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.
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 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.
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.
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
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.
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 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 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 .
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
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 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
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.
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
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 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
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 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
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
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
Sam Moo I had an emergency surgery when I got home I had a bad headache and thought I had a bad cold every time I laid down which ever side a laid on the back of my head would swell on that side I thought it was normal I kept calling my doctor the one that did my surgery and was told it was normal due to the fact that I had just had surgery ok a month goes by it gets worse doctor telling me the same thing until on morning I woke up and fluid was running down my back I went to the doctors office and had to have emergency surgery
Oh I am so sorry I hope you are better now And how are you now? Where did you have the surgery?? For me I will see my doctor end of this month I am suffering from dizziness all the time and some time headache I can not work because of the dizziness I do not know what should I do
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 UA-cam 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.
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.
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 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
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?
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
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.
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 UA-cam. 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.
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
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 UA-cam 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.
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?
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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.
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'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.
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 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??
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
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...
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.
The company Trulieve offers more medical options like “capsules” filled with THC CBD CGB oil. That is a powerful option. And then if I’m not exactly ready to be knocked out by the stuff- I’ll take some THC CBD CGB powder, which is powderized marijuana. I can stir it into my tea or coffee or beverage easily. Lastly, they offer straight weed in all options (30 options) so you can try and focus in on the best smokable for you- India verse sativa.... I don’t personally like the vape option or the “shatter”. Capsule oil, powder THC, and regular flower weed for smoking. That’s why helps me. Thanks for asking! Please go and like and subscribe to my channel if you want! Hopefully going to post some medical content soon.
I actually haven’t tried topicals because it’s just not where my problems are. People say pot smokers are so lazy and lethargic but it’s just not true- I feel completely happy to say I am a college grad with two degrees, an IB diploma and I work for a million dollar company. Let the medicine do it’s work for you. Don’t be afraid of it.
@@shelbythompsoon Firstoff~ thank you for responding and that sounds fucking amazing and I agree people not doing things is probably other things going on I love doing labor on the herb yeah I just want to look at options,my girlfriend has it but seems to have fundimental misunderstandings about cannabis and I would like to know more about why you enjoy it- I use it every day because I have genral aches and I don't produce emzimes to breakdown sugars in the group known as 'fodmaps' it has hurt at an 7 and 8 on the painscale for over a year- What makes this the best ever option for you? and how do you like to administer it? I prefer dab pens " vape carts" joints and Bowls But there's been concern expressed with the heat and particulates from combustion And I agree that the particulates are troublesome, I understand it's an set of androgenous chemicals Cannabanoid receptors and you can stress the body correctly to produce chemicals to interact with these receptprs to get a really nice high -runners high- I have the book 'cannabis pharmacy' But what what was your path in descovery that this medicine and food could help you Btw you can make edibles with just throwing the flower In your pancake batter That's why I save all my stems One time made blueberry pancakes that were edibles but also my breakfast and after a few I was like 'oh no it's too strong, but they look delicious and I'm hungry~ annd that was a fun night to perform on stage I recommend topical cannabis to everyone it's great after a shower to put around your joints and neck just because the gravity and human bodies are heavy It's great for after exercises Have a delightful day Shelby
Good day, I had Chiari Malformation, then supposed to be for surgery 2 weeks ago, but I am afraid of, please does anybody here did surgery before? How does it feels now? Does the pain gone? Headaches, neck pain, blurred vision, etc, I am suffering for. Please i need your help, do i have to do the surgery? How it guarantee that I will be cured? Thank you
Hi Chery, Please understand that UPMC cannot provide medical treatment or medical advice through our UA-cam page. 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/35koWda. We hope this is helpful to you.
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 .
You are lucky. I'm in Saskatchewan begging for my life. Too sick to travel.
@@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. ❤
I beet you I got it at 11
@@Ninjalindleysame
One of the BIGGEST problems with all of this- is many of us don't have chiari specialists.
AS W and when diagnosed and you get zero help and are told antidepressants would help or birth control. Um excuse me, I’m not depressed, I’m in pain.
My brother has a 7 m cerebellum sagging while sneezing while coughing up and getting into my head pains, but doctors say it does not stem?
Leesin oh the sneezing or coughing trigger the head pain. So many doctor said are just so poorly informed on this condition.
@@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
Leesin and I was told it was hormonal. It’s just horrible that doctors can be so uneducated and so vain to think they could be wrong.
Beautiful explanation. Currently in medical school and this short video helped me put Chiari malformations into perspective effectively. Thank you
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.
Are you fine now ??. What are the complications you got after treatment done
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 :(
Meto ive add a loads of surgery but nowt like this not on head im dreding it hope it works out for u
Did u do the surgery
are you okay?
Hey what were your symptoms? I’ve had headaches and vestibular migraines 24/7
@@MrErick1160 how many mm herinates did you go 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.
@@lorettawashingtonmorris6231 Thank you so much and Im sorry your going through it all over again also. 😢
So do u recommend doing the 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.
@@datura5360 that sounds so scary :( how did you guys make it through that and dealing with it now?
I had the Surgery Dr Fredlander is awesome
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.
Surgery of these delicate regions can cause more pain and suffering. I think you made the right decision.
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.
Sorry for your loss, that is tough. Michelle x
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
I have level 1 chiari
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.
@@dillydadally go see a different doctor. If possible one who specializes in Chiari malformation.
I swear my anxiety has been horrific lately and I’ve never been affected by it before. I knew it was something! How are you now friend?
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 was decompressed and it was huge help!
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.
Has it gotten better?
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🥺
Did you anyone got surgery ?? Please tell its necessary to know for me that surgery is successful or not ?
Did u get surgery ?
I want surgery for syrinx
Letaria I’ve had 30 neurosurgeries and I look towards famous women through history for courage,diligence for times like this.
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 did not say my chin was out.
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)
Shelby Thompson. ua-cam.com/video/GbGSvAEkE68/v-deo.html
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.
This is an excellent and informative video I've seen yet. Thank you!!!!
I found out I have this a few months ago. Waiting to see a neurologist... just constant neck and shoulder pain, plus always have numb hands and feet.
Any update?
Funfact:
I am suffering Chiari right now I'm recovering at home but my neck hurts like heck, also my head. It is very painful but it's worth it after.
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
How are your symptomes now ? Has it improved
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
Perhaps you meant that C1 doesn't have a classic "body"? The posterior arch of C1 is formed by lamina.
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.
Wow... reading all the comments I’m feeling lucky for having only 1 surgery when I was 10.
Lucky-
Thank you for this information. It's a world better than I have been told. Now to work with my doctors to get me fixed up 💜💜.
Vertigo. Why do they never say vertigo.
Absolutely!
I love how the subtitles say "caramel formation"😅
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.
Does this cause balance problems? Also feels like pressure on my back lower base of my head
@@asassynation9955 I cant get an mri i have a pacemaker
@@asassynation9955 did not have a ct scan til almost a year after my accident
Thanks. I had all theese issues after a head injury last march 2018 on my forhead.
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
Yes! I fall very often
i have these symptoms and more..yet doctors won't give me an Mri scan.been seeking help for thirty years. Now middle aged and give up..bed bound now.
What?? That's crazy! Why wouldn't they give you an MRI?
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.
Usually by accident through MRI ct or surgery
Im sorry to hear that. Maybe changing doctors for a different opinion?
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 have Chairi Malformation Type 1, the symptoms are horrendous. It's scary...
Don't mind if I ask..what are/were your symptoms? Thanks
I was diagnosed as well. Symptoms are crazy
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
My son is 7, and was diagnosed when he was 8 months.
Had you done surgery?
Comprehensive video...
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 .
Great information! Thank you for sharing!
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
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 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
Does she got medicated
What type of symptoms? Medication is usually not prescribed
@@harishhvharish1179 I m Indian chiari 1malformation, 7mm herniation it need surgery
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.
Sorry to hear that about your uncle.
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
sydneii n layla I’m having this right now. Pain when moving, sneezing, cough ing..
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.
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
@@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
My brother has the same I have a 7 m cerebellum prolapse but the doctor does not stem from these complaints get past the dio
Going for my first surgery beginning in the new year
Ely McGowan how are you now?
T Sizzle the dead cannot respond
Just had mine 2 weeks ago. This guy however, might be dead honestly....
Don’t say something if you’re not sure
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 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
i feel sad for u sister
How are you now?
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.
I have chari 1. My doctors said it's no big deal and not to worry about it because it's only 2-3 cm herniated. I don't know what to do.
2to3 cm or mm ,I have 7mm ,2cm equal to 20mm
@@prasannakumar-cl9fu mm I guess.
@@icantsleepstorms nothing to vary
My 3 year old needs this done. Thanks for the info 😢
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
My came back after fifteen years. Waiting to see a surgeon.
Did you get surgery before?? Or you mean that you been off symptoms for fifteen years?
February of this year went back for another surgery, my head hurts so bad, its rough maybe cause I'm older.
@@lorettawashingtonmorris1739 how you doing after your surgery??they performed the decompression again?
@@omargdottin Thank you for asking. I'm weak in my body and my head hurts a lot. The dizziness is gone. Trusting God for my healing.
@@lorettawashingtonmorris1739 did ur get better
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?
I have 2.5cm cerebellur tonsils and I have little to no symptoms which is strange because of the size
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
It's 2.5mm or cms
@@alleshaxx1419 found out I’m getting decompression surgery too just waiting for the surgery date from my neurosurgeon
@@bethmare9141 if you don't have symptoms we you go for surgery
My son age of 19 months only had ,open spine bifida and chiari meliformation with syrnix and tethered cord..Does All Surgeries successful for babies..
Yo padezco la ataxia de arnol chire desde hace ocho años no camino necesito ayuda soy de Venezuela gracias..
I was just recently diagnosed with this. My plan is to have surgery after the 1st of the year
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
@@amywalker1330 how did it go ? Are the syntones gone ?
@@christelle5491 I haven't had surgery yet for my Chiari Malformation. I am dealing with back pain issues
@@amywalker1330 your surgery over
I have this had my first two surgeries this year
Why two surgeries??
Sam Moo I had an emergency surgery when I got home I had a bad headache and thought I had a bad cold every time I laid down which ever side a laid on the back of my head would swell on that side I thought it was normal I kept calling my doctor the one that did my surgery and was told it was normal due to the fact that I had just had surgery ok a month goes by it gets worse doctor telling me the same thing until on morning I woke up and fluid was running down my back I went to the doctors office and had to have emergency surgery
Oh I am so sorry I hope you are better now
And how are you now?
Where did you have the surgery??
For me I will see my doctor end of this month
I am suffering from dizziness all the time and some time headache
I can not work because of the dizziness
I do not know what should I do
Sounds like you were leaking fluid from your brain - when they close up your dura - if it doesn't take it can leak causing exactly what you described.
Same stuff happened to me... I had to have 3 surgeries and my most recent one getting a shunt put in my brain. I fucking hate this
I have headaches but they aren’t brought in by coughing, sneezing or lifting a heavy object. I as well have ringing in ears
Same
Wait no i think i might. Might. Have this
Jessie Wang did you find out what it was?
Same, did you go for surgery
How many people have brainstem and cerebellum tonsils hanging down?
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 have the same complaints why is it pressure my brother please help me I'm tired of the pain every day
I have a 7 m cerebellum sagging, but the doctor says your complaints aren't due to this.
I believe there is this thing called shunts. They use those to drain the syrinx
My cousin had this procedure done 2 years ago, they had to remove part of her skull.
كيف حالتها الان ؟؟
I want to know why doctors dismiss this diagnosis. It’s like they don’t want to give the diagnosis even if a CM is found and symptoms are present.
I understand surgery for this issue in 1997. In 2011, I developed fear of falling and frozen shoulders.
Can any expert comment on my issue?
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 ?
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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.
@@tiadewitt8482 Hello did you ever opt for, and did mom give you the blessing to have surgery?
@@tiadewitt8482 how its going?
Im 13 and im getting this surgery soon they have been holding off the surgery for years but i need it now if we waited longer i could stop breathing
I just found out I have this but don’t want to have the surgery.. like can I just take medication instead for all of my symptoms 😩
What are your symptoms? If you don't mind me asking
How are you now
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 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 had surgery 24 years ago I have atrophy of my left hand
Lol I don't understand the music choice, but nice explanation thanks!
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?
Thanks@BETHANY R Jimenez! As I've been doing more research I'm finding that you are correct and I also am a little sad about that!!
Just got diagnosed with this. Oh man.
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
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.
When the headaches radiate from front to back, would this potentially be a migraine trigger, or would migraine be something entirely different.
Syrinx c3 to D11 after chirai I malformation operated before 2 years. What I do sir?
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.
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I hope you have found help? Maybe a go fund to help with costs. I totally understand the pain. It’s very challenging to live with. 💜🙏
I have a appointment for this in a few weeks. Years of not knowing what’s wrong then my neighbor has procedure to fix.
Had my decompression surgery for chiari when I was 2 and I’m now 20 and no complications since. You got this!
@@jaksonmixon9513 Nothing was wrong thank goodness but they think my dizziness is all hormonal.
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 actually had to get them removed along with my adenoids
@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
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 UA-cam 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.
1 week and 4 days after surgery and still fucking miserable. Chiari is such a fuck up man. All my future plans in life.... GONE
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 UA-cam channel. If you need help making an appointment with one of our doctors, please call 1-800-533-UPMC (8762).
I’m just looking at this to see if I get surgery will it make the back of my neck more vulnerable to injury cuz I fight and play sports
I have hear that it can make the back of your head more vulnerable with a higher likelyhood of death if struck there.
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.
hello, my father also has kiari 2. is there a solution for this? can it be fixed?
Is this diagnosed from a brain MRI or a cervical spine MRI?
I was just told I have this and I'm terrified 😢
Tfw ur just a med student learning about this condition and not actually having experienced it like 90% of the comment section
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.
Syrinx found sirigomielia and pregabalini...
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
Same ! Mines 2.5
@@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 mines 2cm or 20mm
@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.
@BETHANY R Jimenez it's my second year of diagnosis. I've also had to take consultation on if I should take my menACWY.
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.
Matt Butler Yeah it sounds like you have it. You should talk to your doctor about getting an MRI. I have Chiari Malformation type 1.
Try smoking weed. I swear to god it’s a life saver. I have chairi type 2. I’m at bay and happy to not be getting the invasive surgery. Weed works.
Redefine
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??
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
I have chiari I have had 4 big operations and about another 17 little ones
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...
Romano so what happened?
I still have numbness and tingling ib my arms and legs
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.
@@Rachel-Ida she had a heart attack she was a very heavy weight lady .....plus the Arnold chari
@@Rachel-Ida did u do the surgery ? Did ur syntones go away
Just found out yesterday i have this . And im 33years old .😂😂
ఈ problem పూర్తిగా తెలుగు లో explain చేయగలరా
I was given a medical marijuana card to help and the products HELP, I recommend it to everyone’ #florida #legalizeit #chiarimalformation
What do you find to be most effective both for internal use and topicals?
The company Trulieve offers more medical options like “capsules” filled with THC CBD CGB oil. That is a powerful option. And then if I’m not exactly ready to be knocked out by the stuff- I’ll take some THC CBD CGB powder, which is powderized marijuana. I can stir it into my tea or coffee or beverage easily. Lastly, they offer straight weed in all options (30 options) so you can try and focus in on the best smokable for you- India verse sativa.... I don’t personally like the vape option or the “shatter”. Capsule oil, powder THC, and regular flower weed for smoking. That’s why helps me. Thanks for asking! Please go and like and subscribe to my channel if you want! Hopefully going to post some medical content soon.
I actually haven’t tried topicals because it’s just not where my problems are. People say pot smokers are so lazy and lethargic but it’s just not true- I feel completely happy to say I am a college grad with two degrees, an IB diploma and I work for a million dollar company. Let the medicine do it’s work for you. Don’t be afraid of it.
@@shelbythompsoon Firstoff~ thank you for responding and that sounds fucking amazing and I agree
people not doing things is probably other things going on
I love doing labor on the herb
yeah I just want to look at options,my girlfriend has it but seems to have fundimental misunderstandings about cannabis and I would like to know more about why you enjoy it-
I use it every day because I have genral aches and I don't produce emzimes to breakdown sugars in the group known as 'fodmaps'
it has hurt at an 7 and 8 on the painscale for over a year-
What makes this the best ever option for you?
and how do you like to administer it? I prefer dab pens " vape carts" joints and Bowls
But there's been concern expressed with the heat and particulates from combustion
And I agree that the particulates are troublesome, I understand it's an set of androgenous chemicals
Cannabanoid receptors and you can stress the body correctly to produce chemicals to interact with these receptprs to get a really nice high -runners high- I have the book 'cannabis pharmacy'
But what what was your path in descovery that this medicine and food could help you
Btw you can make edibles with just throwing the flower In your pancake batter
That's why I save all my stems
One time made blueberry pancakes that were edibles but also my breakfast and after a few I was like 'oh no it's too strong, but they look delicious and I'm hungry~ annd that was a fun night to perform on stage
I recommend topical cannabis to everyone it's great after a shower to put around your joints and neck just because the gravity and human bodies are heavy
It's great for after exercises
Have a delightful day Shelby
I had this surgery at 3 years old n I was told I have a rod in place
Good day, I had Chiari Malformation, then supposed to be for surgery 2 weeks ago, but I am afraid of, please does anybody here did surgery before? How does it feels now? Does the pain gone? Headaches, neck pain, blurred vision, etc, I am suffering for. Please i need your help, do i have to do the surgery? How it guarantee that I will be cured? Thank you
Hi Chery,
Please understand that UPMC cannot provide medical treatment or medical advice through our UA-cam page. 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/35koWda. We hope this is helpful to you.
@@RareCrow thank you very much for sharing your experienced.
@@upmc thanks a lot.
@@cheryroldan866
هل أجريت الجراحة؟
Can this cause tinnitus too?
Yes bro