Chiari Malformation Community
Sacral dimple/pilonidal cyst
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Sacral dimple/pilonidal cyst

Is there any link between the two, in terms of chiari?  
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620923_tn?1405964489

  Hi...yes, when it is referring to a related conditional called tethered cord.

Do u know if u also have an elongated brain stem?
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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.  


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620923_tn?1405964489

  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?
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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.  
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620923_tn?1405964489

  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.
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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..
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620923_tn?1405964489

  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.

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This is crazy....

It's all making sense.  All these years..
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620923_tn?1405964489

  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.....
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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?  
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620923_tn?1405964489

  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,
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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.
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620923_tn?1405964489

  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.
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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.
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620923_tn?1405964489

  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....
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