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stage 1 of chiari malformation does it get worse

type 1 chiari malformation, does it get worse and is it heredity?
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14494512 tn?1434829906
my daughter was born april 23rd of 2014. When in utero she was diagnosed with hydrocephalus and had 2 surgeries for the hydro, she had her shunt placed during the second surgery.. In November of 2014 she was diagnosed with Chiari type 1. Well she is 15 months and was just diagnosed with delayed swallowing and dysphagia. Her developmental Dr. thinks her dysphagia may be caused by the Chiari but her neurosurgeon told us when she was diagnosed with the chiari that it wouldn't affect her at this time but maybe as she gets older... At birth she was kept over in the nicu due to not eating and blue spells which we thought maybe because of the hydro. Her chiari was 9mm in November of last yr. is that big? Could she of had this at birth and it went unnoticed due to the csf build up? Could this be causing her swallowing issues? Her surgeon is great as a surgeon but he doesn't explain anything to us even when he is asked to, I feel he specializes more with the hydrocephalus than the chiari. Could the Chiari of caused the hydrocephalus?She also at birth had low conus of the spine and a sacrum dimple is this in anyway related to Chiari? We now have so many questions since we are now being sent to different Drs. trying to figure out why she is having swallow difficulties...Thanks in advance for any help!!
Helpful - 0
12573102 tn?1431701617
Hi & sorry to hear that you and your sister are dealing with this.  Sounds like you have some symptoms that maybe related conditions like POTS & tethered cord.  Have you been checked for related conditions (Selma will be able to explain these conditions much better than me) since Chiari patients unfortunately have them often.  I am almost 3 weeks post op of my 2nd surgery because I had a sneezing attack 5 weeks after my decompression surgery.  Unfortunately for me I had to have 2 brain surgeries within a 9 week period, but it has still been worth it thus far because I feel much better than before my surgeries.  I actually had trouble walking (had to look at my feet or I would get off balance)........I can now walk normally since surgery.  I will keep you in my prayers that your surgery goes well & wish you a speedy recovery!!  
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Avatar universal
Hi! I have been reading a lot of stories of people that have Chiari malformation on here. . So I thought that I would share my story. It started back in July 8 of 2014. I woke up with a very sore knot in my back. It didn't go away I didn't do anything with it for maybe three weeks and finally couldn't take it so I went to a chiropractor where I was told that I had three bulged disks in my C-5 c6 and  C-3. I chiropractored every day for a couple weeks and then I went to three times a week did this for a very long time and nothing worked went to a pain specialist and did the shots and they didn't do anything had pain medicine but didn't take it. Made appointment with a neurosurgeon and they found it right away on my MRI. Had many more MRIs had one with the contrast had a few more appointments with him as these were months apart because he is very very busy because he has a very wide practice but he is a very good surgeon. Told me that I would need to have surgery and I am waiting next Friday I have my decompression surgery. The funny thing is though is that I never had headaches which amazed him.A lot of these symptoms that I see with peoples stories I do not have praise the Lord for that. But the major thing for me has been that I have not been able to sit down in a chair or any kind of sitting all these months for nine months. I never hear that symptom of anybody having. When I sit it goes straight up my spine and puts pressure on my neck and my shoulders very bad burning feeling and aching. Also now my limbs are starting to burn bottom part of my legs the bottom part of my arms very bad and I had to get on gabapentin and I'm on 1800 mg a day. That helps with the burning. I do have the head rushes the ringing in the ears and I've had the bad dizzy spells and almost passing out spells and the heart racing. I've lost my voice completely for a couple days this happened a couple times. When I read on here all stories it helps to make me feel like I'm not alone. My sister has just been diagnosed with this also my mother had scoliosis so we wonder now if she did have it? She has passed now. My sister is just starting the process she has a sphinx so not sure what The neurosurgeon is going to tell her. I just would like to tell everybody that I read your stories and if I can I pray for them  it touches my heart because I know the pain that I've been in and they even have more pain  so my heart goes out to all of you Who are suffering. God Bless you all!!!
Helpful - 0
Avatar universal
Hi! I have been reading a lot of stories of people that have Chiari malformation on here. . So I thought that I would share my story. It started back in July 8 of 2014. I woke up with a very sore knot in my back. It didn't go away I didn't do anything with it for maybe three weeks and finally couldn't take it so I went to a chiropractor where I was told that I had three bulged disks in my C-5 c6 and  C-3. I chiropractored every day for a couple weeks and then I went to three times a week did this for a very long time and nothing worked went to a pain specialist and did the shots and they didn't do anything had pain medicine but didn't take it. Made appointment with a neurosurgeon and they found it right away on my MRI. Had many more MRIs had one with the contrast had a few more appointments with him as these were months apart because he is very very busy because he has a very wide practice but he is a very good surgeon. Told me that I would need to have surgery and I am waiting next Friday I have my decompression surgery. The funny thing is though is that I never had headaches which amazed him.A lot of these symptoms that I see with peoples stories I do not have praise the Lord for that. But the major thing for me has been that I have not been able to sit down in a chair or any kind of sitting all these months for nine months. I never hear that symptom of anybody having. When I sit it goes straight up my spine and puts pressure on my neck and my shoulders very bad burning feeling and aching. Also now my limbs are starting to burn bottom part of my legs the bottom part of my arms very bad and I had to get on gabapentin and I'm on 1800 mg a day. That helps with the burning. I do have the head rushes the ringing in the ears and I've had the bad dizzy spells and almost passing out spells and the heart racing. I've lost my voice completely for a couple days this happened a couple times. When I read on here all stories it helps to make me feel like I'm not alone. My sister has just been diagnosed with this also my mother had scoliosis so we wonder now if she did have it? She has passed now. My sister is just starting the process she has a sphinx so not sure what The neurosurgeon is going to tell her. I just would like to tell everybody that I read your stories and if I can I pray for them  it touches my heart because I know the pain that I've been in and they even have more pain  so my heart goes out to all of you Who are suffering. God Bless you all!!!
Helpful - 0
Avatar universal
Hi! I have been reading a lot of stories of people that have Chiari malformation on here. . So I thought that I would share my story. It started back in July 8 of 2014. I woke up with a very sore knot in my back. It didn't go away I didn't do anything with it for maybe three weeks and finally couldn't take it so I went to a chiropractor where I was told that I had three bulged disks in my C-5 c6 and  C-3. I chiropractored every day for a couple weeks and then I went to three times a week did this for a very long time and nothing worked went to a pain specialist and did the shots and they didn't do anything had pain medicine but didn't take it. Made appointment with a neurosurgeon and they found it right away on my MRI. Had many more MRIs had one with the contrast had a few more appointments with him as these were months apart because he is very very busy because he has a very wide practice but he is a very good surgeon. Told me that I would need to have surgery and I am waiting next Friday I have my decompression surgery. The funny thing is though is that I never had headaches which amazed him.A lot of these symptoms that I see with peoples stories I do not have praise the Lord for that. But the major thing for me has been that I have not been able to sit down in a chair or any kind of sitting all these months for nine months. I never hear that symptom of anybody having. When I sit it goes straight up my spine and puts pressure on my neck and my shoulders very bad burning feeling and aching. Also now my limbs are starting to burn bottom part of my legs the bottom part of my arms very bad and I had to get on gabapentin and I'm on 1800 mg a day. That helps with the burning. I do have the head rushes the ringing in the ears and I've had the bad dizzy spells and almost passing out spells and the heart racing. I've lost my voice completely for a couple days this happened a couple times. When I read on here all stories it helps to make me feel like I'm not alone. My sister has just been diagnosed with this also my mother had scoliosis so we wonder now if she did have it? She has passed now. My sister is just starting the process she has a sphinx so not sure what The neurosurgeon is going to tell her. I just would like to tell everybody that I read your stories and if I can I pray for them  it touches my heart because I know the pain that I've been in and they even have more pain  so my heart goes out to all of you Who are suffering. God Bless you all!!!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

The member you are addressing your questions to has not posted since and has not been an active member. If you would like, you can send a PM (private message) which will generate an e-mail to notify them someone is trying to make contact.

  I am impressed to the fact 25 yrs ago your son was able to 1- get a DX and find a Dr that knew what procedure to do...it is still difficult to know which Drs are remotely  educated on this condition and why this forum is here and why we have a list of Drs for members to use to research them.

So happy for your son that he is doing so well after such a long time.
Helpful - 0
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