Dr. Di - If you have seen him please read

[DAWGS]

I am set to see Dr. Di on July 14 and I wanted to know everyone who has seen him. I have a chiari of 5 mm - tons of symptoms but the first chiari expert I saw (Dr. Ellenbogen) says I am not surgical at the moment. But I feel like something is not right, hasn't been right for over a decade and things are just getting worse.

Nevertheless the decompression surgery seems quite invasive but I heard Dr. Di does a less invasive PFD...Wanted to know if anybody has seen him and if you have what you thought of him...Also how are you doing post-surgery? Do you think the less invasive decompression helped resolve some of your symptoms?

Also those of you who had surgery what was the size of your herniation? Just wondering at 5 mm if he is more or less likely to perform surgery...Thanks to everyone for all your insight and help - I have learned more about chiari on this forum than in months searching google - you all are amazing and I pray for you daily!

Thanks

[laratterman]

I am Dr. Di's patient and had my decompression in April.  What do you want to know?

Unlike the person above, I felt anything but rushed.  We spent a great deal of time with his nurse, who asked a lot of questions, entered info into the computer, and did the initial neurological exam.  When Dr. Di came in, he had just gone back over my MRIs (I had already had a CINE MRI only two months earlier) and he spent an hour or more with us.  He answered my questions, as well as my boyfriend's questions.  He asked several times if there was anything further before he got up to leave.  I was TOTALLY impressed... with his thoroughness, his compassion, he knowledge and understanding of what we, as patients go through, and his explanation of the physiology of Chiari and the surgical process, which he did recommend to me at that time.

I have some other things going on besides Chiari... and some of the symptoms could come from both, so my case is different from most.  As one of my other conditions is also considered rare.  It is a fatty tumor disorder known as Dercum's Disease, or Adipose Dolorosa, and the symptoms include:  "...Overwhelming fatigue, joint aches, disfigurement, muscle pain and stiffness, muscle weakness, skeletal pain, neuropathy, headache, arrhythmia, easy bruising, heartburn, constipation, bloating after meals, shortness of breath, depression, sleep disturbances and anxiety. ‘Brain fog’ is another symptom. Difficulty concentrating, difficulty expressing thoughts, impaired memory specifically short- term memory loss, long term memory loss, and confusion are examples of the various types of brain fog known to occur. While these symptoms may or may not be present in all, one thing is sure: Dercum’s disease is a progressive, painful and debilitating syndrome that affects all bodily systems."

Right now, Dr. Di is doing some things to try and diagnose or rule out pseudotumor cerbri/intracranial hypertension.  I will report the trial of the meds when I see him next and see what he thinks we should do next.

I hope this is of some help to you!

Blessings!

Lori

[Joyneau123]

Thank you Lori! I too have Dercum’s! Thank you so much for validating my symptoms! If you feel up to it, please write. ***@****   Perhaps we can share a bit more because I also have Chiari. God bless.

[laratterman]

Before I forget again, there is a "Dr. Xiao Di Fan Club" on Facebook and you can talk to a lot of Dr. Di's patients... all who love this man!

As I stated above, I have two pretty severe things going on.  I'm not sure I'm the best person to ask.  Also, it has only been 10 weeks since my surgery... I'm still healing.  I also have a pressure issue (that decompression will a lot of times alleviate).  

As for symptoms, I have only had a handful of Chiari headaches.  The burning and tingling pain down my neck, upper back, shoulder and down my left arm and into my hand isn't as severe as it was... but it is not 100% gone either.  

A big question now for me is, how many of my symptoms are from Chiari and how many of them are from Dercum's.  There are so many cross-overs.  And for Dercum's, there is no treatment or cure... only special diets and meds.  Like anything, the same things don't work for everyone. And I have only found one other person who has both Chiari and Dercum's.  I doubt we are all, but she's the only other I've come upon.

Please don't use my circumstances to make decisions.  I would really encourage you to go to facebook and talk to 141 patients or family members who have had this experience.  They are a wealth of information too!

Blessings to you!

Lori

[DAWGS]

Lori

Did you notice an improvement of symptoms after the surgery? what symptoms got getter?

thanks

[sco2004]

I've not seen him (though I maysoon)  but have heard good things!  laratterman is recovering from a decompression that I believe he's done.  Let us know what you think of him as well!

[selmaS]

I am not familiar with how he does things, but my drs redid ne MRI that was more than 6 months old....so I imagine that he will...or should I say I would expect him too.

I strongly believe u must tell the drs all symptoms regardless how long since u experienced them as I am sure it fits in somehow.

Good luck with the visit

"selma"

[DechenDolkar]

I seen Dr. Di a couple of months ago and he seemed nice but I felt very rushed at my appointment. I think he was just very busy that day. Just be sure you have all of your questions written down so you don't forget anything. He told me mine is progressing and is at 6mm and he wants to see me in 6 months to repeat the MRI with CINE flow. I was kind of frustrated that he didn't do the CINE then and I'm not sure why he didn't. Best of luck to you!

[DAWGS]

I hope they will give me another CINE MRI...Unfortunately with all my neuro symptoms for over a decade they seem apprehensive to offer me MRI's as quickly as they used too...I hope they do! Thanks for all your help

[selmaS]

The issue is no longer that CINE, but what  a CINE will show today...chiari can progress in a short time, ne MRI over 6 months should not be used and a new one done,...especially when u r seeing new symptoms.

LOL...oh I wish a chiari pill would do the trick too....how lovely a thought.... : )

"selma"

[DAWGS]

Thanks Selma...I have a CINE MRI done in Oct of 09 and it said very little blockage - not enough to require surgery (at least in Dr. Ellenbogen's opinion)...we'll guess what? I still have symptoms so explain Doc LOL...

Please somebody create a chiari pill for this all just to go away :)