Well my family dr called back today with the mri results and apparently they came back normal. I don’t know how that’s possible with the amount of pain I’m in and my last mri showed a 1mm hernation and now I’m normal!? Upset aand confused right now don’t know what dirrection I’m suppose to go right now. I was hoping somethiing would come back
Hi Vanessa,
I feel your frustration. Your family doctor is probably going on the report that is initially reading the MRI. Have you seen a neurosurgeon? I think I would make an appt with a neurosurgeon and have them look at your MRI pictures. They are much better at detecting whether you herniation may be causing your problems. Most doctors will not do any treatment on a herniation smaller than 3mm, even though the size of the herniation doesn't really matter. If you are having pain, it is coming from somewhere right? Good luck.
Carla
I agree with the above. Maybe send copies of your MRIs to a chiari specialist?
I haven’t seen a neuro yet because I was hoping that something was going to come back on this mri and that I would have got my family dr to refer me. Now I just don’t know what to do its not like I can just call up a neuro and ask them to see me. Maybe thinking going to the er on my next bad day. My pain is getting worse the meds she has me on don’t work and I’m sick of not having a life anymore. I have kids I need to keep up with and a house hold to run. I just want some answers!
Some of the chiari centers will take self-referals. I sent my MRIs to the Mayfield Chiari Center for a priority consult because there was no one in my rural area who was remotely helpful!
I’m not sure how that would work in canada. And I haven’t even been able to get a dx yet. I see my family dr on the 28th so I’ll see what she has to say then. I’m not giving up on this. I can’t I’m in too much pain lately to just forget about it.
There are some doc's that will look at your MRI and give you advice. Dr. Oro $75 fee and Dr. Frim no fee. Dr. Heffez, no fee.
Vanessa,I have been to many Dr.s over many years and no one has been able to help me.I've finally found Dr. Rosner in N.C. who is a pioneer of chiari. You have to stay after the medical community and keep advocating for yourself you're on the right track.It's so hard when we get a different oppion from every doc we see. Good luck hope you will find the right answers.
I certianly understand what you are saying here... Its seems I was going thru life ok then one day i woke up and was never the same. Sure old age hits us, but certianly not like this... I am a nurse and deal with patients every day. I pray that anyone i deal with never feels like they are a numbered patient with a generic diagnosis. When i talked with the neurologist the other day the first thing he says to me is, yes you have a chiari malformation but it isnt causing your symptoms. How does he know? grrrr Prayers for you dear.
Vanessa83 said:
I haven't seen a neuro yet because I was hoping that something was going to come back on this mri and that I would have got my family dr to refer me. Now I just don't know what to do its not like I can just call up a neuro and ask them to see me. Maybe thinking going to the er on my next bad day. My pain is getting worse the meds she has me on don't work and I'm sick of not having a life anymore. I have kids I need to keep up with and a house hold to run. I just want some answers!
I share your frustration. I was diagnosed by a neurologist and after the cine MRI came back he said the chiari was not the cause of my symptoms. I have one more test that the neurologist has ordered and once it's done I am requesting copies of all the MRI's and other test, the reports that go with them and copies of my medical records from both my GP and Neurologist be sent to a neuro surgeon who has agreed to review my records. Based on his findings he will decide it he will see me or not. It is at least a step forward instead of back. You have to advocate for yourself because your doctors are not going to do it for you. If your insurance requires a referral then ask for it.( PPO's often don't require a referral as long as the doctor you are seeing is on your insurance company preferred provider listing.) If the doctor says no tell him you want a second opinion. May that second doctor will give you the referral you need. If you don't need the referral, do your homework and start calling neuro surgeons to see if one will agree to at least review your records. I wish you the best of luck.