I live in St. Louis am seeking a chiari specialist. I have an appt with dr oro but it’s not until may. I’d also like to find a specialist closer if possible. Any patients of dr frim on here? He is only 5 hours a way and seems very knowledgeable and experienced with chiari. Thanks in advance!
Yes Frim screens for CCI in hypermobile patients. I think he is a good choice.
Hey Nykki! I had my surgery @ DePaul Thursday with Dr. Victor G. Williams III. Board certified, CM surgery 's are one of his specialties. He was great from my 1st aapt, my surgery went well & pain is controlled w/2 Norco npo q6 hrs.
He did his fellowship @ UCLA w/Dr. Ullrich Batzdorf MD-that Dr has trained many NS on this procedure on adultsSend me ur email /FB friend request & we can chat tomorrow.Check out his profile on SSM .
Hope to be talking to you soon!
I called dr. Frims office yesterday. It seems he is cutting back on the number of adult patients he sees, yet his office said if I send my stuff, he will review my images and determine if he will take my case. I’ve heard he’s very selective with the cases he accepts. He’s only scheduling one month out which seems too good to be true. A 5 hour drive is much more manageable for treatment/surgery than flying to Colorado. I’m curious how car and plane travel after surgery works? Has anyone done this? How long after surgery did you wait? What about removal of staples/follow up?
Suz! I’m so glad to hear that your surgery went well-great to see you back on the site. Please let me know if you need anything-as we live close! I will also look into Dr. Williams!! I will friend and message you so we can chat!
I just did a search for the neurologist I'm supposed to see on the 24th and I'm not sure I'm happy about it. One site said he was still a student and another said he's only been licensed since 2011. I suppose if he is new he would have more recent knowledge of neurological conditions, but not being new means little to no experience with Chiari. There are no reviews good or bad. I'm going to keep my appointment for now, but I WILL be setting one with another doctor. I found a neurologist that looks really good, Dr. Jaffri. He is taking new patients but nothing open until May. I'm going to set an appointment today and then maybe a cancellation will happen that I can get in sooner. His information notes that he treats for Chiari so whether or not my symptoms are related, I should be in better hands.
Dr. Jaffri looks really good! Isn’t it crazy how long these waits are!!! You never know about the new neuro-he may be more open to new ideas/reading research you suggest.
Dr. Frim did my surgery in October really nice guy and great surgeon. Not a 100 percent symptom free but feeling better. It took me 6 weeks to see him. He only sees consults on Thursday and I waited 4 hrs to see him. He takes his time with every patient. I hope he will see you.
Thanks jen! Did he perform decompression? How long was your hospital stay and how has your recovery been?
Focus on you, Nykki & always go with your gut!
Send me a friend request on FB
Yes he performed my surgery. University of Chicago was awesome! My recovery has been challenging because I’m a mom of 2 kids and went back to work 1 day a week.
Hi guys! So glad I found a recent post on Dr. Frim. I got the same advisement when I called his office yesterday; that he doesn't really accept adult Chiari patients anymore, but his office said if I send in my reports and discs then Dr. Frim will look at them and make a recommendation if any other doctor on staff would be a good choice for me. But, it really sounds like he no longer takes adult patients or maybe only severe and/or rare cases. Not sure, but I got the vibe that they'll do me a favor to look at my records, but that it probably wouldn't prove too fruitful.
Either way, I am sending in my records this week to at least get an opinion. My question for you guys is that I'm in the Chicago area and am looking for a neurosurgeon in the surrounding area or suburbs and I was wondering if during your search for Dr. Frim you came across others that you either liked or disliked.
I was really looking forward to being seen by Dr. Frim as he is really the only Chicago-based doctor I have read good things about so I'm disappointed that he may not take me on and am desperately looking for other recommendations. I know there are a lot of good neurosurgeons in Chicago, but I haven't found too many that really specialize in Chiari despite many doctors' pages claiming they do. It seems when you ask specific questions about surgeries it seems not many have done more than a few.
ANY recommendations (good or bad), reviews, advice will be greatly appreciated.
Dr Frimm is my neurosurgeon he performed my decompression surgery last May and subsequently a second surgery when I had a leak from a Stitch he is very good and he researches in the area of Chiari Malformations his patient base is predominately children but he will work with adult Chiari patients I was successful in getting in to see him by emailing him directly from the site at the University of Chicago
I got my first opinion from another neurosurgeon Dr Solehi whom has an office in Alsip Illinois
My Daughter had Dr. Frim from Childrens Hospital in Chicago do her Chiari surgery back in 2000 - He was excellent and I would highly recommend taking the trip to see him. She was 15 at the time of her surgery.
My daughter sees Dr. Frim (we live in Central IL). She was diagnosed in 2011 (she was 15) and was decompressed in 2013. Dr. Frim is wonderful and continues to see his patients even post decompression surgery. There is always a long wait (generally 4 hours), but well worth every minute you spend there. He takes his time with each of his patients and answers all of your questions and never makes you feel like your questions are not valid. He's truly one of a kind!! I've also heard good things about Dr. Awad (he is also at the University of Chicago) and Dr. Ruge (doctor in Chicago area at Advocate hospital system).
Hope this helps! I know how frustrating it is trying to find a doctor who understands Chiari!!
I just saw Dr Frim and am scheduled for surgery next week. I’ve had a decompression surgery, then csf leak, then revision and Pseudomeningiocele, and then VP shunt placement —> having fever, chills, headaches, nausea. Dr Frim believes I have ongoing chemical meningitis. Plan is proper decompression, autologous dura, and removal of VP shunt.
I’m very nervous after being in the hospital for past 3 months and complications. Also had pulmonary embolisms after being in hospital for 6 weeks.
So I’m just extremely worried now.
I want to connect with Dr Frim’s patients and have some assurance that this time things will fix.
Thank you so much!!!
“…some assurance that this time things will fix.”
I would suggest that rather than looking for a ‘Fix’, you focus on ‘improve’
A ‘fix’ is what we all want but the reality is that the procedure for a ‘fix’ can throw up a whole differing set of issues and this can be a soul destroying issue, especially when we have an high expectation of ‘fix’. Looking for ‘improve’ sets the bar a little lower and can make the ‘differing set of issues’ a little more manageable to cope with. You may well be lucky and get the desired ‘Fix’ but if not that expectation and failure to reach it can be real difficult to manage.
I say this as I went into neurosurgery with the ‘fix’ idea and the initial issue was ‘managed’ more than fixed but what it threw up has been even more of a problem to manage.
Well that’s my advice.
Merl from the Moderator Support Team
Thank you for your response!!
I’m just looking for patients who have had this done with Dr Frim and their experiences.