tethered cord help

Greetings~
I am new here and feel a bit overwhelmed. I am a 53 yr young woman born with spinabifida and though I have had a full and active life I have always dealt with pain and a deformed foot/leg that was amputated in 2002 after suffering for years with unbearable pain. In 2004 I walked out of my prosthesis and came straight down on the pin onto concrete. Since then (and I am just beginning to piece the bigger picture together), I have become more syptomatic of what I was finally diagnosed with as thethered cord as well as chiari's (though I don't seem to be as symptomatic around the chiari's at this time). My gait has deteriorated and I find myself needing the support of a cane, my foot is extremely weak and getting worse by the week and I have been wearing a Richie brace for a year, and now this past month I am experiencing greater fatigue in my back, legs and buttocks. It gets worse with activity. I am so used to plowing through life with determination and a positive outlook that I really hadn't given this too much thought until the past few months when my complaints have gone from bad to worse.
I am bummed that it seems the more I try to strengthen myself with swimming, yoga and gentle activities that you'd think would help, instead my syptoms (symptoms) seem to be getting progressively worse.
I wonder:
Has anyone had this similar experience?
Do tethered cord symptoms degenerate so quickly?
Are there alternative or conservative treatments other than the detethering surgery?
Where do I begin to find experienced surgeons in this field of expertise in/near Connecticut?
I do have an appointment on Aug 26 with Dr Stern, a neurosurgeon at the Safe Spine Center in White Plains, NY as a start, I found his info on the internet and what caught my attention was the state of the art surgical equipment but have nothing else to go by.
Well thanks for the opportunity to introduce myself and to share my worries.
I pray you are all having a good day.
Barbara
aka HeartofAnamCara  

[youngwife]

I wish I could answer all of your questions, but I don't have enough medical training and experience to try to do that. ;)

But, I will say that I hope this doctor can help you, and I am so very sorry that you are suffering so much.  And, if it seems like something (whether it seems safe) is making you worse, I think you should stop it until you get concrete answers.

Blessings to you,

Rebecca

[selmaS]

Hi and welcome to the Chiari forum.

I am sure u will find out if this dr is able to help, once u see him. Ask him how many Tethered cord patients he has.

All I can tell u regarding TC is , yes the symptoms can progress rapidly...could have been the fall that triggered it. Like chiari, the symtoms (symptoms) can progress slowly or fast u just never know.

U may need to travel to get to a specialist in the chiari field.

Please keep us posted on ur dr visit,

"selma"

[bubbles0309]

well i was just recently dx with tethered cord in 03/09 and had the decompression surgery cause i had numb feeling all down both legs and couldnt walk cause my legs were so weak i was dx @ nassau medical center dr.bolognese and im able to walk again

though my problems started back in 06 and they thought it was a buldging disk and dismissed it my symotoms came on very slowly i got worse over the years my lower back slowly losing balance and i could bearly keep up with myself.

so after the decompression surgery i had a csf leak they told me another surgery was nesscessary after that a month passed and i got major headachs and neck pain along with my lower back hurting i went back and they told me i had chiari so i needed surgery again and all of the chiari incidents happend fast but my tethered cord took a while for me to notice my body was slowly crashing and no i never had a hard fall, car accident, or any major trama to my back/body so i dont know where it came from

the only advice i can give to you is just listen to your body research and have lots of questions for the doctors u r qoinq to see and mention csf leakage chiari tethered cord and ect. cause if u dont they could easily misdx you. and my last surgery was in june 3.09 and im still not having good days im really scared i might get an anurism and i think my lower back is leaking again plus im going to be on a flight for my first time since the pfd surgery im scared.

good luck with all oh by the way i was at tci @ manhasset and my dr. was dr.bolognese he did all 3 of my surgeries if u have more questions ask me i will do my best to answer them with the experiance that i am and went through. god bless.