First of all, thanks to everyone who commented under my profile (I believe it is the moderators out here) and for the warm welcome. I'll try to get back to you all soon.
I am new here and I am from Gilbert, AZ. I am very new to Chiari (though not to the symptoms) and am getting my MRI images currently reviewed by my Neurologist and I have been in contact with a Chiari patient as well. Since she is familiar with Chiari (her sister also has it), she looked at my MRI's and said there is definitely something there. I have every imaginable symptom, especially the constant, severe back of head (base of skull, brainstem) pain and constant eye pain (both eyes, left eye more severe). I also have TMJ (dislocated left jaw) which causes even more pain and P.O.T.S. (tachycardia and bradycardia). I was completely healthy before age 13, played basketball, and was a straight-A student. I am now 27.
My biggest concern right now is getting the right Neurosurgeon. I only know to go out on HealthGrades, etc to look up doctor's ratings but here I know it isn't good enough. I'd like to know of a surgeon's success rate and how many operations he's performed. Plus, I am wondering if it is going to be necessary to travel out-of-state since Chiari is so rare.
So my 3 quick questions are: 1) How do I find a surgeon's success rate for surgeries? 2) Is Chiari usually covered by insurance? 3) Is there a list of treatment options (I am certain it is only surgery, as I read)?
If you wanted to weigh in on my MRI's, here they are :) I realize that medical diagnoses is 'forbidden' on the internet, but from others that have seen Chiari MRI's, I'd appreciate some opinions. Again, my Neuro is getting back to me soon (I am hoping in the next 2 days realistically). Here they are:
Answer #2 depends on the insurance and how the doctor writes it up. For example my insurance does not cover chiari per say, but my NS(Neourosurgeon) bill it as a sub-occipital craniomecty, C1 laminectomy and a titanium duraplasty. They covered it that way. The best answer I can give you is the first number on the back of your cars is usually customer service call them.
Question #3The are many ways to help alleviate the symptoms and surgery is a treatment option to slow / stop the progression. If medications can make it more comfortable, then you may not need surgery, then again you may. surgery is a highly personal decision made between you and your neurosurgeon. I recommend finding a good quality NS and sometimes you may need more than 1 opinion NS and you may need to travel.
I will refer you to the research tab above there is a wealth of information there about doctors, ways to alleviate symptoms etc. One thing to keep in mind though is that what works for some may not work for you.
Welcome to the site as well. You will find may helpful and friendly people here. We want to help you with your journey with Chiari.
Best of luck and if you need anything please do not hesitate to ask me or anyone else.
Mike
PS Sorry I did not look at the upload images, I will look at them later.
Hello and welcome! This is a great group of people. They have helped myself out in sooo many ways. My NS Said 40/60 in the beginning. With me 2xs it wasnt bad enough. When my speach was affected is when she decided it was time. Goog luck on your journy. Dont forget to use the welcome user guied.God bless you in your journey.
Like you said, we can't diagnose you, but I will say your mri's do look like chiari. I can't tell you how bad or any of that. Have you got the radioligist reports? You can get them from the hospital if you don't want to wait for the NS or NL to call you about it.
Thank you everyone for the replies and answers. I really appreciate it.
I feel completely out of it at the moment and incredibly dizzy, not to mention the pain (I feel like I am going to pass out). I spoke with my Neurologist's office and they informed me that they didn't find anything abnormal with my MRI's, as in no Chiari. I looked up my current Neruologist on the internet (his website) and he claims he is familiar with Chiari, but on his website not once is it mentioned. So I think I should get a second opinion (yet another doctor...).
Also, I have heard 2 separate Chairi patients tell me that my MRI reminds them of Chiari.
Thank you for the information again. If anyone else can weigh in about my MRI (images in original post), I'd appreciate it also.
I’ve known of ppl with all the symptoms of chiari but the imamri didn’t show it! Doctors miss things too! If you send your films to that dr Oro he will review your films! Good luck and welcome although I pray you DON’T have chiari it’s not a fun journey!
I just looked at your films… I’m not a NS but I’ve looked at millions of my MRI films compared to normal brains and that does look like chiari! Did the radiologist not note it in the report?
Thanks for the reply Deena. No, the radiologist did not mention it in the report and I have had 2 brain MRI's. Is this such a rare ailment that it is commonly missed by Radiologists or something?
I hope I don't have Chiari either - I just can't shake the fact that I have autonomic problems and Postural Orthostatic Tachycardia with every other imaginable symptom, especially the constant head and back of the neck/head pain (eye pain too).
Do you know if NS or Neuros familiar with Chiari would look at my MRI without an appointment? Just getting into an appointment seems to take a month. I'm on year 14 with this constant severe pain and a month is such a long time anymore...