MAYO CLINIC- Looking for answers

General
1

Hello all,

I will be going to Mayo Clinic (Minnesota) on May 8th and I would like to know if anyone reading this have experience with them in relation to treatment of Chiari I Malformation and Cysts. Also, the length of the visit, etc... but most importantly, if anyone had success with the treatment. Thanks.

2

Hi Mandy,

No, I haven't tried that Dr. yet; I have had so many different opinions around that I just get confused.... What can you tell me about Dr. Heffez? Thank you for your response :)

Lourdes


Mandy said:

Hi Lourdes,

Have you tried Dr. Heffez yet in Milwaukee? He's close to where you are at now....I'm not sure of his experience with cysts however.

When you say treatment, do you mean the decompression, or does Mayo offer something different?

Best of luck :)

Mandy

3

That's what I have read (I just read 1 or 2 reviews though) but I wanted to hear more...

Thank you!


razzle51 said:

Just know people with chiari didn't have good luck there... Hope your apt goes better....

4

Thank you very much!!! :)

Mandy said:

You're welcome :)

This is his website:

http://www.wichiaricenter.org/

Several members have traveled to see him, but that's not uncommon with Chiari. Which you know, I see you've traveled a few places yourself :)

My rheumatologist worked with him about 10 years ago on positional cervical cord compression, this is linked to fibromyalgia and dysautonomia, not that both have to be present for cord compression.

I've heard he doesn't focus on the length of the herniation, but more on symptoms and if spinal fluid is being blocked.

He's on our member recommended doctors list as well.

I haven't seen a NS yet, so I don't have personal experience with Dr. Heffez specifically.

5

I clicked "Join group" but they haven't accepted me yet :(

Abby said:

ok, I clicked on the link with FB and it said you have to be a patient of the group, so I was not aware that you can be a member anyway.

6

I went to mayo and have Chiari. They stressed a nervous system disorder (pots/dysautonomia) instead of my Chiari. But that also could be the cause of my symptoms. I wish they had given my Chiari a good look, but I haven’t had any other doctors think my Chiari was the problem so you may have good results with them. The visits are probably going to take a whole week. The people are soo nice. I recommend the Kahler inn and suites if its in your price range. It is connected underground to the hospital and is maybe a 5 min walk to you appointment

7

Abbey,
Thanks for the info! I hope you have found the right answer and treatment there… I’m prepared to stay for a week, and yes, I will be staying at the Kahler in; I received flyers from Mayo Clinic saying they offer discounts to patients.

8

Razzle51,

Hi, thank you!! Actually I made the request from my page as “Duka” (my nickname) if you can tell her again I would appreciate it! Sorry about that! Thanks!