I had surgery 19 years ago for chiari malformation and syringomyelia at Toronto western hospital . They removed a piece of my skull . I have an MRI every year to make sure nothing has change . I am one lucky lady I had the right doctor .
@@sandywhat2429I’m in Saskatchewan and just got diagnosed with this and have been referred to Neurology. It was seen on a CT scan 10 year ago and nobody told me. Now I’m fainting, having involuntary movements, eye twitching etc.
@@BrandyRichardson-si9iz so you haven't seen a neurosurgeon yet? How sick are you on a scale of 1-10? I'm almost ready to give up. Do you want to connect somehow? That's fine if not. ❤
@@trishayamada807 My brother went to 15 different brain surgeons said different words is not caused by this disease diary every day I'm tired of suffering
I have known about my Chiari malformation since 2013. It's been down played and dismissed as nothing and been causing problems this whole time. 😢 Thank you for this information it has been very helpful.
i was just diagnosis with chiari malformation, and i will see a surgeon in about two weeks! i have a lot of anxiety about this! watching this video was very helpful but still makes me super scared for surgery :(
I had the surgery 2 years ago, but my symptoms are back worse than they ever been. I know everyone is different but I'm so scared, I'm so sorry to even mention this, but in this comment section I feel like I'm not alone with this. Im waiting on another MRI and Im hoping something else can be done to help me.
Hi, when mine came back it was different this time, to later find out that I had scar tissue from the last surgery sixteen years ago. I wasn't prepared for this surgery mentally and physically this time. While healing Covid 19 decided to come here. I was so weak in my body also sixteen years older. Keep your head up and rest after your surgery.
My son had his 1st chiari decompression surgery in January 2009. In march of 2020 he had another surgery for the syrinx. It wasn't successful. This past week he had another surgery for the syrinx starting from the base of the skull to C-6. They placed a tube through the cyst that drains down his spine. He is now 25 years old. They told us that the tube inside the cyst can get scar tissue and eventually he'll need to have this surgery again.
My mom had GBM in her left frontal lobe. She was sleeping all day so we took to the hospital and that’s when they told us that there’s a new tumor that’s pushing down her spinal cord. It was located in the 4th ventricle and hydrocephalus of the brain. They said it showed sign of tonsillar herniation. They offered us surgery but it wouldn’t improve her quality of life. So we decided not do it. Now she passed, about a month ago, peacefully. I don’t think my mom would have wanted a surgery that wouldn’t improve her health. I hope I made the right decision for her.
I'm 69 years old and my chiari was found 3 months ago. After living (if it can be called living) all my life with pain and other symptoms I'm saying "no thanks" to getting my head split open. However, Just knowing, after all these years, that I wasn't crazy or lazy or irresponsible or imagining things is a tremendous relief.
I've been battling chiari type 1 with epilepsy. My cognition and memory have been completely damaged. I had decompression, craniotomy (right frontal lobe), and a nasal CSF leak repair. The anxiety and panic attacks are worse than the condition
Can I ask a little about your nasal CSF leak? Did the Chiari Malformation cause it? How was it diagnosed? I'm pretty sure I have both a Chiari Malformation and a nasal CSF leak, but the doctors say I don't have a CSF leak because I'm a man without EDS or any trauma to the head, so they don't think there's any cause of it. In my mind, a Chiari Malformation causes intercranial hypertension which can then cause a CSF leak.
Hello, When I saw your username was DocHolliday with two LL's, I thought hmmm, its either a Tombstone fan or perhaps a long lost relative. My daughter, 15 y/o, has Chiari 1 malformation and we are going for our neurosurgery consult next week. I am afraid for her, but don't let it show. And your comments inspired me to want to ask more questions, as she's having terrible headaches, neck, and back pain. Plus her MRI showed significant crowding and some minor leaking, so I know they're not going to contemplate watching and waiting. I know its surgery time. Your comments suggested that a number of procedures didn't take away the anxiety that goes along with having any brain-based malfunction. But did it cure the Chiari issues? Do you still have neck, head, and shoulder pain? If you could do it over again, what are some questions or boundaries you would draw? Your help and insight means a lot. Thank you in advance. Best, Karen Holliday
I found out I have this a week ago. My headache has been progressively getting worse over the past month. After an MRI, they said I have Type 1 Chiari Malformation. I have occasional ringing in ears, dizziness, swallowing problems, numbness of the hands and legs (not often), and overall weakness and sensitivity to light. At first, I thought I was having panic attacks. For now, they have me on “Diamox” medicine to decrease the pressure, but I’ve been on the meds for 4 days and the symptoms have relieved a little. Tried going outside today and got massive migraine type headaches came back home and laid down. If surgery is necessary, I’m with it. I just don’t wanna feel this way again. I don’t work, can’t go out, nothing. It’s horrible.
I am the exact same, I’m studying to be a lawyer because it’s my absolute dream but I feel it’s been sacrificed with how bad my chiari has been, I’m awaiting surgery and I hope treatment has been available for you too, it truly is horrible but it’s so nice that we can relate to the people who do have chiari too🥺
I’m currently 13. But when I was 2 I had my first of two surgeries for this. I remember the headaches were just unbearable and all the different things they tried the headaches would just not go away. Still do this day I have terrible headaches and throw up about once a week
I could tell something was wrong by age 10, I had dizzy spells & the back pain (cysts), never slept right, complained of pain alll the time. I was never managed or diagnosed. I just learned to live my life to my fullest. I started smoking weed by 16. And just being open to my pains and open to overcoming them, I have been able to brush off the pains with a little relaxation and herb inhalation. I’ve had it since birth and there’s no need to cut into the skull in order to “fix” the way one is born. I’ve heard very negative reviews on the surgery verse the natural pains and the after surgery pains. I’m an advocate for living with it.
I studied dance for many years growing up. Chin up! My chin stays up always, happy or sad, my natural feelings between the head and the body know that I need to keep my chin up for good flow. Luckily I’ve always been in cheer or dance or on a stage where you have to look up and out all the time. My posture is my pet peeve. It hurts a little to have to constantly be up right but I know it’ll hurt more if I ignore it. Hope that helped you in some way.
Diego I have the cysts in my back from the Chiari. Those are painful but I live with it. I remember school and I remember the pain from being in school but I had my dance class every morning! Dance is not like track or volleyball. Dance is a much different activity for the body and spirit. It’s an elegance and a grace that teaches the body to be at ease while looking graceful. Learning how to appear at ease is essential to having chiari and dealing with the pains. I will continue to promote dance for chiari fighters. I may not explain it well over text because it’s a whole movement and process. Anyways keep moving is the idea I want to get access. Work the blood flow, understand what Flow is. Do yoga if you don’t like dance. It’s about not being stationary. Speak up for yourself when others don’t understand the pain and keep on keeping on. (Say no to video games too, watch like Board Game Mikes instead, he’ll play all the good ones for you)
Diego I’m empowered by your words! You are not me and I cant say you haven’t been better off but I can believe that you will be, at least now, with all the new knowledge and challenges you face. In my own life my challenges are strengthening my mind and spirit. Decisions have always been difficult because of the cloudiness in This fast pace society/ school system/ job force (you name it, people want you to move faster) but you are special because you know that faster is not better. Taking time to feel the right and stray from the wrong (bad posture bad diet no exercise etc) I feel as though we are all open minded people and I also feel as though we are evolve specimens. We teach doctors about us. And we get to learn differences and similarities. And we get to evolve. Chiari can be joyful once one decides they are not afraid of their truth.
I have a mild issue and when I stood up and yell at a ballgame my head would feel like it woukd burst. So painful and as Id try to sit down I couldn't as more pressure. I went to Dr and he said just stop yelling. I didn't find out I had this until 30 years later.
Hi I hope you are feeling better I just want too know my daughter was told last week she has chiari malformation type one and it won't affect her I'm still so worried can I ask what type you have and thank you so much
Really nice video sir.. There is a slight correction sir. We remove C1 posterior arch.C1 doesn’t have a lamina per se. Otherwise you have wonders sir. Thank you Dr anand neurosurgeon
I had surgery for chiary malformation 3 years ago, the symptoms were dizziness in the back of the head and balance problems and 3 years after the surgery, my body has improved and there are no more symptoms.
I found out that I had this after an MRI because I had fallen down the stairs and hit my head. I think it’s Stage 1? I have never had a headache that I could remember until my late 30’s and did have this weird thing where I would tilt my head to comb my hair and I would start to black out. Im in my mid 40’s now and I’m starting to get it checked out. My current primary doctor has been very supportive and that has been the reason I am looking into this. Otherwise, I wouldn’t have worried about this.
I have just got a MRI 4/31/23 and was diagnosed with Chiari Malformation on May 1st the neck/spine doctor has sent me to a neurosurgeon in fact I am scheduled tomorrow 5/12/23. My symptoms are roaring in my head I say this because when I plug my ears I can still hear it and it’s loud. I have difficulty completing simple tasks ie: I seem to have trouble with hand eye coordination or something it’s hard to say but I kind of get stuck. I’ve been thinking that I may be exhibiting signs of Alzheimer’s. Migraines have been an issue since nursing school and vomiting is pretty aggressive too as I end up vomiting on the wall and floor too every time. These symptoms I thought were from meds or other autoimmune diseases I have. This is an unknown area for me I know nothing about this never heard of it until two weeks ago
I lost most of my hearing on left side,visión issues,vértigo and numbnes in my left hand and foot..was told i was gonna have to learn to live with it..i just turned 50 and had open heart surgery 8 Years ago..most of my life i was into fitness/bodybuilding..can happen to anyone.
My personal opinion if i could give advice personally i don't recommend going ahead with this operation, the chances of it making things worse are high. I refused I get prescribed migraine medication for attacks.
I was a toddler when I had my surgery done. I'm thankful my parents allowed the surgery to happen. If it hadn't, I would probably be paralyzed (due to age and severity of the condition). I'm now 23 and am a functioning adult (mostly 😂). I recommend trying to give your child the most normal life you can, whether or not you choose the surgery. There are risks, but in my opinion, the benefits greatly outweigh them
It does with me, I have balance issues and I have vertigo, but other times I just drop t o the floor for no reason and nerve pain also, I now have nerve damage in one arm and they call it corpal tunell but it's not, unless that is in my arms and legs and shoulders and it rotates from one to the other
He probably just hasnt logged into the account since. You shouldnt comment things like that because a lot of people on this video are suffering from it and awaiting surgery
I hate that they dnt go into depth people think this is non life threatening but i just had to get emergency surgery because i was going to end up in a wheelchair my symptoms where so advanced my doctor said the worse hes ever seen so to people not living with these symptoms the pain is not that bad but to us is the difference between waking up out of bed stiff as a rock unable to properly function. I had my surgery may 9 2022 17 weeks pregnant. So no its not just a little imbalance constantly choking on your own saliva and numbness if i didn’t get this surgery i was going to end up a paraplegic
I am in SHOCK, after so many MRI'S, how do you just find it. I was so sick as a child, constantly throwing up. Clumsy, now it's medium size and the surgeon says it's the most difficult surgery. Therefore he is leaving it
They dont do the surgery unless its critical they do it. Im 33 been livin with the symptoms since i was a kid just found out i had it last year and the only reason they did the surgery is because i was at a 6 and it was blockin the flow of my spinal fluid, if you're 1-5 they wont do the surgery.
Diagnosed with Chari Malfornation 2 officially 11 years. Now adding Severe Spinal Stenosis. Was wondering if this is what led to a hole over an inch, on the left side of my head? Now have the xray proof. They want to do surgey but don't have the $$$. Am in constant pain. The twitches are shifting my head left. Started when I was 45. Went away an returned a third time in 2010
Do you have any insight on the filum disease? Is it even studied? All I can find is from Europe and I have about 5 of the conditions correlated with the filum disease. I'd really like to learn about what options I have as an american citizen.
My uncle had this. Had the surgery and then stroked out (he was over 300 lbs) so don't get freaked out- sadly we lost him. He was a vegetable but I could feel like he knew what was going on he just did not or could not communicate.
Me too.. its only been a couple of months with symptoms and I'm ready to throw in the towel to get the surgery... but I just had surgery so I know I need to wait... im tired, exhausted, and most of all very very frustrated
I am just getting my 1st MRI of my neck and head on February 8th which is next Monday. I can't deal with the headaches at this point. I am still dealing with back issues after having back surgery 5 months ago
I have been suffering for 16 months with severe headaches, blurred vision , ptosis , , balance issues , nausea, weakness, excruciating pain behind my left eye and in my neck and shoulders and back exhaustion, tingling , numbness, facial pain . WVU Healthcare Neurology repeatedly tells me that my Cerebellar Tonsillar Ectopia with 4.5 mm herniation is definitely not causing any of my symptoms and that "many people have this and it's an incidental finding on an MRI" ... Well gee that's funny , my debilitating symptoms are what caused me to need the MRI & from what I've read and heard Cerebellar Tonsillar Ectopia can definitely be causing these horrible , miserable , often debilitating symptoms .
my head has been killing me for about 5 days it wakes me up in my sleep , when I sneeze and cough it hurts worse and even when I move my head it hurts my mum said I’m just having migraines how do I tell my doctor I need to be checked for this ? I know a couple of my friends have this
You need an upright MRI to find out if it is the chiari or you can also have a cervical neck instability. Not many doctors have skills on this. It depends where you live. In the USA the expert on these things is Dr Paolo Bolognese in New York. Hope you get some help.
@@yolandapaclibar3154 My brother has me 7 m sagging I have the same troubles while leaning up while coughing while moving my head doing the same 6 years get well
I have this with EDS and aneurism. I cannot have this surgery unless severe emergency due to 5 cervical fusions. I was told if they did this o would never be able to hold my neck up again
my sister was diagnosed about 15 years ago I'm supposed to get checked but have not yet done so although I do have a lot of symptoms that are getting worse
I have LDS TYPE3(S-MAD-3)and was diagnosed with arnold-chiari malformation in 2010 and I used to pass out,have seizures,and had bad headaches all the time. I started using medical marijuana and these symptoms disappeared completely overnight,and the relief can last up to 12hrs per dose. I cannot tolerate surgery well and had an aortic root replacement in 2009 that has a monster hernia protruding from the inner incision(didnt heal right)
My daughter hasn't been diagnosed with this, but I'm wondering about the similarities with her symptoms. She has the tingling in her hands, headaches, & trouble sleeping. She also mentions not being able to "feel herself" sometimes. She said it was like a piece of glass was between her hands and body... Anyone else?
Many people don’t have symptoms which sounds like a dream to me, but those who have severe symptoms that effect their day to day life will have treatment or surgery, I’m awaiting mine
I had my chiari decompression surgery about a year ago. The coughing and sneezing headaches have been cured however my hands are still numb and my syrinx is still quite large almost the same as presurgery. What other options are available? Is there a way to suck out the brain fluid in the syrinx?
I was told 2 weeks ago I had chari. I was only told about it, it wasn't explained to me that my symptoms are coming from this. However, I get the headache when I tilt my head back, I get visual issues like light sensitivity, palinopsia, black dots in vision. More so when I lay down. My head tilts and it feels like its squishing my occipital area. I managed to get an appointment in 2 weeks after only seeing her a few weeks ago. Which is surprising. So I'm guessing it warnts more attention that we initially thought. Do these symotms sounds like it could be caused by chari ?
Hi, Please understand that UPMC cannot provide medical treatment or medical advice through our RU-vid channel. Therefore, please do not use this communications channel to report medical symptoms or concerns. If you have a medical emergency, you should go immediately to the closest Emergency Department, or call 911 for assistance. If you need nonemergency medical care, UPMC can help you find a doctor if you don’t have one. Please call 1-800-533-8762 or visit our Find A Doctor webpage at upmc.me/2YG9NAn. We hope this is helpful to you.
Could there be any complications out of this surgery? I got type 2, born with spina bifida and threaded cord. I've read that this is normal having all of these things together but I just got the news of having this and I'm scared that this could lead to further paralysing or if I don't have the surgery that it will lead to something bad too.
i HAD THIS AND OTHER PROBLEMS WITH A BONE GROWING INTO MY BRAIN, AFTER SURGERY WAS FINE THEN TWO YEARS LATER STARTED WITH hydrocephalus AND HAD A SHUNT PUT IN MY BRAIN AND AM ALWAYS GETTING NECK AND HEADACHES?
I had an MRI and have a syrinx. It’s been played down and I’m told it isn’t the syrinx causing the symptoms it is FND. How can an neurologist know my symptoms aren’t from the syrinx and that they are from FND.
I'm just waiting for an opening atm for a Cine MRI to confirm that I have this. Besides the blinding migraines I'm also losing feeling in my left arm/leg. Never even knew about this malformation until I had a migraine that lasted for 4 days straight.
I operate this disease 2 times with the difference of 5 years second time it's better Now i want to survive with exercise and walk which exercise is better for me??
Bro I have also chiari malformation type 2 before 1 month i have surgery now looking how going on I hope in sha Allah going good nd better in sha Allah I prayer for u also himself offcurs
I have a chiari malformation and I also have generalized epilepsy and two big thyroid goiters, so everytime I go see a neurosurgeon they tell more risk than benefit and to follow up with all my other doctors, but I have massive issues with headaches, swallowing. Any ideas? Fellow chiari fighters?? My chiari is 11.00mm
I have chiari malformation 1. This shit painful and agg . i want my normal life back . I cry a lot I'm fucking depressed I have swallowing problems. I trip over stuff that ain't there 😂 (balance) I'm thinking about having the surgery. But no1 have spots available. So I may have to travel😓
i have chiari 1 also. my headaches get get so unbearable sometimes. to the point where i can’t get up or get out of my bed to do the most simplest things. i go to get another mri next month, and if it’s worse or not better at all, i have to get a surgery. i personally want it. i believe that if i get it it’ll be okay since ofc they’re trained to perform the surgery. but since i’m a minor, i would have to have my moms permission. my mom doesn’t want me to get it bc she thinks something will happen. i’ve realized that the main reason she’s worried is because if something did go wrong she’ll lose me :( idk what to do.
Is chiropracric care safe for those with Chiari syndrome? I have ised it in the past to relieve headache and neck pain but now that I now I have this condition I'm not sure if the chiropractor is a safe option for me?
Do these things always display symptoms and/or require treatment? I have a Chiari Malformation (found accidentally during an MRI after an epileptic seizure) and I haven't really noticed anything like this video describes, at least not to an abnormal degree. The doctors haven't made a big fuss about it either and seem more concerned with my albeit mild epilepsy than anything.
I also found out I had chiari from an MRI after fainting alone and not remembering what happened. this was 10 years ago and I have minimal symptoms described here and have never had to do anything for it
@Melissa Sargeant did the symptoms go away after surgery? Currently same issue. Was diagnosed 8ish years ago, symptoms have gotten worse and am thinking of getting another mri to see if it's actually from the chiari
@Melissa Sargeant thanks, appreciate the experience and help. Yea the range of symptoms people have are increadible. So far I'm still good with using my hands and legs, but doing day to day stuff will give me a big headache, especially looking at screens or being in the sun for a while. I feel nauseous also quite frequently and in general just weak. So hopefully they recommend the correct treatment.
Half my face would half a painful numbness, pain behind the eye, tinnitus, nystagmus, all on the right side. As well as vertigo. All triggered by getting a bad infection in my tonsils that lasted over 2 months :/ crazy
@BETHANY R Jimenez I hope estly have no idea.. I think the surgery/infection actually triggered the chiari cuz I was diagnosed with chiari 2 months AFTER the surgery
My aunt passed away from Arnold chari in 2014 ......worst day of my life when I found out she passed she was my insperation she used to paint with her mouth
What caused her to pass specifically? If you don’t mind me asking? I have this myself, I’m terrified for surgery next week but I know it has to be done.
I have cerebellar ectopia from C1-C2 injury to transverse and alar ligaments with the same symptoms of chiari malformation. I'm currently looking for a surgeon who can fix both issues of instability and brainstem pressure. I have a 10mm synovial mass causing ventral cerebellar junction compression and foramen magnum stenosis. Please help! I've been injured for 7 years and recently saw Dr. FRANCK for diagnosis but cannot afford treatment.
Hi Sarah, We are unable to provide medical advice via RU-vid. If you need help making an appointment with one of our doctors, please call 1-800-533-UPMC (8762). To apply for financial assistance, please visit upmc.me/385Wzjh.
Why 4 surgery? I had one in may and it cured my headache when I cough and sneeze abut I still have another constant headache on right side and numbness in the hands. I just had the MRI done and the syrinx still looks pretty big...
Can the Chiari be symptomatic if there is there is miminal flow posterior to the cerebellar hemispheres, but normal flow everywhere else? Or does it need to be a complete blockage to become symptomatic?
Hi Matt, We are unable to provide medical advice via our RU-vid channel. If you need help making an appointment with one of our doctors, please call 1-800-533-UPMC (8762).
U can break your c1 really easy after this surgery. But if you honestly have this like I did it becomes hard to live life. The headaches alone would stop you from playing your sports.
Can anyone help im 29 just been diagnosed with type one sevre headaches for 10 years mostly everyday its ruined my life i got told i add severe depression an aniexty maybe i did have symtoms for it but i really thought i add a brain tumour cus the pain is there everyday now but to get diagnosed just 4days ago my doctors need reporting they have dragged this out an now ive got to have surgery maybe if they did somet before i would of had a better life this thing as ruined me now stress now till the op. No painkillers help any suggestions please
Hi Ryan, Please understand that UPMC cannot provide medical treatment or medical advice through our RU-vid channel. Therefore, please do not use this communications channel to report medical symptoms or concerns. If you have a medical emergency, you should go immediately to the closest Emergency Department, or call 911 for assistance. If you need nonemergency medical care, UPMC can help you find a doctor if you don’t have one. Please call 1-800-533-8762 or visit our Find A Doctor webpage at upmc.me/2FkLDVW. We hope this is helpful to you.
@BETHANY R Jimenez hi. Thanks for replying seen as you was only 1. My symptoms have not changed an the opperation only works 70% . It may not work im 30 now im not riskin. Maybe ill after just live with it i have done for 11 year. They said i add fibromyalgia to and it ended up malformation. An this all virus as not helped. Looks like tabs for rest of life. Take care an look after yourself be safe.
I've got a 2cm chiari malformation the doctors have said not to operate as I show no symptoms at all. It's a weird situation since it's relatively large
@@bethmare9141 It's a weird one honestly. I do find it hard to forget about as they told me to try and forget about it live life normally until I show symptoms.
@BETHANY R Jimenez I fear it though every day and it's taken a toll on me just through worrying about the slightest things that could be a symptom. Although my surgeon has me do an MRI every three months I think it's now turned into a case study.
Shortly after the surgery I developed syrinx so large it took two surgeries about a month apart that one paralyzed me, due to the amounts of antibiotics I end up with C-diff and ended up losing five feet of my intestines and a illeoscopy ( the spelling is just a guess). The
Ringing ears,dry fly sounds, always some stupid noise! Dizzy, miss a step because the leg you thought stepped up, it didn't an down u go. Last time it was worse time. Stepped onto the pavement, leg didnt lift. At the dr/hosp now this gets weird..broke knee, leg, wrist hand an arm r.side, peeled all the skin on lots of muscle from mid thigh down to toes.lost 3 pints of blood there in front of about 100 people. Nobody asked if they could help me but a 95 yr lady went in and got a box of tissues an told them to help me and get a wheelchair. Took me 1 1/2 yrs to get bk. But by then I only had 3 months out of wheelchair and MS, lupus hit geer 33(yes, I know there's no gear 33) but fibromyalgia says theres more gears with neuro disease's than any cracker Jack surprises ever. This I agree to. And how do we manage to be leaning bk in recliner and fall forward out of it?? This 1 I hv 0 idea why!
ACM2/Syringomelyia,CSF LEAKAGE THAT KEEPS L.SIDE OF FACE SWOLLEN like I've been in a fight (feels like it too)spinal stenosis, fibromyalgia, lupus. to much to put down MAY GODS ANGELS SURROUND US EVERY SECOND OF FOREVER!🙏🏻🌿💜🌷😎Texas.
I found out my stem is 4mm and if it reach 5 I need surgery please let me know if I’m critical atm because my doctor said I have to wait until it reaches 5??
Are you still numb? And how long had it been since your surgery? Because I'm 2 weeks into recovery and my left arm and the whole left side of my head is completely numb
I do. I get numb in my hands legs back and face and torso. It also feels real cold sometimes. I had the surgery but after a year my symptoms are hitting me hard again.