease, and I know as well as you all do that this has been a nightmare. After my 2nd surgery, I have been having severe pain in my legs and lower back. It is accompanied by occasional leg twitches, burning sensations, etc. It gets worse throughout the day, and most days by the time I get home from school and work I am in excruciating pain. I am a college student and cannot live like this anymore, especially with all the pain medicine. I have seen a Neurologist, C/R Surgeon, GP, Neuro Surgeon, and all tests that have been ran have come back normal. If anyone has any advice or is experiencing this, please let me know.
I too have chronic debilitating pain in lower back hips and legs. 1st pilonidal @ 18 yrs old in army training. They drained it and cut a chunk out as outpatient procedure thinking they removed the cyst and left open to heal.Came back when i was 23.. Major surgery. Huge chunk to get all tissue and tracts. Sorry for poor structure. ..on phone writing this. I'm 35 now and have been trying to get adequate pain control for 6 years. Life completely changed. Couldn't continue army, can't ride a bite, no theatre, plane rides are killer, forget public trans, painful just to sleep, drive, and sit more then 15-20 minutes without pain building. Also feel something in legs and hips diagnosed as restless leg in addition to pain.
hi i am 20 years old and i too had a pilinital syst and i had it surgical drained removed it was a little over two gallons of puss i had and i did have excrutiating back pain and now the syst is gone my back pain is gone dnt let doctors tell u different my back would flare like that too
So, i'm 35. I have had this small bump just above and to the right side of my butt crack (poss. a pilonidal cyst) for close to 10 yrs. I've never had it looked at cause I thought it was embarrassing. However after having a pre-cancerous mole removed last year and some new spots developing on my face, in addition to two small lumps below the sink in my left arm, i'm having everything looked at on friday. I think i'm most concerned about the small lump near my backside. It has bleed before when it first appeared, and most recently about a month ago. It now has a crusty scab like texture to it and is kind of a pinky skin color. Additionally, i have had really bad morning back pain for about 4 years. It's the worst in the morning and fades as i move around throughout the day. It's really got me worried.
--Jack54-- you mentioned an article about these cysts turning into cancer. do you (or anyone else for that matter) have more information on this.
I am 20 and have had a pilonidal cyst for about a year and a half. The pain hasn't been too bad and after being on anti-biotics for about a month, it doesn't seem to get infected, but is still there. It tends to bleed every 2-3 weeks, and this means that I do not get back pain often. However recently, it is not bleeding, and is causing increased back pain for me, so much that I can't even put my own socks on in the morning.
The worse the pain gets the more I look into getting the surgery, I just struggle to find the time. However reading a lot of these posts I have noticed that most people haven't found success from the surgery.
Any advice to whether I should get the surgery or not?
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