Back from New York

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Back from New York

Postby donny » Tue Nov 11, 2014 9:57 pm

Just got back from an appointment with Dr B at his new facility. Well he isnt sure yet if Heidi has a tethered cord or if its just scar tissue from her previous tethered cord surgery and the scar tissue is trapping some nerves. He's requesting some additional MRI's in the prone position to see if the nerves move. if they move its tethered cord if not its just scar tissue. Of course he reccomends surgery for this.
He also recommends she has the dura opened up tonsil resection and duraplasty because the tonsils wont recede as they should have done, in fact the tonsils have herniated further down and she has intractable headaches and other symtoms which just aggrivate chiari symtms. personally not sure about the brain surgery. Her NS according to him cant do whats nessasary but there is someone at UW that can. He has worked at TCI in the past.
Take care
Don
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Re: Back from New York

Postby pmaxwell » Wed Nov 12, 2014 9:56 am

Don,

Having a base to go forward is always a good thing. Most have very high success with decompression the first time. However it seems when you need more than one surgery, the odds decrease. Not to say that a second or third surgery cannot do the trick because it can. There are so many great pediatric neurosurgeons out there treating and studying Chiari. Best wishes to Heidi and relief of her symptoms.

Patricia
Together We Can...
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Re: Back from New York

Postby razzle » Wed Nov 12, 2014 3:19 pm

Don have you heard of Dr. Trost at UW-Madison... heard he is really good
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Back from New York

Postby donny » Wed Nov 12, 2014 10:13 pm

Paricia, Its not a decompression, That one worked out fine, there is no reason to revise what has already been done. Its just it was a conservative surgery and what Dr B says her NS should have gone further. So with that said he believes that going the rest of the way (opening the dura and resection of the tonsils.). Not really a decompression there would be absolutly no bone removed or cut widdled down nothing like that it would be a huge mistake to do that and that would turn a good surgery into a irrepairable surgery, and thats a life sentance. But He implied the dura and the resection should have been done to begin with so basically Its just surgery to complete what already should have been done.
Roz, I have never heard of that Dr But Dr B recommended Dr Sekhar, He was at TCI for a year or so, hes a world class surgeon and Dr B says he could do what needs to be done with his eyes closed. Ok if he does it he better keep his eyes open but you get the point. I did some research on him and he seems to know his stuff.
Take care
Don
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Re: Back from New York

Postby razzle » Thu Nov 13, 2014 3:44 pm

Don do you know about the new meeting

If you are in the area there is a NEW WI ASAP Support Group!!!
Please contact/message Stacey Blankinship for more info.

The meeting will be 11/23/14 at 3pm at our local coffee/tea house.
Lou's Brew Cafe 248 Wisconsin St. Oshkosh, WI 54901
Once you choose hope, anything's possible.

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Iowa
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Re: Back from New York

Postby donny » Thu Nov 13, 2014 5:23 pm

Roz I live in Washington state not Wisconson.
Take care
Don
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