Aa
Does anyone esle have kinking or notching at the cervicomedullary junction?
Just wondering if anyone else has seen this in their MRI reports. You know, none of the doctors ever mentioned it, and Just wondering what it means? I know this would be better answered by a dr. , but just wondering if anyone else has it and if so, did the dr. ever tell you what it means? Cant find any info on it.
Don't worry too much about the MRI reports. If you have symptoms that are troubling your life and it has been confirmed that you have Chiari malformation, then your next step is a neurologist or neurosurgeon who is a chiari specialist. My PCP saw my radiologist report and said "it's only 5mm, no big deal, you can live with it." Then he told me to take claritin-D. All I could think was "wow, this guy has no idea." So I called the Chiari Institute and sent my MRI's to them. They asked for more MRI's as well. I read those radiologist reports just for kicks. It said my tonsils were 6mm descended and that I had no other cervical anomalies. I clearly have an incomplete C1 and a retro-flexed odontoid and about 2 weeks earlier they said I was 5mm. Basically what I'm trying to say is that the specialist will look at your MRI themselves :)
COMMUNITY LEADER
There r a few pics of DD in a tap # in my profile...not sure if u saw those...or know which one she is....
I was also in a MVA my JR yr of HS....it made my HA's worse....I was sent to a shrink and put on pain meds...I wanted to go to college, never got beyond the orientation....I got married instead...lol...
If u need help locating that link let me know : )
I had never heard of the non profits that fly to appts. I am DEFINTELY going to be looking into that. I just figured that TCI was "out of my league".
I have to say that tappers rock...lol ! What an awesome experience to have been in theathre in NYC !!! and the relation to it personally for you and her!!!
I was in NYC when I was 10 to be on the Rholonda show for pageants and dancing, and we had the same type of treatment...limos ...hair and makeup//LOWES hotel, all the good stuff, I have to say it was so COOL !!
My DD was on the stage at her 1st review at less than a year..lol. Since my sis n law and mother n law own the studio they would have it no other way. I always thought it was really neat how my husband and I's past intertwined the future with our dance history ! I ask her all the time, do you still want to dance, and her answer is always YES YES YES !
I would have given anything to be able to attend a school of that magnitude. But I was bery sick my senior year and did not attend school very much which limited my choices. Kept passing out and having headaches. (Dr's called it anemia) I had also gotten in a bery bad mva my junior year that adjitated my scoliosis so I finished school, with good grades but due to the amount of school I missed wasnt allowed to graduate with my class. So, my scholarship to NWS was taken away.
I have to say that tappers rock...lol ! What an awesome experience to have been in theathre in NYC !!! and the relation to it personally for you and her!!!
I was in NYC when I was 10 to be on the Rholonda show for pageants and dancing, and we had the same type of treatment...limos ...hair and makeup//LOWES hotel, all the good stuff, I have to say it was so COOL !!
My DD was on the stage at her 1st review at less than a year..lol. Since my sis n law and mother n law own the studio they would have it no other way. I always thought it was really neat how my husband and I's past intertwined the future with our dance history ! I ask her all the time, do you still want to dance, and her answer is always YES YES YES !
I would have given anything to be able to attend a school of that magnitude. But I was bery sick my senior year and did not attend school very much which limited my choices. Kept passing out and having headaches. (Dr's called it anemia) I had also gotten in a bery bad mva my junior year that adjitated my scoliosis so I finished school, with good grades but due to the amount of school I missed wasnt allowed to graduate with my class. So, my scholarship to NWS was taken away.
COMMUNITY LEADER
Did u check the non profit groups that will fly u to ur Dr appointments?.....go to the Health Pages and look for the page titled Links....Angel flights is one u may want to look into...and many of the chiari drs have a location for patients to stay at reduced rates......TCI has Variety House...and I know some of the others have places too.
My DD was a tapper as well...she performed in a theater in NYC on 42nd St....which was sooooo cool , bcuz of the musical 42nd Street is about a girl from Allentown , PA and that is where we r from....so it was very cool and she was paid...we went to Sarde's afterward and they gave her the Actors menu....the royal treatment....very cool : )
She is in NY for the past 5 1/2 yrs...she got her masters at NYU for Dance ED,
Aww my DD started dancing at 2 1/2...she wanted to do it and saw it on TV and I could not talk her out of it....lol....
I have contacted some of the doctors on the list, and I havent found anyone that I can afford to travel to. The one that is listed in Baton Rouge on here no longer practices or moved I guess, because nobody has heard of him and the number is another drs office now. I did find one here in new orleans at tulane, but he is the one that doesnt take my ins. I am trying to get in with his associate that does take it though, and then he will be available for her to consult with on my case.
Tap will always be favorite !!! I also took ballet and jazz as well as lyrical and hip hop <<<not my fav though. I taught for a few years before I got married, and then danced at my sister in laws studio for a few years after that. I used to compete all over the u.s. and it really is my passion. Sometimes a combonation will just come to me and the next thing I know I'm all dizzy and have to sit down because without thinking I jsut started dancing.
In NYC!!!! That is AWESOME !!!!!!!
My uncle taught ballroom in NYC for a long time.
My DD dances now and she shares the same joy for it that I do. In class this past saturday she learned a 4 -8 count combination and she picked up after the first try! She is only 3 1/2 so I am super proud of her :)
Tap will always be favorite !!! I also took ballet and jazz as well as lyrical and hip hop <<<not my fav though. I taught for a few years before I got married, and then danced at my sister in laws studio for a few years after that. I used to compete all over the u.s. and it really is my passion. Sometimes a combonation will just come to me and the next thing I know I'm all dizzy and have to sit down because without thinking I jsut started dancing.
In NYC!!!! That is AWESOME !!!!!!!
My uncle taught ballroom in NYC for a long time.
My DD dances now and she shares the same joy for it that I do. In class this past saturday she learned a 4 -8 count combination and she picked up after the first try! She is only 3 1/2 so I am super proud of her :)
COMMUNITY LEADER
Have u looked at the list of Chiari drs we have?....I would suggest researching Drs to find one that is a chiari specialist and works with ur ins.....
But, getting one that is well experienced with chiari is key!
Oh really.,..what type of dance?...Ballet and jazz, tap...??
I used to take a few classes in fact I was going to swing dance every Tues and had to give it up as I could not be on my feet....
Thank u...my DD is my pride and joy....she teaches dance in NYC.....so I get to go visit her and go to shows every now and then : )
"selma"
unfortunately no, thats where the struggle has been. I have completely restarted the dr finding process because all of the drs have just told me either its no big deal, or that Im making things up. I dont understand the whole making it up thing, I mean its right there in black and white. The pcp I am seeing tom. was the one that started the MRI process, so I am hoping that he wont take me lightly. I have done the research for the NL and have the name for him to refer me. I am also taking backup ( My mothers best friend )( My person ... as I call her) tomorrow. PLease...DONT be sorry Selma...you have been MORE than just helpful, you have really taught me alot.
I did notice however that your DD is a dancer. I have been dancing for the last 23 years !!! I love to dance, and Chiari has in the last 2 years ripped it from me. I can no longer spot or do any jumps, turns, or fast paced movement without passing out. Your DD is beautiful !!
I did notice however that your DD is a dancer. I have been dancing for the last 23 years !!! I love to dance, and Chiari has in the last 2 years ripped it from me. I can no longer spot or do any jumps, turns, or fast paced movement without passing out. Your DD is beautiful !!
COMMUNITY LEADER
I would say the deformity of the posterior odontoid is an issue for u....
Since it does not say it is retroflexed, I am not sure what deformity u have....but just being shown how mine affected me, I know the odontoid is an important area that can greatly affect us and non chiari specialists do not always look there.
The pointed inferior configuration could refer to the shape of the tonsils....sorry, but I am not sure.
Have ne of the drs been a chiari specialist?
No, its probably me....I have been "off" all day. Even called my DH a hamburger. In your last post you mentioned a retroflexed odontoid and overcrowding (csf obstruction)....I think I was trying to see if the retroflexed odontoid and or the overcrowding could be what my MRI report refers to as pointed inferior configuration ....or the deformity of the posterior odontoid. My Mri mentions both ....I just always assumed it was no big deal because none of my drs ever reffered to it.
COMMUNITY LEADER
Sorry, not sure what u r asking???...It could be me...so, no worries...just please re word as I can not wrap my brain around what u asked...thanks.
so, would that be what the whole pointed infrerior configuration would be on the Mri ? or the deformity of the posterior odontoid? Sorry so many questions....jsut preparing for the dr visits in the morning
COMMUNITY LEADER
The retroflexed odontoid will be in part of y u have kinking...as that area is so much smaller as a result...when I say make sure u do not have a CSF obstruction or over crowding, by overcrowding I refer to a retroflexed odontoid....some Drs or radiologists us different verbiage to describe this issue, but in the end it is the same thing...and will cause issues regardless of how large or small a herniation u have...
yes, i have it too. mine says "cervicomedullary kinking of a brainstem herniation" on the report. ouch....
and my doctor didn't say anything about it either. mine is partially because of my retroflexed odontoid (which was not on the report, the neurosurgeons i spoke with pointed it out to me) so it puts even more pressure in that tiny "junction".
and my doctor didn't say anything about it either. mine is partially because of my retroflexed odontoid (which was not on the report, the neurosurgeons i spoke with pointed it out to me) so it puts even more pressure in that tiny "junction".
The pic was deffinitely helpful. This was on the MRi of neck from 2 years ago. It really makes me wonder since the one 6 months ago was only of the brain and the herniation was much larger...what exactly is going on in there, and if any synrix other stuff has happened. I am wondering if I should ask the pcp tomorrow for a new Mri so that I know exactly whats going on in there...well at least have it to present to the NL.
COMMUNITY LEADER
I would not doubt that the kinking of the brain stem is the cause of ur numbness,,.....the longer u have compression, the better chance u can have of this issue of kinking happening.
I was just glad I was able to locate a pic....I knew, what it was and where it was, but felt the pic might help u understand it better.
Oh selma, thank you so much. It does give me an idea looking at it and comparing it to my films. Wowzie...what a mess back there(in my head). Just after re-reading my reports...I started to wonder what it was. I wonder if that has anything to do with the numbness back there. It does help. You have been so supportive and so informative. I am so glad I stumbled upon this group. I truely and whole heartedly do not feel alone anymore.
COMMUNITY LEADER
Hi...many times compression can lead to kinking of the brain stem....or the cervicomedullary junction...this is the very base of the brain stem.
This is a topic we have discussed many times b4, but not all with chiari have this issue to contend with.
Not sure if this helps
"selma"
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
I found a pic and uploaded so u can see where this is ......
http://www.medhelp.org/user_photos/show/253817?personal_page_id=197028&photo_collection_id=20895