views on chiari institute...

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views on chiari institute...

Postby emmacos » Fri Apr 13, 2012 2:31 pm

Hi All,

Just wanted to ask - what are peoples views on The Chiari Institute in New York?

I've emailed them to ask about my daughter Helen's continuing daily headaches and they still say her pseudomeningocele is the problem and that it needs resolving. I cant find a neuro surgeon here in England who will do that, and am wondering, again, whether I should take her to get the surgery done there. Although the cost is a major problem for me, as we don't have private health insurance, and live so far away. But if that would solve her problems, maybe I need to find a way!!!!

Emma.x
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Re: views on chiari institute...

Postby tennesseewalker » Fri Apr 13, 2012 2:36 pm

Hi Emma. Maybe you could contact the media. When stories like yours are aired, they sometimes bring in money donations to help.

Good luck.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: views on chiari institute...

Postby emmacos » Fri Apr 13, 2012 2:39 pm

Yes maybe that is a good idea!
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Re: views on chiari institute...

Postby jjames » Sat Apr 14, 2012 3:03 pm

Hi Emma -
I had my second decompression surgery done at TCI. Please PM me if you have specific questions. I would be happy to help!
Have a blessed day!
~Everything is always ok in the end. If it's not, then it isn't the end.~

JJames
ACM/SM
1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
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Re: views on chiari institute...

Postby reedy » Sat Apr 14, 2012 10:17 pm

Hi Emma, Be circumspect about thinking about getting surgery done privately in the US. The costs are astronomical. I've given this issue quite a bit of thought, and as you know I've been to see a number of US doctors - but for second opinions. If you do surgery in the US and there are any glitches, then the costs will keep going up. (If Helen met the study profile for the NIH study, you would be OK in getting surgery in the US.) But otherwise, I think there is excellent expertise in the UK and you might just want to make the US pilgrimages to get the opinions, then take your data to a doctor you trust, and who is open to discussing alternatives, in the UK. In my case, and I think for most on here, the difficult part is knowing what operation to do. The actual operations are bread and butter for neurosurgeons - they know how to do them well.
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Re: views on chiari institute...

Postby syrinx48 » Sun Apr 15, 2012 6:17 am

Hi Emma,

I can only agree to what Reedy has written. I myself am often wondering what I should do. I once went to Germany and had my cervical herniated disk operation. Beforehand I had to ask permission from my insurance company, which I got. THE costs for An OP in the USA are much higher. Perhaps if you still consider going to THE USA, ask your insurance first, if they will cover the costs in case of An OP.
I am sure though, that you can find some good NS's in THE UK. I once talked to Dr. Flint. Hè seems to me very capable and very open minded!
Here in Holland are also not that many NS's who are very knowledgable, but hè, you only need one.......

Good luck to you and Emma, how is she doing now, still in Hospital? Thinking of you both,

Annemarie
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Re: views on chiari institute...

Postby reedy » Mon Apr 16, 2012 2:59 pm

A few years ago I asked and the costs for an SM op in the US were something like $100,000-$120,000, assuming no complications. It does vary quite a lot, but consider it to be in that ballpark or higher. And complications are not unusual in our situation.

Its rare for European insurance to cover anything in the US. Sometimes you need a special rider (very expensive) even for regular insurance (i.e. for normal people) for travels in the U.S.

Note that I've just found that my travel insurance, which was fine with my SM as a listed condition, does not include coverage for ANY trip with any medical appointment as its reason for travel. So my recent 'checkup' trip to the US which has now been extended to include a few extra weeks for a surgery, is not covered. :(
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