I was diagnosed with “Borderline” Chiari’s in 2001 my MRI showed a 5mm herniation at that time. The only symptoms I really had then were chronic migraines. Recently I have lost the hearing in my right ear, my arms, legs, hands, feet, face and tongue go numb all of the time. I have not fallen but feel very weak at times and have to use railings or other objects to get myself around, I am always dizzy, and my whole body feels like it is shaking all the time (like you feel when your blood sugar is low). So I know obviously something has gotten worse but I went in for an MRI monday and received an email from my PCP office yesterday that said “MRI normal have a great weekend”. How can my MRI show Chiari’s in one MRI and be normal in another when Im having all these symptoms???
Thank you for responding. I am getting a copy of the MRI and the report today so I can see exactly what it says. I will definitely be following up with someone and getting a 2nd opinion I just have to find someone. I can’t seem to get any good recommendations for anyone in kansas and I want to go to someone that knows what they are talking about for once.
Emmaline said:
Happens all the time. I would be curious as to who read the MRI. And as for the “borderline” Chiari, I would doubt that as well. Some doctors use the 5mm rule to measure Chiari as a starting point. I don’t buy that either. Chiari is Chiari and size doesn’t really matter. Symptoms do. Yours have increased.
I would get a second opinion with a NS with your latest MRI and see what the NS has to say about it. Radiologists miss it all the time unfortunately…
I am attaching one of my MRI pictures. I didn't think any of them were very good. This is what the report said: "The cerebellar tonsils project approximately 3-4 mm below the level of the foramen magnum. This is considered to be within normal limits for an adult. There is no definite MRI evidence of a Chiari malformation. No area of significant abnormal signal intensity is seen involving the brain parenchyma. There is no MRI evidence of acute ischemia/infarction. No extra-axial fluid collection is seen. No abnormal area of contrast enhancement is noted." Any words of wisdom from anyone?
487-MRI.jpg (32.1 KB)
I just posted a discussion about herniation size doesn't matter. You can still have severe symptoms. Did your Dr's do a cervical spine MRI? You are having some serious symptoms. When kind of Dr. ordered your MRI & did a regular Radiologist read it?
Sorry for so many questions. It just helps us help you.I did just look at your MRI. Did you know that +or- 3 mm. is the accepted norm in MRI measurements. You can still have horrible symptoms with a 3-4 mm Chiari Malformation. Have you seen a Neurosurgeon? If so you need a second opinion.
http://suite101.com/article/arnold-chiari-malformation-does-size-matter-a136238
Tracy Z.
No cervical spine MRI just brain. The MRI was ordered by my PCP but only by my request after a couple weeks of the above symptoms. The MRI was done at my local hospital and read by their radiologist. I have not seen a neurosurgeon since I was first diagnosed 11 years ago at that time they said since my only symptom was headaches I didnt need to see them and I agree I didn’t then my problem now is I have an MRI that says I don’t have Chiari so how do you convince your doctor to give you a referral when they say there is nothing wrong with you. The normal herniation thing confuses me even more why is it normal to have a herniation. Its all just so frustrating. I tried to pick up my 1 year old today and almost dropped him thank goodness he was still close to the floor so I was able to put him down before he fell very far. I just started a new job and Im afraid if things keep going im going to lose it.
TracyZ said:
I just posted a discussion about herniation size doesn’t matter. You can still have severe symptoms. Did your Dr’s do a cervical spine MRI? You are having some serious symptoms. When kind of Dr. ordered your MRI & did a regular Radiologist read it?
Sorry for so many questions. It just helps us help you.I did just look at your MRI. Did you know that +or- 3 mm. is the accepted norm in MRI measurements. You can still have horrible symptoms with a 3-4 mm Chiari Malformation. Have you seen a Neurosurgeon? If so you need a second opinion.
http://suite101.com/article/arnold-chiari-malformation-does-size-ma…
Tracy Z.
Tiffany, First, I would have your PCP call the radiologist and specifically ask him or her measure the descent of your cerebellar tonsils and ask the radiologist write an addendum to your report. If your PCP does not do it, you can do it yourself. You, through your insurance, paid for the MRI and the radiologist’s services … so you should get the information that you were seeking in the first place. Radiologists tend to look for masses and lesions that light up and are not always tuned into structural issues like Chiari. I don't know how old you are, but they sometimes the cerebellar tonsils ascend (move back up) with age too – some studies estimate that they ascend 1mm every ten years. The position that your head was in during the MRI can also affect the how the level of herniation appears on the MRI. Also, when your cerebellar tonsils are not significantly herniated (like over 7-8 mm) and depending on the circumference of your foreman magnum (the hole in the bottom of your skull) they can appear rounded rather than pointed. Hence, if they do not appear pointed, I think that radiologists do not bother to measure them. However, none of this means that Chiari is not the cause of your symptoms. Next, after you get an addendum to your MRI report, may I suggest that you get the actual CDs of your recent MRI and the one from 5 years ago and then go see a neurologist (unless after the addendum your PCP will refer you to a neurosurgeon) at a research University hospital in Kansas. Good luck. There is very little known and less understood about Chiari so, unfortunately, it gets over-looked and downplayed in the medical community. You have to really advocate for yourself but your symptoms, along with an MRI with 5 mm descent should certainly make a knowledgeable doctor consider Chiari as a viable diagnosis. Good luck! Fr. D
I just looked at the picture of your MRI. Your head looks like it is a little “forward” – in flexion which would pull the
tonsils up just a little bit (a millimeter is very SMALL!). I would guess that if you move your head back - into extension, your foremen magnum (hole in your skull) gets pretty clogged up. Also, if your cerebellar tonsils do not extend to T1 of your cervical spine (which in your MRI yours do not) I think that radiologists do not bother to measure them. If you get to a doctor that orders a cine flow MRI, tilt your head back just a bit while you are in the MRI so they get a more natural reading. It looks like the flat surface that you lay on for the MRI made you tuck your chin a little bit to get comfortable or perhaps that is how you compensate to get any more CSF flow. I would also be interested in seeing a coronal view of your cerebellar tonsils. While there is some distortion on that view, it will give you a better idea of their shape and the extent that your cerebellar tonsils push through the foreman magnum.
Fr. D said:
Tiffany, First, I would have your PCP call the radiologist and specifically ask him or her measure the descent of your cerebellar tonsils and ask the radiologist write an addendum to your report. If your PCP does not do it, you can do it yourself. You, through your insurance, paid for the MRI and the radiologist’s services … so you should get the information that you were seeking in the first place. Radiologists tend to look for masses and lesions that light up and are not always tuned into structural issues like Chiari. I don't know how old you are, but they sometimes the cerebellar tonsils ascend (move back up) with age too – some studies estimate that they ascend 1mm every ten years. The position that your head was in during the MRI can also affect the how the level of herniation appears on the MRI. Also, when your cerebellar tonsils are not significantly herniated (like over 7-8 mm) and depending on the circumference of your foreman magnum (the hole in the bottom of your skull) they can appear rounded rather than pointed. Hence, if they do not appear pointed, I think that radiologists do not bother to measure them. However, none of this means that Chiari is not the cause of your symptoms. Next, after you get an addendum to your MRI report, may I suggest that you get the actual CDs of your recent MRI and the one from 5 years ago and then go see a neurologist (unless after the addendum your PCP will refer you to a neurosurgeon) at a research University hospital in Kansas. Good luck. There is very little known and less understood about Chiari so, unfortunately, it gets over-looked and downplayed in the medical community. You have to really advocate for yourself but your symptoms, along with an MRI with 5 mm descent should certainly make a knowledgeable doctor consider Chiari as a viable diagnosis. Good luck! Fr. D
Tiffany,
I am concerned about your symptoms. Most come from compressed Cranial Nerves. That happens when we have a CM and small skull. It can be very serious. Please discuss this with your Dr. soon. Read about Trigeminal Neuralgia, Geniculate Neuralgia, & Glossopharyngeal Neuralgia. I have Geniculate Neuralgia. We also have forums for TN-http://www.livingwithtn.org/ & GPN - http://www.livingwithgpn.org/ . I think you will be surprised when you read about their symptoms. A Cervical Spine MRI will also get a better look at your CM & it will tell if you have any cervical issues causing your numbness & tingling sensations. What does your family think about your CM & symptoms?
Please let me know if you need anything.
Tracy Z.
I was 18 when I was diagnosed and I am 29 now. So if it is true that they ascend with age then I guess thats a possibility. I have my cd of my MRI. I could show you whatever views you would like to see but Im not really sure what views are what. I can tell you I do tend to keep my head bent somewhat forward because it hurts my neck to lean it back or even keep it straight.
Fr. D said:
I just looked at the picture of your MRI. Your head looks like it is a little “forward” – in flexion which would pull the
tonsils up just a little bit (a millimeter is very SMALL!). I would guess that if you move your head back - into extension, your foremen magnum (hole in your skull) gets pretty clogged up. Also, if your cerebellar tonsils do not extend to T1 of your cervical spine (which in your MRI yours do not) I think that radiologists do not bother to measure them. If you get to a doctor that orders a cine flow MRI, tilt your head back just a bit while you are in the MRI so they get a more natural reading. It looks like the flat surface that you lay on for the MRI made you tuck your chin a little bit to get comfortable or perhaps that is how you compensate to get any more CSF flow. I would also be interested in seeing a coronal view of your cerebellar tonsils. While there is some distortion on that view, it will give you a better idea of their shape and the extent that your cerebellar tonsils push through the foreman magnum.
Fr. D said:Tiffany, First, I would have your PCP call the radiologist and specifically ask him or her measure the descent of your cerebellar tonsils and ask the radiologist write an addendum to your report. If your PCP does not do it, you can do it yourself. You, through your insurance, paid for the MRI and the radiologist’s services … so you should get the information that you were seeking in the first place. Radiologists tend to look for masses and lesions that light up and are not always tuned into structural issues like Chiari. I don’t know how old you are, but they sometimes the cerebellar tonsils ascend (move back up) with age too – some studies estimate that they ascend 1mm every ten years. The position that your head was in during the MRI can also affect the how the level of herniation appears on the MRI. Also, when your cerebellar tonsils are not significantly herniated (like over 7-8 mm) and depending on the circumference of your foreman magnum (the hole in the bottom of your skull) they can appear rounded rather than pointed. Hence, if they do not appear pointed, I think that radiologists do not bother to measure them. However, none of this means that Chiari is not the cause of your symptoms. Next, after you get an addendum to your MRI report, may I suggest that you get the actual CDs of your recent MRI and the one from 5 years ago and then go see a neurologist (unless after the addendum your PCP will refer you to a neurosurgeon) at a research University hospital in Kansas. Good luck. There is very little known and less understood about Chiari so, unfortunately, it gets over-looked and downplayed in the medical community. You have to really advocate for yourself but your symptoms, along with an MRI with 5 mm descent should certainly make a knowledgeable doctor consider Chiari as a viable diagnosis. Good luck! Fr. D
I was 18 when I was diagnosed and I am 29 now. So if it is true that they ascend with age then I guess thats a possibility. I have my cd of my MRI. I could show you whatever views you would like to see but Im not really sure what views are what. I can tell you I do tend to keep my head bent somewhat forward because it hurts my neck to lean it back or even keep it straight.
Fr. D said:
I just looked at the picture of your MRI. Your head looks like it is a little “forward” – in flexion which would pull the
tonsils up just a little bit (a millimeter is very SMALL!). I would guess that if you move your head back - into extension, your foremen magnum (hole in your skull) gets pretty clogged up. Also, if your cerebellar tonsils do not extend to T1 of your cervical spine (which in your MRI yours do not) I think that radiologists do not bother to measure them. If you get to a doctor that orders a cine flow MRI, tilt your head back just a bit while you are in the MRI so they get a more natural reading. It looks like the flat surface that you lay on for the MRI made you tuck your chin a little bit to get comfortable or perhaps that is how you compensate to get any more CSF flow. I would also be interested in seeing a coronal view of your cerebellar tonsils. While there is some distortion on that view, it will give you a better idea of their shape and the extent that your cerebellar tonsils push through the foreman magnum.
Fr. D said:Tiffany, First, I would have your PCP call the radiologist and specifically ask him or her measure the descent of your cerebellar tonsils and ask the radiologist write an addendum to your report. If your PCP does not do it, you can do it yourself. You, through your insurance, paid for the MRI and the radiologist’s services … so you should get the information that you were seeking in the first place. Radiologists tend to look for masses and lesions that light up and are not always tuned into structural issues like Chiari. I don’t know how old you are, but they sometimes the cerebellar tonsils ascend (move back up) with age too – some studies estimate that they ascend 1mm every ten years. The position that your head was in during the MRI can also affect the how the level of herniation appears on the MRI. Also, when your cerebellar tonsils are not significantly herniated (like over 7-8 mm) and depending on the circumference of your foreman magnum (the hole in the bottom of your skull) they can appear rounded rather than pointed. Hence, if they do not appear pointed, I think that radiologists do not bother to measure them. However, none of this means that Chiari is not the cause of your symptoms. Next, after you get an addendum to your MRI report, may I suggest that you get the actual CDs of your recent MRI and the one from 5 years ago and then go see a neurologist (unless after the addendum your PCP will refer you to a neurosurgeon) at a research University hospital in Kansas. Good luck. There is very little known and less understood about Chiari so, unfortunately, it gets over-looked and downplayed in the medical community. You have to really advocate for yourself but your symptoms, along with an MRI with 5 mm descent should certainly make a knowledgeable doctor consider Chiari as a viable diagnosis. Good luck! Fr. D
My family really doesnt say anything other than my husband and he doesnt really know what to say. He just asks me repeatedly if im ok. The rest of my family is really uneducated when it comes to CM even though I have tried. They have all blown it off because it never seemed that big of a deal to them since all I was dealing with was headaches. My family does not live close either so other than my husband noone really sees any of it. Im just frustrated right now. It feels like my whole world is crashing down around me. I have an appointment with my PCP on tuesday so hopefully I can get somewhere with him but the last time I tasked to him about CM he didn’t act very open to discussing it so now with this MRI im afraid im going to have to fight even harder. Thats ok though. I dont give up easily, Im stubborn especially when it comes to something important.
TracyZ said:
Tiffany,
I am concerned about your symptoms. Most come from compressed Cranial Nerves. That happens when we have a CM and small skull. It can be very serious. Please discuss this with your Dr. soon. Read about Trigeminal Neuralgia, Geniculate Neuralgia, & Glossopharyngeal Neuralgia. I have Geniculate Neuralgia. We also have forums for TN-http://www.livingwithtn.org/ & GPN - http://www.livingwithgpn.org/ . I think you will be surprised when you read about their symptoms. A Cervical Spine MRI will also get a better look at your CM & it will tell if you have any cervical issues causing your numbness & tingling sensations. What does your family think about your CM & symptoms?
Please let me know if you need anything.
Tracy Z.
Hi..
So sorry you are dealing with all of this. I read the replies you have already gotten...you got wonderful input..I cannot add anything....sorry!!
Please know we care and are here for you. Pls keep us posted on how you are making out!
Peace,
Lori
Tiffany, You are too young to attribute the change from 5mm to 4mm to age. The theory there is: prior to 40 - 5mm is standard, after 40 - 4 mm and after 50 3mm ... etc. I would attrtibute the difference to your head position which also sounds like how you are compensating for CSF blockage. I also agree completely with Emmaline about giving birth triggering the symptoms. Obviously, I don't know it from experience, but I cannot imagine anything increasing CSF presssure more. Push the issue with your PCP, don't back down, and ask him to order a cervical MRI like Tracey suggested. Stay strong and focused! Fr. D
Thank you all so much for your responses. I will keep you posted with what happens in the upcoming weeks.
Not exactly sure if these are the views you were talking about but I think it might be so I attached 3 of them that were in the series right after each other. Maybe that will give you a better look. Either way I really appreciate your input and will be seeing my PCP on Tuesday and asking for a referral to a NS. Thank you soooo much.
Fr. D said:
484-MRI1.jpg (30 KB) 485-MRI2.jpg (30 KB) 486-MRI3.jpg (28.6 KB)I just looked at the picture of your MRI. Your head looks like it is a little “forward” – in flexion which would pull the
tonsils up just a little bit (a millimeter is very SMALL!). I would guess that if you move your head back - into extension, your foremen magnum (hole in your skull) gets pretty clogged up. Also, if your cerebellar tonsils do not extend to T1 of your cervical spine (which in your MRI yours do not) I think that radiologists do not bother to measure them. If you get to a doctor that orders a cine flow MRI, tilt your head back just a bit while you are in the MRI so they get a more natural reading. It looks like the flat surface that you lay on for the MRI made you tuck your chin a little bit to get comfortable or perhaps that is how you compensate to get any more CSF flow. I would also be interested in seeing a coronal view of your cerebellar tonsils. While there is some distortion on that view, it will give you a better idea of their shape and the extent that your cerebellar tonsils push through the foreman magnum.
Fr. D said:Tiffany, First, I would have your PCP call the radiologist and specifically ask him or her measure the descent of your cerebellar tonsils and ask the radiologist write an addendum to your report. If your PCP does not do it, you can do it yourself. You, through your insurance, paid for the MRI and the radiologist’s services … so you should get the information that you were seeking in the first place. Radiologists tend to look for masses and lesions that light up and are not always tuned into structural issues like Chiari. I don't know how old you are, but they sometimes the cerebellar tonsils ascend (move back up) with age too – some studies estimate that they ascend 1mm every ten years. The position that your head was in during the MRI can also affect the how the level of herniation appears on the MRI. Also, when your cerebellar tonsils are not significantly herniated (like over 7-8 mm) and depending on the circumference of your foreman magnum (the hole in the bottom of your skull) they can appear rounded rather than pointed. Hence, if they do not appear pointed, I think that radiologists do not bother to measure them. However, none of this means that Chiari is not the cause of your symptoms. Next, after you get an addendum to your MRI report, may I suggest that you get the actual CDs of your recent MRI and the one from 5 years ago and then go see a neurologist (unless after the addendum your PCP will refer you to a neurosurgeon) at a research University hospital in Kansas. Good luck. There is very little known and less understood about Chiari so, unfortunately, it gets over-looked and downplayed in the medical community. You have to really advocate for yourself but your symptoms, along with an MRI with 5 mm descent should certainly make a knowledgeable doctor consider Chiari as a viable diagnosis. Good luck! Fr. D
Well I had my follow-up with my PCP today let me just say Frustrated would be a major understatement right now. The only thing he was focused on was my headaches which I wasnt even tallking about. I told him my concern was all of the symptoms I listed above. When I told him about losing my hearing he asked if I had seen an ENT I said yes. He replied you should follow up with them they should atleast be able to get you a hearing aide. He focused on my headaches the entire time not once did he mention my MRI even though thats why I was there. Listened to my heart, lungs checked my reflexes and tried to leave the room after telling me he was referring me to a neurologist for my MIGRAINES. I said excuse me what about everything else. He replied oh ya maybe I didnt say it but your MRI was fine so I dont think those other things are anything to worry about but we will check a few labs and walked out of the room. Atleast I got a referral to someone else I know its not a NS but its a start.
Oh I plan on it. Im in the process of switching insurances so checking in to what my new insurance will require whether I can just go on my own or if I need a referral.
Im stubborn and it is something to worry about to me or I wouldnt have gone to the Dr. to begin with. I have 3 boys that need a momma to take care of them and I have always been there to do that. I will do whatever I have to to get the help I need to to continue doing that.
i know the feeling, i was diagnosed with type2 chiari in mar.2012 and my neruosugern said that my herniation was quite larger than he liked seeing and since i was have only headaches and some vertigo that he wanted to wait on the operation till i was more symtomatic, go back and ask that of the doctor or who ever read the mri, i think