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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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620923 tn?1452915648
COMMUNITY LEADER

  Hmmm then you are not that far from me....

Good  luck and do keep me posted on your Dr search.
Helpful - 0
14494512 tn?1434829906
Hi Selma,
We live close to Philadelphia . It's Brookhaven, P.A but we usually travel to Wilminton, Delaware most of our Drs. imcluding our neurosurgeon is located inside Alfred I. Dupont Children's Hospital.... Thank you we are going to take a look into some of these Drs.
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620923 tn?1452915648
COMMUNITY LEADER

  May I ask where in PA you live?

We do have a list of Drs....some do not treat children, so I will let you know which  ones will....

There are specialists in NY and in FL that treat children.....and in MD.

A small posterior fossa indicates the skull is small which is what Chiari is....

Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga
· Dr. Rohit Verma
· Dr. Misao Nishikawa
· Dr. Sol Mora
· Dr. Amit Shelat
· Dr. L. Thierry Remy

The Chiari Neurosurgical Center@ NSPC
Dr. Paolo Bolognese  MD
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD  20706
(7830 Old Georgetown Rd. Bethesda, MD
301-654-9390

Dr. Eric Trumble
Director of Congenital Neurosurgery at the Walt Disney Pavilion at Florida Hospital for Children
He has double-board certification (adult and pediatric neurosurgery)
615 E. Princeton Street, Suite 540
Orlando, Florida 32803
Phone: 407.236.0006
Fax: 407.236.0007
http://www.neurosurgeons4kids.com/

For Delaware these are the only names but I am not aware of them or if they are true specialists......

The more you educate yourself on Chiari and ALL related conditions the better at knowing when you have the right Dr.
Helpful - 0
14494512 tn?1434829906
I just went onto her medical record and found this, this is the first finding of the "Chiari" I'm not to sure if this means it's actually Chiari or is it just like you said the herniation of the cerebral tonsils..

A small posterior fossa with herniation of cerebellar tonsils by approximately
9 mm is identified. The cerebellar tonsils are pointed in configuration with
moderate effacement of CSF spaces at the craniocervical junction.

Marked thinning of the Corpus callosum is again identified. Septum pellucidum
is absent. Brain parenchyma is otherwise stable in appearance..

Paranasal sinuses: Clear.

IMPRESSION:

Interval development of Chiari one with effacement of CSF spaces at the
craniocervical junction.
Ventricles are slightly less prominent in size as compared to the prior study.

   again thank you so much, I didn't know where else to turn until I located this thread.
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14494512 tn?1434829906
Thank you so much with your response. I'm going to start doing more research and try to locate other Drs. in our area who might specialize in Chiari . How would I know if a dr. in specialized with it? We live in Pa our daughter currently goes to a ns in Wilminton , Delaware. Thank you very much

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620923 tn?1452915648
COMMUNITY LEADER

  Hi....The hydro could have caused the cerebral tonsils to herniate....

Chiari is the malformation of the skull but too many Drs will call any herniation of the cerebral tonsils Chiari...when they are 2 different things.However, the symptoms can be quite similar and treatment would be the same as well.

The sacral dimple is usually an indication of tethered cord and yes, this is related to Chiari...in fact it is one more condition which can pull the tonsils down to herniate....and can also lead to scoliosis..

As I mentioned in your other thread, yes many with Chiari do have swallowing issues but I can not say that is why your daughter is having those issues but I could consider it a possibility.

I would encourage you to learn as much as you an about Chiari and ALL related conditions and research Drs....a true Chiari specialist should be able to help you with just about all the issues your daughter is faced with.
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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
Avatar universal
I just read your post. I hope you have reconsidered surgery by thi time. My son had Giari surgery when he was 21 yrs old. His complaint were pain severe in his right arm and neck which was twisting to one side. He was told by a Chiropractor that she would not touch him after Xray was done. Referred him to a Neurologist. This doctor told us that nothing could be done to go live your life. And, although he made very negative remarks about the claims made by Stanford Hospital regarding their ability to fix this condition.....he suggested we try  long to short,
that was 25 years ago! He was the first compression, removingthe back portion of top two vertibrae, opening the foreman and the used a donor dura. There was therefore no shunt required. In one month the cyst in his spinal cord was completely drained! We were soooo happy and relieved.
His life is normal, he still has some residual pain in his arm. He is a very active man living his life!
So please rethink surgery...find university hospitals that have these expertly trained specialists. It seemed that, 25 years ago , neurologists had attitudes on this due to lack of knowledge. I was told that a physcian may come across a giari patient once in his or her entire practice. Good luck and God bless.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

This is an older thread so you may want to post on a more current one or create  a new one.....

Many of us do have continued symptoms and issues post op as surgery is not a cure and so many of us do have related conditions....EDS being a connective tissue disorder could be a cause for your disk issues....

And a disk that is bulging can cause the same disruption to CSF flow and create many of the same symptoms we had prior to decompression....

I am not sure if a CT would show everything....it really depends on the strength of the machine and the slices and or angles they took....

Is this a spine specialist?
Helpful - 0
Avatar universal
I had decompression surgery for Arnold Chiara Malformation in 2007 and now am having really bad headaches with nausea and spells of almost passing out.  I had neck surgery on 2 ruptured discs in 2009 and in 2011 a MI showed the disc below those was bulging and there was restricted csf flow.  My neurologist just wants to a CT scan which I had one last week at the ER and nothing showed up.  Will a CT scan show anything?  Frustrated
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi  and welcome  to  the  Chiari  forum,

  I  would  suggest  more  testing....even  tho  your  herniation  is  small, the  issue  is  is  it  creating  a  CSF  obstruction.,..??  Chiari  and MS  have  many  similar  symptoms  and  it  is possible  to  get  a Miss-DX  or  have  both.

  It  is  also  possible to  have  other  related  conditions  to  Chiari  that  can cause  many  of  the symptoms  even  if  the  herniation  is  not  causing  an  obstruction....Syringomyelia, Ehlers-Danlos,  ICP, POTS, sleep  apnea,  and  a  few  others....and  we  get  a  DX  of  chronic fatigue, and  migraines....

We  are prone to auto  immune  and connective  tissue  disorders....

May  I  ask  what  area  you  live  in?
Helpful - 0
Avatar universal
I just had a cervical MRI and one of my spine.  I recently had surgery on my back and neck, and I'm still having pain both places, so he sent me for MRI's.  I also was experiencing numbness in my calves and feet.(Mostly in my left foot.)current  First of all you need to know that I had laser surgery which is minimally invasive. Well, I have a recurrent disc protrusion in my lower back.  In my neck there is a development of a left paracentral disc protrusion at c5-6 contacting and minimally indenting the ventral margin of the cord.  Also what I found very interesting was a minimal cerebellar tonsillar ectopia measuring 2 mm.  I know that's small, but I have read that it doesn't matter how badly herniated they are for the symptoms your having or not having.  I have been having all kinds of symptoms for a very long time.  I was diagnosed with fibromyalgia many years ago and I'm not even sure when I was diagnosed with chronic fatigue syndrome.  I haven't been sure that I really have fibro. for a long time.  To be honest, the more I talk to other people with it the less it sounds like me.  I really thought I had MS.  I had a brain MRI and it show two areas of white matter measuring 3 mm. but my neurologist believes they were caused by my migraines.  I also have a brain aneurysm that I need to get checked every 6 months.  I have no idea what if anything caused that.  But when  I started reading your question and answer forum, WOW!!  This really sounds like me too.  I don't know what to think.  I'm afraid my husband is going to think I'm crazy.  But, the doctors in our area stink!!!!!!!!!  And if I don't do my own research I feel like I will never find out what's wrong with me.  I have also been extremely weak off and on the last four years, but it's getting progressively worse.  These doctors are doing nothing to help me, and I have three children to take care of.  What do all of you think?  I am 44 years old.  I have always taken good care of myself and sometimes I think that works against me, because the doctors take one look at me and think she's not that bad.  I don't know what to do.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Those of us with Chiari are prone to auto immune disorders and connective tissue disorders.,...those can be checked with blood panels....as well as malabsorption of vitamins and minerals....

Which can lead to anemia....and I had been told many times over the yrs this was an issue for me...so I always have B12 on hand....and I try to eat more things with iron as taking iron is too hard on my system as I also have IBS.
Helpful - 0
Avatar universal
Hi.. my question is..... in anyone's experience what have you learned to look for when reading your blood work?
Does anemia go hand in hand with chiari?
Does your immune system respond to chiari?  

I feel that there is something else underlying with my daughter and I don't know where to begin to play detective.
(as I have mentioned-no insurance)

thank you,
Cindy
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Avatar universal
thank you Selma for all the definitions.
im taking lots of notes
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620923 tn?1452915648
COMMUNITY LEADER

I see you figured out how to use the forum a little better and I had the other question deleted.....

It can be very difficult to get Drs to listen so then it can be even harder for family and friends to listed and believe...as it is an invisible condition, they can  not see it, therefore it does not exist....

Where are you from, as I might be able to direct you to some Drs to research for your area....finding the right Dr is key and that does not mean a Dr that has heard of Chiari...but one well informed and experienced.
Helpful - 0
Avatar universal
Thanks. I'm not the only one. Have actually been having symptoms for 1 1/2 years but no one seemed to believe me. Now that it has gotten much worse they are starting to take me seriously. The ears ringing is one of the worst because it never goes away. Just keeps getting louder
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

  Yes to all of them.....not my knees so much, but my ankles......

The lights going off then back on is just how my NS described the drop attacks I had, when CSF  gets obstructed it is like a switch is turned off then back on...it is so quick you are not aware it happens but with a drop attack you may be mid fall when it comes back on and wonder why you are falling...what you are feeling may be very similar but not a complete shut off so you are feeling it....

I hated the eye twitching, it could go on for days at a time...and the ringing in the ears....I am always asking ...do you hear that....lol...no one else can of course...but there are times it is so loud I think it is from outside my head,....lol..

Know you are not alone....if your MRI does verify Chiari then educate yourself on it and ALL related conditions and research Drs, having the right Dr is key !!
Helpful - 0
Avatar universal
Just had ct revealing chiari malformation. Been having pressure from back of scull. Dizziness. Weakness. Gets worse as day goes on. Also have strange sensation like my brain is going to just shut down. Like when the power almost goes off but then comes back on during a thunderstorm. Does anyone else have that? Also feels like i am moving when i am sitting. Have mri scheduled tomorrow morning. Hopefully will get more answers. Have many other problems. Eye twitching ears ringing trouble concentrating nausea and intestinal pain. Anyone else have these?  Oh and knees buckling
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