Chiari Online Support Group

Hi from the Lehigh Valley Pa


#1

Hi everyone my name is Kathy I was dx in 2015 and have yet to find a dr who knows about Chiari the NS I see is only for my headaches. I have 3 grown children ages 30, 27 and 26 and 6 beautiful grandchild.


#2

Hi, I am new to this board so hopefully your post is recent. Not sure if you can get to Pittsburgh or not but that is where I am and UPMC has some great doctors that deal with Chiari. Granted, I have only been to a neurosurgeon once so far but I liked him and did research him ahead of time, if it came to surgery (hopefully it won’t) I would feel confident in his surgical skills. He has been published a number of times, he also had a nice bedside manner.

Good luck!


#3

Could you send me his name and number if they take my insurance it would be worth my time to travel there, my husband said he’d take a day or two off of work to take me. Thank you for your help.


#4

Hi, so I have changed my mind about this doctor. I had a spinal CT about 2 weeks ago, he posted the results to my insurance patient portal but has yet to call me back to talk to me about those results. I have called twice and both times left a message and I have yet to hear back from him. If I am reading the results correctly, I am not a candidate for surgery which is what makes me think he is not calling me back. I think he is only interested in the case if it involves surgery. I will still give you his name and number though. There are other doctors in the practice as well. You should go to UPMC website and search for neurosurgeons. The doctor that I saw was Paul Gardner and I only went to him because that is who my PCP suggested. Fair warning, no matter who you make an appointment with, make sure you have the whole day free because you will be waiting for a VERY long time. I spent a good 2 1/2 hours waiting all for a total of 10 minutes spent with the resident and then maybe 10 minutes with the doctor. If you read the reviews on any of these doctors that is the biggest complaint. Like I said, this doc is very knowledgeable and his bedside manner was decent enough but I am not sure I would use him again partly because he can’t seem to be bothered to call me back to talk about my test results. In any case, again his name is Dr Paul Gardner, he is at Presbyterian Hospital in Oakland. His phone is 412-■■■■. If you can’t get an appointment any time soon, try Dr. Friedlander, same building but different practice. I have seen commercials for him on TV and he was talking specifically about Chiari. 412-■■■■. There are plenty of hotels in the area if you decide to take more than one day. Also, fair warning, both self parking and valet parking are expensive. If you do wind up coming into town, please let me know. If you have time it would be nice to meet, I have yet to meet anyone else with Chiari. Let me know if you have any other questions, Pittsburgh is a very nice place, hopefully you can work something out!


#5

Hi the phone number didn’t come thru only the area code. I too would be glad to meet someone with Chiari. My email is ■■■■ I’d like to stay in touch and if your ever close to the Leigh valley area let me know.


#6

Hi! We live in central PA near Lock Haven (between State College and Williamsport). My son receives careat Geisinger in Danville near Bloomsburg. His neurosurgeons, Dr. Griessenhauer and Dr. Goran have been pretty good. I’ve also heard great things about Dr. Sekula at UPMC in Pittsburgh.
My son goes for another MRI this week and then will probably be facing decompression surgery in the next couple of weeks.