Chiari surgery and EDS

[Heather__]

 I am interested in knowing which type of procedure those of you with EDS have had
to correct Chiari One Malformation and the effectiveness/ any complications they experienced.
There are different methods and from what I have researched the typical
decompression surgery is not successful often with EDS. I have read that
fusion of the vertebrae, or occipital areas, etc are often required and
quite honestly that freaks me out.  I do believe I will need some type of
surgery since I have 5 mm of herniation and also an extensive syrinx that
they need more imaging to properly decide how large it truly is. The syrinx
in itself is dangerous and leads to damage of the spinal cord if
untreated.   I also have several bulging discs.  I see two neurosurgeons on May 3
and 7 to try to decide my best course of action.  They are Dr. Denning, and
Dr. Jackson of Dallas Presbyterian Hospital.  Any wisdom or advice you could provide would be appreciated!

[selmaS]

  No I am not aware of the support groups down there, I do know of someone with chiari in TX...she is not an active member here, but did join and u may be able to contact her thru a PM here.....

here is her link to her profile page Zipperhead0609 her name is Janet

http://www.medhelp.org/personal_pages/user/926258

U may want to ask her, as she may know more about support groups in TX.

[Rylanesmom]

I also have EDS and was told I may need a fusion in the future.  I will cross that bridge if it comes.  I had PFD with laminectomy and duroplasty and my patch was harvested from my head :)

[Heather__]

No on the biopsy.  I was clinically diagnosed by my medical history of endometriosis, POTS, high Brighton score, chronic musculoskeletal pain, premature delivery, bilateral inguinal hernia repair, migraine, etc.  Hypermobility and pain also were familial.  I have very few skin symptoms, and my surface veins are fragile and tiny. Because I had so many successful surgeries, the geneticist did not suspect vascular EDS.  I've had a full vascular work up since diagnosis and nothing remarkable was found. I also requested an upright MRI after the EDS diagnosis since I read it can be a complication that is often missed in other types of flat imaging. The rest is history. Do you know of any Chiari support groups in Dallas so that I contact others in my area?

[selmaS]

  PFD = posterior fossa decompression, this is the surgery to create space  to restore CSF flow and slow progression of chiari symptoms.

  Yes, with EDS u can be ok with one pain med for one surgery and then the next time, u r allergic or having a reaction,....

Did u have a skin biopsy to determine the type EDS u have?

[Heather__]

Can you please explain a PDF?  I am very new to EDS and Chiari.  Also, I'm 34, female and typed EDS Hypermobile, mild classical crossover. I've had quite a few successful abdominal surgeries, but am quite strange as are most EDSers.

[selmaS]

  Hi and welcome to the Chiari forum.

I have EDS and had surgery for chiari...u r right, in that EDSers need to have their pericardium used for a patch over the cadaver and bovine and synthetic ones...this helps limit rejection,

Many times EDSers do have an issue with instability and once they have the decompression it can make this issue worse...I do have it, but have worked with neck exercises and have been able to put off the fusion surgery.... a friend of mine was just in a MVA and had to have the fusion and was released from the hospital today.....we r slower to heal...and it is one that I will put off as long as possible, but when u have a syrinx, u need to address this and the only way is a PFD.

I am not familiar with those Drs names, but do make sure they r well experienced with chiari and EDS....if not, do get another opinion from a Dr that is experienced in treating chiari with EDS....