Hi and welcome to the Chiari forum.
When u had the cyst removed did u also have a release surgery done? Did u also have tethered cord?
It is the scar tissue that can cause a re-tethering of the cord....
I am 68 years old. Had my pilonidal cyst removed 40 years ago. Lots of stitches, but it has not come back. I had put off surgery for a couple of years before that.
I never mentioned it either...had no idea and when my NS explained my tethered cord to me and the cyst I asked if that is Y it leaked....he checked it and then told me what had happened and rx'd an antibiotic.
Yeah, it is gross. I hate it when it drains.
Funny thing is I never thought it was abnormal until I started doing research on all of this (chiari stuff). So I never mentioned it to any doctor - aside from when I had the initial surgery to remove the infected cyst.
I was told the covering over the cyst can rupture causing it to leak...and it can get infected..so do mention this to ur NS.
It could be what ever u do, causes the covering to get pulled off...I know when I tried pilates (b4 I was dx) and I heard it pop....yuck and eww and it drained for 2 yrs b4 I knew what it was,
Just thinking about this again today cuz its draining.
Why would it drain still, from time to time? Maybe few times a month I get a cpl days of drainage?
I know, I had the same aha moment as well...and it is strange how when we know all the info we can connect all the dots.....
This is crazy....
It's all making sense. All these years..
Low vit D is a biggy for us, as well as B12, potassium and magnesium....and one does not work with out the other.
IE- if ur magnesium is low, no matter how much vit D u take ur body is not able to absorb and use it.....
Too much magnesium u have one issue with ur bowel and too low u have the opposite...and those with IBS it is a constant switch back and forth btwn the 2.
But, it is also a neuro issue as well.
cpl years ago I did have an issue where a cpl weeks I did lose control, completely. I thought I was dying (lol). No one ever ordered MRIs or other scans to check my spine though, just blood work. The only thing I remember then was that I had critically low vit D levels. I was prescribed prescription strength vit D, 40,000 iu.
I took it for awhile but then stopped cuz it was too expensive. I haven't had it redrawn since.
I think maybe I'm having my "a ha" moment..
Well both bowel and bladder issues are tied to chiari and tethered cord.
And do not worry about what u r admitting, and if u r more comfortable u can PM me....but this is what u need to let ur NS know.
I was playing football with my brothers and got tackled. I didn't know either until the next morning when I couldn't walk. I guess it got infected overnight, after it burst. Gross.
I don't know that I have bladder "issues". I tend to have bloody/cloudy urine often BUT do not have pain/urgency. I do tend to also leak. But happens with bowels too. I don't lose control, just 'leak'. OMG. I cannot believe I am admitting all of this. I am MORTIFIED.
B4 I got my chiari dx my DD wanted me to try pilates...well when I did, I heard a pop and the covering of the pilonidal cyst burst open and I had drainage....I had no idea what it was or what the problem was...
I did not have the hairy patch, but do have the sacral dimple.
Do u also have bladder issues?
I don't know if I have an elongated brain stem. But I had surgery at age 16 for pilonidal cyst and (hair patch in same area), god that's embarrassing to admit.
But now at age 35, I still get the occasional drainage from the dimple... Ugh. Still embarrassing to admit.
Hi...yes, when it is referring to a related conditional called tethered cord.
Do u know if u also have an elongated brain stem?