I finally received the approved authorization from my insurance to go see Dr. Frim in Chicago! Although I am happy while I'm waiting to hear from Chicago for an appointment, I'm also nervous because my insurance only gave me 2 weeks to see him! I'm also scared because this has become this much more real! Now I am wondering, what do I need or what should I take on my trip to Chicago? Besides the MRI disks and list of medication I'm not sure what else I might need. If anyone has any input I would appreciate it, also I'm wondering has anyone experienced some symptoms not on the usual list of symptoms? The last neurosurgeon I saw ruled out surgery for 2 reasons, 1.there was still some fluid getting through and 2.one of the symptoms didn't fit with chiari (1 time my speech slurred when my face went numb)! Now I'm scared to tell this specialist about that and about my newest thing going on which is my eye twitching and when I pucker my lips or pronounce certain letters (like o) my eye goes wonky kind of like it wants to close on me or something!
You could have related cervical instability as well or retroflexed odontoid. Is this specialist in Chicago atrue chiari expert because I’ve never heard of him as there are few in this country. A true Chiari expert knows all the disorders that could accompany Chiari and cause further symptoms.
I'm happy that you get to see Dr. Frim. I've heard that he is a very knowledgeable doctor. Whether your symptoms are on the normal Chiari or Syrinx list, go ahead and write the symptoms down. When I was first diagnosed with Chiari, I had a lot of trouble with my voice & it was not listed on a lot of the Chiari symptom lists. Now, when you pull up the major sites about Chiari, voice/talking problems are listed towards the top of the symptoms list.
I've not had my face go numb, but I have had my speech slur. I even had an MRI to make sure I didn't have a stroke. It's a normal Chiari symptom. I also had my B levels checked. When you make your prescription list out, list all vitamins and supplements you are taking also.
The reason you need to tell Dr. Frim's office all of your symptoms, is that he or they may know what is the cause of you 'non normal' Chiari symptoms.
Good luck. Please keep us posted about your visit.
So glad you are seeing Dr. Frim. He is wonderful. My daughter had her decompression surgery last May. He is one of the top Chiari Specialists!
If for some reason you can not get in to see Dr. Frim quickly enough, Dr. Lorenzo Munez out of Rush Unicersity in Chicago is amazing as well. He just did my surgery 2 weeks ago and I can’t say enough good things about him and his staff. For such a big surgery it truly was a good experience. The recovery still sucks 
but he is also an expert who has some over 100 of these surgeries. He said out of every 10 Chiari patients he recommends 3 for surgery. Please feel free to email me if you have any questions.
So nice to see so many people trust their care to Dr. Frim. I just got my approval to see him for the first time as well! Definitely keep track of your symptoms and don’t be afraid to tell him all of them. Keep a log of how often everything happens. Good luck!
Wow, congrats on getting approved to see someone else! I am actually experiencing some unusual problems myself and i am going to be calling my Neurologist first thing in the morning. Never be afraid to ask questions! That is one thing i was told to never worry about. My family doctor has always been patient when i ask questions. they say its better to ask then to let it go and have it get worse. When it comes to your health, no question is dumb. :-) i am actually going to print out that list Abby wrote to take to my doctor i want to see....if i can get an appointment with him this summer. I just hope you get in to see this one before your insurance cuts the time off. Good luck and keep us posted! and remember.... Don't be afraid to ask ANYTHING!!! It's your health and thats what's most important (other than family of course :-) )
Actually I hadn't heard of him either until I joined this site! He is very much recommended here by other chiarians and on another website based on chiari. I'm unsure if he's one of the few your talking about, If you have anyone you would recommend I would love that because I'm new to this community! :-)
Christin said:
You could have related cervical instability as well or retroflexed odontoid. Is this specialist in Chicago atrue chiari expert because I've never heard of him as there are few in this country. A true Chiari expert knows all the disorders that could accompany Chiari and cause further symptoms.
My daughter saw Dr. Frim and we loved him. We traveled from Colorado because he was so highly recommended. Tell him everything he will give his honest opinion. Very easy to talk to and really spent a lot of time with us and listened.
Take a list of questions with you and don't be afraid to ask any questions.