Chiari Malformation?Register Today!
- by LeashRN Jan 23, '06Hello,
I am a new nurse (just passed boards on Jan 11) and my husband was just diagnosed with Chiari Malformation. The neurosurgeon finally saw him/us on Jan 18 - the original dx was made by his ortho Dr back in mid-Nov. It took us 2 months to get an appointment with this guy and he is no where near a Chiari expert - he does 1-2 Chiari cases per year.
Our problem is the surgeon recommended my husband have surgery in 2-4 weeks and we at this point would like to seek out the best surgeon/neuro hospital. How long will it take to get in to see someone who is really expert in this field. Can we wait? The office manager at the most experienced surgeon's (has done 300+ Chiari surgeries) office told me that we have some time and that I must remember my husband has had this brain herniation all his life.
Has any one had any experience with this malformation?
Any insight would be appreciated.
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- Jan 23, '06 by prmenrshttp://www.ninds.nih.gov/disorders/chiari/chiari.htm
I believe it is seen a lot more in the neonatal period as it is a birth defect. It sounds like the surgeon who's done 300+ is the one you'd want to go with, and I'd certainly support that. You may want to see if you can consult w/ a pediatric neurosurgeon, too.
I wish you both well!!Last edit by prmenrs on Jan 23, '06
- Jan 23, '06 by hollykateI'd recommend you head to the hospital that does the most, with good outcomes. 1-2 a year is not enough. 300+ sounds nice, but is it over the past 30 years or is it over the past 8 years.
I used to take care of people with the Chiari malformation (not kids). They usually did quite well after surgery. However, it was a teaching hospital and it seemed to depend a bit on the resident as well.
Best Wishes with your huband, I can tell you are going to get him the best care available!!!
- Jan 23, '06 by gwenithAgreed - unless there is something that has changed recently then your husband has had this his entire life. No need to rush things.
- Jan 23, '06 by suzanne4Not sure what type of symptoms that your husband was having, new or if going on for sometime, but as Gwenith said, this is something that hs has had for many, mnay years.
You definitely want to go to a physician that has done hundreds on these, not a couple per year.
And shoot for a hundered per year..............like you see in your bigger neuro centers. If you want to send me a pm, I can recommend a few people to you.
- Jan 24, '06 by LeashRNThanks for all the kind words and advice.
The Dr that has done 300+ graduated med school in 1955 - so he may have been one of the first surgeons to do this. And a large number of Chiari surgeries per year per surgeon is 5.
So we're still searching - only as quickly as possible.
- Jan 24, '06 by NurseyBaby'05Leash
I PM'd you