So I have been having problems with my back. Is this common with the Chiari?? The pain is so bad!!! I go to the doctor this week to dicuss surgery for the Chiari...nervous though. Just wondering if my back pain is related to all this.
Stefanie,
I’m sorry that you’re in so much pain:( Back pain is horrible! It definitely could be related to your Chiari, but I would still have your doctor look into other possibilities. I have horrible back pain too:( I have Chiari, Syringomyelia, and multiple herniated discs. So, I don’t know which problem causes the most back pain. I hope you feel better soon!
Crystal
Thank you! I will surely ask when I go this week to check my back too. I have heard a few people talk about Syringomyelia somewhat. What is it actually? If you don't mind me asking.
I don’t mind at all:) Syringomyelia can be caused by either Chiari or trauma. I personally think, in my case, it’s a little of both. Basically, I have cysts (syrinx) in my spinal cord that can destroy it from the inside out. If it progresses and grows larger in size, it could even cause paralization. That’s why it’s usually recommended to have PFD when you have Chiari with Syringomyelia. My Neurosurgeon that diagnosed me back in October 2010 wanted to wait and see what happened in 2 years. I have gotten a lot worse, especially in the last 6 months. So, I’m going to go see a Neurosurgeon that specializes in Chiari and Syringomyelia.
Crystal
back pain is normally caused by syringomelia, this needs to be taken seriously and to be checked,
im also wondering, if anyone can explain the type of pain they are getting in there backs and which areas?
i do suffer from back and chest pain, but i have a tumor compressing my cord, so just wondering if its the same type of pain
I have sharp pains in my lower back. My L4 and L5 are shattered into little pieces, so I’m assuming that my sharp lower back pain is coming from that. I have an intense ache type pain w/ stiffness in my mid to upper back, so I think that’s the syrinx and/or chiari. I also have a burning pain between my shoulder blades, which I’m pretty sure is the syrinx. I hope this makes sense and answers your question about the different types and locations of back pain. I hope you feel better soon!
Crystal
I have pain the in the lower part of back and around shouder blades. I wish we had a Chiari center around here but can only find some out of state. I have trouble walking for very long at all. I hope I find some answers this week too. I am trying to take care of 3 kids while and can hardly move. Praying everyone can get some relief soon. So glad I found this site with people who know what I am going though and how I feel.
Praying for you all
Hi...
Yes, at times I get lower back pain and have scoliosis as well.... my NS said he was not 100% sure if it was b/c of Chiari.
when is your appt.??? How are you doing today????
Peace,
Lori
i alos havee 3kids and thats hard when you do have touble moving. its hard and draining, i understand the trouble that you are going though,
Stefanie Graves said:
I have pain the in the lower part of back and around shouder blades. I wish we had a Chiari center around here but can only find some out of state. I have trouble walking for very long at all. I hope I find some answers this week too. I am trying to take care of 3 kids while and can hardly move. Praying everyone can get some relief soon. So glad I found this site with people who know what I am going though and how I feel.
Praying for you all
My appointment is tomorrow morning!! I can't wait to get some help with all this. Praying my appointment goes well and praying for all of you on here too.
I went to the doctor yesterday to talk about surgery for my Chiari. It turned out the more questions I asked, I realized that the doctor never looked at my scans (he had just read the report) so I asked him to go over them with me. As he with through them he found out I have a Brain Herniation that had been missed. He seemed really worried and took off fast. We waited for him to come back but the nurse said he is going to call me back real soon. He is having some more test ran on my back because of the back problems I have had. Should I be worried and has anyone else had this too?? I read some on it and it seems to be real serious!
razzle51 said:
you need to go to the dr to find out just what it is . dont assume everything is chiari related . you may have something entirly different going on.....
I went to the doctor day before yesterday to talk about surgery for my Chiari and my back. He found out I have a Brain Herniation that had been missed when they did scans of the Chiari. He seemed really worried and took off fast.He is having some more test ran on my back because of the back problems I have had, because he said it could be related but he wanted to make sure first.
Hi Steff,
Don't panic! Your doctor may have reacted that way because he hadn't seen many cases of Chiari. I don't understand what he meant by a "brain herniation". That is what Chiari is - a brain herniation. How could they diagnose Chiari if they didn't see a brain herniation and note that in the report? I guess I am confused! I'm so glad you asked him to look at your scans with you and I am glad he is ordering more testing. I know going thru all the tests is tedious, but is best to have thorough testing done so you can lay all the cards on the table:)
Carla
Hi
I also have problems with my back. Pain in between my shoulder blades and burning. I have had a cervical and lumbar MRI but never a thoracic MRI. I was told by my NL that syrinx typically doesn't form in the thoracic spine. I will be 4 wks post op from decompression surgery on Tues. the 17th. I have only experienced the pain in my back twice so hopefully as I continue to recover I won't have it again. Hope u get some answers soon.
Love and Gentle hugs,
Tara
Hi Steff,
I am new to this site. I searched for site that offered support. I need to know there are others who can relate. My husband (GOD love his heart) tries to understand. I feel awful for him for having to deal with me. lol Actually, my family is great but I know they don't understand very well.
I am 38, mother of 2 & married for almost 21 yrs. Our oldest is 20 & our youngest just turned 14. I was a cocktail server for little over 6 yrs at a riverboat casino. It was rather classy. The required uniform consisted of 2" heels. I worked the busiest nights because money was awesome. I thought my pains we were due to carrying heavy trays & walking around in heels for so many years.
Well the pains grew from lower back, shoulders, elbows, knees, headaches, palpatations (spelling) in chest. Also, I was having trouble w/my ears. I have difficulty w/pain, tingling & hearing.
I finally went to family doctor. He tested my thyroid & for RA; tests were negative. He checked my ears & he said he couldn't find anything wrong. So he sent me to an ears, nose & throat specialist. That doctor couldn't figure out what was wrong. He sent me to another ENT specialist in Cincinnati. UC Health Hospital. There my hearing was tested. It showed I have tinitus (spelling). After that she had me have an MRI. That showed the Chiari. That was in June 2011.
Well the ENT then had me scheduled for additional testing. That was in December 2011. I saw a neuro doctor. That doctor had me have another MRI; because he wanted a test of his recommendation & he wanted to read it himself. Yea, I have Chiari.
At this point nothing has been done. The neuro doctor said I should do physical therapy & call him if pain worsens. Yea right, wonder why he thinks I came to doctor anyway.
So that is my story.
Steff said:
I have pain the in the lower part of back and around shouder blades. I wish we had a Chiari center around here but can only find some out of state. I have trouble walking for very long at all. I hope I find some answers this week too. I am trying to take care of 3 kids while and can hardly move. Praying everyone can get some relief soon. So glad I found this site with people who know what I am going though and how I feel.
Praying for you all
Hello my new friends,
I asked my doctor to see my scans. My son was with me so I had someone to view them with me in case I forgot some things the doctor said. But I saw where the Chiari was at. The way my doctor explained it to me is that my skull isn't large enough. Does that sounds right?
--jess
Carla Jo Stone said:
Hi Steff,
Don't panic! Your doctor may have reacted that way because he hadn't seen many cases of Chiari. I don't understand what he meant by a "brain herniation". That is what Chiari is - a brain herniation. How could they diagnose Chiari if they didn't see a brain herniation and note that in the report? I guess I am confused! I'm so glad you asked him to look at your scans with you and I am glad he is ordering more testing. I know going thru all the tests is tedious, but is best to have thorough testing done so you can lay all the cards on the table:)
Carla
dont believe that, your whole spine can be effected,
Tara Wallace said:
Hi
I also have problems with my back. Pain in between my shoulder blades and burning. I have had a cervical and lumbar MRI but never a thoracic MRI. I was told by my NL that syrinx typically doesn't form in the thoracic spine. I will be 4 wks post op from decompression surgery on Tues. the 17th. I have only experienced the pain in my back twice so hopefully as I continue to recover I won't have it again. Hope u get some answers soon.
Love and Gentle hugs,
Tara
ho jessica
that is correct, with chiari our brain starts descending into the spinal canal, there is apiece of undeformed bone which is smaller than it should be, when the brain hurnates(watch my spelling to lol) it put pressure and over crowding and in some cases fluid compression, thats why decompression is so effective, it gives the brain more room and relieves some if not most symptoms,
brain hernation is a good term to put it, if youir ever searching type that in,, you get some good info different then if you put in chiari,
Jessica Jeff Mullins said:
Hello my new friends,
I asked my doctor to see my scans. My son was with me so I had someone to view them with me in case I forgot some things the doctor said. But I saw where the Chiari was at. The way my doctor explained it to me is that my skull isn't large enough. Does that sounds right?
--jess
Carla Jo Stone said:Hi Steff,
Don't panic! Your doctor may have reacted that way because he hadn't seen many cases of Chiari. I don't understand what he meant by a "brain herniation". That is what Chiari is - a brain herniation. How could they diagnose Chiari if they didn't see a brain herniation and note that in the report? I guess I am confused! I'm so glad you asked him to look at your scans with you and I am glad he is ordering more testing. I know going thru all the tests is tedious, but is best to have thorough testing done so you can lay all the cards on the table:)
Carla
Hi....
I have cervical spine issues..which required 2 fusions....NS thinks that is from the Chiari...I do have occational low back pain...nothing shows up on the MRI....So, I am pretty useless to you as far as input...sorry.....however, the gals who wrotte b4 me are super informed.
Welcome to the site.
Peace,
Lori
My husband has chiari I. He has had 3 back surgeries and his spine is degenerating fast. Since our doctors don't seem to know much about this Chiari, I will ask here is this maybe caused from Chiari?