About TCI for me & TC questions

[Guest guest]

First, a HUGE thank you to my support question about my mom - you guys are

amazing! I don't know if I can reply to each and every one of you because

there were so many, but you all have given me some great advice and help and

I now have new ideas and a new way of looking at the situation. I truly

appreciate it!

Now, on to my questions! I suspect that I have tethered cord. My local NS

told me he just can't tell one way or another from my MRI (which is common,

I knew this already). He's ordered another MRI, just to check and see if he

could see something even lower down if the tech is really concentrating on

excluding TC. He said he probably won't be able to tell, but it's worth a

shot since I'm having another MRI anyway.

1. I can't do a urodynamics test because I'll deathly allergic to contrast

dyes. Has anyone else run into this? What will TCI do to test me for TC,

since I can't do this standard test?

I also do have dimples low on my back and an indentation, too. I grew up

with chronic UTIs, meaning about 6 per year from age 5 to age 14 when they

just stopped. I've had kidney stones, but I haven't found anything about

those relating to tc. ANy of this sound familliar to those who have TC?

So in the end, without further testing, will everyone just guess if I have

TC or not?

2. Also, is there a link to a list of questions I can review before going to

TCI? I seem to remember one, but can't find it again. I have the " deciding

on a physician " link. I'm just concerned that even though I'm asking

questions like crazy, I'm missing something, and of course my trip to TCI is

unbelievably expensive and difficult, so I want to make the most of it. I'm

having all the tests there and my local NS said he will review all of the

test results since we don't have things like 3-D CT scanners here. I live in

a fairly big city, but our hospital isn't that rich!

We have watched all of the TCI videos together (my husband and I), but

logistically there is no way we could have the surgery at TCI. My son is

autisic and my mother could not care for him for 7 days, or 9 for that

matter. We could not take him with us for the surgery and we have no one

else to take care of him for so long. I also cannot confidently have surgery

and leave, wondering if the post-op support will be there for me. I had a

horrible experience with a surgeon who left the day after my surgery and

swore he would be on call, but wasn't. I ended up in the hospital for two

days waiting for the jerk. Besides all of this, my family and support system

is here and I would not feel confident having surgery and spending my first

week after surgery without them. I could not recover well wondering how my

son was doing 17 hours away from my husband and I. It would be terribly hard

on my mother even if she could take him, and I would worry about her

well-being as well (she is already caring for a teenage daughter and my 87

year old grandma!). I can't see how putting myself in that situation before

this kind of surgery would be positive in any way.

I understand that TCI is considered one of if not the best, but I honestly

don't think, in my case, it would best for me for surgery. For evaluation,

yes, but not surgery. I also know that many, many people actually do have

good outcomes using a smart, experienced, up-to-date local doctor for a

standard decompression with no other issues. I'm hoping TCI will agree to

work or consult with my local NS (who does a decompression at least once a

week and has also never lost a patient). If not, I have to do the best I can

in screening this doctor and so far, he's answered every question exactly

how TCI answers them in their videos.

I know this was a huge email, but I didn't want to spam the list by

separating my questions! lol Forgive the length!

~ Alax