Aa
Feeling a little crazy
I've been diagnosed with Chiari I Malformation over the past month. I don't know the length of the herniation as this wasn't provided to me (or in the MRI Report). I'm assuming that it's at least 5mm due to the fact that Radiologist probably uses the strict standard of at least 5mm for diagnosis.
My doctor did an MRI of my brain to check for tumors. He thought that I had some symptoms consistent with a brain tumor (my memory can be really bad at time, I can be distracted easily, and I randomly replace words that aren't correct at all). I've also had headaches for a number of years. They appear to be at the back part of my skull around the neck area. I've complained about this for a number of years and that it feels like there's pressure inside my head, but people just dismissed it as allergies or acted like I was crazy.
I've also had occurrences where it seems like I'm going to faint (room starts to get black for a while around the center of my vision and closes in like a circle). These instances usually cause me to stop walking/talking/doing anything else to wait for it to go away (I don't think it lasts for more than a few seconds, but I'm not usually around anyone to determine if it's longer or shorter).
I've also noticed that many times I'll feel like I'm burning up when I start to get headaches or the almost fainting happens. This can be quite distressing. I saw a Physician's Assistant who told me that it was anxiety and prescribed me Zoloft and Xanax. I tried them both for a little while, but I didn't really notice any difference in general with how I feel.
There also appears to be a loss of sensitivity with my body in general. Things that I used to be able to feel fairly well (such as a light touch on my feet or hands). My hands are still fairly sensitive to heat and cold, but my feet don't seem to be quite so sensitive. They're constantly cold. When I'm asleep, I've noticed symptoms that would be consistent with restless leg syndrome (although it can occur anywhere on my body). I used to think that maybe I was just crazy and paranoid and feeling things because I was stung by a scorpion in my bed once, but it seems like this is consistent with Chiari I Malformation.
Chronic fatigue also seems to plague my life. I can sleep for ten hours at night, and then feel so tired during the day that I can't seem to do anything. I usually feel better right after I wake up, but this fades, quickly. If I lift my neck trying to do something (such as painting a ceiling), it hurts so much and I just feel so tired. You can feel much more stress in my neck compared to other people.
One thing that started to bother me is that sometimes I will be picking up a glass or something with my hands (usually just one hand) and I will have it, but it seems like my hand shake or something and I end up dropping it/spilling it. I used to never do that, but that's new this year. I'm also a little clumsy/uncoordinated. I'll run into walls or something if I'm walking with someone through a door or they keep walking closer to me (only with my shoulders). I never really knew if this was anything or not though.
On top of suffering from photophobia and feeling like there's a lump in my throat, I've also noticed that my frequency with urination this year has increased. I drink a lot of water everyday, but I used to not have to urinate as frequently as I do now.
So many of these symptoms seem consistent with Chiari I right? I'm not just crazy? My doctor who ordered the MRI said that I couldn't do things like running and the likes, but when I asked if there are any symptoms I should look out for "Nope. Not a one." was his reply... My mother who is a FNP has also been dismissive of my claims despite having an MRI done with a Radiologist's review stating that I have Chiari I. She was more apt to letting me get an appointment with a Neurosurgeon after she read the report. Prior to this, she stated that I was being paranoid about my health, and to stop worrying so much about it. This is despite the fact that I force my blood work to be run and diagnosed with a disease and then later diagnosed with this malformation through MRI
My stepfather was an Orthopedic Surgeon in the past, and is very dismissive of both the Radiologist's report and also a disease that I was diagnosed with the month or two prior to this. He finally yielded on the disease after I had additional blood-work that removed any doubt. My grandmother basically said "Deal with it. It's not serious." despite the fact that she literally has no medical knowledge... One of my friends who I confided in having the MRI run before I had the test results said "Do you think it's not just psychological and in your head?"
Well I think you can see how I feel a little crazy in the midst of all of this apathy/disbelief. Do you think I'm crazy? Maybe I am. I have no idea. I'm scheduling an appointment with Mark D'Anilese or whatever his last name is in Lubbock, TX. I wanted to go to the Wisconsin Chiari Center because they seem to have tons of knowledge, but she said that it was too cost prohibitive. Do you think he's a good NS to have look at me?
My doctor did an MRI of my brain to check for tumors. He thought that I had some symptoms consistent with a brain tumor (my memory can be really bad at time, I can be distracted easily, and I randomly replace words that aren't correct at all). I've also had headaches for a number of years. They appear to be at the back part of my skull around the neck area. I've complained about this for a number of years and that it feels like there's pressure inside my head, but people just dismissed it as allergies or acted like I was crazy.
I've also had occurrences where it seems like I'm going to faint (room starts to get black for a while around the center of my vision and closes in like a circle). These instances usually cause me to stop walking/talking/doing anything else to wait for it to go away (I don't think it lasts for more than a few seconds, but I'm not usually around anyone to determine if it's longer or shorter).
I've also noticed that many times I'll feel like I'm burning up when I start to get headaches or the almost fainting happens. This can be quite distressing. I saw a Physician's Assistant who told me that it was anxiety and prescribed me Zoloft and Xanax. I tried them both for a little while, but I didn't really notice any difference in general with how I feel.
There also appears to be a loss of sensitivity with my body in general. Things that I used to be able to feel fairly well (such as a light touch on my feet or hands). My hands are still fairly sensitive to heat and cold, but my feet don't seem to be quite so sensitive. They're constantly cold. When I'm asleep, I've noticed symptoms that would be consistent with restless leg syndrome (although it can occur anywhere on my body). I used to think that maybe I was just crazy and paranoid and feeling things because I was stung by a scorpion in my bed once, but it seems like this is consistent with Chiari I Malformation.
Chronic fatigue also seems to plague my life. I can sleep for ten hours at night, and then feel so tired during the day that I can't seem to do anything. I usually feel better right after I wake up, but this fades, quickly. If I lift my neck trying to do something (such as painting a ceiling), it hurts so much and I just feel so tired. You can feel much more stress in my neck compared to other people.
One thing that started to bother me is that sometimes I will be picking up a glass or something with my hands (usually just one hand) and I will have it, but it seems like my hand shake or something and I end up dropping it/spilling it. I used to never do that, but that's new this year. I'm also a little clumsy/uncoordinated. I'll run into walls or something if I'm walking with someone through a door or they keep walking closer to me (only with my shoulders). I never really knew if this was anything or not though.
On top of suffering from photophobia and feeling like there's a lump in my throat, I've also noticed that my frequency with urination this year has increased. I drink a lot of water everyday, but I used to not have to urinate as frequently as I do now.
So many of these symptoms seem consistent with Chiari I right? I'm not just crazy? My doctor who ordered the MRI said that I couldn't do things like running and the likes, but when I asked if there are any symptoms I should look out for "Nope. Not a one." was his reply... My mother who is a FNP has also been dismissive of my claims despite having an MRI done with a Radiologist's review stating that I have Chiari I. She was more apt to letting me get an appointment with a Neurosurgeon after she read the report. Prior to this, she stated that I was being paranoid about my health, and to stop worrying so much about it. This is despite the fact that I force my blood work to be run and diagnosed with a disease and then later diagnosed with this malformation through MRI
My stepfather was an Orthopedic Surgeon in the past, and is very dismissive of both the Radiologist's report and also a disease that I was diagnosed with the month or two prior to this. He finally yielded on the disease after I had additional blood-work that removed any doubt. My grandmother basically said "Deal with it. It's not serious." despite the fact that she literally has no medical knowledge... One of my friends who I confided in having the MRI run before I had the test results said "Do you think it's not just psychological and in your head?"
Well I think you can see how I feel a little crazy in the midst of all of this apathy/disbelief. Do you think I'm crazy? Maybe I am. I have no idea. I'm scheduling an appointment with Mark D'Anilese or whatever his last name is in Lubbock, TX. I wanted to go to the Wisconsin Chiari Center because they seem to have tons of knowledge, but she said that it was too cost prohibitive. Do you think he's a good NS to have look at me?
I can't figure out how to edit. I just wanted to say sorry for the long post. I didn't realize it was so long.
Hi and welcome :)
You are not crazy!
You are dealing with a condition that is not well understood by most Doctors. in fact most have never heard of Chiari. The passing out feeling is a Chiari thing and you may pass out so it is important to be aware of this. Drop Attacks, Syncope & Presyncvopy are terms used for this and it involves a drop in your BP. All your symptoms are consistent with CM. Dont worry about what others may think, this is your health (with family it may be denial) so find a good NS who had experience of Chiari. Surgery is not a cure and is done to help with symptoms and improve quality of life and should not be rushed into.
You need to get a full spinal MRI to check for related conditions such as Syringomyelia (a Syrinx) Tethered Cord EDS and other related conditions. A CINE MRI will show if you have a CSF obstruction.
Glad to have you here, sorry about the reasons :)
Ray
You are not crazy!
You are dealing with a condition that is not well understood by most Doctors. in fact most have never heard of Chiari. The passing out feeling is a Chiari thing and you may pass out so it is important to be aware of this. Drop Attacks, Syncope & Presyncvopy are terms used for this and it involves a drop in your BP. All your symptoms are consistent with CM. Dont worry about what others may think, this is your health (with family it may be denial) so find a good NS who had experience of Chiari. Surgery is not a cure and is done to help with symptoms and improve quality of life and should not be rushed into.
You need to get a full spinal MRI to check for related conditions such as Syringomyelia (a Syrinx) Tethered Cord EDS and other related conditions. A CINE MRI will show if you have a CSF obstruction.
Glad to have you here, sorry about the reasons :)
Ray
Thanks so much for your help! I figured that this seemed very inline with Chiari, but I just wanted confirmation from someone. I realize that surgery isn't a cure and shouldn't be rushed into, but do you think it would help? I'm tired of feeling this way. I want to feel normal again! Haha. Thanks again!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
U r not alone in being made to feel crazy or given meds for anxiety, we have all BTDT....it is sad that the medical professionals do not listen to their patients.
Many things u read about chiari on line is that it is a rare condition, I do not believe that for a second, there r way too many of us for that, but I do believe that drs with chiari knowledge and skills r rare.
Ray has given u some sound advice...use the list of drs here on the forum to help u research drs in the state if TX...u need one that will work with in ur insurance, but u also want one that knows chiari inside and out.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Glad to have u join us, but hot happy for the reasons that bring u.
"selma"
U r not alone in being made to feel crazy or given meds for anxiety, we have all BTDT....it is sad that the medical professionals do not listen to their patients.
Many things u read about chiari on line is that it is a rare condition, I do not believe that for a second, there r way too many of us for that, but I do believe that drs with chiari knowledge and skills r rare.
Ray has given u some sound advice...use the list of drs here on the forum to help u research drs in the state if TX...u need one that will work with in ur insurance, but u also want one that knows chiari inside and out.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Glad to have u join us, but hot happy for the reasons that bring u.
"selma"
Welcome to our little family. I was just diagnosed with Chiari in August and have had my health downward spiral with everything from POTS (postural orthostatic tachycardic syndrome) Your heart rate jumps and blood pressure drops when you stand up and you feel faint. Difficulty swallowing to the point I am having serious issues eating. Neurogenic bladder going to urinate at least 20 times a day. Random numbness and tingling. The headaches and neck pain go without saying.
The way it was explained to me by a true chiari specialist is this little (pointing to his model of the opening of the spinal cord and base of the skull) brain stem controls everything heart rate, respiration, digestion, swallowing, basically everything and if it is under stress your whole body is going to be affected.
So no you arent crazy. If your family is like mine it may just take them a little while to grasp all of this. My dad has been accompanying me on my appointments and is understanding more and more about this condition. So do what you have to for yourself and try to be patient with them. You absolutely have to find a Chiari specialist, trust me if you dont you will be bouncing off the walls for a long time trying to find the answers.
A quick note about insurance is sometimes you can get your carrier to approve a doctor in network based on the fact there are so few Chiari specialists in the US. It worked for me.
The way it was explained to me by a true chiari specialist is this little (pointing to his model of the opening of the spinal cord and base of the skull) brain stem controls everything heart rate, respiration, digestion, swallowing, basically everything and if it is under stress your whole body is going to be affected.
So no you arent crazy. If your family is like mine it may just take them a little while to grasp all of this. My dad has been accompanying me on my appointments and is understanding more and more about this condition. So do what you have to for yourself and try to be patient with them. You absolutely have to find a Chiari specialist, trust me if you dont you will be bouncing off the walls for a long time trying to find the answers.
A quick note about insurance is sometimes you can get your carrier to approve a doctor in network based on the fact there are so few Chiari specialists in the US. It worked for me.
Thanks for the referrals selma. I had looked on another website's list (I hadn't seen the one here originally) for a neurosurgeon to have a review (Mark D'Alise). His office said that they don't treat Chiari (which seems strange because he's on a patient recommended list for Chiari, but I suppose that they may have had Chiari + Syringomyelia). I don't know. I don't want to feel like I'm overreacting to this. Hahaha.
Yours seems more severe than mine pamk5. I'm sorry about that. I hope that you find the treatment you need. It's good that your father goes with you and understand more! My mother has started coming around more now that I showed her the MRI's specifically.
I'm not sure where to turn to or to go. I guess I'll just see a Neurologist to get a neurological examination to see what they say. Outside of that, I don't know what else to do. I feel like I'm not neurosurgeon material (they said only surgical diagnosis, but isn't a neurosurgeon the one who would determine if it were a surgical diagnosis?). I'll reevaluate everything with my PCP. He's fairly understanding and I like him.
Yours seems more severe than mine pamk5. I'm sorry about that. I hope that you find the treatment you need. It's good that your father goes with you and understand more! My mother has started coming around more now that I showed her the MRI's specifically.
I'm not sure where to turn to or to go. I guess I'll just see a Neurologist to get a neurological examination to see what they say. Outside of that, I don't know what else to do. I feel like I'm not neurosurgeon material (they said only surgical diagnosis, but isn't a neurosurgeon the one who would determine if it were a surgical diagnosis?). I'll reevaluate everything with my PCP. He's fairly understanding and I like him.
COMMUNITY LEADER
No worries...this is y we do not copy and paste those lists of drs...they r not current or always correct.And y we still insist u research all drs our list is just that our list from the members here of drs they have been to and liked....u have to find the one u like and is right for u.
Keep us posted : )
"selma"
Keep us posted : )
"selma"
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