Does anyone feel like they have had learning problems from having Chiari? Maybe you feel like you learn slower? or like you have trouble comprehending things??
Hi Kaleigh! Yes, I have problems retaining things also. It hasn't always been like that for me though, I never had problems in school. Reading comprehension used to be a breeze for me and now I find myself going over things again and again. I have some short term memory problems but mainly long term problems.
In my case I'm not so sure it is the "Chiari". I think it can be more attributed to the meds I take and have taken for the past 10 years and I think the ones for pain play the biggest role! It is so scary and aggravating!
Do you take meds? or have any short/long term memory problems?
SparkyID7
I don't feel as sharp as I used to (over the years). I can feel myself not connecting within my head the way I should. I often have to read things more than once, and if its being read to me, forget about it. I don't know if its totally Chiari, but you're not alone.
no I am not on med's the doctor has perscribed them but because I do not want to be on them for the rest of my life I have turned them down,. I did well in High School, I finished mid in my class but I feel that within the last 2 years I have such a hard time learning what I have already comprehended and I find myself re-reading things, or even having a hard time remembering the past if its; people. or even memories I find that my memory drifts more so than it use to. I go to the doctor next Wednesday and I was not sure that I should tell my doctor or not I was not sure If it was chiari related. It makes me feel so much better knowing that I am not the only one.
I have always had learning problems,it has always been a struggle for me to learn,my confidence has been low.We all know that even from childhood for a lot of us there’s been that knowledge that things were not as they should be.As I look back on my life the chiari has always been there forever,it has cost a lot through my journey,but it has made me tough and I see lots of others that are the same.My surgery is 9months out and I still suffer some symtoms,I would not change my decision to have decompression it has caused a lot of good changes,of course I wish it was perfect,that’s not the case,this is the reality of it,there’s not a cure for chiari.I will go back to the NS in Sept.these symptoms are not new they have been there before,Ihave a wonderful Dr. so he’ll help to get to the bottom of this.I thank The Lord for this miracle after 28 yrs. of hell He has given me my life back,my confidence in myself is better because I now understand why things have been so hard, it is not our fault.We must send records to the former Dr.s who have dropped the ball because they need to stop the diagnosing this by herniation and listen to patients,learn from good specialist who know that this method is just wrong.My herniation was very borderline but Ihad acraniectomy,laminectomy,duraplasty,the tonsil was pressing on the brain stem.there is a few specialist who are recognizing a thing called chiari0 and it sounds like they are on the right track.
I did a lot of Research on Cognition, Intelligence and CM. I listed in on our "Let's do some Research Group. "
Intelligence is based on many different factors not just academic success. Chiari Malformations does not affect intelligence. Cerebellum damage and other brain damage can affect cognition. There are some great links. There is also differing cognition data for CM1 & CM2.
Hi,
Just reading some of those comments and what abbey and Lynn said about looking back on childhood, having lots of headaches and trouble learning, well my daughter is just 6 years old and was diagnosed with chiari type 1 two years ago, she has 12mm hernation and gets 3-4 headaches a week, the occasional nosebleed and generally does not feel well in herself a lot of the time, she has awful mood swings and really struggles at school educational wise I just thought it was because she is the youngest child in her year, the Docters say all this is completely normal and I shouldn’t worry but I just have that nagging feeling that something isn’t right! as adults with this condition you would have suffered as children what do you think? Any advice would be greatly appreciated.
Kind regards Sarah
Speaking for my granddaughter who had chiari surgery 4 years ago....yes, she does have delays. She is in a special needs class in school because academically she is behind. She is now 10 years old and having the surgery has helped her balance and she has progressed with her motor skills , but she has a very hard time reading and writing.
Hi Kaleigh my 9 year old grandaughter was diagnosed with Chiari 0 Malformation , as well as Syringomyelia, Scholiosis severe and wears a brace 16 hrs aday. This all took place last year and due to the fact of the two syrinx ( Syringomyelia) in the cervical and thorasic areas of her spine that were fairly large and the crowding in the back of her head /brain it was decided that she should have the decompression surgery ASAP ( it was done in late Aug/12 ). She was also diagnosed with ADHD ( her older sister has that as well) and I have been told that there might be a correlation with the Chiari and the ADHD, but anyways she has an I.E.P. at the school and struggles academically. So I don't know if the Chiari could be causing the academic issues or the ADHD, she is also extremely spacey daily from the time you wake her up, until she goes to bed at night. I have decided to have her evaluated for a sleep study ( over night) as she crys constantly telling me that she is so tired each and every morning , no matter how early she is put to bed. I know that this also can cause the lack of focus that she has academically and at home as well, as it would with anyone I believe. She has had a follow up and an MRI to check her syrinx ( this was done in Jan/13 ) but though the NS seemed not to be bothered by the increased size of the syrinx ( the intent was for them to go down after surgery ) I am bothered by this fact, so I have requested another MRI of her complete spine and a consult with her NS after, so I can see now at a year after her surgery if the syrinx are now decreasing in size finally. I am concerned as her headaches are starting to return, her frequency of urination has come back with a vengance, her mood swings are unbelieveable, and so on. Oh yes and in reviewing her original paper work, the herniation that before surgery we were told was 6mm, was in fact found to be slightly larger after her surgery was done. This size perhaps doesn't seem very big, but I now know that the size is not the determining factor. What I do know is that I have observed how the Syringomyelia ( syrinx ) Scoliosis has completely twisted her poor thin little body into a pretzel,forcing one shoulder forward and the other back as it also pushs in severely on her ribs on one side and out on the other side. It even effects her breathing ( she thinks it is because of the Boston Brace that she is forced to wear), but during the time when she is allowed out, of it just a few hours each day, she still has trouble breathing.. I have watched a little girl that used to run, jump and climb the monkey bars and hang upside down, plus climbing our door casings , who no longer does any of this and has such yelling, screaming outbreaks of temper, acts like a little maiden aunt, feels the cold all the time, doesn't like bright light or loud noises or music. And sporadically shows glimpses of smiles of the little girl that once was.........life with Chiari , Syringomyelia, and Scoliosis for her really suck..........I don't know whether any of this info will help you, but thought I would share this, by the way she and her sister live with me. :)
I’m not sure where you live and if the NS your granddaughter sees,but I will still say if the NS is not a specialist in the chiari field it might be worth looking into and traveling if need be.There is a specialist here in Hendersonville,N.C.that is the best in my opinion.This surgeon has patients from all around the country and sometimes other countries.This little girl needs to have a specialized Dr.and maybe the one she sees is a good one.I could not help but to cry when I hear of a child suffering,it has been long and hard journey for me,but when it comes to a child having to go through so much,if you could get here you would have help while here from myself.The NS’s name is Dr. Micheal Rosner.he has been scrutinized by many and as for my opinion it is probably other Docs.s is no cure for chiari some patients are not going to get good results no matter who does their decompression,mine has not been perfect,but I feel I have one of the best NSs any where.
Hello Grammie and Sarah,
Both of you have helped and I am so relieved that ya'll were able to share your stories with me. I am only 20 years old, and I was not diagnosed with Chiari until I was 15. I had not had any real big "symptoms that would have made me think that I needed to get checked for anything. My symptoms contained at the age of 9 me not being able to swallow for 5 months, and I was never sure why I was eventually put onto a feeding tube and that was only because I was not sure what was wrong with me. I was a kid and I was scared and I did not tell my parents. At the age of 12 I failed my test for school that would allow me to move onto the next grade 3 different times and It was only because I could not comprehend anything I had learned that year, and from then on I was not able to take i any information like the normal child my age. I had a terrible cheer accident where I was dropped from a pyramid at the age of 15 and I had a concussion for 3 months and the doctors had no idea why and that Is when they found my chiari! Now that I am in college I will admit I have failed out because I can not keep up. I am going to talk to my deen and see what possibilities there are for me. I am not using my chiari because it has taken a lot for me to admit that I have been struggling and not feel like I am the only one. It feels a whole lot bettering knowing I am not the only one, and to know there is hope for the future!
Ofcourse, Chiari plays a role on maintaining alot of what you've learned in your memory bank. I for one, live with ACM and I've earned a Bachelor in Liberal Arts, majored in Psychology. If you ask me some questions from the text book, I might not remember.
I did very well in school, when I put my mind to it. I actually graduated hight school with honors in the top 25% of my class. But I always had trouble concentrating. I never had headaches until recently (11/12), that's when most of my symptoms began. I tried to take college classes a few times throughout the years, and I could never get through them. Mainly because of, what I thought was, anxiety attacks. I had enormous amounts of pressure in my head all the time. Especially when I was in an uncomfortable situation, or sometimes randomly. I had to drop out of all the classes that I took. I have a pretty good long term memory, but lately my short term memory is shot. I cannot keep my focus either. I start things and then get distracted immediately to something else. I have had to start making lists and doing little things to make sure I remember important things.
I just started taking new meds (Neurontin), which have made me a little more "clouded". I'm hoping that things will level out soon, so I can start feeling a little better. I'm wondering if I haven't always had ADHD or ADD. I have a strong feeling that I did, or do now. I have never been able to follow through or finish anything that I have started. I get bored easily with things, or get distracted by something else. (example- crafts, home improvement projects, classes, etc.) I wonder if the Chiari has played a part in all of this.... interesting...
If that is the case, then that would explain why I have to read, and re-read to comprehend things. Was even like that as a kid. Frustrated the heck out of my mother when I was a kid cause she didn't understand why it took me forever to comprehend or learn things. I still have to re-read things sometimes to know what I just read. Slight brain fog. lol
Hi Lynn we live in New Hampshire and as both of my grandaughters ( live with us) are on state medical coverage ( if we had to pay out of pocket it would financially devastate us ) we are limited to where we can go for medical care. She is seen by a Pediatric NS at Dartmouth who specializes in Chiari. I have now requested that another MRI of her complete spine be done ( it is now scheduled ) with anesthesia for August, with all of her symptoms returning and some new ones as well I feel it is essential that we know what is happening with her two syrinx. After the MRI we meet with the NS and I will be requesting to have the prior MRI as well as the one from that day to view side by side and than discuss what we find and what will be done. If they are worse and the NS still feels there is no reason for concern, THAN I will be looking towards Boston Children's for another opinion, as I know how serious these syrinx can be and what permanent damage can be caused by them. I will also be asking for an overnight sleep study to be done to determine why she has the extreme fatigue and brain fog. Thanks so much for your kind words of comfort and support, God Bless Kathy
Lynn Messer said:
I'm not sure where you live and if the NS your granddaughter sees,but I will still say if the NS is not a specialist in the chiari field it might be worth looking into and traveling if need be.There is a specialist here in Hendersonville,N.C.that is the best in my opinion.This surgeon has patients from all around the country and sometimes other countries.This little girl needs to have a specialized Dr.and maybe the one she sees is a good one.I could not help but to cry when I hear of a child suffering,it has been long and hard journey for me,but when it comes to a child having to go through so much,if you could get here you would have help while here from myself.The NS's name is Dr. Micheal Rosner.he has been scrutinized by many and as for my opinion it is probably other Docs.s is no cure for chiari some patients are not going to get good results no matter who does their decompression,mine has not been perfect,but I feel I have one of the best NSs any where.
Hi Kaleigh it is very frustrating to not have answers and feel as if you are alone in all of this, but know that you are not at least online LOL ( air hug inserted here ) LOL What is so terribly frustrating is to know that Chiari once refered to as a rare condition ( and no longer is ....thousands suffer with it all over the world) is still not excepted as a disabling condition and hence listed as a disabiltiy with each state or government. Perhaps if all of the elected officials that make the decisions of whats included ( including the President of the United States) could either themselves or their loved one have this and have to go through brain surgery ( not always just one time either) and know that there is no cure and that it can be life threatening, perhaps than we would have laws, policys, in place to protect a person from childhood through adults with all that they must endure on a day to day basis. I have become so frustrated with ( forgive me the ignorance of people ) when trying to have them understand what my grandaughter goes through every day, most have no idea what you are talking about ( some really don't care either) or they assume and refuse to except that now that she had brain surgery she is " All better" " Back to Normal" or the clincher " CURED" Wake up call people " there is no cure" and if we don't get those people that decide for us on board with all of this, tragically there never will be. But than again look what a horribly callous attitude is taken with childhood cancer versus adults.......there is nearly no ( O) research, treatment plan done to address a child's cancer which is so very different from an adults, did you know this any of you? I didn't know this and the pure inhumanity of it shocked me, children are given medications, treatments that are given to adults instead. It took a young child dealing with cancer themselves ( and who just recently loss their battle with cancer and died) to tell people about this atrocity, we should all be outraged by this information, so is it any wonder that something like Chiari is not even being considered important. Thank God for those doctors out there who do care and continue to help people dealing with Chiari and Syringomyelia,but there are far to few and all doctors should have knowledge of it and be willing to do test to find out what it can does, how serious it is, how much pain it can cause, how to treat it effectively, and encourage more research be done to help find a cure. I wish you the best on your journey through Chiari :)
Kaleigh Rae Christmas said:
Hello Grammie and Sarah,
Both of you have helped and I am so relieved that ya'll were able to share your stories with me. I am only 20 years old, and I was not diagnosed with Chiari until I was 15. I had not had any real big "symptoms that would have made me think that I needed to get checked for anything. My symptoms contained at the age of 9 me not being able to swallow for 5 months, and I was never sure why I was eventually put onto a feeding tube and that was only because I was not sure what was wrong with me. I was a kid and I was scared and I did not tell my parents. At the age of 12 I failed my test for school that would allow me to move onto the next grade 3 different times and It was only because I could not comprehend anything I had learned that year, and from then on I was not able to take i any information like the normal child my age. I had a terrible cheer accident where I was dropped from a pyramid at the age of 15 and I had a concussion for 3 months and the doctors had no idea why and that Is when they found my chiari! Now that I am in college I will admit I have failed out because I can not keep up. I am going to talk to my deen and see what possibilities there are for me. I am not using my chiari because it has taken a lot for me to admit that I have been struggling and not feel like I am the only one. It feels a whole lot bettering knowing I am not the only one, and to know there is hope for the future!
Hi Lynn I did want to let you know that though my grandaughter's Pediatric NS may not be as informed as I would wish, he was always compassionate, respectful, thorough in explaining things in each consult ( before and after surgery) soft spoken and never harsh or judgemental towards us. I just feel like there are so many doctors out there that truly do not understand Chiari and Syringomyelia and all the ramifications of these serious conditions. This I blame on training, not the doctors themselves, plus again the lack of research having to do with these. We all know having started this journey exactly how all consuming and overwhelming this all can be, imagine a doctor being confronted with someone that has it or has not even been diagnosed with it ( my grandaughter's was found by accident) and not knowing what else to do other than medication or surgery and being mistakenly trained to believe that though not a cure, it will make a better quality of life ( which it quite often not only will not make it better, but makes it worse if done incorrectly ). So I do understand how a doctor must feel, just not the uncaring, callous, pompus ones that refuse to admit they are wrong or that your symptoms are very real ( by the way her NS is not any of these, he is caring and a good doctor ) the old saying " You are only as good as the one that taught you" is perhaps the mind set, but perhaps it is time to push beyond that and challenge theories that have been in place for so long and explore other thoughts with substance for answers. What do you all think?
Lynn Messer said:
I'm not sure where you live and if the NS your granddaughter sees,but I will still say if the NS is not a specialist in the chiari field it might be worth looking into and traveling if need be.There is a specialist here in Hendersonville,N.C.that is the best in my opinion.This surgeon has patients from all around the country and sometimes other countries.This little girl needs to have a specialized Dr.and maybe the one she sees is a good one.I could not help but to cry when I hear of a child suffering,it has been long and hard journey for me,but when it comes to a child having to go through so much,if you could get here you would have help while here from myself.The NS's name is Dr. Micheal Rosner.he has been scrutinized by many and as for my opinion it is probably other Docs.s is no cure for chiari some patients are not going to get good results no matter who does their decompression,mine has not been perfect,but I feel I have one of the best NSs any where.
Yes definatly in fact I'm 35 and I've lived in reno since I was 19 since my surgery I don't remember my way arround even its so embaresing
YES!!! This is such a hard issue for me at the present time! I kept telling my Neurologist over the past year+, I have felt myself deteriorate mentally: I had to drop out of my real estate program @ school twice now because I could not even begin reading let alone comprehending anything; my migraines intensify if I try to read, write, watch tv or just trying to comprehend things; spelling is becoming more difficult for me each day. I am permanently disabled but this is scary because it seems like I am becoming lost. I am only 42 years old but my memory is getting worse.
When I can, I try to stimulate my mind but I have to deal with pain it causes too.
Comprehend ? Whats that?. ..LOL.. That;s how Bad it's been