Had a bad experience at my primary care physician yesterday ya'll. He pretty much told me to not get ahead of myself about what the MRI shows. On top of that he chuckled when I told him I had done my research about CM and am learning how to recognize my symptoms, and said I did not go to school to do that, so not to get too wrapped up about it. to put the cherry on top, my husband joined the patronizing. Grrr!
I gave up arguing my case, so I asked him what I could do about my week long headache. His dyagnosis: tension headache and sinus preassure, thus I was prescribed saline solution and nasonex!
Yeah, got to love them doctors..smh I think alot of us can emphazize with this including myself.. You want a doctor that is going to be supportive and understanding of your condition and not think it's all in your head. I remember when it happened to me I cried because it really hurt that he would think I would sink so low to make it up. I felt like everyone in the office was against me. Who do you know want to have this condition with all of these symptoms? I'll answer it..no one. Don't let it bother you and don't get discouraged just find you a Dr. that is going to take you seriously and pray for that Dr. because that is what I have done and I finally have a Dr. that is better than the rest. Keep us posted and I hoped this helped :-))
Thank you kmgtm!. I have been crying. gotta let it all out because if I dont, the preassure and headache get worse. I am going to do more research on my PCP options. At this point my PCP is a Dr. at our local military base (husband is a retired Marine). At this time, I don't want to go back to him anymore. I have lost trust in him. When he said all those things, the first thought in my mind was some of the posts on this site regarding dr. reactions and behavior. I thought, "oh my gosh, they weren't kidding!"
Thank you so much for your imput :)
kmgtm said:
Yeah, got to love them doctors..smh I think alot of us can emphazize with this including myself.. You want a doctor that is going to be supportive and understanding of your condition and not think it's all in your head. I remember when it happened to me I cried because it really hurt that he would think I would sink so low to make it up. I felt like everyone in the office was against me. Who do you know want to have this condition with all of these symptoms? I'll answer it..no one. Don't let it bother you and don't get discouraged just find you a Dr. that is going to take you seriously and pray for that Dr. because that is what I have done and I finally have a Dr. that is better than the rest. Keep us posted and I hoped this helped :-))
Thank you kmgtm!. I have been crying. gotta let it all out because if I dont, the preassure and headache get worse. I am going to do more research on my PCP options. At this point my PCP is a Dr. at our local military base (husband is a retired Marine). At this time, I don't want to go back to him anymore. I have lost trust in him. When he said all those things, the first thought in my mind was some of the posts on this site regarding dr. reactions and behavior. I thought, "oh my gosh, they weren't kidding!"
Thank you so much for your imput :)
kmgtm said:
Yeah, got to love them doctors..smh I think alot of us can emphazize with this including myself.. You want a doctor that is going to be supportive and understanding of your condition and not think it's all in your head. I remember when it happened to me I cried because it really hurt that he would think I would sink so low to make it up. I felt like everyone in the office was against me. Who do you know want to have this condition with all of these symptoms? I'll answer it..no one. Don't let it bother you and don't get discouraged just find you a Dr. that is going to take you seriously and pray for that Dr. because that is what I have done and I finally have a Dr. that is better than the rest. Keep us posted and I hoped this helped :-))
God love you,I too had that attitiude from my doctor,infact he said he had never heard of chiari malformation and that I had invented a new illness up all by myself!!! felt so degraded.Totally sympathis with you,keep ya chin up,all us chiarians are on your side and will support u through it,Denise xx
kmgtm said:
You are most welcome! Anytime :-)
karategirl said:
Thank you kmgtm!. I have been crying. gotta let it all out because if I dont, the preassure and headache get worse. I am going to do more research on my PCP options. At this point my PCP is a Dr. at our local military base (husband is a retired Marine). At this time, I don't want to go back to him anymore. I have lost trust in him. When he said all those things, the first thought in my mind was some of the posts on this site regarding dr. reactions and behavior. I thought, "oh my gosh, they weren't kidding!"
Thank you so much for your imput :)
kmgtm said:
Yeah, got to love them doctors..smh I think alot of us can emphazize with this including myself.. You want a doctor that is going to be supportive and understanding of your condition and not think it's all in your head. I remember when it happened to me I cried because it really hurt that he would think I would sink so low to make it up. I felt like everyone in the office was against me. Who do you know want to have this condition with all of these symptoms? I'll answer it..no one. Don't let it bother you and don't get discouraged just find you a Dr. that is going to take you seriously and pray for that Dr. because that is what I have done and I finally have a Dr. that is better than the rest. Keep us posted and I hoped this helped :-))
If possible, see a chiari specialist as no PCP (or neurologist for that matter..) is trained properly in this condition. Then you will have a big empowerment w/records and opinion given by a NS expert in chiari. This will trump any PCP or neurologist opinion, now and in your future. PS.. be sure to fire that PCP.
oh my, it sounds like we share doctors!!! my pcp brushed her hand over the lines on the mri report that talked about the 5mm herniation and said don’t worry about this, it doesn’t mean anything. I called her back after looking it up and discovering that it not only meant everything but described every symptom I had been talking to doctors about for the last 5 years and she had the nerve to tell me ‘Oh I did hear about Chiari a little in med school but it wouldn’t be causing those symptoms…you really can’t believe everything you read on the internet’. Its so frustrating when you feel ignored, disregarded, etc…
I had a very similar experience with a neurologist yesterday. He told me my headache was a tension headache because I was worried about the Chiari and syrinx, but that Chiari was only ever an incidental finding and that it and the syrinx could not cause any symptoms unless I pass out when I cough. I thank God for my PCP who is the one who ordered the MRI and got me set up with a neurosurgeon. If it hadn't of been for him the neurologist would have simply gave me a bunch of pills (which he tried to do yesterday) and never gotten to the root of my problem. Even though I knew I was on the road to getting help I was still so mad at the neuro for the way he treated me. He grinned like a cheshire cat the entire time he was talking to me and never once acknowledged any of my symptoms. He only wanted to talk about a headache. UGH! Hang in there. Go see a Chiari specialist and get rid of that lousy PCP.
I havent seen a NS. I have to get my pcp to refer me to one first. Before he agrees to do that, he wants me to go back to the audiologist who ordered the MRI at first to see what he recommends. So I am. We will see what happens after that :/
Emmaline said:
Have you seen a NS? A NS will interpret what the MRI states, I wouldn't even give your PCP another thought. Don't waste the energy. Your husband on the other hand would get a few words from ME. The radiologist said one thing about my Cine MRI, but the neuroradiologist gave my NS a completely different picture. It's all in what the trained eye can see...
Thank you. unfortunatelly I have to wait and see what the audiologist who ordered the MRI to start with suggests when I see him for a follow up. I actually had a different pcp last month, but she was transfered, and I was assigned to a different doc. :/ adria said:
If possible, see a chiari specialist as no PCP (or neurologist for that matter..) is trained properly in this condition. Then you will have a big empowerment w/records and opinion given by a NS expert in chiari. This will trump any PCP or neurologist opinion, now and in your future. PS.. be sure to fire that PCP.
Thank you for sharing your experience. I will look into changing my pcp. I happened to have him at our local military base. you would think those guys would be more open minded. Casandra said:
I had a very similar experience with a neurologist yesterday. He told me my headache was a tension headache because I was worried about the Chiari and syrinx, but that Chiari was only ever an incidental finding and that it and the syrinx could not cause any symptoms unless I pass out when I cough. I thank God for my PCP who is the one who ordered the MRI and got me set up with a neurosurgeon. If it hadn't of been for him the neurologist would have simply gave me a bunch of pills (which he tried to do yesterday) and never gotten to the root of my problem. Even though I knew I was on the road to getting help I was still so mad at the neuro for the way he treated me. He grinned like a cheshire cat the entire time he was talking to me and never once acknowledged any of my symptoms. He only wanted to talk about a headache. UGH! Hang in there. Go see a Chiari specialist and get rid of that lousy PCP.
oh, they might be brother and sister!! grrrr! That's exactly how I felt and still feel. I felt so insulted as well! i know how I am feeling! BUT, I am over it and ready to take action , ha! I just have to read more about what my insurance allows. Thank you for sharing :) knowing that i am not the only one who has had such sucky experience brings comfort, bittersweet, but comfort nontheless.
CariT said:
oh my, it sounds like we share doctors!!! my pcp brushed her hand over the lines on the mri report that talked about the 5mm herniation and said don't worry about this, it doesn't mean anything. I called her back after looking it up and discovering that it not only meant everything but described every symptom I had been talking to doctors about for the last 5 years and she had the nerve to tell me 'Oh I did hear about Chiari a little in med school but it wouldn't be causing those symptoms...you really can't believe everything you read on the internet'. Its so frustrating when you feel ignored, disregarded, etc...
Thank you Denise :) I will be patient with the ignorance of the system! haha! Denise said:
God love you,I too had that attitiude from my doctor,infact he said he had never heard of chiari malformation and that I had invented a new illness up all by myself!!! felt so degraded.Totally sympathis with you,keep ya chin up,all us chiarians are on your side and will support u through it,Denise xx
kmgtm said:
You are most welcome! Anytime :-)
karategirl said:
Thank you kmgtm!. I have been crying. gotta let it all out because if I dont, the preassure and headache get worse. I am going to do more research on my PCP options. At this point my PCP is a Dr. at our local military base (husband is a retired Marine). At this time, I don't want to go back to him anymore. I have lost trust in him. When he said all those things, the first thought in my mind was some of the posts on this site regarding dr. reactions and behavior. I thought, "oh my gosh, they weren't kidding!"
Thank you so much for your imput :)
kmgtm said:
Yeah, got to love them doctors..smh I think alot of us can emphazize with this including myself.. You want a doctor that is going to be supportive and understanding of your condition and not think it's all in your head. I remember when it happened to me I cried because it really hurt that he would think I would sink so low to make it up. I felt like everyone in the office was against me. Who do you know want to have this condition with all of these symptoms? I'll answer it..no one. Don't let it bother you and don't get discouraged just find you a Dr. that is going to take you seriously and pray for that Dr. because that is what I have done and I finally have a Dr. that is better than the rest. Keep us posted and I hoped this helped :-))