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Chiari Malformation Community
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1558393 tn?1299073631

The Wisconsin Chairi Center

Hi, I was wondering if anyone has sent the questionnaire, MRI's, and your operation report to them for their imput? I have filled mine out and sending it off this week with a copy of my insurance card. I have to do something the headaches and body pain are getting so bad. Can't find a doctor here at home that knows enough about it to help me.
I was wanting to see if anyone sent theirs and has got a response from them and how long it takes.

Thanks for any help,
Tina
7 Responses
1179332 tn?1297482590
Hi Tina

I haven't done this myself but I have heard of many other members doing that here and getting results fairly quickly. From what I understand, the Drs take a look at the MRI's etc for a small fee and then they will give you an idea on whether they can help you or not. If they feel that they can help you, they do all the testing in two days which minimizes your travel. Hopefully, someone who has actually been through this process will comment on this further.

Carolyn
1558393 tn?1299073631
Thanks Carolyn...
1303966 tn?1296743610
Hi Tina,
I have been to the Wisconsin Chiari Center, twice.  I was not charged a fee to send MRI's and other (questionnaire).  Dr. Heffez and I believe other doctors he works with will review what you send and if he thinks he can help you then he will have Renee contact you to set up an appointment.  This is done pretty quickly.  The appointment is a two day appointment.  Testing one day and see the doctor(s) for an extensive exam and discussion the next.  He will show you your MRI on his laptop and point out the problem.  If you have really recent blood work and specific test that he may repeat, don't be afraid to talk to Renee about this.  Dr. Heffez has his own MRI protocol, so he will most likely want to do his own MRI, but if you have recent blood work, why repeat it and spend more money.  I send all of my blood test results to him ahead of my appointment.  

Go with a list of questions, and don't be afraid to ask him.  Good luck
1558393 tn?1299073631
Thanks for the information. If you don't mind my asking...have they helped you, have they suggested any treatment? I am mailing mine off today. I was a patient of Dr. Dr in Cleveland but he is no longer there. I have tried to wait to see where he goes but the pain is just getting to bad for me to wait any longer.

Agian thank you very much for the info,
Tina
Avatar universal
Dr. Heffez did my decompression surgery.  The post-surgery care is not the best.  I have explained my problems several times to the Center and I feel as if I was just a surgery number.  The only followup is a 6 week visit to return you to work.  I have been in contact with another Center that seems to care a little more.  I hope your surgery and experience there goes better than mine!
1303966 tn?1296743610
I have not had surgery.  I have other issues (seizures) that Dr. Hefezz wanted to make sure were under control before we visited surgery.  He did not push surgery on me.  My problem is somewhat complicated.  I have complicated migraine from the compression in my brain.  My L-vertebral artery and R-tonsil is putting the squeeze on my brain stem from what I understand.  My Chiari is considered mild, whatever that mean.  My symptoms don't feel mild to me, very frustrating.  I will get a second opinion.  The Wisconsin Chiari Center is my only opinion.  They don't do CINE  MRI's unfortunately.  At least they did not the last time I was there.  This type of MRI will determine if there is blockage of the fluid around your brain.  It wouldn't hurt to get an opinion from The Wisconsin Chiari Center.  I think the process was very thorough.  I don't know about post surgery, because I have no experience.  Unfortunately, I hear that many who have surgery don't feel they get the care they need after surgery.  This is probably something many surgeons need to work on.  Good luck.
1179332 tn?1297482590
Just wanted to add to what kricklekrin said...surgery aftercare IS a huge problem for most us no matter where we go for treatment. I'm not sure if it is b/c most surgeons view that they have done what they can and we will have to live with the residual effects or if it is b/c there is just not enough research done... but from all the information I have gathered, it seems that many of us find ourselves in this position. So, a word to anyone that is going in for surgery...really stress the fact that you want a follow up plan!!

Carolyn
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