csf leak

[Lindad1966]

I was decompressed in 2003 with numerous csf leaks and then repairs.  Finally had vp shunt place, had stroke, re did the procedure and finally after 9 surgerys in 1 year I was done!!! Now I have a broken shunt and a calcified dura patch and a csf leak.  I am told by the doctor it isn't anything to worry about.  I am very stressed.  My original neurosurgeon no long practices.  So I am looking for another doctor in Oregon.  any thoughts would be appreciated.

[selmaS]

  Hmmm that  is the area where the cyst is found when tethered cord is an issue,,,,,I am glad to hear your daughter's was not related to this or Chiari.

I know when reading up on tethered cord they say to look for a sacral dimple or a hairy patch......

My cyst ruptured when trying to do Pilates....it hurt like heck and leaked for almost a yr....to date I have not had surgery,,,,,but I was DX'd with tethered cord...which is the surgery they want me to have.....and I do have a neurogenic bladder as a result of the TCS.

[MaLuisa63]

My daughters cyst was located  near the tailbone at the top of the cleft of the buttocks....

[selmaS]

  Hi and welcome to the Chiari forum.

Thank you for adding your daughter's experience with this type of cyst....I am sure each case can be different....and the cyst we are referring to has other reasons for being there...

May I ask where your Daughter's cyst was located?

[MaLuisa63]

Hi  Selma ... I wanted to respond to the "Pilonidal Cyst"  comment because my daughter had one when she was about 17 yrs. old. It is a very common cyst specially in men because of ingrown hair that gets infected. It was extremely painful and had to have it operated on an emergency basis. But to my knowledge it has nothing to do with spine, chiari or any issue related to. My daughters cyst was also very deep and had the hair that had "grown in"... This is only my opinion and what the Surgeon informed me about Pilonidal. Cysts....

[selmaS]

I also have a cyst and it has oozed as well......but I had a dimple at the base of my spine which is where the cyst is located. It is from this and then the MRI's which confirmed I do have TC, just not treated for it to date.

hmmmm makes me wonder what u really had there????

[Lindad1966]

I am not sure.  But after looking at the info on tethered cord it makes me really curious. I was only 16 and the surgeon was confident that he would be able to remove this "simple" cyst that would bleed and ooze puss.  When he got in there apparently it was more than he bargained  for.  He said that cyst like mine could actually be a twin that never developed, the cyst had hair and blood and puss. The incision area was so big it looked like he took a orange out. Long answer for a simple question.  sorry!

[selmaS]

I bumped the chiari specialist thread up so u can find it...we also have this list condensed in the Health Pages here on MedHelp.

It is best to get to a chiari specialist and let them check u for ne chiari related condition.

May I ask where ur cyst was located on ur spine and do u have a dimple?

"selma"

[Lindad1966]

It sounds like I have too much since I have a csf leak build up at the base of my skull.
How do I find the doctors listed here?

I know that the patch was synthetic and now I have read of the complications of using that kind of patch. :(

I know I don't have a syrinx.  As for tethered cord, I think I have it but it has not been diagnosed as such.  I had a pilonidal cyst removed wehn I was 16 and it was "deep."  And what was know about pilonidal cyst in the 80's? I don't believe I have eds.

[pdxmomof3boys]

Dr. Pankaj Gore or any of his associates at the Brain Institute of Providence. They are amazing! Dr. Gore is my NS that I've been seeing. No surgery yet, but he is really wonderful and supportive and will take his time explaining things to you. He and his medical group come extremely highly recommended. He specializes in removing brain tumors but has done at least 25 chiari surgeries himself, some of them pediatric. Good luck to you!

[selmaS]

Hi and welcome to the Chiari forum.

So sorry u have been thru sooooo much.

I am confused that a broken shunt is nothing to worry about......do u no longer have too much CSF to divert?....r u absorbing the CSF ?

It is so important that the NS u r seeig is a true chiari specialist....and many of us have to travel to get to one.

We do have a list here on the forum of chairi specialist...please review and research the drs on that list....the names r of drs that members here have used and were pleased with,

May I ask what type of patch was used?...synthetic ....bovine....cadaver or ur own skin?
Do u know if u have ne other chairi related conditions like a syrinx,tethered cord, EDS?

"selma"