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Chiari Malformation, Tethered Cord and EDS

Hi, I am new to this forum and very newly diagnosed with Chiari I malformation (with a mild herniation but massive symptoms), occult tethered cord syndrome (attached poseriorly and with major chronic pain in coccyx, bladder dysfunction even after insertion of a collagen sling, pelvic dysfunction, etc., and Classic Ehlers-Danlos Syndrome. My geneticist, Dr. Clair Francomano at Greater Baltimore Medical Center in Towsend, MD is a GREAT doctor, and realized the CM and TCS and sent me for evaluation to the Chiari Institute in Great Neck, NY.  I met with Dr. Paolo Bolognese and am scheduled for surgery to release the tethered cord on May 15, 2009, at which time they will also be doing "invasive cervical traction" to see if it helps with the Chiari headaches and functional cranial settling.....

I am very nervous about what it will be like after this surgery, and what other people's experiences have been who have had similar issues, symptoms and surgical procedures.  Does anyone have any suggestions? I would love to hear how you coped, what you experienced and how you are doing now.  I have tried all kinds of alternative therapies and approaches and I actually am an energy healing practitioner, but feel stymied by all of this....even though I have had major symptoms my whole life with loads of complications, I didn't realize what I had until age 48 when I met my birth mother and found out that this runs in her family...

Thank you all in advance for any help/advice/sharing that you can offer.  I live in S. Florida and would love to form a support group if there is anyone else out there, or do Skype with any of you anywhere in the world if you are up for it.
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620923 tn?1452915648
COMMUNITY LEADER
U r welcome.

No I should find out this coming week, but I was told in 4 weeks....so I don't know.
It is nice to have someone that has the same conditions to compare with.

I hope we do get a chance to meet/

"selma"
Helpful - 0
Avatar universal
Thanks so much for your reply.  I am sorry that you are experiencing many of the same things, but am glad to be in contact with you.  My surgery will be at 7:30AM on Friday, May 15th.  i will go up there the day before for some pre-surgical stuff at the hospital.  Any idea what your date will be?

"ironic twist" (funny story why I chose this forum name, which I'll tell you if we meet!)
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the forum.
I also have chiari, TC and EDS along with several other related conditions.I was just to TCI this week and was told I too am a surgical candidate.

I know of 2 others that had the release for one it is 2 yrs and the other one yr...both are glad to have had it and their bladder and bowel issues resolved.Both had Dr B at TCI.

The traction I am told is not bad.....my one friend had that done also.....she said it actually felt better while it was being done.

I am a bit aprehensive about the instability and the fusion, but the is not being done at this time...so I am just focusing on the release surgery.I was told 4 weeks for the surgery...so it is possible we might be there around the same time.....

May I ask when were u there?

As for how I cope....this forum, the kind people I have met and I no longer work, or drive and avoid nething I know will cause more discomfort.

I hope u continue to be an active member here....the support is great!

"selma"
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