Aa
Newbie here!
Hi! my name is Tara. I was dx with ACM1 in Jan. 2010. I had been having headaches and neck pains since the age of 10. I was told they were migraines and haved tried numerous migraines meds that would not help the headaches at all. I have tried Ibuprofen and Tylenol with no relief. I have an appt. with a NS on the 25th of this month. My question is if anyone knows of a Chiari specialist in Indiana or in Louisville, Ky.
My husband just recently put me on his insurance after months of me pleading with him. He isn't very understanding of my condition at all and most of my friends and family don't seem to understand as well.
My sx are headaches which feel like my head is going to explode off my shoulders. There is so much pressure with these headaches that I feel as if my eyes are going to pop out of my head. They start at the back of my head and go to the top and around to the temple area (mainly the right temple but has hurt in both), the head pain spreads down into my neck and back and shoulders. I also have ringing in my ears, nausea that comes and goes, ear pain(always told my ears are fine),dizziness,off balance(DH says I always veer to the right when I am walking),extreme fatigue,rapid heart rate,chest pain,tingling and numbness in arms,legs,hands and feet, memory loss, difficulty focusing and concentrating, irritabilty, etccc. The list is soooo long.
I had an MRI of my brain,cervical and thoracic spine. The MRI shows a 3mm herniation which they have said is a mild herniation but my sx beg to differ. They are anything BUT mild. I would love to talk to others on here who know what I am going through. I get sooo depressed sometimes because I used to be so active and now it is hard for me to do too much without tireing out quickly. I feel like I am a burden on my family and I am soooo mad that I can't do anything about my condition let alone hold down a full time job. Plz help! Thank you and God Bless you all!
My husband just recently put me on his insurance after months of me pleading with him. He isn't very understanding of my condition at all and most of my friends and family don't seem to understand as well.
My sx are headaches which feel like my head is going to explode off my shoulders. There is so much pressure with these headaches that I feel as if my eyes are going to pop out of my head. They start at the back of my head and go to the top and around to the temple area (mainly the right temple but has hurt in both), the head pain spreads down into my neck and back and shoulders. I also have ringing in my ears, nausea that comes and goes, ear pain(always told my ears are fine),dizziness,off balance(DH says I always veer to the right when I am walking),extreme fatigue,rapid heart rate,chest pain,tingling and numbness in arms,legs,hands and feet, memory loss, difficulty focusing and concentrating, irritabilty, etccc. The list is soooo long.
I had an MRI of my brain,cervical and thoracic spine. The MRI shows a 3mm herniation which they have said is a mild herniation but my sx beg to differ. They are anything BUT mild. I would love to talk to others on here who know what I am going through. I get sooo depressed sometimes because I used to be so active and now it is hard for me to do too much without tireing out quickly. I feel like I am a burden on my family and I am soooo mad that I can't do anything about my condition let alone hold down a full time job. Plz help! Thank you and God Bless you all!
Hello and welcome! I cant add much to what Selma has said. I am sorry for what you are going thru as all of us seem to have similiar symptoms and go thru the same things trying to find support and treatment. It is important especially being classifed as Chiari 0 that you find a specialist. It will save you so much stress and frustration. My herniation is 11mm and I went thru a huge run around before I finally found a CM specialist.
I think since this illness is basically invisible is hard for families to grasp the severity or how bad our symptoms can be. I would recommend letting the DH go with you to a specialist appt and reading some post. Lots of times acceptance comes with education.
Hang in there we are here for you!
I think since this illness is basically invisible is hard for families to grasp the severity or how bad our symptoms can be. I would recommend letting the DH go with you to a specialist appt and reading some post. Lots of times acceptance comes with education.
Hang in there we are here for you!
I can relate alot with you as i have many of the same symptoms except my symptoms focus on the left side. i also am very new to this have not had any surgery's yet or anything. I see a neuro for the first time feb 7th. my mri showed 13mm herniation. i have also been on many trips to local ers and the dr's couldn't figure what was wrong always gave me drugs and sent me home. i am thinking in the next couple days i will end up going again. im on no pain meds due to sensitivity to many drugs and they don't want to give me a narcotic til i go to the neuro. hang in there hun. i just got diagnosed about 3 weeks ago. hoping for the best for you. I know my family has no understanding and as the days go by i get more and more drained and my symptoms get worse and worse. just hang in there
COMMUNITY LEADER
I understand how u feel...I went yrs feeling the same, pushing myself to work...and my DH did not understand either, but I also did not have a dx...u do, what u need is to find a true chiari specialist and get ur DH to go with u...once they understand what is going on...u will get support.
And it is funny, but my DD really seemed to understand with out knowing a dx...so kids r easy to deal with...it is own own expectations and the standards we set for ourselves that r hardest to face.
Take it easy on ur self, listen to ur body...and do things in moderation so u can have a day here and there with the kids.
"selma"
And it is funny, but my DD really seemed to understand with out knowing a dx...so kids r easy to deal with...it is own own expectations and the standards we set for ourselves that r hardest to face.
Take it easy on ur self, listen to ur body...and do things in moderation so u can have a day here and there with the kids.
"selma"
Hey,
I'm so sorry to hear about how much pain your in. It is very frustrating not knowing what is wrong and what to do. I had a similar struggle with my symptoms, I'm 24 years old and always in pain, super tired, I had numbness on the left side of my body, along with headaches all the time. Everyone thought I was just over reacting and I was too young to feel this way. I kept on praying and luckily I pushed my doctor for and MRI of my spinal cord and head. I did have a very large syrinx and herniation. So don't ever think your pain is not real, I know it's hard when everyone is telling you to quit shall I say "whining". I had surgery at the end of December, it has been very hard recovering, but it has been worth it. You need to make sure you let the NS know exactly how bad the pain is. It's frustrating with doctors and you need to be completely up front and not leave anything out. Your health is the most important thing, I'm currently the only one providing for my family right now my fiance is going to school and we have a 1 1/2 year old daughter. So i know how it feels to feel like your letting everyone down. The truth is they need you to get healthy and your husband does to. You should let him read some of these forums maybe it will help him understand how real this is. Just keep your head up there are people that can help you and it will get better! Any time you need to ramble on lol you can chat with me! Take care of yourself and I will pray for you.
Mindy
I'm so sorry to hear about how much pain your in. It is very frustrating not knowing what is wrong and what to do. I had a similar struggle with my symptoms, I'm 24 years old and always in pain, super tired, I had numbness on the left side of my body, along with headaches all the time. Everyone thought I was just over reacting and I was too young to feel this way. I kept on praying and luckily I pushed my doctor for and MRI of my spinal cord and head. I did have a very large syrinx and herniation. So don't ever think your pain is not real, I know it's hard when everyone is telling you to quit shall I say "whining". I had surgery at the end of December, it has been very hard recovering, but it has been worth it. You need to make sure you let the NS know exactly how bad the pain is. It's frustrating with doctors and you need to be completely up front and not leave anything out. Your health is the most important thing, I'm currently the only one providing for my family right now my fiance is going to school and we have a 1 1/2 year old daughter. So i know how it feels to feel like your letting everyone down. The truth is they need you to get healthy and your husband does to. You should let him read some of these forums maybe it will help him understand how real this is. Just keep your head up there are people that can help you and it will get better! Any time you need to ramble on lol you can chat with me! Take care of yourself and I will pray for you.
Mindy
Thank u for the message. I am having a very bad night tonight. Well since Wednesday actually. The pain is soo bad in my left jaw area. It comes and goes and the pain is sooo intense and it burns sooo bad. I have went through a bottle of Ibuprofen in 3 dys. as well as taking Loratab 10 and Zanaflex for pain I don't knowo what else to do. I have been to two ER's and of course the doctors there don't know about Chiari. I had one ask me how to spell it! I go on the 25th of this month to see a NS for the first time. My NL is Dr. Meckler and he is wonderful but I don't see him again until April. That was the earliest he could get me in.
I just get sooo depressed and sooo upset because it feels like no one I know understands how much pain I am in and how bad I feel everyday. My husband is the only one working right now and wants me to hurry up and find another job even though I have lost two jobs due to my condition. I am also type 2 diabetic.
The pain is sooo bad right now that I am just crying. I just wanna scream but I know that would just make it worse. I don't know if I wanna live like this for the rest of my life. The only thing that keeps me going is my twin boys Isaiah and Noah. I gotta be there for them, but I feel like I am letting them down all the time. I can't play sports with them, I am usually bedridden or unable to get up most times. I am afraid my husband will eventually leave me(he is my boys step-dad). He isn't such a very understanding man when it comes to my pain. I guess since he can't see what is causing the pain then it can't hurt that bad. I told him I wish he could walk in my shoes for just one day and feel what I feel and he would have a completely different outlook.
Sorry to ramble on. Plz keep me in your prayers. God Bless.
I just get sooo depressed and sooo upset because it feels like no one I know understands how much pain I am in and how bad I feel everyday. My husband is the only one working right now and wants me to hurry up and find another job even though I have lost two jobs due to my condition. I am also type 2 diabetic.
The pain is sooo bad right now that I am just crying. I just wanna scream but I know that would just make it worse. I don't know if I wanna live like this for the rest of my life. The only thing that keeps me going is my twin boys Isaiah and Noah. I gotta be there for them, but I feel like I am letting them down all the time. I can't play sports with them, I am usually bedridden or unable to get up most times. I am afraid my husband will eventually leave me(he is my boys step-dad). He isn't such a very understanding man when it comes to my pain. I guess since he can't see what is causing the pain then it can't hurt that bad. I told him I wish he could walk in my shoes for just one day and feel what I feel and he would have a completely different outlook.
Sorry to ramble on. Plz keep me in your prayers. God Bless.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
We do have a list of the members drs , but it is not meant as a referral, but as a means to help u locate drs that have done chiari surgeries.....u still need to research the drs to find the right one for u- http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Too many drs look at the size of the herniation and determine if it is mild or not...when in fact that is not how to even tell if it is symptomatic....u need to have a CINE MRI to check for CSF blockage and overcrowding....U should also be checked for a syrinx, which can form in ne area of ur spine, some drs only check the cervical spines....we have several members with a syrinx in the lumbar spine.....
So getting back to using the size of the herniation urs would be considered Chiari 0....since it is less than 5mm, but have no fears u could have more symptoms than someone with a herniation of 10mm....like I said it is not the size it is the CSF blockage and overcrowding u have to worry about.
This is a frustrating journey...finding a dr that understands chiari and can treat u...hang on, and know we r here : )
"selma"
We do have a list of the members drs , but it is not meant as a referral, but as a means to help u locate drs that have done chiari surgeries.....u still need to research the drs to find the right one for u- http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Too many drs look at the size of the herniation and determine if it is mild or not...when in fact that is not how to even tell if it is symptomatic....u need to have a CINE MRI to check for CSF blockage and overcrowding....U should also be checked for a syrinx, which can form in ne area of ur spine, some drs only check the cervical spines....we have several members with a syrinx in the lumbar spine.....
So getting back to using the size of the herniation urs would be considered Chiari 0....since it is less than 5mm, but have no fears u could have more symptoms than someone with a herniation of 10mm....like I said it is not the size it is the CSF blockage and overcrowding u have to worry about.
This is a frustrating journey...finding a dr that understands chiari and can treat u...hang on, and know we r here : )
"selma"
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