What can I expect at first visit with Dr. Di?

[James_24]

My 12 year old son was diagnosed with a Chiari I in January.  His is 6mm.  After going to a neurologist and then to a neurosurgeon here in OKC, I finally made the decision to travel to the Cleveland Clinic to see Dr. Di.  His appointment is June 10th.  I am taking all of his medical records and a copy of the MRI.  For those of you that have gone to Dr. Di, what can we expect them to do (testing wise) the day of our appointment?  We are travelling 16 hours for this appointment and I was just wondering if it is going to be a 30 min visit (or as the case with the neurosugeon her...10 minutes!)???

[laratterman]

Dana,
I would call the office and talk to one of the nurse practioners and ask if they can order one while you're there.  Especially if you are traveling any distance to go to CC,  They may go ahead and try to get it scheduled.  Be aware tho, that in order to do it the same day, they may have to change James' appt. with Dr. Di.

I go back for my 3 month the end of this month.  I am having a f/u MRI before seeing Dr. Di.  So I know this can be done.

My other thought is that you could ask them to send a request for a CINE to one of your local imaging places and have it done locally to take with you.  Just a thought!

Blessings to you and yours!

Lori

[James_24]

James has had an MRI of his brain and his spinal cord.  I will be taking both of those to our appointment.  I was hoping he would order a cine MRI to see the flow of spinal fluid.  I wasn't sure if he would do any other testing at our first visit with him or not...

Thank you all for the info!  I have already found the facebook page!  Thanks so much!  I'll keep you updated on how his appointment goes...

Dana

[laratterman]

I'm sorry, I just realized I didn't answer thoroughly.

I am in Indiana.  I had all of my MRIs when I went to see him the first time, so nothing additional was required.  That's why I asked about the MRIs.  Obviously your son has had at least one regular MRI.  He may have you take him for another type, but I can't say for certain.

My total appointment was around 1 1/2 hours!  You won't be rushed or disappointed!  And the staff and red coats at CC are FABULOUS!

BTW - if you are on FB, and look up the group, there may be others who will be there at the same time.  (I don't go back until June 30th.)  If so, perhaps you can find time to meet others and learn more about their experiences with Dr. Di over lunch or something.  Just thought I would share that!

Blessings!

Lori

[laratterman]

Hi James!

I am a patient of Dr. Di's.  I had endoscopic decompression and C-1 laminectomy on April 2, 2010.  

Have you already had MRIs done?  Did they do a CINE MRI?  

When you get to Dr. Di's office, you will first meet with one of the Nurse Practitioners for your medical history, meds, neuro exam, etc.  While you're with her, Dr. Di will be going over your MRIs (again) and then will review what the nurse has added to your computerized file.  Once the NP is done, Dr. Di will come and talk to you.  He's a very nice, caring, patient man.  He won't rush you through your questions, but I would suggest, as a means to keep you on track, that you write down your questions and take with you.  Also, jot down any additional questions while he is going over things.  He will give you LOTS of information.  If you don't understand something... let him know.

Please let me know if you have any other questions!  Oh, and if you are on Facebook, look up the group "Dr. Xiao Di Fan Club".  Many others there who can answer questions too!

Blessings!

Lori

[*Stormy*]

Hello and Welcome

Unfortunately,. I have also not been a patient of Dr. Di's. Hopefully this will bump you up so those who have seen him can answer some of your questions.

One thing I wanted to add is to have all your questions written down and a list of symptoms that your son is experiencing. That comes in really helpful as it tends to get overwhelming when you are seeing the NS and usually there is a time restraint.

This thread may be helpful to you, it contains some of the common things you should ask:
http://www.medhelp.org/posts/Chiari-Malformation/Questions-for-Dr-Heffez/show/1096617

Good luck and my sympathies are with you!

Carolyn

[selmaS]

HI and welcome to the chiari forum.

I can not offer info on how Dr Di's office visits r, and we do have several members that have been to him so I am sure they will give u the 411.....

I just wanted to welcome u and to let u know we r glad to have u join us here and so sorry for the reason u had to seek us out. Having chiari is no fun and to have a child with it is a diff thing for a parent....we offer info and support for u and ur son by sharing our chiari journey.

"selma"