Appt with Dr Di--Cleveland Clinic!

[dkdean]

WOOHOO!!!!!  They are able to get me in next Wednesday, April 28th with Dr. Di!  I am beyond happy about this!!!!!!!!!  Maybe some answers!!!

[hernandez7]

my daughter is going to see dr.di. on the 14th of july.her cm1 was found accidentally also in jan.during a mri that we were expecting to see the signs of cp.but withe those signs they found her chiari.now her drs has followed her since jan. until a couple weeks ago 1 dr.said things were getting worse and it was time to see nuerosurgeon.honestly it surprised me how fast they got her a appt.now i don't have to bring a referal or anything but also the drs following her are all cleveland clinic drs and everything is in the computer.but i think the best thing to do is call his office and talk to a receptionist and make sure also clear insurance info.i am writing out tons of questions and bringing my notebook with me.good luck

[selmaS]

Hi...u asked about a LP...sometimes they r needed to aid in getting a proper dx....yes, chiarians should avoid these if possible bcuz if the person doing the LP is not well informed on chiari and they draw too fast it can pull the herniation down further, or back down if already decompressed.

In the hands of a chiari specialist u will fair much better than one that is not.This will be done if another condition is suspected in addition to chiari.

"selma"

[ellie936]

thanks for the info dkdean...i do have another question. i am very surprised that someone with as good a reputation as Dr.Di would order a lumbar puncture...i was under the impression that LP's were a big no-no for chiari, since they can cause more hernation. is this typical? was a reason/explanation offered?

[dkdean]

Hello--I had low-lying cerebellar tonsils that showed up on an MRI during an ER visit (numbness, loss of speech, visual disturbances, etc).  I was told several times that this was an incidental finding...while visiting the MS board here I heard "Chiari Malformation" for the first time and started researching it--I was directed to this board and found that many of my symptoms fell into the CM realm.  I wanted to see a specialist familiar in CM (since the neuros I saw said it didn't have anything to do with my issues) to find out for sure--I called Cleveland Clinic to make the appt with Dr Di.  My insurance does not require a referral (and Dr Di doesn't request one).  I got copies of all medical reports and a CD with the MRI on it to take with me for my report.  It was after reviewing the MRI and my neuro eval that Dr Di officially confirmed CMI and then requested more testing (more MRI's, spinal fluid flow, lumbar puncture).

I'd suggest having another person go with you to the appt and having all your records handy...It was great to have someone taking notes as I asked questions.

GL!  Let me know if you have any other questions!!

[*Stormy*]

Hello and Welcome

There are several members here that have seen Dr. Di..anywhere from already having the surgery to just getting an appt.

If you don't get a lot of responses here..I recommend starting a separate post with Dr. Di in the heading.

Good luck!
Carolyn

[selmaS]

Hi and welcome to the Chiari forum.

I can not answer ur questions on Dr Di and I am sure the other members that went to him will let u know. I just wanted to welcome u to the forum.

"selma"

[ellie936]

i am curious...what is the process for getting in to see dr.di? did you need a referral, do you already have a diagnosis of chiari, do you have scan showing herniation, etc? basically, what do they require of you before they will agree to see you?
thanks and good luck :)

[ellie936]

i am curious...what is the process for getting in to see dr.di? did you need a referral, do you already have a diagnosis of chiari, do you have scan showing herniation, etc? basically, what do they require of you before they will agree to see you?
thanks and good luck :)

[dkdean]

That certainly helps!  Thank you!

[ChiariWolf]

Not knowing your exact symtoms it's hard to give you questions to fit your situation. However, I belive the most effective question is first of all "is this chiari" then go through you most limiting symptoms on by one with him. Ask if they are or could be related to the Chiari. Also, find out if he feels there are other factors that could be contributing to the symtoms.If so, what are they?

Perhaps most important in this visit is to make certian he understands you are not there to get meds, your there to get answers [meds do not help this anyway]. Express to him your most limiting symptoms and how they limit your life. IMO this is the most effective to help him dx your condition. Then the questions that matter will come to you once he or the team is able to make a dx.

Does that help a little??
Wolf

[dkdean]

Thanks Wolf--I have some ideas about questions, but do you have some ideas for me?  Most of mine center around if he feels Chiari is causing these symptoms (restrictions? treatment?) or if it is indeed an acelphalgic complicated migraine with 4 weeks+ of visual disturbances?  Not sure what else to really ask....

[dkdean]

Thanks everyone!  I am really hoping it's the complicated migraine--just b/c at least with that there is medication....but, I'd rather know for sure what's going on so that I am not damaging my body by running, high-impact stuff, etc.  And, finding this group and seeing how well people can get by does make me feel better if that is the diagnosis.

Kim

[selmaS]

Congratulations!!!

Keep us posted on how it goes : )

"selma"

[*Stormy*]

Awesome!!!! I am so happy for you :)

I have a feeling that you will finally get some REAL answers about what is going one!!

Good luck!
Carolyn

[WarriorMomma]

Very happy to hear that for you. I have an appointment with my Neuro next week too. Last saw him in 2008 when my symptoms were manageable. Lately, a LOT worse.

[dpulum]

That's awesome! I hope you are able to get the answers that you
need, it is so frustrating when the medical people can't or don't help us.

Tina