Aa
Aa
A
A
A
Close
Avatar universal

Dr. Heiss at NIH?

Any comments good or bad would be appreciated. THANKS!
18 Responses
Sort by: Helpful Oldest Newest
620923 tn?1452915648
COMMUNITY LEADER

  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?
Helpful - 0
Avatar universal
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?
Helpful - 0
Avatar universal
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!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  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.
Helpful - 0
Avatar universal
Hope so lol
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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?
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
Yikes, doesn't sound like fun! Hope you are doing better. Did they use a synthetic patch?
Helpful - 0
Avatar universal
I don't think he did. The medical records doesn't say either way.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
Do you have EDS or other compacting factors?
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
Thanks for the reply. I'm scheduled for my first appt with him 6/20.
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease