My father and I are very frustrated with my neurologist. Ever since she found out I had Chiari after all these years with her and she nor anyone of the neurologists who read my MRIs caught it.. she wants nothing to do with me. She thought I was crazy so she's probably embarrassed. But can a regular neurologist order a cine MRI??? She told me she can't and I need a neurosurgeon to write a script for one. Is this true?
I don't think this is true. Due to insurance issues my NS asked my regular family doctor to order my CINE and she did.
Any medical doctor can order one. Sounds like she is passing the buck because she doesn't want to deal with it.
WOW thought so!!!! This was driving me nuts. Thank you both !
I think it is so weird, the disconnect between neurologists and Chiari- so many of them seem to really want to deny it's existence and/or have so little experience with it. It really doesn't take a rocket scientist to catch Chiari on most MRIs. (I'm not saying it is always totally obvious, but if they are looking for abnormalities...)
I'd be glad to move on to another doctor, this is a blessing in disguise. I have just heard so many Chiarians who have had neurologists blow off Chiari, it kills me
Absolutely!!! she just gave me meds for years saying itll get better.. she is a PA but other neurologists in that building looked over all my MRIs from the past 3 years and found nothing. I was in numerous car accidents so when I got the mris my mom specifically asked if I had chiari since she had it... they all said no ! So it took a radiologist at DRA to diagnose me with it when I never in a million years thought I would have that. Well now one PA is lying to me and the other MD is telling me to work on my posture and wear a neckbrace when I sleep, then ill be fine. So ive decided to take it upon myself to go to a family doctor who will give me a script for a cine to see if there is blockage! Ill keep switiching doctors if I have to because these ones arent very bright lol
I am going to suggest finding a neurosurgeon who specializes in chiari, then he or she can order the cine or the mri they prefer, and do their own diagnosing. Whether or not you would consider surgery, I think the neuro surgeon who specialzes is best professional to consult with.
Yes I agree. SO hard to find one around here though. I figured I would get the cine MRI done to see if there is blockage before I tell my doctors I need to see a neurosurgeon. Since my regular MRI only showed 9mm herniation, they were all ready to send me off. Hoping to basically have proof so they believe me more about how bad my symptoms are. Do you need to have blockage of CSF flow to have a neurosurgeon consider surgery?
They all are so dumb! Can't believe that the PA who has been treating me for 4 concussions lied to me about ordering a MRI. Oh my gosh , 2? So sorry. Im definitely going to get all my info together before going to one. My moms surgeon is over at Yale Hospital in New Haven CT, so I will probably go there if needed. Did you have blockage, is that why they ordered the surgery? Or because of symptoms? So confused as to what it takes to get some real medical attention from doctors.
Wow yeah I didn't think it was! My moms herniation was 23mm and was rushed into her surgery in 08. I guess now she has to get another one as soon as she decides to. How did they see you were blocked? Can a regular MRI show anything besides the herniation?
My surgeon gave me the option of surgery because of my symptoms and because of my 7mm herniation. I didn't get a CINE MRI, but like Beeba's situation he did find blockage during surgery.
I don't regret the surgery, I had 3 years headache free and other symptoms gone too. I had much more energy, etc. I am hoping my current issues are due to herniated discs (I've known about since before the decompression).
I would do it again, if I could get the same results. I'd rather do that than take medications for years, but that is just my personal preference.
Yeah she is but also said my NEUROLOGIST who I saw a few times cannot order one either. Both were a lie, I called both offices and asked.
Thank you Wendy and Beeba! That actually helped a lot! It would be amazing to get off all these pills, absolutely talking to my neurologist after getting these results , about moving this along with a neurosurgeon. No more playing games with my head! Lol
Unfortunately you may need to consider one who is out of state, concentrating on docs who truly understand that chiari IS NOT ABOUT SIZE!!! Good luck!
I agree that it isn't all about size. I had an 11 mm herniation and Dr. Ellenbogan wasn't convinced that I needed the surgery based on the size alone. He is a very conservative doctor and knows that the surgery doesn't always help. I did opt for the surgery, which was a good thing because Dr. E said that the herniation was worse than it looked on the MRI and that it was 'impacted'. It turns out that it was crowding my sinuses, resulting in a lot of sinus infections. Chronic sinus infections can affect your immune system. Ironically, it was concerns about my immune system that initially started me down the road of finding out what was wrong with my health.
It is also VERY important to go to a neurosurgeon that has a lot of experience with chiari surgeries. This is because things can look different once they cut you open and the doctor needs to think on his/her feet and sometimes adjust the game plan.
Thank you jcdemar ! Kelly- wow that really got me thinking. I have sinus infections all the time it’s ridiculous. I have one right now! I was just told i have lupus now. Thank you for sharing that. I totally agree size doesn’t matter as well. I’m just worried that if they decided to do surgery and after opening me up realize that I didn’t need it. More of a fear actually because I don’t want a neurosurgeon thinking I wasted his time or actually wasting mine or my familys time. Idk if that makes sense? I’m in serious pain everyday and I haven’t lived normally in 3 years… barely leave the house. Just don’t want them opening me up for nothing I guess lol
I am glad that this info helped! I also want to let you know that it is very important to keep hydrated. One of my daughter's classmates also had chiari and had the surgery when she was in kindergarten. The next year (2009/2010) the teacher noticed a correlation between drinking enough water and how Ashley was doing. To this day, Ashley's mom swears that drinking enough water can make the difference between a good day and a bad day. I know that when I have too much salt or am dehydrated from my meds and don't have enough water that my headaches are worse.
Pay attention to what you eat and keep a journal of good days and bad days and see what makes a difference. Last week was a good one for me, even considering that I work full time and had after hour events everyday except Monday (I try not to have things scheduled after work so that I can rest and not over do it). I have been on the medifast program and found that I tend to feel better when eating 'on program'. Last weekend I tried an experiment and ate a lot of wheat/flour based foods and I had the 'swishy' pressure type headaches that are very noticeable when I lay down. I have been thinking that inflamation could be contributing to my headaches. Today, I looked up info on Dr. Weil's Anti-inflammatory Diet and sure enough, overly processed foods, including flour, can contribute to the inflammation process. I believe this has a negative impact on those of us who suffer from Chiari and other chronic pain issues. Anyway this is just some 'food' for thought!!
Aw poor girl :( Ohhh yes, my mom said the same thing! lol Every time i have a migraine she tells me to drink drink drink. Because of all the meds I'm on I have to drink A LOT. I'm going to take your advice about the food journal. I already keep one for my symptoms so adding food to it would be a good idea! I have an awful diet because these headaches make me so sick to my stomach that I would have to force food down my throat. I had a lot of stomach issues in the past year. Went from 173 to 137 pounds in 4 months without doing much and ate 3 times a day. Very strange. I have so many random symtoms that Im starting to think all come from chiari now. I'm hoping I can find a chiari specialist to explain everything to me that ive been going through because its so overwhelming ! Every other doctor just sends me out the door with a pill :/
I have Regence and my Neurologist absolutely refused to order a CINE MRI. I went to my PCP told him the same reasoning I had told my Neurologist and he ordered it, I go in on Monday. I would check with your insurance and see? I may be wrong but it seems like you don't need referrals from your PCP as much anymore? The best thing you can do is find a place that does the CINE MRI and ask for the CPT codes and dx or ICD-9 codes. That way when you call your insurance they can tell you exactly how much it would be and if it would be covered.
CPT code is going to be for CINE MRI
ICD-9 will be why they are ordering the CINE MRI
I wouldn't think you would have any problems with who orders it as long as it makes sense. I had to have a pacemaker removed to have MRI's done and my Urologist couldn't order them because she doesn't deal with the back, neck, and head. Hope this all makes sense. Let me know if I can be of any more help or if I'm just driving you crazy! :)
Good luck!
Sarah
I ended up going to my regular doctors and told them how I was feeling.. she right away ordered an mri with and without contrast for the brain! She was confused why they didn't do that at the other office already. So when that comes back if it shows what I need or not she said she will order a CINE :) Life safer haha. The insurance takes a few days to approve so hopefully by monday ill be able to get the ball moving. Cant take this pain much longer specially after last night being rushed to the e.r! Thanks again :)