I got into Dr.Di at Cleveland Clinic!!!

[xmelax35]

I am so excited that I got into Dr. Xiao Di at Cleveland Clinic! I have read in a former Chiari Group I belonged to on my old email (that no longer exists so I may not be able to find the group again) that he was highly recommended!! They say he is a Chiari Specialist. Does anyone know how he does and anything of him? I just remember ppl telling me that when other doctors were telling them their chiari was no big deal and etc...that he made it a deal and he did their surgery or he helped them and he listened, etc...

Thanks so much,
:)

[xmelax35]

Thanks! I appreciate all the input! I hope that things go well with my appt. Just the night before last I went to plop into bed and out bed is up against the wall...well I misjudged distance and hit my head (top left side) FULL FORCE against the wall! Omg! my head is feeling much worse than it does with the Chiari problems. I hope I didn't make anything worse as far as herniation and stuff. I have a small amt of confusion and my head just doesn't feel good at all. I hurt big time. I have not gone to the ER here - they will just ignore me and act like it is no big deal.

[LauraSue49]

I did forget to add did love him. (DR DI!!!!)   Been struggling for this answer for 20 years.  Being told I just need attention, I'm crazy, maybe alcoholic.  Why can't a Dr just say I don't know  It is something I have no knowledge  and think about a good path to send you on.   By The way I do love attention but I don't have to pay for it.  I am a little crazy and just don't cares that I'm not miss prim and proper,  With all the meds over the last 20 years I don't get the opportunity to drink.  If I really get better maybe I will try it.

[LauraSue49]

Just had surgery with Dr. Di 3 weeks ago.  I remember waking up and not feeling that someone had just hit me with a ballbat in the back of the head.  First 2 weeks best I have felt in 10 years,  Coming off the medication having after surgery struggling.  Said coulld take a year.  Anyone else have this issue.

[dkdean]

I am thrilled with Dr Di and his staff...I feel that they listen (I love Shawnelle and Grace has been great too).  I've had a increased in symptoms lately and they call back in within a day and tests are scheduled.  In my in-person appts, I feel like I am with people who 'get it'.  All of the research I have done on Dr Di has me placing a significant amount of trust.  I always take my mom with me (she is an operating room nurse) to take notes and help with questions I have and to keep me on track and to besure my?'s are answered.  I highly suggest (no matter who you see) to take someone with you who can take notes and help to clarify.

Also--not sure you have any visual symptoms, but Dr Lisa Lystad at CC is AWESOME!!!!!  If I could bring her to Columbus, I would--but I happily drive to see her.  Very competent, good sense of humor, great bedside manner--and HELPED my wonky vision!!!

And, my 'cardio' issues are chiari too....just didn't realize it until recently.
Msg me with who you saw in C-bus---I was disappointed with a couple drs here in regards to chiari...

[selmaS]

So glad u r not going back to that dr...there r soooooo many out there not worth their weight in salt.

I am so sorry u r going thru this, but thanks for sharing ur experience as it helps others know they r not alone...and which drs to avoid.

Sending prayers ur next appointment goes well and u get answers.

"selma"

[xmelax35]

I have it scheduled with my cardiology appt at the end of the month. See I was told by CC that Dr Benzel was great and specialized in that area but when I saw him he hurt my feelings and tried to make me think it was depression even though my mri's said something different and even though I had already had prior surgery for it. He acted as though the chiari could not come back...news flash to him...there is no cure for it, lol. Anyway, he sent me to someone to do a test for depression (I am not depressed in the least bit - I am getting ticked the longer it takes to get help but not depressed) and anyway, I checked out. The doctor did not see that I have depression!  Anyway, so I was done with him. I could clearly see he didn't specialize in it and didn't care. I am hope Dr. Di is much better.

[bbisweary]

Dr. Di is great/  His staff is quite another matter. They do okay pre-op but post-op they're finished with you.  At least that is what I have encountered, I hope they get more staff, or better staff, before your surgeries.  The receptionist runs blocker and the nurse will NOT call you back even if the receptionist puts in an urgent message.  The PA is a little better. When I was there in September, they were so rushed and acted so frustrated. I hope things go better for you at CC.

[lu7997]

I love dr Di.     My surgery is in April.     I only have a 4 mm herniation and every other doc swore there was nothing wrong with me.  One NS actually said he can't cut it out so what was I seeing him for.  He sent me to a chiropractor where everything got worse.    So greatul for dr Di

[xmelax35]

P.S. 2 days ago I went to this regular neurologist in Cols that I was referred to for my Headaches. He was horrible to me!!! The dr. told me how great he was...he was NOT! Here is the brief summary of my appt: He talked more than me. He did only a test with my hands/arms and that was all and well my hands had make up on them from me messing with my mascara (in fingernails) and from me searching in the car for charger (but I told him basement b4 I left house - didn't want him to think my car was trashy) anyway he was rude and said: " where you digging your hands in the garden dirt before you came"?!!! What a jerk!

Then he would not let me tell him about my history (only a few things) wouldn't let me explain the tumor nor the chiari. He said RUDELY: May I ask WHHHYYY they would even do Chiari Surgery on you? He said that with a disbelieving look shaking his head! He did not think I should have had it!!!! I was like :I had symptoms! (when I should have said because I had Chiari!!!  He dismissed anything else I had to say.

I am telling you all at least in Cleveland they CARE, they care to ask questions and they have been good to me there for the most part. My Cardiologist said the reason I have my condition (with my heart, blood, and bp) is due to the Chiari Malformation! The neuro ignored that. He skipped over everything and went into prescribing me meds. He had a list I was allergic too and he mentioned gabepentin. I told him I had an intolerance to it! He was like okay I will presribe keppra - well guess what I broke out in rashes and my face/throat itched (and my throat a little tickly).  So I called the next day (I am allergic to a lot I usually find out while in hospital, lol) and what does he do??? Prescribed  the medication I told him I was higly intolerant to: GABepentin!!!! How many times do I need to tell him?? He even wrote it down!!! I refuse to go back to him!