This is a diff question to answer as it all depends on u, and how ur body responds to surgery if u do indeed have surgery and meds....some that have this surgery are able to go back to work with minimal restrictions, while others are not able to go back to work....
Do u know if u have ne related conditions?...ie- a syrinx, tethered cord, disk issues, ICP, sleep apnea, EDS, CSF obstruction and or overcrowding?
These are all important, and I urge u to get a few opinions b4 u decide to move forward with surgery as it is not a cure or fix, just a means to slow progression and restore flow.
U want to get the advice of a true chiari specialist...we do have a list here of the members Drs, and the list is not meant as a referral...just a means to help u get started with ur research to locate the dr that is right for u.
We have a 27 month old little boy named Noah. When he was born we almost lost him. He birthed so fast that there was no dr present and he came out head first with the cord wrapped so tight around his neck 3 times, he flipped heels over head and landed on his face. I was in the hospital but was not being listened to that i had to push. Anyways. He was unresponsive and didn't breathe for the first 20 mins of his life. He required oxygen and 2 shots of narcan before he was responsive. We noticed right away that something was not right with his eyes.. They were very large. We had many days of problems with his blood sugars in the hospital and had a hard time with feedings. Went home to discover that he was severly tongue tied and required his tongue clipped. He still even then could not suck after the clipping. I was unable to breast feed him and had to give him a bottle where the milk would just pour into his mouth as he could not suck for the life of him.. The drs were not worried. We also then found out as we had learned the sound from our first son (apnea and squeaky breathing) that he had tracheomalasia. He was otherwise a happy, handsome baby. When milestones were supposed to be getting reached and they were passing by the drs were still not concerned. He was not able to start solid stage one baby food till he was 11 months. Could not hold his head up at all until he was 8 months old. We then finally got an apt with a neuro at childrens here in vancouver, bc. They wanted to do an mri so we waited for the call. Could not sit till he was 14 months old. Did not stand untill he was 22 months old and started walking at 25 months. We then got the mri done and was told he had a chiari one. That was the only info we were given and told we would be contacted by a ns and have heard nothing since. He can not eat much of a variety of food. Yogurt, cheese, soft bread, bananas, mush food only. He chokes on everything if its not mush. He still has a hard time walking and falls alot. Hits his head often. He doesnt talk well but understands. He sleeps ALOT. Wakes at 9am and eats and is asleep again by 10am, sleeps till 1pm eats and plays till 3pm and sleeps again until 5pm, eats and plays till 7pm and puts himself back to bed and stays there. He complains of owie head often and has days where he has a hard time walking and has a few events of standing and falling over and not being able to walk at all for an hour or two. He drools like a leaky faucet. And he is tiny. He weighs 20 lbs soaking wet. His 7 month old sister is 25lbs. He is starting to get nosebleeds and I have no idea if this has anything to do with the chiari but i am getting scared. Here in canada it takes forever to get anywhere. He is a good natured sweet boy but throws tantrums on bad days and bangs his head and acts like a totally different child on his bad days. Any advice or information I should know would be appreciated. Thank you.
Make sure they rule out a syrinx in all areas of the spine, cervical, thoracic and lumbar....u also want to rule out sleep apnea, tethered cord, ehlers-danlos, ICP, CSf obstruction , overcrowding,and a few others but this is a good start....make sure u ask that the NS is experienced with pediatric Chiari patients.
The nose bleeds could be a sinus issue that can be associated with chiari...but do have him checked to make sure.
The mood changes on bad days is not uncommon for those with chiari, at different ages it is dealt with as best we can communicate, he can not, so the temper and banging his head is his way to tell u what is wrong.
Try to let ur DS walk around barefoot as much as possible as balance issues is a Chiari thing and walking barefoot gives a better connection with the floor....
Once u find the right Dr for ur DS u will see such a big difference in how he is treated and how he feels.
I hope this is helpful...we are always happy to welcome new members, but never happy for the reasons that bring them.
Noah can not wear shoes. If I put shoes on him he just trips and falls and cries. He is almost barefoot at all times or he has socks with grippers or he wears robeeze slippers so he can feel his feet. Also all the things you asked me to ask the dr about..can you go more into detal about what they are? Thanks.
Sure- a syrinx, is a cyst that can form on the spinal cord, it is a sac that fills with CSF fluid and most likely forms as a result of a CSF obstruction.A syrinx is primarily looked for in the cervical spine, but those with Chiari are known to have them in the thoracic and lumbar spine as well.
Sleep apnea- is when a person is awakened gasping for breathe ....it is something to be concerned about and do make sure he is tested...many with chiari have sleep disturbances....but to stop breathing is not good,.
Tethered Cord- is where the spinal cord and spinal column fuse at one point the spinal cord is not able to stretch and hang loose like it should as it is very tight...and can cause bladder issues, lower back pain as well as leg pain....
Ehlers-Danlos Syndrome- is a connective tissue disorder...the tissues that hold our joints in place are too lax, we can be hypermoble or double jointed with joint pain, easy bruising, and slow to heal...there are many types of EDS so this also need to be checked b4 ne surgery as it can affect recovery.
ICP- intercranial hypertension..also known as pusedotumor cerebri.....this is an excess amount of CSF, the body either over produces it or can not absorb it and it creates pressure.
CSF obstruction- CSF = cerebral spinal fluid...obstruction= blockage...this can be from the cerebral tonsils herniatining and blocking flow or a bulging disk can also block CSF.This will create the same pressure as ICP.
overcrowding- this can be the tonsils compressing the brain stem, and can also be the odontoid bone being retroflexed(turned the wrong way) making the opening at the foreman magnum smaller, and creating a CSF obstruction.
I am glad to hear ur DS goes barefoot as it is best for him with the balance issues...
Hi my name is Andrea,I have been suffering symptoms of chiari malformation for as long as I can remember.Severe spontaneous vertigo,brain fog all the time,confusion,severe neck pain on left side,constant pain at base of skull,uneven pupil size,facial pain,jackhammer in ears,constantly digging to find the right words to come out,the list goes on.I did not know anything about chiari or had even heard of it.Quite by accident my mother who is 58 had an mri,for something unrelated to this.They found a chiari malformation,even though she has never had any symptoms.She insisted I go to my doctor,knowing how much I have suffered for the last 13 years,and push for an mri.I am now 36,and 2 months ago I found out that I too have a malformation of 6.5.After years of feeling like I was not normal I finally have an answer.Good news or bad news at least I know i'm not crazy.Been waiting 2 months to see a neurologist,not fair.
Many times those with Chiari do not recognize symptoms as they always have had them and adjust to them, and they may never worsen.....and not all with chiari have a CSF obstruction....so not all r surgical candidates.
Please be sure to be tested for all related conditions and issues, and get in to see a true chiari specialist...and make sure th eNL is also well experienced with this as well,
my daughter has been experiencing severe teeth pain randomly for 4 years. i had taken her to the dentist, and pediatrition several times for it, with no answers. she is now 8 years old and has been having random severe headaches sometimes being woken up from sleep screaming in pain. i took her back to her doctor thinking she was having migraines.( however i did think it was weird that the headaches didnt last that long) they gave her an mri which came back with a 6mm cerebellar tonsillar ectopia. im going to see a neurosurgeon in a few weeks. since learning about all of this, so much makes sense now. she has always been very clumsy, falling down often. she still cannot ride a bike because her balance is so off. she is very weak. she complains of having to carry pretty much anything because its too heavy. ive always just thought she was lazy, and pushed for her to be more active. she is always tired. one night stands out in my head, a few months ago we went to the planaterium and our heads were looking up the entire time. she kept complaining that her hands were tingling. didn't think anything at all of it at the time, but now realize why. i guess the only question i have right now is will her symptoms get worse in time?
I am so sorry ur little one is having to deal with this and u along with her...it is not an easy journey to take.
Please make sure u see a few NS's b4 u consider surgery and make sure the surgeon is a true chiari specialist it makes a huge diff.
Also make sure u ask if they work with pediatric patients, not all will or do.
And make sure they test her for related issues including sleep apnea since she is waking she could be waking as a result of not being able to breath and not know how to communicate that....or be aware that is what is waking her....do have her tested.
In addition to sleep apnea testing for POTS, ICP, tethered cord, ehlers-danlos, syringomyelia, disk issues, thyroid, vitamin levels all should be tested.
We have a list of Drs posted that other members here have been to and liked, it is not a referral, it is just a means to help u start ur research...pediatric Drs r not noted on the list (sorry).
If u need ne help navigating the site please let us know : )
thank you. ive been reading all these posts from everybody, and seems very helpful. there is the chiari walk across america this saturday that i am going to and can talk to others there as well. this all just happened last friday so its all very new to me. i havent told her yet whats going on because i want to make sure i know for sure whats happening. but again thank you so much, this has all been very hepful
hi my son was diagnosed with chiari 1 malformation when he was 16 months old. he has had surgery for it and also a teethered cord. he still has a sack of fluid on his spine. he also had heel cord surgery shortly after. he was born with a club foot and during the process of taking care of it and nothing was changing they finally gave the mri and it was found. then he started with his symptoms again to find out that his venicles were filling up. to this day they still dont know why it did that. he is 6 now. also after his chiari surgury he started with the stare seizures. they were bad when he was younger. he fell down the stairs and off of chairs. im wondering if it is related to the chiari? he goes to see a neuroligist ever year. hes not on any medication. and so far nothing has changed. i am wondering if anyone is aware of a support group around rochester,new york?
In reading ur post I am not sure what surgeries ur DS has had to date...if I have this right, he had the Chiari decompression surgery, and some sort of heel surgery most likely to lengthen the cord?
If he does have tethered cord he will continue to have issues with balance and other symptoms especially as he grows.
By sack of fluid , do u mean a syrinx?
When was his last MRI?
There have been enuff that have had seizures so it could very well be Chiari....the falls he has had r not good for his condition and u may want to try to explain to him how he has to be xtra careful.
As Chiarians we all tend to fall,....so that is to be expected....and hard to avoid but if he is made aware he may not put himself in a situation where he may be at the top of the steps alone....etc....
With a DX of Chiari has he been to a NS in the last few yrs to see if there r ne changes? Do they do MRI's each yr? Do u get copies?
There r Chiari groups in NY not sure what area'a tho...
Just from my own experience, I was diagnosed several years ago with a 5mm herniation. I recently started having more symptoms, pain is worse along with some slurred speech and gettin strangled drinking quite often. I had a repeat MRI which showed I am now at 9mm. Selma has repeatedly informed us that size is not always significant... I would definitely be persistent...
I HAVE ARONALD CHIARI 1 I HAD MY SURGERY 10YEARS AGO OVER THE LAST 4MONTHS MY VISION IS GOING BAD MY EYS HURT ALL THE TIME AND I JUST DO NOT FEEL GOOD. I HAVE HAD A WONDERFUL OUTCOME BUT LIKE OVER NIGHT IT HAS GOT WORSE ANY INPUT WILL HELP?
Hi, I have recently been diagnosed with a 15 mm cerebellar tonsil herniation that is consistent with Type 1 Arnold Chiari Malformation I also have Super Canal dehisence in both ears. Needless to say I am in rough shape! I have extreme vertigo, pain in the back of my head and I walk like I am drunk..I now have a cane to help me with my balance. My vision is messed up and I have bad hip pain..umm is the hip pain related to this>> I don't know much about it, I was diagnosed with this from another dr in the States and I am waiting for my dr to clarify this.. I was wonder, does anyone know if there is a Chiari dr in Winnipeg Manitoba?
Hello all! Just thought I'd stop in and say hi. I'm new to the forum and have CM I with 7-8 mm tonsils. Also, my cervical spine is completely reversed! HA... you'd never know it from the outside but boy is that strange. So anyway, I have degenerative disc disease in my thorasic and lumbar spine too. I vomit A LOT, have ridiculous headaches that come on in a flash and all of the numbness and crazy tingling. Also, I don't know it it's common but I have serious bouts of burning. Like really SUPER intense burning; almost like someone is holding a cigarette on you. Anyone else have that? What about strange itching sensations but not being able to pin-point them? I feel like a crazy person when I describe my symptoms to my Dr. and maybe he thinks I AM a crazy person. Who knows..... All I know is that I'm getting crappy care and don't have a whole lot of options in my small town. :( Oh and Social security is a joke!
We do have a list of Drs in Canada that the members here from there have used, and liked, the list is NOT a referral but is here for u to use to research Drs......use this link to go to the Health Pages to access the Drs list for Canada - http://www.medhelp.org/health_pages/list?cid=186
Ur symptoms r similar to what many of us have dealt with and deal with daily...even the hip pain as many of us do have related conditions like Ehlers-Danlos which affects the joints...so do make sure ur Drs rule out all related conditions b4 u consider surgery as these related conditions can affect how u feel and heal post op.
Finding the right Dr is key....and as I suggested to the above new poster that using the list of Drs we have in the Health Pages can help u with a starting point in researching Drs...as I mentioned these lists r not meant as a referral...just as help in getting started. http://www.medhelp.org/health_pages/list?cid=186
There r Drs listed for CA in the Kaiser system.....and please note u may have to travel to get to a dr well experienced with Chiari and related conditions.
With some of the symptoms u mentioned it is possible u have a syrinx...so do be sure they rule that out by doing MRI's on ur complete spine not just ur cervical spine.
And speaking of the cervical spine and having a reversal of the lordosis, I wondered if u were ever in a MVA? WHip lash can cause this to happen....and I had it too, this can cause much of the pain and issues u r dealing with as well.....so do make sure they check u for all related issues and try to treat some of these issues to see if some of ur symptoms lessen.
Thank you thank you! That was more information than I've ever heard out of any of my Dr's mouths. I've said it before and I'll say it again, thank God for forums and people with keen insight. Man.... I would be lost without you guys!
has anyone experienced episodes where all of a sudden it feels like your brain is buzzing and you get very weird sensation and feel like you are ready to pass out then feels like blood totally drains out of you from head down then feel confused for few minutes after. Very scary.
i used to get these episodes before my Brain Compression Surgery and they went away post surgery but now they have returned...let me know if any of you have experienced this.
hi Selma thank you for you quick response i appreciate it. i was diagnosed Oct. 2008 with Chiari with 7mm tonsils and severe CSF flow problems and the severe Chiari headaches. i had my decompression surgery Jan. 2009. Many of my symptoms went away for about 3 months then little by little they began to come back. My CSF fluid was flowing better but still had disruption of flow to certain areas of my brain and still have crowding in the foraman magnum area. i had my surgery at St. Joseph hospital in Syracuse NY by Dr. Craig Montgomery. he did a craniectomy and lamenectomy but did not open my dura. he told me that if the first surgery did not help me then i could get a second surgery where they open the dura and sew a patch in it making more space for CSF flow. I have not had the second surgery where they open my dura because they cannot guarentee that it will help me and said it can even make me worse off than i am. my symptoms now include severe neck and shoulder pain, Chiari headaches when i do activities getting my heart rate above 130, when i strain, when i cough hard, when i lift heavy objects and when i sit in one position too long such as staying on the computer too long or just sit still in one position too long. i have to be able to move around a lot and change my positions or get up and walk around etc. i have tingling in hands, lower legs and feet all the time and depending on what i am doing feet go numb such as if i walk for a while they go numb or pins and needle so severe and very painful. i have face pain, burning sensations lower legs feet shoulders and down arms on and off. pulsetile tinnitus and loud ringing in ears also. unsteadiness - loose balance a lot sometimes just standing and i tip over. i experience the episodes i explained in my last post where it feels like brain starts buzzing and i feel as thought i am passing out - feels like brain is short circuiting.
have problems with slurring of speech and forming words on and off.
Concentration problems and sensitivity to loud sounds.
eye problems - blurring, flashing lights (fireflies) and the muscles in my thighs in my legs weaken on and off making it difficult to do stares when this happens.
i have Graves disease, Osteoarthritis in all my joints, degenerative disc disease in c-spine and lumbar spine causing a lot of pain and bulging discs in c-spine. i have Fibromyolgla, and GIRD.
I am on Tramadol for pain, Lyrica for Fibro, Celebrex for Osteo, Omeprzole for GIRD, Ametriptyline low dose for headaches, and helps me sleep better. flexerall ad bed times so muscles will relax. estradiol very low dose because i had a total hysterectomy in 2000.
I also use topical pain cream on shoulders and neck when i am in a big flare up. Levoxyl for hypothyroidism because they did RAI treatment to kill part of my thyroid because of the Graves disease (hyperthyroidism) which pushed me into hypothyroidism. i still get flare ups on and off with the Graves disease.
anyway pretty much feel like a mess. but the meds help a lot. they make it so i can at least function daily. I can't do the things i used to be able to do but i can at least function. off the meds i cannot even function.
so that about sums it up. i have been considering going to the Chiarra center in Long Island as the doctors here do not know very much about Chiari and do not seem to understand all the symptoms that can come with Chiari besides the headaches also because i am having bladder issues and was worried about tethered cord but doctors did MRI of lumbar spine and said they did not feel i had tethered cord and i am seeing a urologist who did the test to decide if i had Neurogenic bladder and he did the test and says i do not have that even though i have most of the symptoms of Neurogenic bladder and he wants to do a procedure (surgery) to help prevent loss of urine. but i have not decided to let him do this yet.
anyway that about sums it up - I am functioning by taking my meds and doing my stretches and neck excercises and being careful what i do being careful not to overdo it or i end up in bed. i am not working because my job consisted of me sitting at a computer all day long and multi-tasking big time and i can no longer do either because of my condition.
write back when you get a chance. Thanks Selma
Hi,....I had a feeling they did not open the dura for u....and symptoms returning at 3 months is typical....but, it should not last and not be as severe as per op....
I am 3 yrs post op and I am much better then I was b4 my surgery and I did have my dura opened.
I also had a chiari specialist that made sure to look at all related issues first, and found I do have EDS, so they used my pericardium for my dura patch.....
With EDS I heal slower then most and I can say I am much stronger now then I was 4 or 5 yrs ago....so my surgery was a successful one...do I still have issues...yes, I do, but they r manageable....and some r due to other related conditions I have ....not all chiari....so this is y it is important to know.
May I ask did u have a MRI post op?
Please get the opinion of a Chiari specialist....u r in NY and I know up state but it would be worth ur while to travel to Drs that know how this affects us....
I am so sorry u had to leave ur job, but so did I as I could not go back after my surgery...it takes longer to heal and not the time line that many expect us to bounce back,.....
I have just been diagnosed with ACM 5mm. My neurologist dismissed the ACM as insignifiant as soon as he read the radiologist's report of my MRI but after lots of reserch I think I have finally found a reason for feeling so awful for so long. I would like a second opinion but I am South African and am struggling to find a specialist here. Can anybody help?
Also I am only 22 and would like to know if I can expect all these weird symtoms (symptoms) to get worse as I get older?
I am so sorry u r feeling so poorly, this condition is one that can make it frustrating to get answers...especially since it is Drs that understand and know how to treat it that seem to be the only rare thing about it as there r far too many of us for this to be a rare condition.
As far as symptoms getting worse as u get older, it is possible, it all depends on what symptoms u r dealing with and how ur chiari is affecting u and ur overall health. It is also possible that ur symptoms may not change from what they r now.
Too many Drs say Chiari is insignificant some do not even bother to tell the patient they have it....so, I understand how u feel... unfortunately we do not have a list of Drs in Africa...I do recall having a member from there, I will look to see if I can find that person and mayb u can see what they did , who they went to etc...
My 6 year old daughter has recently been diagnosed with Chari type 1, with a hernation of 12mm more on the right than the left side.
She's had a full body MRI where the chari showed up i orginally asked for her to be refered because she shakes a lot, we have been told on conclusion of the MRI that they think she has essential tremour which is apparently not linked with the chari they didn't instill me with confidence.
She suffers headaches every week usually for 3-4 days in a row, regular has pain in her right eye and compains the light in the room is too bright even though it's only a 60 watt bulb,she regular gets reflux which she explains as "sick in her mouth" and chokes easily.
She gets pains in her legs and her neck aches after a headache, these symtoms (symptoms) sometimes go away with paracetamol.
She has had some quite bad behaviour problems at school which are out of chracter and sometimes displays toddler type behavior like putting starnge things in her mouth and running off in public which she has never done before amonst a list of other things.
These are only the symptoms i can get out of her as she often goes silent and shuts down on me when she's in pain
She is seeing a neurologist which seems a little vague on the subject, she has ordered another MRI scan which is next week for her head,neck and spine and she has an appointment in december with a neurosurgeon to have a review, do you think she will possibly need surgery, i'am quite worried as the docters here in England seem to be a little vague with it all and don't seem to concerned but she is only 6 years old and shouldn't be going through all this.
I would appreciate some advice if any of these things sound familar to anyone.
Kind regards Sarah.
I am so sorry ur little one is suffering with this and u as a mom has to watch and hope u can help...it is very frustrating trying to find Drs that know how this affects us.
We do have a list of Drs and for those in England we do have one from the Ann Conroy Trust ...I strongly suggest u research the Drs on the list as I do not know nething about them, this is just a place for u to start ur research.
We do have others in the UK that may be able to offer insight in using Drs on that list.
Please know u r not alone and u were right to go with ur mom's intuition and continue to go with ur gut feelings as to what u feel is right, but do use this site to help educate urself so u know what to expect for ur DD.
Thank you for getting back to me so quickly, i read through this forum looking for a case similar to my daughters but couldn't really find anything, i suppose i just want to know what to look for if the docters were going to consider surgery?
I will have a look at the website you suggested to me and the list of docters just in case i might want a 2nd opinion she is of course very precious to me!
There's only so much i can ask her to explain how she's feeling without putting words in to her mouth due to her age.
Thank you for your advice,
Kind regards Sarah.
Children act out when not feeling well....some get more aggressive with pain...so, if the child is acting differently u can assume ur child is being affected in some way ...not always pain, but blurry vision, cognitively...it is such a strange way to feel that even for adults it can be difficult to explain....so no wonders a child acts out.
Instead of putting words into her mouth u can ask if there r times she does not like to do things....and ask about things that r typically an issue...like being around bright lights, loud noise, yelling, jumping, spinning, hanging up side down....sit ups...there r things she can tell u that should indicate she is having symptoms.
Thanks i will try different stratgeies, she does get aggressive with her friends at school it has been quite a major issue, when she has reflux several times in a day she will usually complain of a headache at some point and she did lay down on the floor the other night saying she felt sick and her right eye was a bit blurry so she was proberly feeling dizzy.
At school she has been placed in a smaller quieter group to learn as she struggles in large groups and noise seems to be a distraction.
The 1st school year she was progressing well at school but in her 2nd year she was aggresive (aggressive) and what her teachers described as unreachable at times, she became very unpopular with friends and was completly miserable totally different to what was my my sunshine daughter.
She ended up 3 levels behind her learning for her school year, we were quite shocked and frustrated as to what had happened to our little girl.
The school called in an educational phys
This school year since she's been in the small quiet group she has started to settle down and progress in her learning.
So she is now under a neurologist, a neurosurgeon, an EP and a nurture group at school for children with learning difficulties quite a lot to be going on with as she is only 6.
Hopefully we should get some answers soon, it's taken 2 years to get this far.
Thanks once again for your advice Sarah.
Hi I live in England, just outside of London and my daughter is 11 now and had decompression surgery at the beginning of 2009 with Mr Dominic Thompson at GOSH. Her Neuro consultant was Dr Adelaide martinez who was lovely. My daughters post operative condition is interesting and challenging at times and she will always be special and need extra special help and attention. If you want to talk more let me know.
I am 49 years old and was told that I had atypical MS about 20 years ago after being diagnosed with transverse myelitis. I also had a seizure about 8 years ago just 1 time only. Last week I was hospitalized with what appeared to be stroke but after an MRI was told I have Arnold Chiari. I have a 4mm tonsillar ectopia. My symptoms are numbness and tingling on the left side leg and arm with weakness. I also have numbness on my face especially my lips and tongue. I have also noticed that when I shower and lift my arms to wash my hair I go numb on my right side... arm and hand only. I am seeing double out of my right eye only and vision is not corrected with glasses/contacts. Just got new glasses in the last 4 months and they were fine until 6 weeks ago. Using the wrong words for common situations is happening ocassionally. I feel the MS diagnosis was incorrect. I also have spina bifida occulta and lumbarized sacral vertabrae with Pars defect which they found about 15 years ago. Is this all related? Due to it only being a 4mm ectopia should I be having all these symptoms? I see a neurologist next week is there anything I should be asking?
I have heard many that have been mis'dxed as MS...and this is one test we all should have ruled out...not sure how they got that wrong as the LP test should show bans in the fluid...and demylation on MRI....it is possible to have both too.
The length of herniation is not void of what symptoms u will have, and far too many Drs will only look at that....it is more if they r causing a CSF obstruction....so ask about a CINE MRI, and MRI's of the thoracic and lumbar spine to rule out syringomyelia...u already know about tethered cord....so u must have had a lumbar spine MRI b4.
Over crowding of the skull is another issue...retroflexed odontoid is one aspect that some with chiari may have ...and it can cause many of the symptoms u mentioned.,
Also Ehlers-Danlos...they should check u for that as well, many times we r misdx'd as having fibro when it is EDS. U will want to know about this as it too can cause many of the symptoms and can affect the out come of surgery if u r considered a candidate.
I was diagnosed with a chiari a little over a yr ago. I have headaches neck and shoulder pain. Weakness with tingling in my arms and legs. I have disk in my neck that r ruptured also. I just wanted to know if anyone else experiences any kind of weird feeling between their eyes kinda like they want to roll back in their head
Yes, that sensation is pretty typical for many while others do not get it ...we r all different in how this condition affects us as it has other related conditions and u need to find out if u have those as they may be what is causing some of ur issues as well.
Such as the disk issue can be from Ehlers-Danlos a related condition...this is important to find out b4 u consider surgery......
The actual location in ur cervical spine where this disk is ruptured will also dictate what u feel and deal with.....
Find a true Chiari specialist as this is key to have the right Dr.
I am a 38 years old and had my first tonic/clonic seizure on November 2012. I since have had several small seizures. I just had my MRI and the neurologist that I was seeing is giving me the run around. I spoke with my PCP and he read the MRI results and informed me that I had Chiari 1 Malformation today. I have no idea what this is. But reading your post and "you know you have Chiari when" was so helpful. Thank you all. Now I know I am not CRAZY or DRAMATIC!!! This is real and I'm just starting my journey. I can see the support on the forum. Thanks! I feel better!
It can be a long and bumpy road form Dx to treatment....many od us have had symptoms our whole lives and also got the run around which we have dubbed "The Royal Chiari Run Around"....not too many Drs r informed or experienced on Chiari, Syringomyelia and other related conditions.
Finding the right Dr is key....and we do have a list that u can use to research Drs, the list is not a referral as not all Drs on the list may be true Chiari specialists, but have treated a member here successfully.
Make sure all related conditions r ruled out b4 u consider surgery as it has risks and is not a cure or a fix...just a means to restore CSF flow and slow progression.
I am glad u know that u r not crazy and u deff r not alone : )
Hi selmaS, Thanks for responding so quickly. I have seen a new neurologist and got "The Royal Chiari Run Around" again. It was dismissed and I was told to that it was insignificant. I was angry but remembered what you said "you have to find the right doctor". I am waiting to change insurance. I read on an earlier post that the Kaiser system has Chiari specialist is there any more information on them and where they are? Thanks a lot. I will start the research now.
If u look at the Drs list we have in the health pages and is also a thread on this forum u will find who we r referring to, but do research the Dr as well...just bcuz he worked well for someone else does not make him the right Dr for u.http://www.medhelp.org/health_pages/list?cid=186
Hello, I haven't been on the form for a while. But wanted to touch bases with people how understands me. I am still getting "The Royal Chiari Run Around". I will b getting new insurance in July and hopefully there will be a Dr. that will listen. My Journey is still on going. Still having small seizures, tingling, headaches, muscle weakness, balance issues, numbness, can't sleep on my back or I will stop breathing and so on. I still have hope that I will find the right Dr.
May I ask what issues./symptoms u may still be having?
Was ur NS a true Chiari specialist?.....
From my research (I am not a medical professional) and talking with members here about their Chiari and surgical experience it seems that all those that have issues post op had a related undx'd condition that played into the post op issues....if they had been found b4 it may have created a different outcome. JMHO
Hi! I am new to this forum and I have read all of others posts and some were very helpful to me! I am so grateful there are places like this available! I have so many questions and this seems like the most knowledgeable place to get them!
About 6 months ago, I began having SEVERE headaches. Some of those headaches lasted up to 4 days and OTC headache and migraine meds did NOTHING! This is also when I began having constant neck pain but during my headaches, the neck pain was almost just as severe as the headaches. Shortly after the headaches began, I started having vision problems (blurred vision) and fatigue. This is when I started having to call in to my job pretty often. (A job I have had for nearly 5 years and RARELY called in sick) A couple months ago, I began experiencing other symptoms in addition. The left side of my face would fall asleep and I would have numbness in my head (like a falling asleep feeling) And this numbness "falling asleep" happens very regularly - about 3 times a day. This affect my vision and my speech even more.
When this started to happen, I went to a Dr. and had an MRI done. MRI states I have 7mm of cerebellar tonsillar ectopia consistent with Chiari Type 1. The MRI summary goes on to say . . . "The posterior pons is somewhat small in size." . . . What does that mean? What is posterior pons?
I lost my job about 2 weeks after the MRI due to too many recent call-ins. This all started 6 mos ago and just gets worse over time and new symptoms have arrived as well. My other question is: "Would Chiari Malformation type 1 qualify me for disability?" I am absolutely terrified about my recent financial issue! I lost a job I had for 5 years b/c of this! And my fear is trying to find a new occupation when I have so many unbearable headaches and neck pain and vision problems. CAN YOU HELP? THANKS!
The pons /ˈpɒnz/ is part of the brainstem that links the medulla oblongata and the thalamus.
I do understand ur stress over the loss of ur job as I lost one too and I had mine for 15 yrs....
Getting disability is not easy as Chiari is not a well known condition .....so sometimes it is some of the other related conditions that may help u get disability, it can take up to 2 yrs from the time u apply.We do have a link to secrets to wining Disability.
U will want to get more testing to see if it is ur Chiari or a related condition causing ur HA's....u need to know if u have a CSF obstruction....syringomyelia, ICP, POTS, tethered cord, ehlers-danlos, sleep apnea and low levels of vitamins and minerals....and a auto immune thyroid condition.
I have had a fairly normal life with some mild headaches but everything changed in march. I suffered a ruptured aneurysm on march 16th and spent over a month in ICU. Since my craniotomy and clipping of aneurysm I've had horrible headaches, weakness, fatigue, memory issues, diziness, seizures, nausea sometimes with vomitting especially around time of seizures, insomnia, loss of feeling, neck pain, back pain, and all over pain really. My neurosurgeon referred me to a headache specialist who put me on the max dosages of pretty much everything and nothing has helped. I'm currently on 7 meds. He did EKGs CTs and finally sent me for an MRI and found out I have chiari malformation 1. I was then referred to another neurologist who also specialized in chiari and he spoke with me went over my mri showed me my herniation and recommended decompression. He was ready to set a date for surgery before i left his office but As soon as I told him I was dropped from Medicaid because my husband got a job he wouldn't touch me. He said I have to have Medicaid or insurance in hand. I cannot even begin to tell you the dozens of people we've contacted for help from hospital charities to voc rehab and etc... We've been fundraising for a while now. I just really don't know what else to do. I am 25 years old. I'm married and have a 4 year old boy and twin 1 year old girls. I just want my life back. I want to be the wife and mother I used to be, not the one who's hurting all the time. Can you offer me any advice? Thanks in advance.
I had Medicaid from march to sept for my aneurysm and they dropped me bec my husband got a job. He only makes $10 an hr and we have a family of 5. I tried reapplying and was denied. They gave me an mri and told me I had chiari and that was it. I haven't been tested for anything else. The secretary for my neurologists ofice called me once she learned my Medicaid was dropped and canceled my future appointments.... Seriously... So now I'm just trying to figure out what to do. I'm a stay at home mom to my 3 kids no job. Just really need some help. Thank you for responding.
The clinical trials, may be an option for u...it is the NIH in MD and they do trials on those with Chiari, this is not some new surgery it is a way to track it and know what the long range results are.....Dr John Heiss is the Dr in charge there and well known in Chiari circles for knowing a lot and is well experienced.
Do look up the link using the search this community feature and type in clinical trials.....
Hi. I am a very concerned Mom. My 25 year old son has been having what I call "episodes" of losing consciousness. He has learned to know when they are coming on and tries to get to a place to sit down. When this happens, his speech becomes slurred and his cognitive skills pretty much shut down. Afterwards, he is exhausted and sleeps for hours. He has had CAT scans, MRI's and every type of monitoring test that he can have. Although the Doctors notice that 'something' is definitely causing these episodes, nobody knows why, or even what they are for sure. In my quest to find answers for him, I reached out to some family members. I found out today that one of his cousins was diagnosed with Chiari Malformation. After hearing this, I immediately started researching it and although there are some notable similarities, every single case is so unique that I can't really get a feel that "this is it". I'm beyond myself with worry and my son lives 2 hours from me. Does anybody know of, or have symptoms similar to my son? I'm desperate to help him find answers. God bless, and thanks so much! Sherri
It is important to get copies of ALL testing that has been done, the MRI's and CAT scans on a disk and request copies of the reports as well....it is possible it shows chiari but far too many Drs consider it an incidental finding and not much more....but it can and does affect too many of us.
It can also be found in families too...so since he has a family member with it,this should be looked at more closely.
Chiari symptoms do cycle, so episodes where these symptoms u mention occur can be Chiari as we have had a few members with similar issues.
I had what are called Drop attacks....standing one minute, the next mid fall...and can not react or brace myself or call out....Afterward I was very nauseated and all over unwell....
As u mentioned we are all different so u can not base it on me or his cousin, u need to get copies of the testing and have yet another Dr review it for u.
U r quite right, to a degree...u can acquire low lying tonsils which many refer to as Chiari , but it is not a true Chiari Malformation as that is the malformation of the skull and u can not acquire that...only the herniation.
May I ask do u have Chiari and have u had surgery?
My 3 year old son has chiari 1 he has synomenlia (dont no how to spell it) and he has a syrinx but i can understand what it all means and he has very low lying cerebel tonsils aswell along with periventriculare flares and developmental delay can somebody please explain what it all means as he has got to have an operation next year thank u
If anyone can help please reply to this. I have posted previously but I also have new questions. I have chiari 1 malformation, I finally have insurance now and am awaiting a surgery date to have decompression. I have put it off because I know I need to have other tests done before decompression. The only thing they've done is an mri of my brain and shown me the herniation and said with all my symptoms that are getting worse, I need surgery. I know I need to be tested for things like syringomyelia, tethered cord, icp, pots, sleep apnea, and eds before decompression. My mother who also has chiari and has had decompression has made an appointment with a specialist to have these tests done. Only problem is that it's in Maryland and I live in NC near greensboro. Does ANYONE know where I can have these tests done in NC? I am trying to avoid going to MD and wasting more time and $. I'm unemployed and have 3 kids under 4 I take care of. If MD trip can be avoided, it would help a lot. My husband works full time and I don't have anyone to really keep them while I got to MD for days. I really need to get these tests done here in NC if that's an option. Can anyone give any advice. TIA.
I had an mri of my brain that's it. The dr I see is a chiari specialist. He looked at my mri, the herniation, and talked with me about all my symptoms and was ready to schedule my surgery ASAP. At the time I didn't have insurance, but now I do and he's ready to schedule surgery but I want these tests done first. I was just trying to avoid going all the way to MD.
Dr. Bell. My mother said he specialized in chiari. I called his office and spoke to his MA and she said he's done 100s of decompressions and I brought up the tests and he's supposed to personally call me himself after hours today. I'm glad because I have a lot of questions for him. He told me at my last visit that there is no magical med or cure for chiari, that the surgery was just something to give you a better quality of life because most say it really helps with their symptoms. He told me during surgery they work on the herniation and something about removing part of my skull to provide more space or something. I saw him 4 months ago. I've gotten worse since then. My mother had her decompression done by him as well. She did not have any of those tests done before her decompression, and she had problems for a while, but she's 11 months post op now and having no more symptoms and his response was "after decompression it usually takes 1 year to feel like yourself again" I just don't want to chance it. I want the other tests done before decompression so I don't have any other issues. His MA told me I have to have everything pre authorized through my insurance and since I already had an MRI of my brain that showed chiari they would deny another because I was simply wanting them to "fish around to see what else might be wrong with me" I know my mom thinks this dr. Is a miracle worker because she's so much better now, but I just want to make sure I get things done the right way. I just had emergency brain surgery in march for a ruptured brain aneurysm and was in ICU for a month. I'm on 7 diff meds right now and nothing's helping. I have horrible headaches for the most part of everyday, weakness, fatigue, memory issues, diziness, seizures, nausea sometimes with vomitting especially around time of seizures, insomnia, loss of feeling, neck pain, back pain, and all over pain really, and my vision is shaky a lot. I'm just getting worse. It's so frustrating. Thanks for responding back. I appreciate it.
I am not familiar with that name, not sure but I do not think it is on our list,
Actually it can take up to 2 yrs to heal completely as the nerves take longer to heal then the incision.
Not sure what type INS u have, some will restrict what testing ur Dr can do, but I did not have an issue with mine having all the testing done. Since u have had other issues u would think it is best to rule it all out b4 u have yet another brain surgery.
With the decompression they do remove some bone from C1 and C2 to allow CSF to flow...depending on the condition of ur cerebral tonsils will depend on how they are handled, and it is also different from Dr to Dr.....same thing with opening the dura and placing a dura patch...there are several types and if u have EDS it can be the patch and what they use to close that can cause an issue....the patches are either synthetic, bovine, cadaver or tissue from u, harvested from ur thigh or scalp.
Surgery is done to restore CSF flow and slow progression ....but ur Dr is right there is no cure or med to fix this Chiari is life altering....some do better then others....so ur attitude going in can be a huge help.
i wias reading your problems and was wondering what you thought of dr.montgomery?? my daughter had surgery by him and she liked him so we did not look for a second option,do you fill he is a good doctor?i never asked if he was a chiari specialist,is he???how do you find one in Syracuse??hope things are getting better for you and all these other people that have this condition. I havenever even heard of this before my daughter had it found on a mri scan. let me know what you think,thank you
I've had the decompression surgery almost 4 years ago. The past year or so I've noticed my throbbing headaches to be coming back as they were before the surgery... what are the chances it went back to what it was or something else is wrong?
My 3 year old son who has multiple medical conditions was diagnosed with Chiari 1 with 15mm.... My question is I have been to two Drs and both don't know what to do. My biggest concern is that he is all of a sudden sleeping all the time. They have done every test possible to see what it could be but nobody can figure it out. Has anyone else had this issue??? The last Dr just told us that she would do the surgery but we don't know if that is what is needed..... just wanting to know if anyone else has had this issue?? He has swallowing issues but the 5 surgeries have not helped yet and I am tired of all the head concussions he has from falling all the time. He was born with club feet but are good now. He does do better with no shoes on and is small for his age. I am just at a loss as what to do. Husband and I are fighting because we don't know what to do.... They also think my daughter might have it also so we are waiting on her MRI next month! His other medical problems are Aarskogg Scott Syndrome, a Laryngeal cleft, Unspecified auto immune disorder, asthma, chronic ear infections and hearing loss and vision issues now also, He has always been delayed in everything and with every med he takes he aspirates or with most thins. He wont eat much food due to choking and has to take supplemental drinks to keep us his calories to grow. I do know all the other Drs say its not there issue with what is going on but the neurosurgeon cant give us a straight answer and said she would do the surgery but left it up to us.... it is a big deal for a 3yr old who has had multiple surgeries already and in the last month has been poked over 30 times for tests and or surgeries and he keeps getting worse. We might have a few good days where he is happy and playing but here the last month or so all he does is sleep. Just wondering about any information that might help us figure this out.
I am so sorry ur little guy has had so many surgeries and is dealing with so much already in his young life.
Many if us do have sleeping issues....has he been tested for sleep apnea?
U can have a sleep study done in ur home, instead of a clinic....research NovaSom....
I had swallowing issues that did resolve post op .....but with his Aarskog-Scott condition, I would not know how u can tell what is from which...as he has joint laxity and many with Chiari also have it as they also have EDS which is related and causes the same issue....
I would strongly suggest finding a Chiari specialist to help u decide if surgery is going to help and answer some of ur concerns...as there is so much going on with him....not all Drs are capable to knowing what may or may not help....and if his Drs are not true Chiari specialists they may not know how to advise u.
A NS is not the only thing to look for when seeking help with Chiari....u want one that treats and researches Chiari and ALL related conditions.
Chiari symptoms do cycle, so having good and bad days is typical.....
Does he wear a helmet ? it may help until he gets help with his balance and help with the concussions,.....
With joints that are lax, u can have pain, pain makes u tired....I had periods where all I wanted to do was sleep....plus he is growing....that has got to be tiring for him. But do have a sleep study done too.
had to post this, so looked for a current comment chain. I had the decompression 49 years ago. lots of adventures since. recently bought a "Chiari Pillow". it is great. for the first time I can remember, I wake up without a headache and without nystagmus. best of luck and courage to all posters.
Not sure how u looked for a current thread as many find these older ones b4 they join....but no matter....I am glad to hear the Chiari pillow helps u....and 49 yrs ago....may I ask have they done recent MRI's to see if there have been changes?
In all that time u have always had HA's what did ur Drs say in regards to that ?
no MRI's then. I had headaches for several years after surgery. Learned to slow down and not let them build into anything really bad. I feel pretty good. Just know not to expect good outcome when I move my head first thing in the morning. was surprised how well I felt after sleeping on my new pillow. I know the pain can be tremendous, I read the posts. In my case the pain ultimately became less and less. It is what my Dr said to expect and it happened. I have poor balance and can't move very fast, I have a funny voice, I wish the very best outcome for all who find themselves facing this condition.
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
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 !!
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
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.
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.
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