when is it necessary

[cary19745]

i,i've been diagnosed with chiari #1,my doctor says he does not want to perform any kind of surgery.but i'd like to know when is it necessary to consider surgery? and is there any non evasive relief from some of the symptons?he also has not told me too much about chiari,is it life threating?

[Roy902]

I sent all my records to Dr. Oro in Colorado; he charges X amount of dollars to review all the MRI's and the paper work from all the doctors that you have seen.

I went to the hospitals in my case and got copies of the MRI's free of charge;  I then had to pay for the paper work of the MRI's and all other documentation.  

The hospital did or no longer keeps the paper work at the hospital; they have an outside buisness do this for them.  I had to send them my name and so on and they charged me $175.00 or something like that for the processing fee to have copies made of the records that had been complied by the doctors at the hospital.

Locate the doctor that you want to review your records; call first and talk to his or her office and see if they still do this or not and sometimes your insurance will pay for this service or part of it at least.  

In my case I was referred to this doctor by another Chiarian that had went through this process.  I still called and talked to his office and talked to his nurse.  Thus, creating that one on one relationship so to speak.  She told me what I needed and this enusured that the doctor had everything he needed to make his assesment of my situation and if he felt it was neccessary for me to go to Colorado and meet with him for a one on one appt. for further evaluations and perhaps more MRI's and so on.

NOTE:  MAKE SURE THAT YOU SEND ALL THIS REGISTERED SO THAT IT CAN BE TRACKED IN CASE THEY SAY RHEY DID NOT RECIEVE IT AND SO ON; AND THINGS DO GET LOST AS WELL JUST A SAFETY CATCH.  IT IS WORTH THE EXTRA MONEY..  

I hope that this helps you.


Roy

[taytaymae]

Hi Roy

I too am having a good bit of problems with doctors. I noticed you and a few other people have mentioned sending all your stuff to a dr that im geussing is prolly a good distance away from u. How does this work? And what do u send them? Do you call and ask first?

Thank you!

[Roy902]

Cary,

I have been diagnosed since the fall of 2005 and yet to have surgery;  I meet with my nueroloigst often and he checks me over so to speak and we talk about things.  

I meet with the surgeon after each yearly MRI and he tells me that he and the other team members look at the Mri's as well.  My doc sounds much like yours - we will just sit on the side lines and sit and watch things....

Last time he told me that the MRI just does not show the need to do surgery at this time.  I told him listen to me and treat me and not just not the MRI.  I sent all the information to a expert in Colorado and he said that he would do nothing different.  

My herination is at 3 CM's as of last spring and we do this every spring.  I wish you the best.

Roy

[selmaS]

  No worries....we do have a very small list of drs in Canada....not sure if one is listed near where u need as I do not know the area at all, sorry, but do take a look at the list and research all drs on it as it is not a referral list, just a means to help u with ur research.

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

We  do have a few Canadian members that I am sure will pop on and tell u about drs they see and where : )

  "selma"

[cary19745]

thank you so much for answering my question,the doctors haven't really been helpful regarding information.i don't know about the csf blockage or the syrinx,overcrowding but i do have another appointment with my neurosugeon on march 2 so i'll will be sure to ask him!do you know of any good dr"s in windsor,ont?thanks again sooo much.......! cary19745

[selmaS]

  Hi and welcome to the Chiari forum.

Well to know when it is time for surgery all depends on how is chiari affecting ur overall health and ur symptoms.Were u checked for a Syrinx, and a CSF blockage?...Overcrowding?...these r more important then the size of herniation and many times drs make their decision on the size of the herniation.Next in line r ur symptoms....

And last was ur dr a true chiari specialist, it is very important to get an opinion from a NS that specializes in this area and not just a NS that occasionally does the surgery.

For the most part Chiari is not life threatening, but left untreated it can result in death as  it can affect all functions within the body....it is life altering and needs to be throughly checked.

We r happy to have u join us, but we r not happy for the reasons that bring u.

  "selma"