referral please

[mingujazz]

hello...I was just diagnosed with Chiari Malformation I and I am looking at surgery more than likely next month...

my greatest concern about the surgery is that I am not comfortable with the cauterization of the cerebellar tonsils...there are posts with information as to the function they have with other posts saying they have no function or that docotors can't say for sure what their function is so why not leave them alone until we find out?...

what is scary is seeing the the Discovery Channel's Mystery Diagnosis episode that dealt with Chiari Malformation available on the internet because the young woman who had gone through the surgery sounded so monotone as she spoke and void of emotions one way or another...it reminded me of patients who have gone through electroshock therapy...certainly, I do not want to end up like that...

Are there any neurosurgeons out there who do not cauterize in southern California and preferably within the Kaiser system? where is that 70% of neurosurgeons out there who believe in leaving the brain intact?

thanks...because this brain surgery bizness is a bit scary....

[selmaS]

HI...I was and am in no way offended and am always willing to hear what else someone has to say, but also wanted to be sure u were not basing ur decision on that video as I did not feel  it was the only thing or even possibly a clear insight as to how we may be affected.

I know that many drs used to cut the tonsils, that I do not agree with.....some times the tonsils will retract on their own.....other times even with cauterization the tonsils r still hanging down below the FM.....

U mention 2 drs , I am familiar with Dr B...but not really the other dr.

The best thing u can do is educate urself, but all chiari surgery is controversial....if u talk to a reg NS one that feels all chiari findings r incidental.....we have to find a few drs to visit and  make the choice as to which is the best for us...no one can really refer us  or say go to my dr...bcuz we all may not get the same results, or feel the same about the dr personally....and that is important too.

No worries...just keep on adding ur  info as I find it interesting : )

"selma"

[mingujazz]

Hi Selma...thanks for your prompt reply but most of all your welcome...

To answer your question: I lean towards the opinion of the 70% of Neurosurgeons who believe that the brain tissue should not be touched or manipulated in any way unless absolutely necessary, which is consistent with the basic principle of neurosurgery, which is to preserve neural tissue like the brain at the expense of other tissue like bone...

I am aware of Dr. Lazreff's new surgical technique of just cauterizing the tonsils both to reduce the surgical trauma for pediatric patients, and to minimize the risk of later complications, according to his article...and I know that 30% of all pediatric Neurosurgeons do cauterize..and my Neurosurgeon's specialty IS pediatric neurosurgery.  I also know that Dr. Batzdorf at UCLA also cauterizes and his specialty is not pediatric neurosurgery...

Most of the research I have done says the cauterization of the tonsils for this surgery is very controversial (70% don't cauterize and 30% do) and patients usually have an opinion one way or another, which I do.  But more important than my opinion, is the FACT that the functionality of the tonsils is yet unknown.  And it is this fact that heavily influences my opinion.  

I just thought I would ask because this is all new to me..it is not my intent to offend anyone..not you or the young woman in the video or anyone else who has had their tonsils cauterized...you are probably right, the young woman's voice was most likely the filming and I am glad to hear you don't talk like that...

Thank you Selma for all you give of yourself to this community...

Happy Holidays!!!

[selmaS]

Hi and welcome to the chiari forum.

Hi...I am not sure y u feel the need to locate a dr that does not cauterize....my tonsils were and I do not speak in a monotone voice, that may have been the result of being filmed..not surgery.....

We do not give referrals, but we do have a list of chiari drs that members have been to and liked to help u with ur research of drs.....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

If u have questions about the surgery, please feel free to read my journal and view my pics from mine via my profile page....click on my name to get to it.

"selma"