Friday, June 29, 2007

Following the next path

Well here I am.

Back in MD.

Glad I brought my mother to NY, because everyone seems to already know everything, so I don't have to explain. lol.

There was a lot to ingest from my trip to NY.

Here is where I am at, at this point. Be sure to read RESULTS blog for more info on surgeries.

I am taking every suggestion TCI gave. I am surrendering to their knowledge and understanding of this illness........and letting they lead.

Doesn't sound like me, does it?

Truth is that I have lived knowing I have this condition for what, 5 years.......and have gotten very little reassurance from any of my doctors or surgeons that any had a strong understanding of Chiari.

It's not so common.

But these guys see it all the time.

I actually met someone in my hotel who had the decompression in March, and was there for Tethered Cord surgery.

She was walking, and seemed to be doing well.

Three months after my decompression, I think I was barely out of the wheelchair. Still using a walker, and still barely able to move without throwing up.

Anyhow, it looks like I will be on the east coast for a while.

Even if I did these surgeries every other month starting in August, it would be March or April before all were done.

Right now, I am just focusing on the Posterior Fossa Decompression and the possible shunt that may come from it.

Please pray about this surgery, and the costs. I am going to have to come up with some new fundraising ideas. Any suggestions are welcome.

About TCI: I loved them. My nurse kept saying, "We understand here, you don't have to explain".

And my surgeon said outright that he is not afraid of my last neurosurgeon. Which was so good to hear. No one in Arizona would take me once they found out who my last surgeon was...and at TCI they could care less who he is.

That was so reassuring.

He is so everything the previous jerk was not. He even has a sense of humor, and a personality. (And people think you have to have your personality removed to be a neurosureon!)

Hell, he even gave me a hug on his way out the door, after seeing me late in the evening after performing 4 surgeries and finally able to head home to his kids and wife.

Here is his bio at the TCI webpage. Click here!

If you have Chiari, go to TCI. Start there if you can. It is so nice to be somewhere they don't ask you to explain Chiari to them :)

Take care of you,



Linda said...

I am so glad you are finally getting help. I swear, if I ever get there I will probably fall to the ground, kiss the floor and just break down and cry 2 years worth of tears. Keep us updated on how things are going. I understand the fund raising issues. I am there myself just for the consult, testing and travel. Keeping you in our prayers.

lace1070 said...

So happy for you that your experience at TCI was good ~ I just loved Dr. B,too ~ When I was about to do my TC tests, with the heel walking, he told me to take off those 70's platform shoes! I guess it's good to have a sense of humor when you are talking about brain surgery.

Queli said...

Have I thanked you for being so awesome? Thanks. I loved TCI. Now I am having a hard time getting a hold of the scheduler for surgery, but I am ready.