Tuesday, May 4, 2010

Conversation with Ann Hood (WACMA)

I wanted to tell y'all about my conversation with Ann Hood (WACMA - Chip's sister). Many of you, if not all of you, are members of WACMA so I am sure you know who Ann is. Anyway, I talked with her last Friday regarding getting the message out to Chiarians about endoscopic decompression. I had noticed on WACMA, that all the info was really about the old school zipperhead surgery. First, let me tell you that she is one great lady! She was a hoot! We talked about exactly what endoscopic decompression is and who qualifies for the surgery. She was very interested in what I had to say. I told her that the leading Chiari doctors (Oro and TCI) don't promote it because there is no money in a surgery they cannot perform. Endoscopic surgery takes amazing skills and tedious training. It is hard to perform brain surgery on a TV screen! Dr. Di developed some of the instruments he uses in the surgery because it is so new they didn't exist. Ann said she was going to shoot one of the TCI docs an email to ask why they do not provide the choice of a much less invasive decompression with a much quicker recovery time and a shorter hospital stay (24 hours for me!)! Isn't that awesome! Ann will get us some answers :) I just love this lady!! She was so supportive. She is going to put a link to my blog on WACMA's site!! How cool is that? She had to go out of town for a week but I am to call her next weekend to go over what TCI said and to see how else she can help me spread the word. She gave me contact names of key players from other sites and I am going to contact them to see if they would be willing to help educate our community on the endoscopic alternative. I started this blog to help my Chiarian community. Between having Ann on my side, this blog's success, and Protandim, I am realizing my dream of paying it forward! Here is to all of those who helped me get well, now I am well enough to help others... full circle :)))

Life is good!
Lori

4 comments:

lubischermd said...

Would be interested if you could provide some details regarding your endoscopic surgery for Chiari I.

How much of the skull bone was removed? Was the dura opened and a patch placed? Were one or both tonsils shrunk with electrocautery? Was intraoperative ultrasound used?
Was a C1 (or more) laminectomy performed?

Also what degree of tonsil herneation did you have? Were CSF flow studies done pre and post op?

Lori said...

Hi! No problem. My herniation was 4mm (not even considered Chiari by some so-called "experts"). A CINE MRI showed a reduction in flow. I failed a neurological exam done by Dr. Heffez in Wisconsin. Dr. Di removed a 2" x 3" portion of my skull. My dura was scored not opened! I think there are 3 or 4 layers to the dura and doctor Di only opens the first couple to relax the dura as opposed to opening it all the way to the brain, allowing the brain to be exposed to air. My tonsils were left where they were. Without the skull impeding the flow, there is no reason to touch the tonsils. Doctors don't even know what roll they play in the brain. Why would you want to burn them or chop them off? After surgery, my flow was said to be beautiful! I am unsure about the intraoperative ultrasound, but I believe I remember him mentioning that. I simply can't remember so don't quote me :)

Does this help? Is there anything else you would like to know? I am eager to assist :))

Much love
Lori

huffmang said...

awesome job Lori getting the information out there on the endo surgery!!

I am having endoscopy tethered cord surgery at the end of July and then the Chiari done at a later time. by Dr. Di....I am very excited to get on with it and start my new life :)

Lori said...

Hooray for you!!! You have made one of the best decisions of your life!

I just talked with Ann again yesterday and Di is being added to WACMA's list of docs.

I wish you bravery, a short recovery and a happy long pain-free life!

Keep me posted. I would love to know about your experience with doc Di and CC :)

Much love
Lori

 
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