My symptoms: headaches in the back of the head and pain behind my left eye, neck pain, shoulder pain, arm pain and weakness, right leg pain numbness, memory issues, concentration issues, fatigue and depression.
Big mistake to define Chiari at 5mm or more. That is causing a lot of patients a lot of problems getting diagnosed and the treatment they need. Many whom have under 5mm have horrible symptoms and some much worse than a person with 5mm. If no constellation is the same, no Dr should slap a label on the millimeter required to diagnose. Also, you have drs out there who say "if u don't have headaches everyday, all day, your problems aren't from Chiari." That is a mistake of epic proportion.
We agree. Our upcoming 2017 Think Tank meeting will begin to deconstruct how Chiari was once "defined". It won't change overnight, but we are determined to start the ball rolling.
CSF: Chiari & Syringomyelia Foundation I had an MRI done over a year ago and revived the results this month (because my neurologist was incompetent)... Cerebellar tonsillar ectopia was discovered by the radiologist up to 2mm it's visible to a layman like myself. I wanted and MRI the day I went to the ER for a "headache" they refused. My symptoms: headache, fatigue, difficulty waking (waking for a brief moment and then falling back asleep without intending to), conversely I also can't seem to sleep when I need to (like right now), ear pain and spontaneous deafness. Ear pain (and bleeding of the ear which isn't related based on everything I've heard so far), neck, jaw and throat pain, difficulty speaking loud enough for others to hear, spontaneous inability to move one or more appendages when usually just after waking up tingling, numbness in the face a couple of strange near fainting episodes, visual disturbances and a few more really fun and surprising things that get the jump on me every once in awhile. As a child I had what was described in the video as vertigo. Some times sleeping would give me terrible nightmares where it felt like my body was being flung around, sometimes I'd experience these uncomfortable sensations while awake. Oddly my headaches have deminished greatly over the past year, but I started getting more immediately pressing issues like that temporary total deafness which for a while became uncomfortably frequent. I have difficulty reading numbers or saying words, phases or holding a conversation or even making my thoughts make sense... I know that Chiari doesn't explain my bleeding or nasal discharge and diet doesn't appear to negatively influence my symptoms. Given my MRI results and progressive apparent neurological degeneration I would say this is really messing me up. I let my PCP and neurologist know about my head trauma and they both insisted that I had a sinus infection... Just last year the doctors suspected that I had strep throat because my neck hurt so bad. I was given so many useless antibiotics over the past couple of years when all along I knew that my brain was responsible. When the doctors found a small calcification near my temporal lobe I freaked out given my symptoms I suspected cancer. They claimed it's not causing my problems. I hardly do anything anymore I was shocked I made it to work yesterday. Probably not today though. Just how rare is this? I can't imagine it's so rare that no one would've suspected this including the neurologist. What's the difference between CTE and Chiari if anything?
I completely agree with this my mum has chiari 1 and I've had alot of symptoms so finally got a mri I went to see the neurosurgeon and he said my tonsils have dropped but not significant enough to be chiari so he said I don't have it and in my letter he says I have mild chiari x
I'm at the beginning of this journey, so many things you mention apply to me. Scary stuff. There is so much information, getting the stuff that applies to you is critical.
I hope the you get better my journey started two years ago i had the decompression in april of this year I was 10cm I just went though another around of MRI's and found out I'm actually 13cm I feel alone like I gping crazy it's so much to bear
If I smile too much I get a bad headache. Can't read a book looking up either. My eyes start going insane.. like an eye seizure.. I just wait until it stops and cry inside because this is so invisible to my husband.
@chakkakon, Im sorry, that sucks you really need a good support system. If it wasn't for my husband taking care of me I probably would have ended my life. I wish you the best of luck
Most importantlly is that in the YEARS since this is posted we have made NO progress whatsoever! Pain is NOT treated! We are brushed off with "well you look good" how do we get doctors to believe?
For me it has been 12 yrs,no info then. In the years since there is a lot more info available online and it is being recognized more by doctors. My spinal surgeon is now a brain Chiari surgeon. Not that I would have the surgery but in my small state RI for it to be recognized is huge
I have chiari malformation type 1 with a 2mm protrusion and have all of these symptoms plus some. It is dibilitating and painful. I cannot get good quality of care because of the 5mm rule even though I have been diagnosed and have become symptomatic.
In my 12 year nightmare, my herniation has doubled. The one thing I don't see others mention is driving. I can barely drive once a week. I feel like I have a concussion and end up 'down' for days. I would like to hear if others experience the same
I have almost all of these symptoms. My doctor prescribed a depression medication. She also said i could have fibromialgia. I do suffer from depression and anxiety for more than 10 years. I dont see an improvement with that medication. And the back of my head is like 2 eggs. You can feel it. She ordered a cervical spine mri. Because I have a stiff neck. And bloodwork. Seems like she doesn't care that I'm in so much pain. My pain is real. Maybe because I have medicaid they don't care. 😢
I thought I was crazy and minimized stuff until it got pretty bad. Then I got diagnosed with JHS 3 months ago; I thought everyone's joints popped out to a degree but that they were more tolerant of it than me, or that mine popped out slightly more often than anyone else's. All of these symptoms resonate with me, and here I thought I was crazy because doctors said they found nothing wrong. I tried to get a therapist to diagnose and treat me for a somatoform disorder, but she said something is physically wrong with me. Anyway, now I am getting MRI's and EEG tomorrow, and I'm nervous as hell.
I hope that you feel better I'm a 46 years old I have chiari malformation type 1 i had a decomposition surgery done in april unfortunately my tonsil stem was 10 cm I just went through another round of MRI's with a study and found out I'm 13cm after my surgery . I'm in so much pain I feel sometimes like I'm going crazy this thing can be so degenerating and people think becouse I look fine there's nothing wrong with me 😔
I was diagnosed week ago but I know I had Chiari longer. It was hard to find doctor who understants Chiari. My herniation is only 4mm. My symptoms are: headfullnes/headache like head will expldode, dizziness, nausea etc. Make my story short: I finally found a neurosurgeon who will operate me.
I am going to a neurologist on Monday. As a child I had terrible pain on top of my head a lot, my mother never took me to a doctor, yeah I know. I also had bad restless leg syndrome as a child and young adult. 25 yrs. ago I started having weird ear, face, and jaw pain. My left ear would cut off, like clog up and then noises would make it vibrate with every pitch. Went to all kinds of doctors back then and there was nothing found wrong with my ears but something showed up on some ear test, can't remember. Here I am now almost 60 and for the past 8 mos. have had non stop ringing in my ears or in my head. I've noticed for the past year or so I have a hard time recalling some words. Have had days where sudden depression comes out of nowhere, like I feel so empty like there's nothing inside me, feelings wise then then next day be fine. Can't sleep more than 3 to 4 hrs. at a time. I also noticed a year or so back that when I'm on my stomach and go to lift my next that my breathing kind of gets difficult, weird. I have scoliosis too. I get terrible arm pain sometimes, like right down to the nerves pulsating because it hurts so bad. Right now I am having what I call "skull pain" it's not like a headache, it' like my skull aches especially around my temples and ears. I am almost certain I have this. I'll come back here and comment after I see the neurologist. I'm so scared!
I have Marfan Syndrome and just recently got diagnosed with Chiari I Malformation. I have had what I call pressure headaches for a few years. Even when I don't have headaches I can feel the pressure at the base of my skull and it feels like it's pulling the nerves or muscles uncomfortably when I move my neck. I also get lower back pain and muscle pain around my shoulder blades. Sometimes I get a knot in my neck that makes it excruciating to turn my head and slowly gets better over a week or two. Not sure if that's related. When I bend over the pressure rushes to my head and it's an explosion of pain. Sometimes I have pain in my lower back and my leg. When I have this pain, I can feel the pressure travel up my spine and into my head when I go from a sitting to standing position or when I move in certain ways. These headaches make me feel lightheaded and dizzy. I have attention problems, memory problems, depression, anxiety, tingling in the fingers sometimes for hours at a time. Double vision that comes out of nowhere. Blurred vision when trying to read despite prescription glasses. I have also been diagnosed with mild sleep apnea. I have been searching for the cause of my pain for years. I am so glad to finally have written proof that my pain is real. Even doctors have been confused by my symptoms and telling me it's just tension headaches or too much caffeine (quit and made no difference). Thank you for this video and doing what you do.
The last I was checked I was 11 mm. In 1999 I was 4 or a 5 and by that time I was just having REALLY bad headaches. Eleven years b4 I had been diagnosed as having migraines , but the expensive migraine med wasn’t helping. After each child my headaches worsened. They finally did an mri after my last child and found the 5 mm herniation. My question is I started having this pain under my ribs. It started only on the left side. It felt like something was inflamed. That was like 8 or 9 years ago. Now it wraps around under my ribs like a rubber band really tight around my torso. It hurts in that area when I move my arms or move around in bed. I also feel Like I can’t get a full breath. I can’t even yawn fully. I don’t know if the pain is due to Chiari. Sometimes the pain is further up in my chest near my shoulders and go dwn my arms. Does this sound familiar to anyone? Also, I felt like there is a rubber band holding my head to my body snd when I move my neck it like it’s really tight snd it is being plucked or pulled back snd let go.
As a teenager I was a active but suddenly my legs got weaken I couldn't walk properly and would imbalance even I couldn't walk for too long and had severe backpain doctors were unable to recognise but now as they have known the cause I will be going through my surgery next week
You mentioned Missouri, do you recommend a neurologist here that would be able to treat me without making me feel as though I am crazy, whom can treat me effectively and efficiently?
This was intresting. My geadaches had gone on since age 8. Told.migraines. saw Neuro and was diagnosed with IH in 2001. Went into remission. MRI in 2011 (chiari found, no one told me) then symptoms got worse in 2019/2020. I was passing out while sat or led down. I was concious but my body was fitting , burning through my body, when my son shook me i came too. I could hear him crying (age9) screaming at me to wake up. Felt sensation of wetting myself but didnt. Neuro couldnt tell what that was. UK nhs is great but when you have something like this, no one tells you anything. I had no idea my neck pain/migraines were to do with chiari. Surgeon said its not bad enough to operate. I had no idea until now that all my "fibro" symptoms could be realted to my chiari
I started getting headaches around the age of 10 or 11. Then as I got older my headaches got worse then eventually they turned into migraines but now theyre strictly chiari headaches.
22 years ago i hit my head on ice skiing. small nonsecreting pituitary adenoma removed ..head pain NEVER goes away. noone will guage my CSF. can anyone look at all my scans ?
20mm descent, yet none of the symptoms discussed. However cannot tilt head more than 30-40 degrees back or lie flat with head straight up (head to side is ok). Sudden and extreme pressure when done. Cannot even hold for a second. Is this a chiari symptom or other possible cause?
Yes because it's putting pressure on c1. The fact that you have a herniation that long and are not having symptoms is amazing. I pray that you never do
I have a friend who underwent Chiari surgery, but as her recovery period progressed, she experienced unexplainable weight gain, almost 'bloating. Is there a medical explanation for this post operative condition, it seems as though none of her consulting doctors can find an answer. do you have a clue as to this unexplained weight gain, perhaps an answer to her dilemma? I await your answer, but certainly thank you for your work ,and the instructional nature of this video. Read more Show less Reply · 1
Caffeine also is a vasoconstricor which helps greatly with headaches making usage a catch 22 for sleep. I can have caffeine right before bed or in between waking because positional onset of headache and caffeine will relieve that pain before I am able to get energized by caffeine
I have a question might not get my answer but can chiari cause facial paralysis I was just wondering because I am always getting bad headache and feeling dizzy and getting the ringing in the ear and I feel super tired all the time without doing anything and not to mention lately I been feeling depressed and I got tested for EEG and I wont get my results until Wednesday
I had a decompression surgery with laminectomy for chiari type 1 malformation in 2008 and a recent MRIshows metallic fragments Left behind from previous procedure. The only procedure I've ever had in that area was this neurosurgery. I have had about 10 MRIs between the surgery and the one that they finally found the metallic fragments.there were no clips or pins added and nothing about pins or clips is in my post-op report but no one wants to admit the fact that there is a chance that the saw blade or some type of utensil used during the procedure may have been left behind. The last I knew you were not supposed to have any type of metal in your body other than titanium during an MRI. no wonder my head is screwed up for lack of better terms. #zipperHeadsUnite
i have had a full foramen magnum decompression. Can i ask if anyone else has central hyoventilation syndrome as secondary to their chiari malformation?
The best way to diagnose it is an upright MRI w contrast. Every time you lay down for an MRI it will have a different lengths depending on the interpretation of the boxer reading it
I was diagnosed with chialri type 1 with syrinx in 1998 and undergone surgery april 2004. Before surgery my left half of the body stopped growing and right half of the body muscle growth was there but with numbness. I thought after surgery I will recover from all this defects but it continue to be same moreover I developed memory loss last 2 years that affected my career. could you please suggest me something so that atleast I can get rid of this memory problem? Thanks.
I have been diagnosed with Chiari I Malformation with syringomyelia and other spinal problems. Disabled without insurance or income, homebound and unable to function daily.Fine motor skills is a real issue...and as a nurse it became a huge problem. All the typing and documentation killed my hands. I have such pain in my hands and feet and was diagnosed with peripheral neuropathy. Nausea several times a day...and also have reflux. I had bad restless leg syndrome prior to finally getting a muscle relaxant prescribed. I need help and was unable to get help when I did have insurance. I wish somehow I could get help with this chronic pain. My pain, balance problems, and other severe issues make me want to die soon. I have to take so much medication for pain...lots of OTC's for breakthrough pain that doesn't help me very much. Pain wakes me up. I have bad insomnia. I sleep sitting up. But it hurts my spine and coccyx to lay like this all the time. I use heating pads and ice bags as well as many pillows used for positioning. My medications have been cut now d/t the federal government and the CDC attacking my personal right to relief of suffering. I need help. If anyone out there can hear my cry for help contact me. Otherwise I am going to continue to pray to die soon and fight suicidal ideations on a daily basis.
I live in Nashville, TN. If anyone knows of a Dr. that specializes in Chiari and Syringomyelia (other than Dr. Robert Meracle), I'd really appreciate a message back please. Thanks
We're so sorry to hear that you're struggling this way, Loren. Depending on where you are in the country, there may be physicians who can help get you on new, safe medications to manage the pain. If you would like a few names, feel free to email us at info@csfinfo.org. Also, if for any reason you ever feel like you can't go on any more, please call 1-800-273-8255. Someone is always on the line to listen and to help you figure out what can be done to find a solution. We need you here. Advocating alongside us.
I've never heard of this. I have, however, been diagnosed as a hypochondriac because I have most of these symptoms. I will likely never get an actual diagnosis because I live in the USA and even with insurance will never be able to afford the out of pocket.
Caffeine works differently in different people. In some, caffeine can worsen a headache, in others, it may help to relieve it. Strict "Chiari headaches" are generally worsened via Valsalva maneuvers, which involve physical straining that puts pressure on the back of the head.
Bobby Jones Chiari & Syringomyelia Foundation Thank you so much for your response. I definitely get horrible headaches and pressure when straining. I’m going to ask my doctor about this possibly. I’ve been suffering with mysterious symptoms for years.
@@BobbyJonesCSF 1) Can an Chiari's tonsillar herniation displacement vary from down to normal and down to up again and again... over time? like in a Plateau curve. 2) Can a Chiari suboccipital unbearable headache completely gone as soon as you lie flat or in trend position? 3) It is also possible that coughing, exercise and valsalva induced extreme headache could be absent lying flat? 4) Why my Chiari is relieved with coffee besides supine relief? Note: I have this problem after a fall backwards 4.5 years ago with contribution of oral trial of tetracyclines, and I have 4 different diagnosis from different neurologists: - Primary cough headache - Cyclic variable Chiari I: 5mm, 2mm, then 0mm, 5mm again, 1mm, none, 4.8mm, and so on in follow-up MRIs, sometimes above FM plane, sometimes below, and sometimes spinal cord kinking. Without syrinx. - Chiari-Like / Chiari 0 with tight posterior fossa - Spontaneous Intracranial Hypotension, with no leak found to date (intrathecal myelogram) and normal Lumbar Infusion Test... but sinking iter to aqueduct, variable flattening and effacement of prepontine cistern against clivus, flattening of corpus callosum, empty sella and ultra peaked elevated tentorium. I forgot to mention giant predominant right vertebral artery with some medullary compression to the left, below inferior olivary nucleus. Thanks. I'm living a nightmare and I'm considering the suicidal solution.
My symptoms: headaches in the back of the head and pain behind my left eye, neck pain, shoulder pain, arm pain and weakness, right leg pain numbness, memory issues, concentration issues, fatigue and depression.
did you ever find answers? I have similar symptoms but left leg instead, and additional symptoms involving GI, cognition, memory, migraine...
I have alot of those same issues. I fell 15ft off a roof landed on a ladder. Upmc found a chari malformation with a syrinx.
A chiari headache is far more worse then any other kind of headache.
I feel like someone is hitting me with an axe into the back of my head, I’m now into my 8th month of this
Big mistake to define Chiari at 5mm or more. That is causing a lot of patients a lot of problems getting diagnosed and the treatment they need. Many whom have under 5mm have horrible symptoms and some much worse than a person with 5mm. If no constellation is the same, no Dr should slap a label on the millimeter required to diagnose. Also, you have drs out there who say "if u don't have headaches everyday, all day, your problems aren't from Chiari." That is a mistake of epic proportion.
We agree. Our upcoming 2017 Think Tank meeting will begin to deconstruct how Chiari was once "defined". It won't change overnight, but we are determined to start the ball rolling.
Thank you for your continued help and for spreading awareness.
CSF: Chiari & Syringomyelia Foundation
I had an MRI done over a year ago and revived the results this month (because my neurologist was incompetent)... Cerebellar tonsillar ectopia was discovered by the radiologist up to 2mm it's visible to a layman like myself. I wanted and MRI the day I went to the ER for a "headache" they refused.
My symptoms: headache, fatigue, difficulty waking (waking for a brief moment and then falling back asleep without intending to), conversely I also can't seem to sleep when I need to (like right now), ear pain and spontaneous deafness. Ear pain (and bleeding of the ear which isn't related based on everything I've heard so far), neck, jaw and throat pain, difficulty speaking loud enough for others to hear, spontaneous inability to move one or more appendages when usually just after waking up tingling, numbness in the face a couple of strange near fainting episodes, visual disturbances and a few more really fun and surprising things that get the jump on me every once in awhile.
As a child I had what was described in the video as vertigo. Some times sleeping would give me terrible nightmares where it felt like my body was being flung around, sometimes I'd experience these uncomfortable sensations while awake. Oddly my headaches have deminished greatly over the past year, but I started getting more immediately pressing issues like that temporary total deafness which for a while became uncomfortably frequent. I have difficulty reading numbers or saying words, phases or holding a conversation or even making my thoughts make sense...
I know that Chiari doesn't explain my bleeding or nasal discharge and diet doesn't appear to negatively influence my symptoms. Given my MRI results and progressive apparent neurological degeneration I would say this is really messing me up.
I let my PCP and neurologist know about my head trauma and they both insisted that I had a sinus infection... Just last year the doctors suspected that I had strep throat because my neck hurt so bad. I was given so many useless antibiotics over the past couple of years when all along I knew that my brain was responsible. When the doctors found a small calcification near my temporal lobe I freaked out given my symptoms I suspected cancer.
They claimed it's not causing my problems.
I hardly do anything anymore I was shocked I made it to work yesterday. Probably not today though.
Just how rare is this? I can't imagine it's so rare that no one would've suspected this including the neurologist. What's the difference between CTE and Chiari if anything?
raenterprises I agree. I am one of them .
I completely agree with this my mum has chiari 1 and I've had alot of symptoms so finally got a mri I went to see the neurosurgeon and he said my tonsils have dropped but not significant enough to be chiari so he said I don't have it and in my letter he says I have mild chiari x
I'm at the beginning of this journey, so many things you mention apply to me. Scary stuff. There is so much information, getting the stuff that applies to you is critical.
So happy to hear you're getting the information you need! Feel free to always reach out with questions!
I hope the you get better my journey started two years ago i had the decompression in april of this year I was 10cm I just went though another around of MRI's and found out I'm actually 13cm I feel alone like I gping crazy it's so much to bear
my son is at the starting stages too. So scary. But your not alone. Many blessings
If I smile too much I get a bad headache. Can't read a book looking up either. My eyes start going insane.. like an eye seizure.. I just wait until it stops and cry inside because this is so invisible to my husband.
I see you, I feel you pain. May God bless and comfort you sister.
I’m sorry. I know. My husband has called me many nasty names since he doesn’t believe. It’s so sad.
@chakkakon, Im sorry, that sucks you really need a good support system. If it wasn't for my husband taking care of me I probably would have ended my life. I wish you the best of luck
Most importantlly is that in the YEARS since this is posted we have made NO progress whatsoever! Pain is NOT treated! We are brushed off with "well you look good" how do we get doctors to believe?
For me it has been 12 yrs,no info then. In the years since there is a lot more info available online and it is being recognized more by doctors. My spinal surgeon is now a brain Chiari surgeon. Not that I would have the surgery but in my small state RI for it to be recognized is huge
I have chiari malformation type 1 with a 2mm protrusion and have all of these symptoms plus some. It is dibilitating and painful. I cannot get good quality of care because of the 5mm rule even though I have been diagnosed and have become symptomatic.
In my 12 year nightmare, my herniation has doubled. The one thing I don't see others mention is driving. I can barely drive once a week. I feel like I have a concussion and end up 'down' for days. I would like to hear if others experience the same
Yes ☝️ visual disturbances don't help matters 😢
Lots of great info. We now know that it's not all in our heads! Now, how do you treat it???
Excellent thoughts to share with our Support Group!
This is brilliant. My drs in Scotland just don't understand. This helped me a lot
Same! I'm in Bristol UK. My neuro didn't even tell me these symptoms
I have almost all of these symptoms. My doctor prescribed a depression medication. She also said i could have fibromialgia. I do suffer from depression and anxiety for more than 10 years. I dont see an improvement with that medication. And the back of my head is like 2 eggs. You can feel it. She ordered a cervical spine mri. Because I have a stiff neck. And bloodwork. Seems like she doesn't care that I'm in so much pain. My pain is real. Maybe because I have medicaid they don't care. 😢
I thought I was crazy and minimized stuff until it got pretty bad. Then I got diagnosed with JHS 3 months ago; I thought everyone's joints popped out to a degree but that they were more tolerant of it than me, or that mine popped out slightly more often than anyone else's. All of these symptoms resonate with me, and here I thought I was crazy because doctors said they found nothing wrong. I tried to get a therapist to diagnose and treat me for a somatoform disorder, but she said something is physically wrong with me. Anyway, now I am getting MRI's and EEG tomorrow, and I'm nervous as hell.
I have all these symptoms it’s crazy but the worst to me is the ringing in the ear and the vertigo
Me too.Hugs and compassion to you!
I have all of these symptoms and seizures that just started 7 yrs ago. I just got diagnosed about six months ago. I'm only 4 mm.
Also I'm 39 years old and will be 40 this year.
Any updates? Did you have surgery?
I'm 4mm too, approaching 5mm. My neurologist will not order another MRI and flow study.
I hope that you feel better I'm a 46 years old I have chiari malformation type 1 i had a decomposition surgery done in april unfortunately my tonsil stem was 10 cm I just went through another round of MRI's with a study and found out I'm 13cm after my surgery . I'm in so much pain I feel sometimes like I'm going crazy this thing can be so degenerating and people think becouse I look fine there's nothing wrong with me 😔
I was diagnosed week ago but I know I had Chiari longer. It was hard to find doctor who understants Chiari. My herniation is only 4mm. My symptoms are: headfullnes/headache like head will expldode, dizziness, nausea etc. Make my story short: I finally found a neurosurgeon who will operate me.
Oh please help me
I would love to know how you're decompression went
Diane, you are right on with my Chiari stmptoms. Thank you!
I am going to a neurologist on Monday. As a child I had terrible pain on top of my head a lot, my mother never took me to a doctor, yeah I know. I also had bad restless leg syndrome as a child and young adult. 25 yrs. ago I started having weird ear, face, and jaw pain. My left ear would cut off, like clog up and then noises would make it vibrate with every pitch. Went to all kinds of doctors back then and there was nothing found wrong with my ears but something showed up on some ear test, can't remember. Here I am now almost 60 and for the past 8 mos. have had non stop ringing in my ears or in my head. I've noticed for the past year or so I have a hard time recalling some words. Have had days where sudden depression comes out of nowhere, like I feel so empty like there's nothing inside me, feelings wise then then next day be fine. Can't sleep more than 3 to 4 hrs. at a time. I also noticed a year or so back that when I'm on my stomach and go to lift my next that my breathing kind of gets difficult, weird. I have scoliosis too. I get terrible arm pain sometimes, like right down to the nerves pulsating because it hurts so bad. Right now I am having what I call "skull pain" it's not like a headache, it' like my skull aches especially around my temples and ears. I am almost certain I have this. I'll come back here and comment after I see the neurologist. I'm so scared!
I have Marfan Syndrome and just recently got diagnosed with Chiari I Malformation. I have had what I call pressure headaches for a few years. Even when I don't have headaches I can feel the pressure at the base of my skull and it feels like it's pulling the nerves or muscles uncomfortably when I move my neck. I also get lower back pain and muscle pain around my shoulder blades. Sometimes I get a knot in my neck that makes it excruciating to turn my head and slowly gets better over a week or two. Not sure if that's related. When I bend over the pressure rushes to my head and it's an explosion of pain. Sometimes I have pain in my lower back and my leg. When I have this pain, I can feel the pressure travel up my spine and into my head when I go from a sitting to standing position or when I move in certain ways. These headaches make me feel lightheaded and dizzy. I have attention problems, memory problems, depression, anxiety, tingling in the fingers sometimes for hours at a time. Double vision that comes out of nowhere. Blurred vision when trying to read despite prescription glasses. I have also been diagnosed with mild sleep apnea. I have been searching for the cause of my pain for years. I am so glad to finally have written proof that my pain is real. Even doctors have been confused by my symptoms and telling me it's just tension headaches or too much caffeine (quit and made no difference). Thank you for this video and doing what you do.
Are you go for surgery
I have all the same exact symptoms as you! I'm sorry for your suffering 😢. It is not easy to live this way.
Great video.
I'm bedridden, chiari has robbed me of life.
I pray to see a Doctor Pro.
why r u bed ridden?
@@vvdv3444from the pain!
The last I was checked I was 11 mm. In 1999 I was 4 or a 5 and by that time I was just having REALLY bad headaches. Eleven years b4 I had been diagnosed as having migraines , but the expensive migraine med wasn’t helping. After each child my headaches worsened. They finally did an mri after my last child and found the 5 mm herniation. My question is I started having this pain under my ribs. It started only on the left side. It felt like something was inflamed. That was like 8 or 9 years ago. Now it wraps around under my ribs like a rubber band really tight around my torso. It hurts in that area when I move my arms or move around in bed. I also feel
Like I can’t get a full breath. I can’t even yawn fully. I don’t know if the pain is due to Chiari. Sometimes the pain is further up in my chest near my shoulders and go dwn my arms. Does this sound familiar to anyone? Also, I felt like there is a rubber band holding my head to my body snd when I move my neck it like it’s really tight snd it is being plucked or pulled back snd let go.
As a teenager I was a active but suddenly my legs got weaken I couldn't walk properly and would imbalance even I couldn't walk for too long and had severe backpain doctors were unable to recognise but now as they have known the cause I will be going through my surgery next week
You mentioned Missouri, do you recommend a neurologist here that would be able to treat me without making me feel as though I am crazy, whom can treat me effectively and efficiently?
My symptoms were weakness in legs tingling in leg and severe back pain and imbalance in walking
me gustaria saber los sinyomas en español x favor
This was intresting. My geadaches had gone on since age 8. Told.migraines. saw Neuro and was diagnosed with IH in 2001. Went into remission. MRI in 2011 (chiari found, no one told me) then symptoms got worse in 2019/2020. I was passing out while sat or led down. I was concious but my body was fitting , burning through my body, when my son shook me i came too. I could hear him crying (age9) screaming at me to wake up. Felt sensation of wetting myself but didnt.
Neuro couldnt tell what that was.
UK nhs is great but when you have something like this, no one tells you anything. I had no idea my neck pain/migraines were to do with chiari.
Surgeon said its not bad enough to operate. I had no idea until now that all my "fibro" symptoms could be realted to my chiari
I started getting headaches around the age of 10 or 11. Then as I got older my headaches got worse then eventually they turned into migraines but now theyre strictly chiari headaches.
22 years ago i hit my head on ice skiing. small nonsecreting pituitary adenoma removed ..head pain NEVER goes away. noone will guage my CSF. can anyone look at all my scans ?
The Chiari Institute in NY, Dr Prakash Sampath RI hospital An there's a few drs in Boston,Ohio ,N Carolina
@MsBleau thank you! I'll be trying all of those places. I feel like everything is progressively worsening
20mm descent, yet none of the symptoms discussed. However cannot tilt head more than 30-40 degrees back or lie flat with head straight up (head to side is ok). Sudden and extreme pressure when done. Cannot even hold for a second. Is this a chiari symptom or other possible cause?
Yes because it's putting pressure on c1. The fact that you have a herniation that long and are not having symptoms is amazing. I pray that you never do
Dang, dude, this is so sad😭😭😭😭😭😭😭😭😭😭😭
I have a friend who underwent Chiari surgery, but as her recovery period progressed, she experienced unexplainable weight gain, almost 'bloating. Is there a medical explanation for this post operative condition, it seems as though none of her consulting doctors can find an answer. do you have a clue as to this unexplained weight gain, perhaps an answer to her dilemma? I await your answer, but certainly thank you for your work ,and the instructional nature of this video.
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Thanks.
Caffeine also is a vasoconstricor which helps greatly with headaches making usage a catch 22 for sleep. I can have caffeine right before bed or in between waking because positional onset of headache and caffeine will relieve that pain before I am able to get energized by caffeine
Vasoconstrictor
I have a question might not get my answer but can chiari cause facial paralysis I was just wondering because I am always getting bad headache and feeling dizzy and getting the ringing in the ear and I feel super tired all the time without doing anything and not to mention lately I been feeling depressed and I got tested for EEG and I wont get my results until Wednesday
Yes it can cause that
I had a decompression surgery with laminectomy for chiari type 1 malformation in 2008 and a recent MRIshows metallic fragments Left behind from previous procedure. The only procedure I've ever had in that area was this neurosurgery. I have had about 10 MRIs between the surgery and the one that they finally found the metallic fragments.there were no clips or pins added and nothing about pins or clips is in my post-op report but no one wants to admit the fact that there is a chance that the saw blade or some type of utensil used during the procedure may have been left behind. The last I knew you were not supposed to have any type of metal in your body other than titanium during an MRI. no wonder my head is screwed up for lack of better terms. #zipperHeadsUnite
😱😱😱
So sorry
i have had a full foramen magnum decompression. Can i ask if anyone else has central hyoventilation syndrome as secondary to their chiari malformation?
The best way to diagnose it is an upright MRI w contrast. Every time you lay down for an MRI it will have a different lengths depending on the interpretation of the boxer reading it
I was diagnosed with chialri type 1 with syrinx in 1998 and undergone surgery april 2004. Before surgery my left half of the body stopped growing and right half of the body muscle growth was there but with numbness.
I thought after surgery I will recover from all this defects but it continue to be same moreover I developed memory loss last 2 years that affected my career. could you please suggest me something so that atleast I can get rid of this memory problem? Thanks.
Can chiari cause drusen to appear? I've read that it can, and I have macular degeneration.
What about Chiari 0
I have been diagnosed with Chiari I Malformation with syringomyelia and other spinal problems. Disabled without insurance or income, homebound and unable to function daily.Fine motor skills is a real issue...and as a nurse it became a huge problem. All the typing and documentation killed my hands. I have such pain in my hands and feet and was diagnosed with peripheral neuropathy. Nausea several times a day...and also have reflux. I had bad restless leg syndrome prior to finally getting a muscle relaxant prescribed. I need help and was unable to get help when I did have insurance. I wish somehow I could get help with this chronic pain. My pain, balance problems, and other severe issues make me want to die soon. I have to take so much medication for pain...lots of OTC's for breakthrough pain that doesn't help me very much. Pain wakes me up. I have bad insomnia. I sleep sitting up. But it hurts my spine and coccyx to lay like this all the time. I use heating pads and ice bags as well as many pillows used for positioning. My medications have been cut now d/t the federal government and the CDC attacking my personal right to relief of suffering. I need help. If anyone out there can hear my cry for help contact me. Otherwise I am going to continue to pray to die soon and fight suicidal ideations on a daily basis.
I live in Nashville, TN. If anyone knows of a Dr. that specializes in Chiari and Syringomyelia (other than Dr. Robert Meracle), I'd really appreciate a message back please. Thanks
We're so sorry to hear that you're struggling this way, Loren. Depending on where you are in the country, there may be physicians who can help get you on new, safe medications to manage the pain. If you would like a few names, feel free to email us at info@csfinfo.org. Also, if for any reason you ever feel like you can't go on any more, please call 1-800-273-8255. Someone is always on the line to listen and to help you figure out what can be done to find a solution. We need you here. Advocating alongside us.
Has a connection between food allergies and chiari symptoms been explored?
Specifically an allergy to dairy and gluten?
I dont now but always i have that question because i feel that i have food allergies...
I have noticed a lot of my symptoms disappear on the AIP diet
@@angelamoore152 what's the aip diet
@@donzelshowes154 www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
I've never heard of this. I have, however, been diagnosed as a hypochondriac because I have most of these symptoms. I will likely never get an actual diagnosis because I live in the USA and even with insurance will never be able to afford the out of pocket.
I was born with his and its getting worse
Can caffeine worsen chiari headaches?
Caffeine works differently in different people. In some, caffeine can worsen a headache, in others, it may help to relieve it. Strict "Chiari headaches" are generally worsened via Valsalva maneuvers, which involve physical straining that puts pressure on the back of the head.
Bobby Jones Chiari & Syringomyelia Foundation Thank you so much for your response. I definitely get horrible headaches and pressure when straining. I’m going to ask my doctor about this possibly. I’ve been suffering with mysterious symptoms for years.
@@BobbyJonesCSF
1) Can an Chiari's tonsillar herniation displacement vary from down to normal and down to up again and again... over time? like in a Plateau curve.
2) Can a Chiari suboccipital unbearable headache completely gone as soon as you lie flat or in trend position?
3) It is also possible that coughing, exercise and valsalva induced extreme headache could be absent lying flat?
4) Why my Chiari is relieved with coffee besides supine relief?
Note: I have this problem after a fall backwards 4.5 years ago with contribution of oral trial of tetracyclines, and I have 4 different diagnosis from different neurologists:
- Primary cough headache
- Cyclic variable Chiari I: 5mm, 2mm, then 0mm, 5mm again, 1mm, none, 4.8mm, and so on in follow-up MRIs, sometimes above FM plane, sometimes below, and sometimes spinal cord kinking. Without syrinx.
- Chiari-Like / Chiari 0 with tight posterior fossa
- Spontaneous Intracranial Hypotension, with no leak found to date (intrathecal myelogram) and normal Lumbar Infusion Test... but sinking iter to aqueduct, variable flattening and effacement of prepontine cistern against clivus, flattening of corpus callosum, empty sella and ultra peaked elevated tentorium. I forgot to mention giant predominant right vertebral artery with some medullary compression to the left, below inferior olivary nucleus.
Thanks. I'm living a nightmare and I'm considering the suicidal solution.
was she talking about chiari or she was just mentioning general problems of general people m
I have these things but i am a disabled vet ???
As a vet, if you have traumatic brain injury it might present with similar symptoms to Chiari.
Yes but my mri shows slight 7 cm Chiari.also.
@@davidgalloway45 Did you ever get this looked into? Hope all is well.
Me who went to jail stone-cold sober because they pulled me over illegally and smelled weed in my car and I FAILED THE FIELD SOBRIETY TESTS: 🤯🤯🤯