I was diagnosed with type 1 chiaris malformation in 2010,I have type3 loeys-dietz syndrome. I can't drive a car,because I have seizures,and pass out randomly. I found that hiking,jogging,and running can help the CSF circulate better. I have less headaches,less blurred vision,and I've began a regiment of medical marijuana edibles to stop my seizures(low dosage) Life is much higher quality now
Dr. Grant is a first class MD of the highest order! He helped our son tremendously. I certainly wish him the very best at Stanford and all those patients he will see are in the best hands possible.
Dr. Grant changed our daughter's life in 2012. Thank you Dr. Grant for giving our girl a chance to live pain free and thrive! We are forever thankful for you and your team.
I 100% concur with what dr. Grant says about neurosurgeons not following up with adult chiari patients. As an adult with Chiari and Syringomyelia, I got the decompression surgery pretty quick then later got vp shunted due to high icp and brain swelling. I thank God I made it through. My neurosurgeon ordered an MRI after 1.5 months of surgery..there was no change in the syrinx, I was still having symptoms n headaches were still there. After 2 more months ordered a head ct coz I was having severe headaches,which the dr found unbelievable....the radiologist said I had global cerebral edema which was definitely causing headaches, neurosurgeon said It was puzzling coz I already had a vp shunt n that they cant shunt you twice. I was sent home with more painkillers and diamox n the doctor made a joke that I probably had one of those swollen brains??? Really?? Long story short I have not been back in almost a year. Wish we had more concerned doctors but I think as patients we really need to strongly advocate for ourselves as no one else will because I have found that when the disease is not taking the "normal " progression the drs think it should, the sort of dont believe you n sometimes gaslight you. If the dr you have doesn't believe, understand or treat you right, find another one..I believe there are dr Grant's out there.
I have chiari malformation and i felt so relied after watching this, as a kid i had very bad anger issues. I still do but as a child i would just explode, no resistance to my reaction. I was diagnosed with anxiety and bipolar depression as a young teen. Ive always had balance issus, and been extremely clumsy. I have difficulty talking, I'll get internal shaking, it's hard for me to eat and breath at the same time, i have severe night sweats. Lots of numbing and pain all over my body. Nerve pain. When i got an mri due to shock headaches and sore neck pain. I felt relief that everything had a explanation.0 My Dr only said that it was nothing major and that it might go away. I felt lost again. Thank God for this Doctor right here. I know now to find another doctor who will take me serious.
@@xpandmine Same here have always had alot of difficulty with calculating numbers since childhood and it made me feel stupid as I grew older it would bother me especially because otherwise I'm extremely intelligent. It always made me sad like what is wrong with my brain?😔 Oddly enough, sometimes I can without really thinking or using a calculator randomly figure exact numbers 🤔
I wish there were more of this kind of information when I had my decompression surgery in 2010. The surgery did not relieve any symptoms for me including headaches, tinnitus, swallowing difficulties and vertigo. My surgeon told me "Your body did not respond in the manner that was expected", yet he deemed the surgery a success because it was done properly and without complications. Now, 7 years later, I am having yet another MRI on my brain because of increasing issues with vertigo. I certainly appreciate having this resource to educate myself, thank you for posting the videos.
Great post.I am 47 and have all of these symptoms.. I have been diagnoses with Chairi a few years ago..but I do believe that I have had this issue since I was a child..as a child I have been to the doctor for inability to swallow,,neck pain' as an adult I find it difficult to have a normal day without some type of pain...i have the memory issues, dizzy spells, blackouts, vision problems, neck pain, speech issues. i noticed that some words I can no longer say.
I understand what you're going through. I was diagnosed at 32 after having a grand mal seizure. I also believe this was present all my life and I was having seizures in my sleep so it went unnoticed.
He is the best surgeon he helped me with my seizures I had brain surgery and for three months now I have not had one seizure he helps a lot of people he puts his time and effort in helping people have a better life
My husband had seizures that were hard to control. It's how he died (a ER Dr. wouldn't listen to me). I have hydrocephalus, Chiari, etc. The strange thing is that when we were first married we had few symptoms of anything that was wrong. I began to get serious headaches and vomiting issues. We found out that his "Petit" (what used to be called absence) seizures were serious when he had a huge Grand Mal at 24 yrs old......after that, the seizures were frequent (the absence) and the Grand Mals monthly. He couldn't work. I worked until I was 40 and on the advice of my Neurosurgeon (who was Chief Neurosurgeon/Professor & Chair of University of Michigan) I took disability and I wasn't sorry I did that. I was given 11 yrs of a wonderful life with my husband that I loved very much. He wouldn't have died had the ER doctor paid attention to me that day. That's hard to get over. My husband deserved a longer life. I wish this doctor was closer to me.
@@holiday-td6hx ❤praying for you now as I read this. May God comfort your heart and bring you peace and healing, I pray in Jesus Name. “He is very near to the broken hearted and He binds up their wounds.” ❤
I have Chiari Type 1 and I have a big issues with my memory. I tend to even forget what I was talking about during a normal conversation. About two weeks ago I was driving and completely forgot where I was going. I also blackout and this has been the scariest experiences of my life. I am currently looking for a good neurosurgeon in Atlanta and I hope to feel better soon :(
Oh my gosh That same thing happened to me while driving on a familiar rout. I all of a sudden didn't know where I was. That was frightening. I've never been diagnosed with Chiari, but my 7 year old has. Just makes me wonder.
Im at 17mm down and i have decompression surgery march 16th. Ive known ive had it all my life and it was doable up until the last two years. I have so many symptoms is sucks but knowing someone cares and actually validates what we have isnt "in our head" helps so much so thank you.
This man gave me as an adult with Chiari 1 hope ... but I have been through it now I finally found a Dr that sounds like he thinks this way.. this sounds crazy but Dr . Grant is my Standard!!!!
Great video, very informative. The listening to patients and family really grabbed me....That's nonexistent with every doctor i've spoken with about my chiari. Actually when i was originally diagnosed, i wasn't even told....I found out later from another doctor who got my records. And recently i was told chiari is not painful by a neurologist who i believe thought i was drug-seeking, or he was just an idiot...maybe a little of both. So i'm doing my own research now after a decade of misery. My pain is horrible, and the fatigue is out of control now. I've been taking Adderall for it, and I can take that, drink an energy drink and a 5 hour energy shot....and fall asleep. When i should be wired and jittery....I'm tired and my heartrate is in the 50's after all that. I want my life back. Thanks for the video. ~Too much brain to contain
humasima I've had symptoms and pain far back as I can remember and continue being treated like a dirty street walker with drug addiction begging for relief from pressure and pain. Im 98% of my life now in my bed. No neurologist in my area will see me and was told even with worsening symptoms that chiari was treated all it can so now acupuncture pain management is my only option! management
I started seeing a spinal pain doctor. He has done some injections and blocks in my spine and relieved that, and he is sending me to a neurosurgeon to finally have this operated on. After 41 years of suffering. I am in bed all the time. Unable to work, sleep, function. Period. I pray for the surgery.
I have ACM and had decompression surgery years ago. I'm 30 now. I live in Georgia and would do anything to have a doctor like this man. I've been told I'm crazy and a 'drug seeker' for decades now. People just don't understand.
Miranda Ann I've dealt with being called attention seeking at a very young age I was put on strong mental health meds . I dont bother with the ER I'm treated horribly. Dr Than at OHSU in 2015 told me that there's no reason for me to have symptoms cuz I was CURED with surgery!!! And now no neurologist will see me I was told only option left for me is pain management... I'm losing strength rapidly in my left arm again and my symptoms have been progressing to where I'm in bed 98% of my life. We need HELP!!!!
@@emilybalfour7597 No especially with the way everything has been going to hell the last couple years . Its made finding a specialist and being able to afford travel expenses is now impossible for the time being. I was looking into The Mayo clinic they have Chiari center with specialists but it didn't work out.
I have had the posterior fossa decompression with duraplasty . I have Chiari 1.5 . 22mm with medulla herniantion. My symptoms have improved greatly . I still have many issues , but my concerns are with the cognitive issues . I was once a line cook. Those days are gone forever ,. Now, I can't be interrupted while cooking dinner . Memory , attention, and set shifting are where I need help . I can say, planning and decision making have improved since surgery .
My Surgeon and hero. He recently helped me with a revision Chiari that was tricky but he had faith in me and himself that he could help. Cognitively I am 90% better (this made work difficult) and my specific pain I had from the first decompression in 2016 is gone. Just have some surgical healing stuff but Dr. Grant and Breanna have been so supportive and caring.
I was diagnosed with Pseudo tumor cerebri in 1990 age 20. I had at least 2 spinal taps each year until decompression surgery in 2007 at age 37. I continue to have nerve pain and numbness that did not fully correct itself. Prior to surgery my entire right side was so numb that I could barely walk or carry an item. Back during my initial diagnosis and surgery there was only a minute amount of information to be found about either diagnosis. Now that my grandchild is experiencing similar issues I am researching and finding a ton of information and stories from others. I feel like my surgery was nearly as successful as the surgeon said it is was because I have not required multiple surgeries. Unless you count the peak during a day surgery into my first surgery when I thought the stitches tore open. I have had additional MRI's periodically just to check and make my PCP happy, so far not significant changes. I think this Dr. Grant broke it all down brilliantly and I commend him for that but I think adults should be followed a lot closer than they are perhaps that would have given me someone to talk to about the small deficits that I have that I learned through this video could be related to Chiari not lupus or an unknown such as no sense of smell, nerve or muscle under tongue periodically pulls tight, loss of words, sleep apnea, depression and anxiety. If you are going to have the surgery be sure your comfortable with your neurosurgeon the most guarded parts of your body.
My daughter is 27 years old and was just diagnosed with Chiari 1 malformation. Somehow the neurologist fails to link her leg tingling, numbness, shaking and weakness to the Chiari. She also has a severe headache, neck pain, mood swings, a coloboma in one eye, stuttering. Thankfully no syrinx formation. These symptoms just showed up out of nowhere in the past 2-3 years. I would love some more information on how to manage nonsurgically. It's frustrating when you read the research and the neurologists try to tell you the symptoms have nothing to do with the Chiari. This video has been informative but I need a neurologist like him to help my daughter in the South Florida area
First and foremost, thank you for your service, as I am a Veteran as well who served two tours in Iraq (Western Al Anbar Province). This presentation was definitely well put together and detailed. Probably, the first lecture of it's type that I've actually understood each point discussed. More importantly, after participating in a research study at VAMC (Veterans Affairs Medical Center) called "Group-Based Exposure Therapy" for Veterans who have been diagnosed with Chronic PTSD, a MRI was needed prior to participating in the study. Long story short, the results from that study, along with findings suggested CHIARI MALFORMATIONS from the viewed images. Although, I currently have symptoms associated with CM, I refuse to accept them, without talking with a medical professional as yourself, who takes, in my opinion, a more practical approach, versus just operating without considering other causes that may attribute to ongoing headaches and balance issues. If necessary, I'm willing to travel, to speak further with you or your staff. Thank you, once again for this presentation....very informative.
I had surgery for Chiari and ended up on Ventilator .Was comatose for 9-10 days.Dr.Was negligent and didn't put me where I would have been watched...ICU for instance. I stopped breath ing 3 Times...Brain swell and rehab to learn to walk agin..Its Been10 years and I'm rally off Balance
I have chiari and scared. It is very scary. I had suboccipital craniectomy chiari decompression surgery two and half years ago. Now, I have mild hydrocephalus, mild tonsillar impaction, basillar impression, and cervical neck instability. This is scary to me physically and emotionally. It is hard to stay brave all the time.
Thank you for speaking having an open conversation about Chiari’s unknowns. I was decompressed in 2008. My quality of life is better but definitely suffer from anxiety & insomnia. Brain surgery also changed some pieces of my personality. The cerebellum is a mystery for sure & I know now responsible for so much more!
@@mattscott6591 I am not a doctor but an experienced patient. I imagine that if the tumor or swelling following removal surgery caused an increase in your cerebral-spinal fluid pressure, either as intracranial hypertension or hydrocephalus, then it seems reasonable Chiari could develop. It would be classified as acquired Chiari which means it was caused by injury, usually a Traumatic Brain Injury (TBI). The adult skull cannot expand so, increased pressure will force the brain to herniate at the base of the skull. It is typically seen on an MRI so, you should review your last imaging. It is not always true though. The two most common reas. One is, there is a type called Chiari 0 (zero). If I understand it correctly, this is when the brain does not herniate but blocks the spinal canal. And two, the herniation may be gravity induced which means when you are laying flat, as is the case with over 90% of MRI machines, it is not visible but will be visible when you are in the upright position. Upright MRI's are becoming more popular and many insurance companies now cover it. Upright MRI's are helpful for even those who have a confirmed herniation because of the gravity factor. My herniation was measured at 8 during the standard MRI however, it increased to 11 when measured in the upright position. This is probably more than you wanted to know, lol. I hope it helps.
Trying to be patient waiting for a response from Dr. Grant to accept to see me for my Chiari. Fresno Surgeon said I need the surgery but I’ve heard a lot of good things from Dr. Grant and this video made me feel soooo much better! All of my symptoms make sense now! I’m logging it alllll down as there are many different things that are increasing and happening! Mainly speech and memory. Crazy!
Graciela Balboa have you had your surgery yet!! I have Chiari as well. I live in pismo beach.... hope all is well. If you need any advice or information please let me know thank you.
Don't, it's a treatment not a cure. most end up worse or different symptoms.50% will have a dura leak requiring going back in the next day, 20% have immediate issues post surgery.
Very informative!! But that cameraman drove me crazy! The images are apart of the lecture & it would've been great to follow along with all of the images.
Listen to your patients? What is this voodoo you speak of? I have Chiari I and everything in those lists except nausea and vomiting. (so far) The worst is the fatigue, that i just call sleeping anymore. And the widespread pain and strength loss. I can barely use my hands anymore and often struggle to walk. Thanks for posting this, it's very informative....and i finally know why my abdomen sweats (I just spelled sweats seats and had to stare at it for a minute) lol. The only thing i didn't hear was standing MRI. I really think that is key. God Bless.
Very informative video I was diagnosed with CM in 2012,, I’m experiencing severe headache at that time that is getting worse that’s why I consented with decompression surgery but unfortunately I developed hydrocephalus so the doc had to placed a VP shunt on my brain but after a week I developed infection so my vp shunt was removed. Was back to the hospital for another surgery because the doc has to put another vp shunt to correct my hydrocephalus but again it’s unfortunate because at that time I had blot clots, n the doc has to removed the blot clots but after that I woke up unable to walk. Since 2013 I was bedridden until now, thank God this cbd was introduced to me so just started my cbd oil today hoping n praying it will help me.
Ive had so many interesting things happen with this as ive gotten better some things have become cross wired lol sound color pattern focus. For instance four leaf clovers i hear distinct ring and can spot them from the car i have a heighted intuition instinct of sorts a weird knowing
@jaime martinez That's not true for everyone, I know you meant well, but you really shouldn't tell people that. There's testimony right here in these comments from people it didn't work for. Some people have had multiple decompression's.
I've been to two neurologist. The first said I had a sinus infection that may have caused it (grand mal seizure) and referred me to another before she stopped working there. The second was honest and said he didn't know what was wrong and referred me to a medical university. Where I was finally diagnosed. CSF leakage, hydrocephalus decompression, and a craniotomy. I'm without a syrinx but I do have a cyst on the lower part of my spine. I can't think, remember, concentrate or plan. I have multiple neurologist and surgeons that have been so great at MUSC. The said my case is very rare because I went so long without any serious symptoms.
@@docholliday4672 sorry to hear that But do you have insomnia too? I have symptoms like you And Dr just said i have chronic migraine But it's worst than migraine
my husband suffers from type 1 chiari. i have been trying to educate myself on this matter and this has been the most informative video yet. allot of things have become more clear too me now. thank you!
How much is enough? Who measures that? How much pain and humiliation (I have Ptsd from horrible pissed off ignorant uneducated doctors!!!) And since there's no Help who says when it's ok to give up? enough is enough!
I was diagnosed with Chiari type 1 in 1996 at 16 years old and had a decompression surgery after being told my cerebellum was protruding through the cranial opening . I was told Dr. Roberts, from St. Luke's Medical Center in Houston, Tx, widened the cranial opening by one half inch, removed the back half of my C1 and C2 vertebrates, and put in some kind of "mesh" to "keep more of the brain matter from falling through". Despite the surgery, I still have 95% of the symptoms you're describing. Have improvements in the surgery helped improve the symptoms experienced after?
A couple of years ago I started doing this thing where I’d stop talking in the middle of what I was saying and I’d forget what I was talking about. My kids always tease me about it. I just diagnosed with this and I’m wondering if the Chiari has anything to do with my very airheadlike demeanor
i was diagnosed with Chiari Malformation (i cant recall which one) but i also have klippel feil syndrome.. (im 50) In the last year.. the ringing in my ears has gotten louder than ever. Ive always had memory issues, Attention Deficit, rapid heartbeat , amongst other things....
I don't have depression. I'm literally losing my mine from chronic and acute insomnia. I've lost almost everything now. Only one more thing and my life, that's all I have left. No qualified help.
I have horrible insomnia. It's not much, but it helped me sleep...5% lidocaine gell applied to my neck bf bed. Slept great. I found it on Amazon...Uber brand, fyi. Couldn't hurt.
hi dr.grant.I had chiari decompression back in 2017.I still get headaches @ times,vertigo,tinnitus nausea,balance issues,etc.I’m experiencing weakness,tingling & numbness due to the chiari,6-level cervical fusion & tethered spinal cord.I’d like to be seen @ Stanford if possible to find out why I still have all the numbness in my joints that radiate & no one can find the cause.
Because unfortunately it's a treatment and not a cure. Very few patients I have heard of having the surgery have ever had relief most end up worse with new symptoms
I enjoy hearing this video, eventhough, i had to go back on some info..and listen again. Its hard to understand like i will be hearing but not clicking on my mind. I have all symptoms mention just bot vomiting or difficult swallowing...like i have but i think its because my mouth feels theres too much food and choke. My memory is bad, i have like episodes on my left side that come and go and i feel like im going to fall but i dont. I had the ringing on my left side, sometimes i feel numbness on my face or my left side or my right side...chiari suxs i cant even express my self but this video supports my symptoms. I want surgery to alleviate my pressure on the head my neck or my eyes feels like theyre gonna pop out but im worried getting worse or not better
I had a meningioma removed a year ago. Also had radiation since it was Grade 2 A-typical. So I went to Disney world a couple of weeks ago and went on a ride I probably shouldn’t have, too many spins and bright lights. Well, when i got off the ride, I experienced clear thin fluid dripping out of my left nostril. I suspected CSF leak. It resolved quickly after a few minutes. Then just yesterday I had a similar episode. I seem to get light headed after, not sure if it’s my mind freaking me out or what.
I've was diagnosed after a car accident but was tested as a young child for nerve damage becuz I had numbness n tingling in my legs m 33 now I have horrible head aches severe muscular atrophy I used to b a gymnast when I was a kid I was very active granted I wouldn't have been had I know about my CHIARI so to b dealing with severe headaches/migraines with auras n spots etc nausea vomiting just feeling unwell depression severe anxiety but the big thing is my atrophy n it happened very quick I'm not used to being this weak it's very upsetting I haven't been able to hold my son since 2 months befor his 3rd birthday he's gonna b 7 on the 18th of this month I'm so afraid he may have it also he's going to nemours to get checked for it n also b checked for autism n some other issues. My mom has told me when she was pregnant with me they wanted her to do an amniocentesis n when she did they told her I was going to have down syndrome n I wonder if they thought that becuz of my CHIARI...
How would I go about being seen by you? I have Chiari 1 and also Graves disease and probably HMEDS and maybe other comorbids no one wants to bother looking into. I just get told by each doctor that symptoms I have aren't due to my condition that they treat me for and to go back to my other doctors, whom just say the same. The run around without any explanation, validation, or proper treatment is so hard/depressing. I need a doctor who is well educated and compassionate about how my life is being affected. I'm not a surgery candidate, they said, and I don't want that anyway unless it's a must.
I don’t understand why an mri of my brain shows a 9mm herniation yet doctors tell me chiari isn’t the cause of my symptoms. I ask what is? They say we do not know. Well those are not good doctors
I had an MRI that showed a Chiari malformation. My PCP told me it was nothing... I looked into it myself and many of the symptoms I was experiencing were explained by Chiari. Years later, and no longer insured... I'm miserable, I constantly have clear liquid leaking from my ears. I have so much pain and despite treatment with stimulants at the highest dose available, I still struggle to stay awake. I constantly choke on my saliva, and my memory has gotten so bad it scares my husband.... And that isn't even a tenth of what I experience on a daily experience.
Oh goodness. Sounds so much like me. I am hopefully seeing a neurosurgeon soon to see what he can do about my Chiari. Please keep in touch! We should stick together lpstaub31@gmail.com
Thank you for your service. Im in Massachusetts and have been slowly getting worse. 6 neurosurgeon consults and all have been telling me different things none being surgical. I cannot do this im so much worse. I have exhausted all measures. I have found a major kink in my brain mri possible CCI or IIH and how do i tell my next consult to test these and have a plan of action. Im trying to go back to school i cant work anymore my back from ddd is taking that away. I cant have any injections or anything until im decompressed. So what am i to do?
Does anyone have a back stifness with a chiari and without syrinx..first pain between shoulder blades and after couple months my back is stiff...lowed back more
Cakal Cakal yes comes down neck , goes further to what i'd say was the top of lungs , goes along shoulders and down arms. I have pins and needles in hands arms legs. When really bad i cant walk without help. I wondered what was happening the other day. I was confused could think properly. I was messaging my granddaughter said goodnight. This i didn't know i'd written or even knew what it was it was something about boulders🙄 it was a saying i'd never heard before to do with the Boulder dam in 1928 . Now i didn't know there was a boulder dam, i knew the Hoover dam. But in 1928 they were talking of boulders. What was that all about, i'm British. It was really weird. I started to feel better the next day the tingling took three days to go. My back still hurts and my limbs feel like they have lead weights on. Its horrible the headache wasn't too bad this time though.
Is it possible to have a symptomatic chiari WITHOUT headaches being a main constant problem? I have constant and bad fatigue, abdominal pain, constipation, neck pain, chronic nausea, ringing in the ears, loss of taste, no gag reflex, dizziness (esp. when getting up), bad concentration, hoarseness, shortness of breath, and anxiety. Have had CT scans, colonoscopy, upper endoscopy, cystoscopy, x-rays, liver and gallbladder ultrasounds, gallbladder test, and EKG. All were normal. The only thing I've ever been diagnosed with is chiari. I only have occasional headaches - they are not constant.
It is very possible. It seemed weird to me too in the beginning but yes... u can have other more severe problems than headaches. Speaking of own experience
I am a new Chiri. The guy at my university wont do surgery cause of my weight. It will affect his infection percentage he says. In the meantime I am taking a injection for Occipital Neuralgia headaches. That is the only thing keeping me from killing myself due to pain.
My nephew had to be taken into the ER because he had a seizure they found budd chiari malformation, my nephew sense 6th grade has been failing in school can not focus has short time memory issues, problems swallowing he is clumsy has sleeping issues . I've always thought he had A.D.D my question is can buddy chiari be the reason my nephew is failing in school? 6th grade and before he was a straight A student.
Pressure on inner ear inside making ear generate leak fluid outside. And auditory nerve halutionations deafness ??? Pressure to low ?symptoms come and go with atmospheric pressure
How often does Chiari run in families? My brother had a bad case requiring emergency decompression in his early teens. My sister & I both have scoliosis (which I just learned can literally be caused by Chiari) & both developed "migraines" in our 30's out of nowhere. Starting to worry. Our family has tons of weird medical issues that seem to indicate a larger undiagnosed genetic issue. Brother also had Pierre Robin Syndrome & an arachnoid cyst on the brain if that means anything.
Have you had anyone in the Dallas/Ft. Worth Texas area who has located a CSF specialist. Please let me know. I have had all of the symptoms mentioned after multiple spine surgeries and multiple csf leaks following 1. Epidural injections twice, 2. Major tear after my last spinal fusion/laminectomy in 2018 which these symptoms and so many others began in 2019 and also has a large collection of spinal fluid below L4-L5 in 2019 that nothing was ever done about that and since have had so so may lab tests ran for autoimmune diseases and diagnosed with TC and OSA but everything else is a mystery or they say related to my scoliosis and progressive degenerative disk disease or migraines? Note: I’ve only been in one car accident in the 70s Never any known head trauma.
I was falling Backwards for no reason.I have severe Scoliosis. I'm being treated for Nerve pain now in my Rt Arm..Nothing is helping so I have to have a MRI....If its A nerve problem I will go to Duke Spine Center..
How many chiari patients were born as c sections? I squished head plates not being properly squeezed into place to create natural ledge to hold up brain and tonsils?
Sorry this is a late response. My hips are unstable. My ankles are unstable as well. I always feel wobbley. I was only just diagnosed after suffering for years with pain at the base of the neck and headaches in my 20s.. they've become chronic.. explosive migraines with Auras/visual issues in my 30s. In Australia my doctor doesn't believe that Chiari 1 Malformation causes my pain.. neither did the MRI radiologist :/
J Hop those doctors are crazy! You need to seek help with the right doctor! Don’t suffer any longer and do something about it! There are a lot Of good doctors. Find the right one for you! Symptoms very in each and every person! We are all different
i have had a full foramen magnum decompression. Dr Grant, an i ask if anyone else has "central hyoventilation syndrome" as secondary to their chiari malformation? I have had it diagnosed in 2016. i use a ventilator
I am 40 and i JUST found out by accident from one of my records that i have a chiari malformation. Unbelievable bc no one bothered to tell me. I also had a stroke during a surgery that they never told me. But something was up with my left side post op and i told staff but they didnt note it or care 2 days later after i was released, my gf was tryingn to talk to me and i couldnt or it was lagged and left side weird. They took scans and said "later" so apparently the scan was looked at that night when i was gone but no one called to tell me. Never told me about the strokes after surgery either. Nm. Think i should get a lawyer. Any lawyers here? I promise there is a lot more.
Does the suprachiasmatic get altered light signals and even optic seizure migraine from eyes w papilledema swollen optic nerve and throw off the circadian rhythm?
Can hypersomnia and narcolepsy be connected to chiari? I have multiple health issues as well like remitting relapsing ms with type 1 chiari malformation.
Megan Marie Porter I myself have Chiari 1. If you would like to get in contact with me please let me know. Reply back to this message and we can go from there. I call tell you all about my experience and give you my advice. It’s always nice to talk to other who are experiencing the same roller coaster as I am. Thank you.
I know you wrote your comment along time ago. I have diagnosed narcolepsy and hypersonia and chiarimalfortion. I have had 2 brain surgeries and the narcolepsy has improved for short periods of time after each surgery. I am now on provigil to help with the narcolepsy and hypersomnia. I also need to get a current mri for my nuerosurgeon to see how my chiarimalfortion is doing.
Sleep apnea is so it's not a far leap to think other sleep disorders could be. Or perhaps you have undiagnosed sleep apnea complicating your diagnosis. In either case, hope you get answers because being tired all the time is no life at all. I've dealt with it since age 12.
@@MsBleau I agree 100% it's not a cure. I actually didn't remember asking this and the me now wouldn't ask such a blanket question or would ask and expand. I have done a lot of research over the last year or so
@@MsBleauI recently had an MRI for upper back pain and the results were a small syrinx and I was referred to a spine and neurosurgery center. I read up on it and it said a syrinx is syringomyelia which is rare but the majority of cases are caused by Chiari. I went to my appointment yesterday and the doctor said they misread my MRI and that I don’t have a syrinx I have a widened canal which is hydromyelia. He acted like it was no big deal and told me he could refer me for pain management . I looked it up when I got home and it said hydromyelia and syringmyelia are basically the same thing. It said when a child gets a syrinx it’s called hydromyelia and when an adult gets a syrinx it’s called syringomyelia . Now I’m really confused as to why the doctor told me that and if he’s the one that actually misread the MRI lol. I’m 59 and this has me wondering if I could have had a Chiari all my life without knowing it. From what I’ve read adults usually show symptoms between ages 20 -40 but I’m way past that lol.
Don't ask for help, demand it. If you have to go through ever doctor in your state, then so be it. Never give up, and don't be discouraged by the ignorant.
I was diagnosed with type 1 chiaris malformation in 2010,I have type3 loeys-dietz syndrome.
I can't drive a car,because I have seizures,and pass out randomly.
I found that hiking,jogging,and running can help the CSF circulate better.
I have less headaches,less blurred vision,and I've began a regiment of medical marijuana edibles to stop my seizures(low dosage)
Life is much higher quality now
I wish my drs had his attitude. They do not listen where I'm at. We need someone like him in Louisville, KY.
Dr nazair is like him verygood guy and honest
I used to live in Western Kentucky. Had my Chiari surgery done at IU/PUI in Indianapolis in 1999.
England too
Dr. Grant is a first class MD of the highest order! He helped our son tremendously. I certainly wish him the very best at Stanford and all those patients he will see are in the best hands possible.
Gee, a doc with an open mind, how refreshing.
Dr. Grant changed our daughter's life in 2012. Thank you Dr. Grant for giving our girl a chance to live pain free and thrive! We are forever thankful for you and your team.
I 100% concur with what dr. Grant says about neurosurgeons not following up with adult chiari patients. As an adult with Chiari and Syringomyelia, I got the decompression surgery pretty quick then later got vp shunted due to high icp and brain swelling. I thank God I made it through. My neurosurgeon ordered an MRI after 1.5 months of surgery..there was no change in the syrinx, I was still having symptoms n headaches were still there. After 2 more months ordered a head ct coz I was having severe headaches,which the dr found unbelievable....the radiologist said I had global cerebral edema which was definitely causing headaches, neurosurgeon said It was puzzling coz I already had a vp shunt n that they cant shunt you twice. I was sent home with more painkillers and diamox n the doctor made a joke that I probably had one of those swollen brains??? Really??
Long story short I have not been back in almost a year.
Wish we had more concerned doctors but I think as patients we really need to strongly advocate for ourselves as no one else will because I have found that when the disease is not taking the "normal " progression the drs think it should, the sort of dont believe you n sometimes gaslight you.
If the dr you have doesn't believe, understand or treat you right, find another one..I believe there are dr Grant's out there.
Tessy how are things now? My wife is dealing with Chiari and we are exploring treatment options
I have chiari malformation and i felt so relied after watching this, as a kid i had very bad anger issues. I still do but as a child i would just explode, no resistance to my reaction. I was diagnosed with anxiety and bipolar depression as a young teen. Ive always had balance issus, and been extremely clumsy. I have difficulty talking, I'll get internal shaking, it's hard for me to eat and breath at the same time, i have severe night sweats. Lots of numbing and pain all over my body. Nerve pain. When i got an mri due to shock headaches and sore neck pain. I felt relief that everything had a explanation.0 My Dr only said that it was nothing major and that it might go away. I felt lost again. Thank God for this Doctor right here. I know now to find another doctor who will take me serious.
Idk how relevant it is but i absolutely cannot do math. Its as if my brain goes blank as soon as numbers are mentioned
@@xpandmine Same here have always had alot of difficulty with calculating numbers since childhood and it made me feel stupid as I grew older it would bother me especially because otherwise I'm extremely intelligent. It always made me sad like what is wrong with my brain?😔 Oddly enough, sometimes I can without really thinking or using a calculator randomly figure exact numbers 🤔
I can relate with your symptoms
I wish there were more of this kind of information when I had my decompression surgery in 2010. The surgery did not relieve any symptoms for me including headaches, tinnitus, swallowing difficulties and vertigo. My surgeon told me "Your body did not respond in the manner that was expected", yet he deemed the surgery a success because it was done properly and without complications. Now, 7 years later, I am having yet another MRI on my brain because of increasing issues with vertigo. I certainly appreciate having this resource to educate myself, thank you for posting the videos.
Lori McGee how about the new mri?
Lol cakal, I noticed nobody here replies to questions asked in their comments. Any updates Lori.?
Great post.I am 47 and have all of these symptoms.. I have been diagnoses with Chairi a few years ago..but I do believe that I have had this issue since I was a child..as a child I have been to the doctor for inability to swallow,,neck pain' as an adult I find it difficult to have a normal day without some type of pain...i have the memory issues, dizzy spells, blackouts, vision problems, neck pain, speech issues. i noticed that some words I can no longer say.
I understand what you're going through. I was diagnosed at 32 after having a grand mal seizure. I also believe this was present all my life and I was having seizures in my sleep so it went unnoticed.
He is the best surgeon he helped me with my seizures I had brain surgery and for three months now I have not had one seizure he helps a lot of people he puts his time and effort in helping people have a better life
My husband had seizures that were hard to control. It's how he died (a ER Dr. wouldn't listen to me). I have hydrocephalus, Chiari, etc. The strange thing is that when we were first married we had few symptoms of anything that was wrong. I began to get serious headaches and vomiting issues. We found out that his "Petit" (what used to be called absence) seizures were serious when he had a huge Grand Mal at 24 yrs old......after that, the seizures were frequent (the absence) and the Grand Mals monthly. He couldn't work. I worked until I was 40 and on the advice of my Neurosurgeon (who was Chief Neurosurgeon/Professor & Chair of University of Michigan) I took disability and I wasn't sorry I did that. I was given 11 yrs of a wonderful life with my husband that I loved very much. He wouldn't have died had the ER doctor paid attention to me that day. That's hard to get over. My husband deserved a longer life.
I wish this doctor was closer to me.
@@holiday-td6hx ❤praying for you now as I read this. May God comfort your heart and bring you peace and healing, I pray in Jesus Name. “He is very near to the broken hearted and He binds up their wounds.” ❤
Thanks for sharing
I have Chiari Type 1 and I have a big issues with my memory. I tend to even forget what I was talking about during a normal conversation. About two weeks ago I was driving and completely forgot where I was going. I also blackout and this has been the scariest experiences of my life. I am currently looking for a good neurosurgeon in Atlanta and I hope to feel better soon :(
Kimberly Russell did you had syrinx
Yessss i ave been experiencing for years now with other symptoms but my neurosurgeon said its not chiari symptom
Oh my gosh That same thing happened to me while driving on a familiar rout. I all of a sudden didn't know where I was. That was frightening. I've never been diagnosed with Chiari, but my 7 year old has. Just makes me wonder.
Im at 17mm down and i have decompression surgery march 16th. Ive known ive had it all my life and it was doable up until the last two years. I have so many symptoms is sucks but knowing someone cares and actually validates what we have isnt "in our head" helps so much so thank you.
What were your symptoms and how how did your surgery go?
Surgery was rough but worth it. Symptoms came back after a year
@@XxMidnightRain18xX were the symptoms that came back as bad as they were before the surgery?
@@pamelad3375 some yes some no
This man gave me as an adult with Chiari 1 hope ... but I have been through it now I finally found a Dr that sounds like he thinks this way.. this sounds crazy but Dr . Grant is my Standard!!!!
Great video, very informative. The listening to patients and family really grabbed me....That's nonexistent with every doctor i've spoken with about my chiari. Actually when i was originally diagnosed, i wasn't even told....I found out later from another doctor who got my records. And recently i was told chiari is not painful by a neurologist who i believe thought i was drug-seeking, or he was just an idiot...maybe a little of both. So i'm doing my own research now after a decade of misery. My pain is horrible, and the fatigue is out of control now. I've been taking Adderall for it, and I can take that, drink an energy drink and a 5 hour energy shot....and fall asleep. When i should be wired and jittery....I'm tired and my heartrate is in the 50's after all that. I want my life back. Thanks for the video. ~Too much brain to contain
humasima I've had symptoms and pain far back as I can remember and continue being treated like a dirty street walker with drug addiction begging for relief from pressure and pain. Im 98% of my life now in my bed. No neurologist in my area will see me and was told even with worsening symptoms that chiari was treated all it can so now acupuncture pain management is my only option! management
humasima same!
I started seeing a spinal pain doctor. He has done some injections and blocks in my spine and relieved that, and he is sending me to a neurosurgeon to finally have this operated on. After 41 years of suffering. I am in bed all the time. Unable to work, sleep, function. Period. I pray for the surgery.
humasima I have had the same problems. Please email me, I'd like to stay in touch! Lpstaub31@gmail.com
I never had pain
I have ACM and had decompression surgery years ago. I'm 30 now. I live in Georgia and would do anything to have a doctor like this man. I've been told I'm crazy and a 'drug seeker' for decades now. People just don't understand.
Miranda Ann I've dealt with being called attention seeking at a very young age I was put on strong mental health meds . I dont bother with the ER I'm treated horribly. Dr Than at OHSU in 2015 told me that there's no reason for me to have symptoms cuz I was CURED with surgery!!! And now no neurologist will see me I was told only option left for me is pain management... I'm losing strength rapidly in my left arm again and my symptoms have been progressing to where I'm in bed 98% of my life. We need HELP!!!!
Miranda Ann how are you now?? When was your surgery? Did you had sryrinx..or blocked flow..
მირანდა თუ შეგიძლია შემეხმიანოთ კითხვა მაქვს თქვენთან.597 00 10 41
@@cynthiainezgonz6906 any update?x
@@emilybalfour7597 No especially with the way everything has been going to hell the last couple years . Its made finding a specialist and being able to afford travel expenses is now impossible for the time being. I was looking into The Mayo clinic they have Chiari center with specialists but it didn't work out.
I have had the posterior fossa decompression with duraplasty . I have Chiari 1.5 . 22mm with medulla herniantion. My symptoms have improved greatly . I still have many issues , but my concerns are with the cognitive issues . I was once a line cook. Those days are gone forever ,. Now, I can't be interrupted while cooking dinner . Memory , attention, and set shifting are where I need help . I can say, planning and decision making have improved since surgery .
May I ask u what symptons improved and if they are still improved to this day? I am really happy to hear that ur decompression helped somewhat :)
My Surgeon and hero. He recently helped me with a revision Chiari that was tricky but he had faith in me and himself that he could help. Cognitively I am 90% better (this made work difficult) and my specific pain I had from the first decompression in 2016 is gone. Just have some surgical healing stuff but Dr. Grant and Breanna have been so supportive and caring.
I was diagnosed with Pseudo tumor cerebri in 1990 age 20. I had at least 2 spinal taps each year until decompression surgery in 2007 at age 37. I continue to have nerve pain and numbness that did not fully correct itself. Prior to surgery my entire right side was so numb that I could barely walk or carry an item. Back during my initial diagnosis and surgery there was only a minute amount of information to be found about either diagnosis. Now that my grandchild is experiencing similar issues I am researching and finding a ton of information and stories from others. I feel like my surgery was nearly as successful as the surgeon said it is was because I have not required multiple surgeries. Unless you count the peak during a day surgery into my first surgery when I thought the stitches tore open.
I have had additional MRI's periodically just to check and make my PCP happy, so far not significant changes. I think this Dr. Grant broke it all down brilliantly and I commend him for that but I think adults should be followed a lot closer than they are perhaps that would have given me someone to talk to about the small deficits that I have that I learned through this video could be related to Chiari not lupus or an unknown such as no sense of smell, nerve or muscle under tongue periodically pulls tight, loss of words, sleep apnea, depression and anxiety.
If you are going to have the surgery be sure your comfortable with your neurosurgeon the most guarded parts of your body.
Ive noticed that bruxism clinchin g seems to occur with csf leak low pressure and syrinxes
My daughter is 27 years old and was just diagnosed with Chiari 1 malformation. Somehow the neurologist fails to link her leg tingling, numbness, shaking and weakness to the Chiari. She also has a severe headache, neck pain, mood swings, a coloboma in one eye, stuttering. Thankfully no syrinx formation. These symptoms just showed up out of nowhere in the past 2-3 years. I would love some more information on how to manage nonsurgically. It's frustrating when you read the research and the neurologists try to tell you the symptoms have nothing to do with the Chiari. This video has been informative but I need a neurologist like him to help my daughter in the South Florida area
@@RealDoubleFatNoob how many mm herniation
Did she end up getting surgery and how is she doing?
First and foremost, thank you for your service, as I am a Veteran as well who served two tours in Iraq (Western Al Anbar Province).
This presentation was definitely well put together and detailed. Probably, the first lecture of it's type that I've actually understood each point discussed. More importantly, after participating in a research study at VAMC (Veterans Affairs Medical Center) called "Group-Based Exposure Therapy" for Veterans who have been diagnosed with Chronic PTSD, a MRI was needed prior to participating in the study. Long story short, the results from that study, along with findings suggested CHIARI MALFORMATIONS from the viewed images. Although, I currently have symptoms associated with CM, I refuse to accept them, without talking with a medical professional as yourself, who takes, in my opinion, a more practical approach, versus just operating without considering other causes that may attribute to ongoing headaches and balance issues.
If necessary, I'm willing to travel, to speak further with you or your staff.
Thank you, once again for this presentation....very informative.
I had surgery for Chiari and ended up on Ventilator .Was comatose for 9-10 days.Dr.Was negligent and didn't put me where I would have been watched...ICU for instance. I stopped breath ing 3 Times...Brain swell and rehab to learn to walk agin..Its Been10 years and I'm rally off Balance
I have chiari and scared. It is very scary. I had suboccipital craniectomy chiari decompression surgery two and half years ago. Now, I have mild hydrocephalus, mild tonsillar impaction, basillar impression, and cervical neck instability. This is scary to me physically and emotionally. It is hard to stay brave all the time.
Thank you for speaking having an open conversation about Chiari’s unknowns. I was decompressed in 2008. My quality of life is better but definitely suffer from anxiety & insomnia. Brain surgery also changed some pieces of my personality. The cerebellum is a mystery for sure & I know now responsible for so much more!
What was the brain surgery from? Can tumor removals cause chiari?
@@mattscott6591 I am not a doctor but an experienced patient. I imagine that if the tumor or swelling following removal surgery caused an increase in your cerebral-spinal fluid pressure, either as intracranial hypertension or hydrocephalus, then it seems reasonable Chiari could develop. It would be classified as acquired Chiari which means it was caused by injury, usually a Traumatic Brain Injury (TBI). The adult skull cannot expand so, increased pressure will force the brain to herniate at the base of the skull. It is typically seen on an MRI so, you should review your last imaging. It is not always true though. The two most common reas. One is, there is a type called Chiari 0 (zero). If I understand it correctly, this is when the brain does not herniate but blocks the spinal canal. And two, the herniation may be gravity induced which means when you are laying flat, as is the case with over 90% of MRI machines, it is not visible but will be visible when you are in the upright position. Upright MRI's are becoming more popular and many insurance companies now cover it. Upright MRI's are helpful for even those who have a confirmed herniation because of the gravity factor. My herniation was measured at 8 during the standard MRI however, it increased to 11 when measured in the upright position. This is probably more than you wanted to know, lol. I hope it helps.
@@sandilou2U thanks for that info. Can i get your email to talk back and fourth?
Trying to be patient waiting for a response from Dr. Grant to accept to see me for my Chiari. Fresno Surgeon said I need the surgery but I’ve heard a lot of good things from Dr. Grant and this video made me feel soooo much better! All of my symptoms make sense now! I’m logging it alllll down as there are many different things that are increasing and happening! Mainly speech and memory. Crazy!
What are your symptoms? Im a board certified youtube commenter
Graciela Balboa have you had your surgery yet!! I have Chiari as well. I live in pismo beach.... hope all is well. If you need any advice or information please let me know thank you.
Oh my gosh you just described my life at 45. I am at a 12 right now w dimished CSF flow on CINE. 😢I’m too scared to get the decompression surgery.
Don't, it's a treatment not a cure. most end up worse or different symptoms.50% will have a dura leak requiring going back in the next day, 20% have immediate issues post surgery.
Very informative!! But that cameraman drove me crazy! The images are apart of the lecture & it would've been great to follow along with all of the images.
I'm living with it presently
It's hell on earth
Nice video but Dr Grand totally missed Basilar Invagination, Orthoflexed odontoid and lung disorders. wanted to hear more on this along with Chiari..
Excelent!!! Thanks
I have my first neurologist appointment tomorrow to begin the process of seeing if I have Chiari and/or a CSF leak... Wish me luck!
Listen to your patients? What is this voodoo you speak of? I have Chiari I and everything in those lists except nausea and vomiting. (so far) The worst is the fatigue, that i just call sleeping anymore. And the widespread pain and strength loss. I can barely use my hands anymore and often struggle to walk. Thanks for posting this, it's very informative....and i finally know why my abdomen sweats (I just spelled sweats seats and had to stare at it for a minute) lol. The only thing i didn't hear was standing MRI. I really think that is key. God Bless.
Very informative video I was diagnosed with CM in 2012,, I’m experiencing severe headache at that time that is getting worse that’s why I consented with decompression surgery but unfortunately I developed hydrocephalus so the doc had to placed a VP shunt on my brain but after a week I developed infection so my vp shunt was removed. Was back to the hospital for another surgery because the doc has to put another vp shunt to correct my hydrocephalus but again it’s unfortunate because at that time I had blot clots, n the doc has to removed the blot clots but after that I woke up unable to walk. Since 2013 I was bedridden until now, thank God this cbd was introduced to me so just started my cbd oil today hoping n praying it will help me.
Great information! Thank you for sharing!
Ive had so many interesting things happen with this as ive gotten better some things have become cross wired lol sound color pattern focus. For instance four leaf clovers i hear distinct ring and can spot them from the car i have a heighted intuition instinct of sorts a weird knowing
Great video with lots of valuable information!
Thank you for this
Kara White it's successful, go for it. I did and quality of life is better post op.
@jaime martinez That's not true for everyone, I know you meant well, but you really shouldn't tell people that. There's testimony right here in these comments from people it didn't work for. Some people have had multiple decompression's.
humasima how about you? Did you had surgery?
Hi Kara, did you go forward with the surgery? I was recently diagnosed and surgery is recommended if the symptoms get worse.
I've been to two neurologist. The first said I had a sinus infection that may have caused it (grand mal seizure) and referred me to another before she stopped working there. The second was honest and said he didn't know what was wrong and referred me to a medical university. Where I was finally diagnosed. CSF leakage, hydrocephalus decompression, and a craniotomy. I'm without a syrinx but I do have a cyst on the lower part of my spine. I can't think, remember, concentrate or plan. I have multiple neurologist and surgeons that have been so great at MUSC. The said my case is very rare because I went so long without any serious symptoms.
How are you now?
@@somneang87time29 still have seizures. Slightly controled. My right frontal lobe is wrecked from years of pressure
@@docholliday4672 sorry to hear that
But do you have insomnia too?
I have symptoms like you
And Dr just said i have chronic migraine
But it's worst than migraine
@@somneang87time29 I get 4 hours of sleep religiously
@@docholliday4672 you better than me
I take sleep pill that help me sleep
Sometime get lot vivid dream
I'm in Canada..being wholly abused by the system. 53 yrs old male..multiple issues.
such a tragic series of issues..practically suicidal by the hour..
Great discussion. Keep at it Dr. Grant 👌
my husband suffers from type 1 chiari. i have been trying to educate myself on this matter and this has been the most informative video yet. allot of things have become more clear too me now. thank you!
How much is enough? Who measures that? How much pain and humiliation (I have Ptsd from horrible pissed off ignorant uneducated doctors!!!) And since there's no Help who says when it's ok to give up? enough is enough!
I was diagnosed with Chiari type 1 in 1996 at 16 years old and had a decompression surgery after being told my cerebellum was protruding through the cranial opening . I was told Dr. Roberts, from St. Luke's Medical Center in Houston, Tx, widened the cranial opening by one half inch, removed the back half of my C1 and C2 vertebrates, and put in some kind of "mesh" to "keep more of the brain matter from falling through". Despite the surgery, I still have 95% of the symptoms you're describing. Have improvements in the surgery helped improve the symptoms experienced after?
Wow smh
A couple of years ago I started doing this thing where I’d stop talking in the middle of what I was saying and I’d forget what I was talking about. My kids always tease me about it. I just diagnosed with this and I’m wondering if the Chiari has anything to do with my very airheadlike demeanor
i was diagnosed with Chiari Malformation (i cant recall which one) but i also have klippel feil syndrome.. (im 50) In the last year.. the ringing in my ears has gotten louder than ever. Ive always had memory issues, Attention Deficit, rapid heartbeat , amongst other things....
I don't have depression. I'm literally losing my mine from chronic and acute insomnia. I've lost almost everything now.
Only one more thing and my life, that's all I have left. No qualified help.
I have horrible insomnia. It's not much, but it helped me sleep...5% lidocaine gell applied to my neck bf bed. Slept great. I found it on Amazon...Uber brand, fyi. Couldn't hurt.
@@jen0667 of course I tried that
hi dr.grant.I had chiari decompression back in 2017.I still get headaches @ times,vertigo,tinnitus nausea,balance issues,etc.I’m experiencing weakness,tingling & numbness due to the chiari,6-level cervical fusion & tethered spinal cord.I’d like to be seen @ Stanford if possible to find out why I still have all the numbness in my joints that radiate & no one can find the cause.
Because unfortunately it's a treatment and not a cure. Very few patients I have heard of having the surgery have ever had relief most end up worse with new symptoms
Thanks , very good lecture
I enjoy hearing this video, eventhough, i had to go back on some info..and listen again. Its hard to understand like i will be hearing but not clicking on my mind. I have all symptoms mention just bot vomiting or difficult swallowing...like i have but i think its because my mouth feels theres too much food and choke. My memory is bad, i have like episodes on my left side that come and go and i feel like im going to fall but i dont. I had the ringing on my left side, sometimes i feel numbness on my face or my left side or my right side...chiari suxs i cant even express my self but this video supports my symptoms. I want surgery to alleviate my pressure on the head my neck or my eyes feels like theyre gonna pop out but im worried getting worse or not better
I lm very clumpsy loose balance my kids can notice i cant remember words..i suffer depression for years anxiety stress oh god
Agh. Hip unstableness and problems with falling to the ground randomly like 20 times a day?
thanku
I had a meningioma removed a year ago. Also had radiation since it was Grade 2 A-typical. So I went to Disney world a couple of weeks ago and went on a ride I probably shouldn’t have, too many spins and bright lights. Well, when i got off the ride, I experienced clear thin fluid dripping out of my left nostril. I suspected CSF leak. It resolved quickly after a few minutes. Then just yesterday I had a similar episode. I seem to get light headed after, not sure if it’s my mind freaking me out or what.
I've was diagnosed after a car accident but was tested as a young child for nerve damage becuz I had numbness n tingling in my legs m 33 now I have horrible head aches severe muscular atrophy I used to b a gymnast when I was a kid I was very active granted I wouldn't have been had I know about my CHIARI so to b dealing with severe headaches/migraines with auras n spots etc nausea vomiting just feeling unwell depression severe anxiety but the big thing is my atrophy n it happened very quick I'm not used to being this weak it's very upsetting I haven't been able to hold my son since 2 months befor his 3rd birthday he's gonna b 7 on the 18th of this month I'm so afraid he may have it also he's going to nemours to get checked for it n also b checked for autism n some other issues. My mom has told me when she was pregnant with me they wanted her to do an amniocentesis n when she did they told her I was going to have down syndrome n I wonder if they thought that becuz of my CHIARI...
How would I go about being seen by you? I have Chiari 1 and also Graves disease and probably HMEDS and maybe other comorbids no one wants to bother looking into. I just get told by each doctor that symptoms I have aren't due to my condition that they treat me for and to go back to my other doctors, whom just say the same. The run around without any explanation, validation, or proper treatment is so hard/depressing. I need a doctor who is well educated and compassionate about how my life is being affected. I'm not a surgery candidate, they said, and I don't want that anyway unless it's a must.
I don’t understand why an mri of my brain shows a 9mm herniation yet doctors tell me chiari isn’t the cause of my symptoms. I ask what is? They say we do not know. Well those are not good doctors
Dude going through the exact thing. I’ll keep looking for a doctor who believes me and helps me: tired of this crap.
Same thing! Mine is 9mm too and I have all the symptoms! But no it's not the chiari that's the cause.... It makes no sense! So so sick of it!
Sadly I’ve come to realize doctors aren’t so great. They miss things all the time or are just too lazy or busy to care
I had an mri too in 2011. Mine was at a 9mm too.
Is hard to find a neurosurgeon who is an expert in chiari. But chiari isn't about the size of the herniation. Is about location location location.
I had an MRI that showed a Chiari malformation. My PCP told me it was nothing...
I looked into it myself and many of the symptoms I was experiencing were explained by Chiari. Years later, and no longer insured... I'm miserable, I constantly have clear liquid leaking from my ears. I have so much pain and despite treatment with stimulants at the highest dose available, I still struggle to stay awake. I constantly choke on my saliva, and my memory has gotten so bad it scares my husband....
And that isn't even a tenth of what I experience on a daily experience.
Rikki Hurt u there
:(
Sounds like you are doing it rough, hopefully you can find a way to get treatment
Oh goodness. Sounds so much like me. I am hopefully seeing a neurosurgeon soon to see what he can do about my Chiari. Please keep in touch! We should stick together lpstaub31@gmail.com
Rikki Hurt hello if you would like some advice please let me know. I myself have Chiari.
I now have ocular hypertension because of prolonged pressure as a result of Chiari.
Thank you for your service. Im in Massachusetts and have been slowly getting worse. 6 neurosurgeon consults and all have been telling me different things none being surgical. I cannot do this im so much worse. I have exhausted all measures. I have found a major kink in my brain mri possible CCI or IIH and how do i tell my next consult to test these and have a plan of action.
Im trying to go back to school i cant work anymore my back from ddd is taking that away. I cant have any injections or anything until im decompressed. So what am i to do?
Is it common for Chiari Symptoms to come and go?
Exciting stuff.
Does anyone have a back stifness with a chiari and without syrinx..first pain between shoulder blades and after couple months my back is stiff...lowed back more
I get the middle of my back with pain passing to my arms and legs.
Cakal Cakal yes comes down neck , goes further to what i'd say was the top of lungs , goes along shoulders and down arms. I have pins and needles in hands arms legs. When really bad i cant walk without help. I wondered what was happening the other day. I was confused could think properly. I was messaging my granddaughter said goodnight. This i didn't know i'd written or even knew what it was it was something about boulders🙄 it was a saying i'd never heard before to do with the Boulder dam in 1928 . Now i didn't know there was a boulder dam, i knew the Hoover dam. But in 1928 they were talking of boulders. What was that all about, i'm British. It was really weird. I started to feel better the next day the tingling took three days to go. My back still hurts and my limbs feel like they have lead weights on. Its horrible the headache wasn't too bad this time though.
Is it possible to have a symptomatic chiari WITHOUT headaches being a main constant problem? I have constant and bad fatigue, abdominal pain, constipation, neck pain, chronic nausea, ringing in the ears, loss of taste, no gag reflex, dizziness (esp. when getting up), bad concentration, hoarseness, shortness of breath, and anxiety. Have had CT scans, colonoscopy, upper endoscopy, cystoscopy, x-rays, liver and gallbladder ultrasounds, gallbladder test, and EKG. All were normal. The only thing I've ever been diagnosed with is chiari. I only have occasional headaches - they are not constant.
My headaches were not constant...and many people with Chairi have a connective tissue disorde like Ehlers Danlos Syndrome
Possible
It is very possible. It seemed weird to me too in the beginning but yes... u can have other more severe problems than headaches. Speaking of own experience
It’s the neck pain that’s pretty constant rather than the whole headache thing
My daughter developed schizophrenia with this condition.
I am a new Chiri. The guy at my university wont do surgery cause of my weight. It will affect his infection percentage he says. In the meantime I am taking a injection for Occipital Neuralgia headaches. That is the only thing keeping me from killing myself due to pain.
That's when i get up and walk out. The suffering have no time for idiocy. And i tell them that.
I hope you're okay
Thanks. :)
What about upper cervical chiropractic and chiari?
No
My nephew had to be taken into the ER because he had a seizure they found budd chiari malformation, my nephew sense 6th grade has been failing in school can not focus has short time memory issues, problems swallowing he is clumsy has sleeping issues . I've always thought he had A.D.D my question is can buddy chiari be the reason my nephew is failing in school? 6th grade and before he was a straight A student.
Pressure on inner ear inside making ear generate leak fluid outside. And auditory nerve halutionations deafness ??? Pressure to low ?symptoms come and go with atmospheric pressure
After 4 yrs of decompression surgery my daughter suffers from debilitating headaches.
How often does Chiari run in families? My brother had a bad case requiring emergency decompression in his early teens. My sister & I both have scoliosis (which I just learned can literally be caused by Chiari) & both developed "migraines" in our 30's out of nowhere. Starting to worry. Our family has tons of weird medical issues that seem to indicate a larger undiagnosed genetic issue. Brother also had Pierre Robin Syndrome & an arachnoid cyst on the brain if that means anything.
Have you had anyone in the Dallas/Ft. Worth Texas area who has located a CSF specialist. Please let me know. I have had all of the symptoms mentioned after multiple spine surgeries and multiple csf leaks following 1. Epidural injections twice, 2. Major tear after my last spinal fusion/laminectomy in 2018 which these symptoms and so many others began in 2019 and also has a large collection of spinal fluid below L4-L5 in 2019 that nothing was ever done about that and since have had so so may lab tests ran for autoimmune diseases and diagnosed with TC and OSA but everything else is a mystery or they say related to my scoliosis and progressive degenerative disk disease or migraines? Note: I’ve only been in one car accident in the 70s
Never any known head trauma.
I was falling Backwards for no reason.I have severe Scoliosis. I'm being treated for Nerve pain now in my Rt Arm..Nothing is helping so I have to have a MRI....If its A nerve problem I will go to Duke Spine Center..
How many chiari patients were born as c sections? I squished head plates not being properly squeezed into place to create natural ledge to hold up brain and tonsils?
Why do neurosurgeon think that after the surgery is done i should be better but unfortunately im still having major symptoms
My mother has this condition, I have noticed some symptoms and I’m only 21 but scared to go to the doctor
Dont be..once i found out what it was it made scence...i though i was going crazy but now i Just deal with it for the moment
My daughter was mis diagnosed from 2 to 31
I seem to be loosing my vision
I've seen a few of these videos and they all discuss Chiari type1. What about Chiari type2? Are there any videos of this type of Chiari on the site
Anybody with chiari have problems with hip unstableness
Sorry this is a late response. My hips are unstable. My ankles are unstable as well. I always feel wobbley. I was only just diagnosed after suffering for years with pain at the base of the neck and headaches in my 20s.. they've become chronic.. explosive migraines with Auras/visual issues in my 30s. In Australia my doctor doesn't believe that Chiari 1 Malformation causes my pain.. neither did the MRI radiologist :/
Hips especially right and both ankles are hypermobile.
J Hop those doctors are crazy! You need to seek help with the right doctor! Don’t suffer any longer and do something about it! There are a lot
Of good doctors. Find the right one for you! Symptoms very in each and every person! We are all different
I'm much worse now than my drinking days.
Yes!!!!!!!
i have had a full foramen magnum decompression. Dr Grant, an i ask if anyone else has "central hyoventilation syndrome" as secondary to their chiari malformation? I have had it diagnosed in 2016. i use a ventilator
I am begging for help 😭 my surgeon isn’t practicing anymore Petra Klinge and I am severely struggling
Dr. Prakash Sampath took over for her at RI hospital. He is a good surgeon he did my back.Altho, I have chiari, and I refused decompression.
I have blackouts but was told they don't come with Chiari. What do you thank I should have done.
angel bowen See Fraser Henderson, Faheem Sandhu
I think they do. I know many with blackouts. I think it’s actually why you have to report your condition to DMV
I am 40 and i JUST found out by accident from one of my records that i have a chiari malformation. Unbelievable bc no one bothered to tell me. I also had a stroke during a surgery that they never told me. But something was up with my left side post op and i told staff but they didnt note it or care
2 days later after i was released, my gf was tryingn to talk to me and i couldnt or it was lagged and left side weird. They took scans and said "later" so apparently the scan was looked at that night when i was gone but no one called to tell me. Never told me about the strokes after surgery either. Nm. Think i should get a lawyer. Any lawyers here? I promise there is a lot more.
Check around on the internet for personal injury attorneys. Consultations are free. Get on this NOW!!!
Does the suprachiasmatic get altered light signals and even optic seizure migraine from eyes w papilledema swollen optic nerve and throw off the circadian rhythm?
Nobody ever mentions psychiatric problems.
Please educate Tucson drs
Me too❤
I am stuck with a lazy doctor who wont cure my csf leak I am almost brain dead. I have switched but it's no use.
Don't cut off parts of my brain please!
Where is this doctor? Im in NY
At 11:20... Can someone explain, in detail, how spinal taps cause the tonsils to drop?
I would think the suction. pulling the fluid from the base of spine.
Can hypersomnia and narcolepsy be connected to chiari? I have multiple health issues as well like remitting relapsing ms with type 1 chiari malformation.
Megan Marie Porter I myself have Chiari 1. If you would like to get in contact with me please let me know. Reply back to this message and we can go from there. I call tell you all about my experience and give you my advice. It’s always nice to talk to other who are experiencing the same roller coaster as I am. Thank you.
I know you wrote your comment along time ago. I have diagnosed narcolepsy and hypersonia and chiarimalfortion. I have had 2 brain surgeries and the narcolepsy has improved for short periods of time after each surgery. I am now on provigil to help with the narcolepsy and hypersomnia. I also need to get a current mri for my nuerosurgeon to see how my chiarimalfortion is doing.
Sleep apnea is so it's not a far leap to think other sleep disorders could be. Or perhaps you have undiagnosed sleep apnea complicating your diagnosis. In either case, hope you get answers because being tired all the time is no life at all. I've dealt with it since age 12.
What about schizophrenia and seizures.
What about psychosis.
I wish you were my guy... I'm messed up my eyes are going a bit....i lose the use of my arm now now and then. I do have chari
PS I think you are top brass..
My daughter ended up with schizophrenia.
So just because someone has symptoms that effect their life greatly doesn't mean they are a good candidate for surgery?
correct, it's a treatment not a cure. Many end up w new symptoms, post surgery issues. It seems to work best on children than adults
@@MsBleau I agree 100% it's not a cure. I actually didn't remember asking this and the me now wouldn't ask such a blanket question or would ask and expand. I have done a lot of research over the last year or so
@@MsBleauI recently had an MRI for upper back pain and the results were a small syrinx and I was referred to a spine and neurosurgery center. I read up on it and it said a syrinx is syringomyelia which is rare but the majority of cases are caused by Chiari. I went to my appointment yesterday and the doctor said they misread my MRI and that I don’t have a syrinx I have a widened canal which is hydromyelia. He acted like it was no big deal and told me he could refer me for pain management . I looked it up when I got home and it said hydromyelia and syringmyelia are basically the same thing. It said when a child gets a syrinx it’s called hydromyelia and when an adult gets a syrinx it’s called syringomyelia . Now I’m really confused as to why the doctor told me that and if he’s the one that actually misread the MRI lol. I’m 59 and this has me wondering if I could have had a Chiari all my life without knowing it. From what I’ve read adults usually show symptoms between ages 20 -40 but I’m way past that lol.
Ma fille a la chiari et une spinadifida bifida melangocel et une hydrocephal tri latéral j'ai besoin d'aide. Elle a 02 mois please help me
Shelly Ray Skalicky 7/28/08 Duke university hospital.
Why can’t drugs used for MS be tried for helping chiari patients ??
Why posts this stuff ....it is informative yes... But it hurts so much to know some people can help but... Yeah
Steve Bee I was thinking the same thing
Don't ask for help, demand it. If you have to go through ever doctor in your state, then so be it. Never give up, and don't be discouraged by the ignorant.
Color tests would Not work if your colorblind