The Barrow Neuroligical Institue vs The Chiari Institute

General
1

Hello Every one...

I am in need of advice. I was set up to meet Dr. Rekate at The Chiari Institute in Great Neck NY and was scheduled for a consultation 10/01 and Surgery scheduled on 10/04. Due to a kidney infection this was cancelled. I decided to look into the Barrow Institute b/c it was AZ where I live. I ended up meeting with Dr. Spetzler who came highly recommended at their institute.

When I came and traveled from Tucson AZ to Phoenix AZ it took over 2 hours to see Dr. Spetzler and when I finally came in to see him. It was a very young Dr that came in and basically read the notes of the previous Dr. who knew nothing about Chiari. After I had explained all my symptoms he was confused as to what I was telling him.

Then...Dr. Spetzler came in, after telling him that I was a complete different person then I was a year ago and the symptoms were getting worse he finally agreed to do another MRI to see if there has been any descending of the tonsils. Even after telling him what my symptoms were, he felt that they were unrelated! After he saw my frustration he decided to look into the 2nd MRI.

I am not looking to have the surgery if possible. But I did not get any answers as to how to treat myself or what I am restricted to do. All my research came from me researching what Chiari was. I have decided to go through having this MRI and giving this Dr a 2nd chance. He did say one thing that I was happy to hear. He stated he wanted to be able to sleep at night knowing he made the right decision and he did not want to rush into surgery.

I really do not want to travel out of state.....It has been 5months now since I have found out that I have Chiari Malformation 1.

Are you finding that you are able to live with Chiari and not having the surgery?

Are you finding that you are getting more answers from a Chiari Institute vs. another institute that specializes in all types of conditions.

Has anyone met with Dr. Spetzler?

If you were in my shoes which many of you are lol! What would you do?

I fell like my life have been on pause. I am willing to take that pause to get better but it is becoming extremely irritating that you find these highly recommended Doctors to only get disappointing when you meet them.

Thank you for your help.

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Hi Anna,

You can find Chiari experienced Neurosurgeons in most cities & at teaching hospitals. Chiari Centers are very important but not the only place where you can get excellent treatment. I know many Members that have active lives without surgery. Surgery should only be considered if your symptoms don't allow you to have a good quality of life or if your herniation is so bad that it is blocking your CSF flow. I think we live in a surgery happy society. It is very refreshing that you are asking the right questions. It is very common to see a let's wait & see approach.

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Wow Susan, if you can message me with your Telephone number I would appreciate it. I am really not wanting to see him now. I was really concerned at the fact that I traveled to see him waiting so long and did not see him until they noticed my frustration. Then stated that my symptoms were not related. If you are available I would like to talk with you some more.

It looks like I may need to travel out to Colorado instead of Great Neck.

I am really frustrated and feel like I have taken so much time off of work to search for a Doctor just to get some answers.

Is going to Colorado the answer?

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Susan you know that I Love you & think you are a Great Person !!! Thank you for helping other Members out & in a way that protects Ben's Friends.

Tracy Z.

Susan J said:

Sent you a message. I am more than happy to speak with you.

Susan