Chiari Malformation Community
NS appointment #1
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NS appointment #1

Is there a term for "expected frustration"? That's what we got today. We went to see the NS, Dr. Rastogi in MD, today. He said Penny's Chiari is not significant. He finally admitted that the Chiari could be causing the headaches and the weakness but does not believe it would cause the head to toe right side numbness also. He also says that he doesn't think surgery would do anything for her at all. He looked at her MRI and spent about 20 mins with us. He said that the MRI picture shows room above and below the Chiari for CSF flow. He never mentioned doing any flow study. His best advice was to refer us to a NS at John-Hopkins for a second oppinion and see the NL to manage the symptoms and headaches. He also said he thinks it's much more likely that the symptoms are caused by MS and that the NL should continue to test for that.

I'm sorry to say that this is about what I expected. He claims to deal with a lot of Chiari patients and does the surgery often. Expert? NOPE!

We know her Chiari isn't big...compared to many others, but it certainly isn't insignificant. Her symptoms are real and it's obvious that the Chiari could and probably is causing them. So I guess it's on to the next NS. We'll see John-Hopkins, waiting to hear from Dr. Heffez at WCI, and checking out a NS in Chattanooga, TN. If anyone else here has seen a NS in Chattanooga please let us know.

Thanks again, everyone. We'll keep you posted.
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7 Comments Post a Comment
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620923_tn?1405964489
Oh the "expected frustration" is just a part of the royal runaround we all get....I wish I knew a better term too!
But, size of the herniation is not what makes u a surgical candidate or not....it is a CSF blockage and overcrowding...plus symptoms.

Johns-Hopkins is a fine facility, but I have not heard nething good regarding chiari there....

Sorry, but there just do not seem to be chiari drs everywhere we need them...and if u do get a name of a Dr in Chatanooga, u may experience that same "expected frustration"

So sorry u got that responce....

"selma"
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539750_tn?1226525277
I have learned to expect it, and am sooooo cynical of doctors.  I just can't trust them anymore.
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Avatar_f_tn
I'm sorry you are going through this, I feel the same way as redkim about doctors after what they've put me through.  If you don't find anything else in the Chatanooga area, you could travel to Cincinnatti's Mayfield Clinic (Dr.John Tew) or Cleveland Clinic, where there are several NS CM Specialists. Dr. DI who patented endoscopic surgery for CM, will be doing my my surgery in two weeks.  It's not all that far from Tennessee.  I live in Kentucky so I have a six to eight hour trip to Cleveland.
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1387052_tn?1279654566
Thanks everyone!

bbisweary...thanks for the info on the NS. We live in Delaware but have family in Chattanooga. Family there have heard of people with chiari having surgery there. So we are looking into the NS there. We like the idea of having family close during any surgery and recovery. We are also looking into WCI in Wisconsin. We are waiting to hear about an appointment scheduled with someone at John Hopkins. We've heard good and bad things about the place. Don't know who we will see there yet.

selma....maybe we could come up with our own term for that "expected frustration" feeling. lol.
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Avatar_m_tn
I have gone beyond expected frustration and feel cynicism.... Prior to my DX I was misdiagnosed & received treatment for conditions that I did not have, now that the doctors know what the problems is they are unsure what to do.

Treat the patient and not just the condition, you need a doctor who not only understands Chiari but just how frustrating the whole Chiari thing is for the patient & the family.....

Ray  
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620923_tn?1405964489
BTDT too...yup cynicism is deff part of this lovely process.....

I totally agree Ray....but where r those drs, or should I say y r there so few of them???
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1179332_tn?1297482590
Yes, I think that we have all been misdx one time or another...and it's soo frustrating!! I am glad that you already know what to do next and have taken that step. I think that's the most important thing in all this, if you don't get help from one Dr then you just keep on looking and don't let them knock you down!! You two have power in numbers with each of you having someone to lean on which is really helpful.

I really wish you luck with the next set of NS!!!
Caolyn
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