Hi in '08 I went to a Chiari conference hosted by Dr Heiss, he is well regarded in the Chiari community,....I have not had ne further contact with him, but he was a well informed speaker and I feel is a true Chiari specialist.....
Are u considering participating in the clinical trials he does?
I have been accepted into the study. I will not know until I meet him if I will participate or not. What are your thoughts oh great one?
I saw his "mentor" at UVA and wasn't that happy with the visit. I am so tired of doctor shopping. I just want to find someone I trust!
Well until u meet him...I can not say much more as it is important that u r comfortable with him.....
I know he sat on the board of a non profit Chiari Org.....and he is well respected in the Chiari community....beyond that ....I do not know.....not sure I would select him for my surgeon as I have not had a consult....
We do have other members that have been to him,,.,,I am sure u will get other replies.
I am part of the clinical trials and I like the guy but the staff need some work on. I got to admit though I had better care than I would have if I stayed here.
Thanks for the reply. Did he do your surgery? Your the second person that said that about the staff! If he did you surgery, what did you have done? What type of patch did he use, if any? Did you have any complications? Would you have him do your surgery again if u had a choice?
Yep last July he did my surgery. Dury plasty version of decompression. I had a lot of complications included swollen tougue double pneumonia c diff unexplained fevers anemia kidney failure, but I'm sure I would have had that whether he did my surgery or someone here did only difference was I would have been in and out of the er over here.
And yes I would have surgery with him again even with the lousy staff but I'd make sure they knew exactly what else is wrong with me before they do the surgery.
Yikes, doesn't sound like fun! Hope you are doing better. Did they use a synthetic patch?
I don't think he did. The medical records doesn't say either way.
Oh and I haven't really fully recovered. I'm shoving some improvement in the fact that I haven't had a real fall since the surgery but I've had severe neck aches and I haven't really gotten my mobility back.
Do you have EDS or other compacting factors?
I believe I do but Heiss doesn't and he's method of testing did bother me because he only used one possible double joint way rather than the others. I do have kienbock's disease as well which is usual for Chiari patients it seems.
Hmmm, I have never heard of that. I'm scheduling appts with outside rheumatologist a and geneticists to r/o other conditions but I'm not sure how long that will take versus how soon I will need surgery. If u don't mind me asking, what lead to all the complications? Kleinbocks is a wrist condition right? Kidney failure seems pretty serious. Your complications are kinda freaking me out lol
Kienbock's was the diagnosis before I had the surgery. Yes it is a hand condition that I was born with. They think the kidney failure, which wasn't that bad because I wasn't put on dialysis because it was just high creatine, was caused by the ct contrast or the antibiotics for the pneumonia. If you get the same kidney failure just walk more and the kidneys will go back to normal.
I had my second surgery done in Jan 2012 by Dr Heiss. He had to open my dura again to seperate the tissue where my previous dural patch had adhered to my cerebellar tonsils. I had zero complications and I really like him. He doesn't have much of a bedside manner and kind of a dry sense of humor but is very knowledgable about chiari and seems to have done a good job on my surgery since I didn't have any complications.
Thanks for the reply. I'm scheduled for my first appt with him 6/20.