tethered cord, chiari and TCI

[Guest guest]

Hi All

I feel like I just really stirred the pot, so I would like to say some

more on this topic.

Tethered cord and chiari are BOTH neural tube defects, so it makes

perfect sense that they could and sometimes do co-exist.

The reason I am defending TCI (the Chiari Institute) so voraciously,

is that they are the first place in 9 years that has put the two

together for me....and for many many others.

The night I realized I most likely have suffered with a tethered cord

my whole life, I sobbed. That no one had ever put the two

together....even after nine years!! My urologist dubbed me a " lost

cause " two years ago (I was 37 then) and prescribed antibiotics for

the rest of my life, as my urinary tract is beyond repair. I went

through some what of a mourning, with memories of weeks and weeks in

the hospital as a teenager with aggressive and relentless kidney

infections flashing back. If they had only known, I couldn't help but

think. Someone could have helped.

And so I apologize if my admiration and deep gratitude for TCI

overflows.

I have been to at least 30 doctors that have told me my Chiari could

never be causing all the problems I live with, even after I improved

after the decompression. We all know that road, most likely, as

tethered cord is not well recognized or understood as well. And just

as my Chiari specialist has dismissed a tethered cord in me, is it

possible that your tethered cord specialists have dismissed a chiari

as another aggravating component for some of you??

I think our futures depend on research and doctors being dedicated to

helping us. Please realize that the Chiari Institute recognized

tethered cord as directly related to chiari. Another video that would

be helpful is the one titled simply " Chiari Malformation " It talks

about type two chiari being caused by a tethered cord, and you can not

treat one without treating the other.

http://www.northshorelij.com/body.cfm?id=6456 & oTopID=6456 & PLinkID=6407

Please think about any surgeon treating you for any one thing.

Consider that you have diabetes or high blood pressure. You would

certainly expect that surgeon to take this into consideration while

treating you. In the world of neural tube defects, the same rings

true. ALL must be considered when planning a treatment for it to be

effective.

Look at the population here. Some of us are parents that have

tethered cord with children that have chiari and some of us have

chiari while our children have a tethered cord. I don't understand

how anyone can deny the connection, and the fact that an institution

exists for sole purpose of researching and moving forward to find the

very best treatments for both, should have all of us just a little

more at ease, knowing SOMEONE is TRYING for all of us.

Well, that's certainly enough from me today!

I'll get off my soap box now and try to get myself out the door.

Much love to all,

p.s.- The chiari is a group here on Yahoo

that has a large number of patients with both TC and chiari and Dr

Bolognese does post there occasionally. They certainly welcome anyone

that would like to learn more.

http://health.groups.yahoo.com/group//