This is actually my channel, I just lost all the information for it. I have been through alot since this and it's been very difficult to get on with things. Until I can figure out the password, I'll reply to whatever questions there are with the account i'm using now.
i go in for decompression sep 23. it took alot to get diagnosed i had one nurologist tell my husband that i was making it up that there was nothing wrong but i had the mris to show he was wrong the dr didnt look at them just the report. i took it upon myself to see a chiari specialist at the u of u and my last appointment we scheduled my decompression. (id love a shit by the way) i posted this to my fb so others will understand. thank you
@meltinglillies How did your surgery go?? This is my account btw. I just lost all the info for this account to log in so I had to make another account. I haven't made the shirts yet. I'm trying to work on them. Haven't been doing that well when it comes to the chiari situation. I hope all went well =)
Thanks for the video. My daughter(who is 7) was just diagnosed with this, this past June(on my birthday actually) :( it sucks and I wish i could take it away from her. She will be having a surgery because she is symptomatic and looking at the MRI scan her condition will only worsen as time goes on. Once again thanks for the video and it gives me hope for my daughter :)
My main condition is L5-S1 Type 3 Spina Bifida. Also with this and I have had everything since birth. I am 25 in the past month I have had dizzy spells, weakness in my right side, headaches, vomiting, and motion bothers me. I had my nuro doctor since I was born. He said my Arnold has caught up to me. He is going to do an operation with the base of my skull but would he touch the brain?
My gut tells me that I have CM, but I am waiting to get an MRI next week. I have already been diagnosed with pseudotumor cerebri, diminished size in the vessels for someone my age and erosion of sinuses with boney changes. I have so many symptoms of this to include the headaches in the back of my head to the top behind my eyes, tingling on top of my head and this horrible burning sensation from shoulder to shoulder. Many other issues all the way to my toes and that awful vertigo.
good video but Id like to add that 20% of patients have no relief of symptoms after surgery. I am one of those unlucky chiarians..havin my 4th surgery march 8th...also chiari is diagnosed through MRI not CT.
@sharonlynnify I didn't mean CT as in determining if you indeed have it. That is the MRI's job. But I had a CT scan done because of the bad headaches i was having prior to the MRI to see what was going on. No tumors, but they were concerned and neurologist sent me for an MRI. The CT doesn't diagnose, but it helps. It eliminates other possibilities and makes things easier for the neurologist to figure out what is going on. Should have put it that way. I'm truly sorry =) How did your sugery go??
hey, i wanted to thank you for the video, i also have chiari malformation i, and have a lot of symptoms. its affected my life tremendously to the point where im actually taking off this semester in college.
i almost failed last semester. things are a little more complicated too, because i also have developed scoliosis which is associated with chiari as well.
i was just wondering -- how many mm. did thy say your herniation was before you got the surgery?
@LittleLizzie06 Hey. This is my account. It's still me, I just lost all the info to log in and had to make a new account. I'm so sorry about that though. It really does effect your life so much. I took off two semesters myself because all the headaches. I have a little scoliosis too from the Chiari. I also have heart problems because with chiari patients, your valves, veins, arteries, everything is very very flexible. Chiari patients tend to have mitral valve prolapse. My herniation was 12 mm.
And I also found out I have psudo tumor cerebri that put pressure behind my eye so that made my body think I have a brian tumor!!!! But it's not to bad...I meeN once u get used to it it's not that bad:) nice vid by the way!
@musicluver2410 Thank you. This is my account, I just lost all the log in information. Haha. But thank you! I was doing better around this time I made the video. It's been harder since. I thought I had a brain tumor before I got diagnosed with chiari. Well, it was my first thought. All the constant non-stop headaches. It made me afraid that I had a brain tumor or something. Was crazy waiting for the results of the MRI!
@daddad77 Mine acts up everyday now. It's me btw, same person. I just lost log in info for this accound and had to make a new one. I'm answering everyone this way. I was fine when I made this video, then I got into a car accident. A woman ran the red light, was going about 60 and smashed into me. I was rushed to the ER because I immediately had a horrible headache. They did a CT scan and saw that my plate for the Chiari was out of place, way out of place. I've been worse ever since.
@daddad77 My car was totalled, hers was not. I was beyond pissed, didn't care about my head. She was cited for everything, because nothing was my fault, I had the right of way. This all happened after this video, which was after my 3rd chiari surgery. I was told I needed to have surgery to correct everything, however, I refuse to go in for a 4th brain surgery. I've had plenty and as long as i'm not going to die, I can deal with the headaches this time. That's how I friggin look at it now. =D
hi im 13 and my mom has had every symptom of chiari 1 malformation...if u really get in2 detail there are about a hundred or more side effects and she has about 90% of them. so she had me google it and considering she thinks its type one, it isnt terminal!
Chiari is very scary and anyone that can push past all of it is a real trooper:) And has anyone else gotten real depressed aftwards, or just me? I still have a couple of migraines a few times a month, but it is way better than before!! Well to look on the bright side, we now have a kick ass scar, and I can tell everyone I have a pig membrane attached to my brain, LOL:) I definetly want in on the shirts.
Thank you for making this great video!!! I am 28 and started having migraines in my early teens. So I had about over a hundred CAT scans and tried every medication on the market, until finally at the age of 25 my eye Dr. found "webbing" behind my eyes due to not having much room in my skull. Then I was sent to a Neurologist to do an MRI and he found my Chiari...So a week later I was in the hospital having my surgery.
I was diagnosed in April of this year with chiari, and had the tonsillectomy in middle of May. Recovery sucks, but I'm getting there. It's rebuilding my neck muscles that are the worst of the problem...that, and vertigo. Good to know that other young ladies suffer as well!
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they have been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
I m hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they have been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
Im hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
First off, thank you for a very informative video and I'm happy that survived through this. What is the difference between decompression and cerebellar tonsillectomy?
You mentioned that you had the decompression procedure done but than you had the cerebellar tonsillectomy procedure done.
The difference between the decompression and the cerebellar tonsillectomy is that the decompression is when the neurosurgeon shoves the tonsils on the cerebellum but up into your brain where they belong and then closes the area off with a synthetic plate to make sure the tonsils dont drop back down. The tonsillectomy is when the neurosurgeon actually cuts off the cerebellar tonsils. So, they no longer exist basically.
@AsHleYBaBByy20 May I ask who performed your surgery please. Cause people say doctors don't do cerebellar tonsillectomy procedure no more and that decompression procedure is better. I don't know what to believe. Isn't the cerebellar tonsils important to our brain/body? How long has it been since your surgery and how are you feeling now, do you still have symptoms.
Most importantly which procedure would you suggest to people: decompression or cerebellar tonsillectomy?
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they have been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
I m hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they've been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
I m hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
I would like to see the final product on the shirt! I too am a chiari sufferer to which I have no gotten my decompression surgery yet. Kudos to your recovery and live pain free!
@adamazing1 there on their way =D I have to get with a printing company and I am actually working with a cartoonist right now on the t-shirts. They'll be here soon.
Seeing this makes me see how lucky I am to only have type 1 I didn't even know I had it the doctor came upon it when I had an MRI of my head only minor no surgery thank you for sharing your story it made me so thankful for not needing another surgery
hi i am 13 years old i have recenlty been diagnosed with arnjold chiari malformation me my sister my cousin and mom have the same condition i will have surgery in the next 2 weeks and me and my mom are starting a campaign.
I am also a fighter with arnold chiari malformation i had sergery when i was five i am now 25 and still suffer with this i dont know if it is normal to still have problems. I know that there is no cure to chiari malformation. thank you for posting this viedo you are an insperation.
Actually Chiari malformations are common. But most people dont have any symptoms, so they are found accidentally and surgery is not needed becasue it isnt causing any problems.
I must be the luckiest guy around,I had my surgery in 95 and my life has been great since,I jog,do muay thai and the gym,think positve,I wish everyone the best I hope you guys can be as lucky as I was!
I was diagnosed with ACM in 2005 & have had 3 surgeries since that time. I appreciate that it will never completely go away but it is frustrating, could be worse though, I am alive & have 2 great kids :)
Good video, great scar at the end, got one of them too!
Didn't realise there was so much about ACM on here, willlook at some more when I get the chance
To all who are awaiting treatment, you will be fine, it's a long road but you will get over it all :)
widemouthedfrog1 I am Brazilian forgives not to know to write in English. but I discovered chiari in examination for reason of an ear pain and average loss of the hearing. what I have made at the moment and to believe god yehoshua (Jesus) believing that it to know optimum for me believes in the reversion of the problem
Yes, there is a good chance it will get a lot worse over time. If it does not, your lucky. Ask for medication if you need to to keep the pain away but if you notice that everything seems to get worse then I would start thinking about surgery.
a would love to get the surgery just in case but like u say so few doctors will perform a it it will be damn near impossible here i live in scotland and the U.S is more the place with all the kl equipment and techniquies of doctors
none of the types are completely treatable....at least not yet....just saying....because I have talked to so many people that have had surgery, and multiple surgeries at that and still have symptoms bad enough that it alters their lives.
Yes none of the types are treatable, you are correct. That is why I have had multiple surgeries and my problem is still on going after I just had my third surgery. It's devastating to know that you can not be fully treated and the surgery will not work.
No that is not a type of Chiari Malformation. Syringomyelia comes with the Chiari Malformation if the malformation is bad. Try not to be nervous, I know that's easier said then done but it helps not being nervous. Tell me how you made out.
Hi my name is James. I'm 38 and have had 2 surgeries for ACM myself. Plus the Syringo Myelia. After my surgeries one in 1995 and one in 1996, I had some relief. However the symptoms are slowly coming back. Hang in there and be strong!!!
hey girl! your so brave haha i get creeped out just seeing your surgery pics i was diagnosed with chiari 1 at the end of december 09-january 2010 but they said since my pain isnt keeping me from everyday life and my balance is normal that they are just going to watch mine (i also still have some csf flow) so im hoping when i enter college in 2 years it doesnt interfere but this video helped me alot thanks :)
@gwisbck i'm in the exact same situation as you except i was diagnosed bac in 07 and am finding the headaches and heck pain manageable but and balence and eyesight are ok at the moment but have you ever notice an abnormal walk cause i got that and on one of the websites they say that's a possible symptom
not really...my balance/walking is kind of perfect...i am in marching band and i have to walk perfect straight lines and marches backwards on my tip toes alot and i do fine
Thanks for the video and for all the information being posted...i got diagnosed about 2 months ago, and now have my decompression surgery coming up in 2 days (Jan 29th) . Im pretty nervous about it and am wondering how long after the surgery until i start feeling some relief of the symptoms caused by the syringomyelia.
I had relief 1 week after surgery. But I am also a very fast healer so it shouldn't be long after your surgery. If you do not get relief at all... that's not a good sign. Good luck! You'll be fine =D
my boyfriend has chiari 1. he had surgery when he was in 8th grade and doesnt have anymore problems, that i know of. i'm so glad that his doctors were able to diognose it and fix it. i'm behind everyone who has it and you all have my love and support. god bless
So my name is Felisha and im 14. I have chiari 1 and i got my surgery on november 19, 2008 and im still having problems. I will probally never feel the left side of my head again, Anyone with the same problem?
Yes, I have the same problem and I am pretty sure a lot of people that have had this type of brain surgery, or any brain surgery for that matter have the same problem. I can't feel the entire middle of my head, I have no feeling there at all anymore. I still have problems and so do a lot of people. The surgery is a win or lose situation. Doctors can tell you, "this is the only surgery you need and no more problems", but, that's not true. It's either the surgery works or it doesn't.
Hey Viper I had my surgery in April 2002, went back 2 work 4 5 yrs. became very symptomatic again. I would really like talking with u. I'll gice u a buzz.
its really important to me that i find out who has been diagnosed or who is being diagnosed and who has had the surgery done so i can get in touch with people so i can get questions and support and comfort by people. please call: 207-549-5199
no it could not be true at all if u have any signs of chiari it means u have it. don't trust doctors they hardly know about this disease at all i promise u. please call me and i'll chat and tell u everything u need to know about this disease and the signs
met another doc too .. the chiari is obviously there .. doctors don't disagree on that.. but they say it's(chiari's) effect on nerves are minimal.. and says formation of syringomeylia means its not serious... they say that they can do a decompression surgery but would recommend to stay on pills..
if anybody is comfortable with talking on the phone about this disease please contact me i could use some great advice and support and i can give u my story of my surgery.
after seeing the MRI the first doc we met said that he would recommend going for a surgery. n as we have in mind to have another child the doc said he wouldn't recommend getting preg before surgery. But the next doc we met yesterday said he would not recommend surgery cause there was no sign of syringomyelia. He said it is better to take pain killers and some to strengthen the nerves. He also said ok to getting preg. Now I'm pretty CONFUSED. Still I will have a 3rd opinion this Monday.
hey believe me the doctors and neuro surgeons and neurologists and specialty teams hardly know about this disease since its very very rare and i had the surgery on may 20,2009 and i am still having complications and issues
my mum has had the chiari malformation surgery and even though they say it is not hereditary i do not believe them because now i have one too. i might have to have surgery but we will not know until next month. the only effects it has on me is headaches and dizziness
They say it can be, they shouldn't be saying it's not passed down. My neurosurgeon said that they are not sure if it is hereditary but they do know for sure that you are born with it. It is a birth defect and it starts to manifest around the ages of early teens. My neurosurgeon did say it possibly could be hereditary but they are not sure. It's a possibility. So don't listen to that lol.
Forgot to mention, sometimes babies suffer from this condition and they need surgery right away. Sometimes like I said, it doesn't start to cause problems until early teens. That is the most common time they say. It can start causing problems any other time but it's like 80% start in early teens. That's when mine started but they think I have the condition because my father was in Vietnam and he was exposed to "agent orange" they were supposed to be healed from it, but he never got treatment
i had all signs as a little children and not a single doctor took the time to check it out then. i was diagnosed on april 10,2009 the day of my 22nd birthday. i had emergency surgery on may 20,2009 and it supposidly was successfull what i joke it wasn't i ended up spending my whole summer in the hospital with managise three times and a sever infection at the surgical site
They cut them off. Patching the cerebellum means to put a synthetic plate there to keep the fluid from being so tight in there, like there won't be so much pressure. Didn't I not say that? Actually watch the video, and ask your doctor about this. You'll probably actually know about this condition if you do ask the Dr.
sorry for being so immature on this.. the problem is that there are no doctors around where i live who knows this problem. the cutting of part is really scary. but im glad your doing fine. and thank you for keeping posted.. you are an angel.
It's ok, I thought you were messing with me. Your best bet is to go to NYC because they have the Chiari Institute there and they are awesome. They know everything about this condition, they are up on everything. Yes the cutting off part is very scary but rarely anyone has a problem from them being cut off. Thank you =)
sometimes medicine makes the pain and generally other symptoms go away.. this worked like for 8 months.. and returned again.. does anyone had this fixed by medicin??
the MRI done in different six months period showed no formation of syringomyelia... so then it is safe to do away with medicine without doing the surgery? isn't it?
idk what your last question means. are you saying its better to do the medication and not surgery? People who actually have this condition that are suffering bad... need surgery... therefore, idk what your talking about. people who do not have this condition the bad way they don't always need surgery... but your symptoms went away? then its not chiari man. i was told your symptoms will never GO AWAY they will be PREVENTED from hurting more or getting worse and even decreasing the pain completly.
but they will never get fixed ever. This condition CAN NOT be fixed in any way. They can keep you from having headaches all the time. you dont have chiari? im tired of people saying this stuff can be fixed when it CAN'T
For one, there is no solution to this. Having the surgery just prevents you from dying or from getting worse. The surgery is the best way to go if you are really really suffering from this condition. If you are not, your doctors will probably want to put you on medication to keep the headaches from being so often and so painful.
Thank you so much for posting this! My daughter is 13 and was diagnosed today. We have an appointment to meet with the neurosurgeon Dec. 3. I don't know what level she has, only that she has been enduring severe head pain for almost a month now. I wish you all the best with your recovery. I'll be watching for the shirts!!
hey everybody i really enjoy that so much peopel alive the syndrom (im really sorry for my bad english^^hope you can understand me with all that bad english^^) i have arnold chiari syndrom too and im 19 im still afraid of the operation i think because i dont know very much about it anyways i hope all of you doin well and nice idea (the t-shirts) i would buy one if i could get it in germany^^
I know the operation can be very scary. You just need to think in the way that you will be much better afterwards. Always think positive if you can, I know it is very hard. Try watching other videos as well, that may help you more. Ask a neurologist too and if you have a neurosurgeon ask him/her too.
Hey....i went to the neurologist in town for like almost a year he gave me all this medicine for my problems but nothing worked. So he gave up. I have been looking into this malformation and im pretty sure i have it. What was your symptoms? I have been told i cant have it because my parents dont but im not sure that is correct. If you could help me I would really appreciate it. Thanks for reading, Bre
My parents do not have Chiari, but i do. It is not always caused at birth, nor does it have to be heriditary. Your best bet would be to go to a Neuroligist who specializes in Chiari to get some real answers. There are lots of good websights that are a big help in finding a doct in your area. My symptoms are alot of things. Mostly a burning type pain in my upper back and neck area. A feeling like my muscles are very week and waisting away.
It can be passed down or it could be from an accident, like, a big fall or a car accident could have started it. My neurologist believes mine was caused by Agent Orange. That is the chemical they used in Vietnam to kill the trees and plants to make room. My father was in the Vietnam and was exposed to this chemical constantly. When the vets came home they were supposed to get treatment for this but my father never got it. Therefore, doctors strongly believe this is the cause of mine.
I am 22 years old. I have hydrocephalus with no signs of a malfunction since birth. I also had an encephalocele at birth which may have caused the hydrocephalus. I recently (in the past 5 years) discovered I had Arnold-Chiari Malformation. I don't know if I will need a surgery but I now know there is one more thing wrong with me. Life sucks!
The is a terrible disorder the pain is horrible. I think i took having two kids alot easier than this pain. I cannot wait to have my surgery here is two weeks its nice to see people out that doing this type of videos. People need to know more about it.
I finally got to go see a chiari specialist in Mi Wi. They told me i have moderate Chiari but it does not fit criteria for surgery. I am happy to know FOR SURE why i have all the issues i have in my upper back and neck, but now i feel STUCK!! Any Extension at all of my neck causes me so much pain that somedays it could drive me crazy. I am not sure what to do to learn to tolerate this, since i am not a canadate for surgery to repair my chiari. Suggestions?
Thanks so much for replying. I am meds from seeing a doct at the pain clinic. They have me on some pretty heavy duty pain meds, but i still have daily pain. I guess i have to figure out a way to live with it, and be thankful that i do have meds that make the pain more tolerable. I hope your teeshirt idea works out for you. There is so many wonderful people out there with Chiari who truly understand each other, and want to do what they can to help each other. Thank God for those people.
I would luv a Chiari survivor T-shirt. I am having a decompression surgery in Dec so not a survivor yet.. but would be good to help raise awareness of the condition.
Thnx AsHleYBaBByy20 you have provided me with some questions to ask my neurosurgeon before going ahead with surgery
I am currently working on the sketches, I just need funding for the project. So when I start my new job, I'll be making 35$/hour so I will be able to have them printed and sent to all of you.
im yet another ACM sufferer but unlike you, i was told i wasnt allowed surgery of any kind to fix it, the headaches and numbness you talked about are something i experience every single day and YES Arnold Chiari Malformation SUCKS!!!!!!!!!!!!!
I Had My Decompression Surgery The 7th Of June, And While They Were At It, They Did A Tonsillectomy. I Am Still Expericing Some Of The Most Intense Headaches I Have Ever Had, Along With A Host Of New Symptoms. What Gives?
Well, your probably the 5% of tonsillectomy people that the symptoms come back. You might need something more than that, like a shunt. Ask your doctor.
Hey Ashley. I was just diagnosed this past week. I went to my GP two weeks ago after experiencing the most intense headaches of my life. She referred me to a neurologist, who sent me in for MRIs - she was looking for a tumor and instead discovered Chiari. My herniation is at 1 cm. I meet with a neurosurgeon on Thurs. I've read a lot about the decompression surgery, but I your vid is the first I've seen about a tonsillectomy. Thanks for posting this. Now I have a new question for my neurosurgeon.
Hi Ashley, my name is erin my husband was diagnosed last week after years of not knowing and dealing w/symtpms, he has alot of pressure and passes out alot. my ? 2 u is would having the tonsillectomy 1st solve the problem or does he have to get a decompression 1st? Im still researching..we will b having a 2nd opinion next FRI. THANKS
Hello. Well, I was told by my current neurosurgeon that if I had the tonsillectomy first I wouldn't have had the other two and I wouldn't have been back there so many times. I honestly do not know for sure. I have no way of contacting my older neurosurgeon and asking him questions. I guess I would go on what my current neurosurgeon says and I would look into having it first, not the decompression. I would get many opinions too!
I keep getting personal messages asking if I am German. Yes, I have 100% German. Germans are known for blue eyes(me) and blonde hair, which I do not have anymore only because it changed to brown. But yes, lol. I have the pure white skin and my whole family has blue eyes, except my mom, shes got brown. I am German ^_^
Just wanted to say that. A lot of people ask me, lol. Anyways on with Chiari commenting! ^_^
I Had A Sub-Occipital Decompression Surgery For Arnold Chiari Malformation Type 2, And At The Same Time A Chiari Tosillectomy, And This Was The 7th Of June. I Am Still In EXtream Pain, And Now They Tell Me I Have Cerebral Spinal Fluid Building Up... What Gives?
Yeah pretty much. Not the throat tonsillectomy. The Chiari tonsillectomy. People mix those up lol. The first surgery I had was a decompression and that was in March of 2005. Second surgery was a re-do and that was in March of 2007. Then my third surgery and most resent was done on Feb 13th 2009. The third surgery was the Chiari Tonsillectomy. I am completely pain free from the surgery. I just have to deal with my back and neck from the car accident in May of 2009 right after my surgery basically
LOL yeah I am pretty sure its not the throat tonsillectomy.. I have ACM 1.. had decompression surgery in May of 1997, 12 years post op and trust me what I have read and seen, things have come a LONG way since my surgery, I can remember my mom givng the docs permission to take my case to conferences.. I am still learning to this day about ACM..
My daughter needs Chiari surgery. We are having difficulty finding a neurosurgeon who will do a tonsillectomy. They all want to do just the decompression. Who was your neurosurgeon or can you suggest someone? Please help.
I am terrified of my kitchen and kids in the kitchen while I cook. I have burned myself and dropped knives so frequently that I now keep my kids out of the kitchen while I cook. I also take my time. The more I rush, the more I drop things. I have only had one incidence of falling, in high school that we contributed to stress then. Though, I have tripped repeatedly and still do. I think knowing is half the battle when it is not severe enough to lower your standard of living.
=( I'm sorry about that. Well i mean I think I would still have the surgery even if my headaches were not severe. Just to get rid of all the other annoying symptoms. But I understand what your saying.
The reason I opted out of the surgery for now, was that it's not severe in my case. It's not everyday that I deal with the headaches or the other problems. I do check up on it once a year, but controlling my allergies almost completely stops symptoms. I don't think I would have opted out if the headaches were more severe that it stopped my level of living comfort. I am having my yearly in a few weeks to see if the herniation is worse as my symptoms have gotten more noticeable in recent weeks.
Thank you for this video. I am diagnosed with CM1, though mild. I still have all the symptoms, just not as frequently.
Headaches are the worst, sometimes in clusters for days, then I'll be fine for weeks. The blurry vision, little ticks that come and go depending on how bad my head is hurting, and numbness in the hands that causes me to drop things often. I am 34 now, and did not opt for surgery.
I drop a lot of stuff too. It's very annoying. I prep and cook... so... yeah I dropped things frequently now. I actually drop entirely once in a while. My legs just let go and I have to drop down and chill for a minute.
I started having numb patches of skin, in my hands and feet and back, also a headache that never went away. It was never severe, just a dull throb all the time. We thought I had MS and went to a neurologist that did a host of tests. It was the MRI that caught it. It's not big, only a few centimeters, but the herniation varies if I have sinus trouble, which I do all the time thanks to allergies. The most common symptoms I have during an attack is the weakness and numbing of my hands and headache.
Just trying to get it out there. People ignore the symptoms like the headaches thinking it's due to stress. Well, I think people should really think twice about that if they suffer from these symptoms.
Yeah migraines is a big things with this condition because it all has to do with the pressure and blockage of CSF. Well and to find out about the cancer all you'd need is a blood test.
Yeah my diagnosis a year ago explained a lot. Everyone thought I was a hypochondriac. I've been thinking about "thinking about" the surgery lately. I have a LOT of pain all the times. I take Lyrica. Helps a little. But I have so many randoms things going on b/c of this thing. I'm down about it right now. I'd almost rather have just the pain and not the pressure. I follow up in a month. Probably going to get another MRI and check up on the spine too. I suffer through work lately. Idk.
Yeah and I go back and forth about it. I'll have a decent day once in a while and think "well maybe I can just deal with it"... but the next day I can't function very well. And I can't tell what comes from what. I mean, if something else were wrong, I don't know that I would be able to tell. Some people at work are responding differently to me right now and I don't like it. They don't know what this is. They don't understand. And they never will.
Yeah about the not understanding part... I just had an incident this morning at my college when I went for class. The professor asked me, "So you had brain surgery?" (In my medical records). I reply. He then says, "But, it doesn't hurt right? Like how bad could it be? It's just brain surger." I went ape shit on that fag. OMG! I get so pissed when someone tells me, "brain surgery doesnt hurt". Hello?! Have you ever had it?! No? Then shut your fucking mouth!!!
Both my mom and I have Chiari. She'd had two decompression's and multiple other surgeries. I've been lucky and only had to have a tethering of my tethered cord, and that seems to have helped a lot.
i would love a t-shirt!!!
bestacio1 1 month ago
I was just diagnosed this past weekend (January 28th)
aLiTSkI91 1 month ago
This is actually my channel, I just lost all the information for it. I have been through alot since this and it's been very difficult to get on with things. Until I can figure out the password, I'll reply to whatever questions there are with the account i'm using now.
Fallout3Babe 1 month ago
Hey, my name is Bree. I am also a Chiari survivor. i was wondering if you still had any of the t-shirts?
powertumbler11 3 months ago
i go in for decompression sep 23. it took alot to get diagnosed i had one nurologist tell my husband that i was making it up that there was nothing wrong but i had the mris to show he was wrong the dr didnt look at them just the report. i took it upon myself to see a chiari specialist at the u of u and my last appointment we scheduled my decompression. (id love a shit by the way) i posted this to my fb so others will understand. thank you
meltinglillies 5 months ago
@meltinglillies How did your surgery go?? This is my account btw. I just lost all the info for this account to log in so I had to make another account. I haven't made the shirts yet. I'm trying to work on them. Haven't been doing that well when it comes to the chiari situation. I hope all went well =)
Fallout3Babe 1 month ago
Thanks for the video. My daughter(who is 7) was just diagnosed with this, this past June(on my birthday actually) :( it sucks and I wish i could take it away from her. She will be having a surgery because she is symptomatic and looking at the MRI scan her condition will only worsen as time goes on. Once again thanks for the video and it gives me hope for my daughter :)
gamommy85 6 months ago
I would love one! :D
AndyElsender 6 months ago
I would love a t-shirt -- surgery 12/6/10 --
vjd8082
vjd8082 7 months ago
My main condition is L5-S1 Type 3 Spina Bifida. Also with this and I have had everything since birth. I am 25 in the past month I have had dizzy spells, weakness in my right side, headaches, vomiting, and motion bothers me. I had my nuro doctor since I was born. He said my Arnold has caught up to me. He is going to do an operation with the base of my skull but would he touch the brain?
lakelandchief 7 months ago
my son has this. thank you for making this video.
christina92004 8 months ago
Would love a shirt.
Decompressef 9/14/10
janaemarie10 8 months ago
My gut tells me that I have CM, but I am waiting to get an MRI next week. I have already been diagnosed with pseudotumor cerebri, diminished size in the vessels for someone my age and erosion of sinuses with boney changes. I have so many symptoms of this to include the headaches in the back of my head to the top behind my eyes, tingling on top of my head and this horrible burning sensation from shoulder to shoulder. Many other issues all the way to my toes and that awful vertigo.
pris72 10 months ago
good video but Id like to add that 20% of patients have no relief of symptoms after surgery. I am one of those unlucky chiarians..havin my 4th surgery march 8th...also chiari is diagnosed through MRI not CT.
sharonlynnify 1 year ago
@sharonlynnify I didn't mean CT as in determining if you indeed have it. That is the MRI's job. But I had a CT scan done because of the bad headaches i was having prior to the MRI to see what was going on. No tumors, but they were concerned and neurologist sent me for an MRI. The CT doesn't diagnose, but it helps. It eliminates other possibilities and makes things easier for the neurologist to figure out what is going on. Should have put it that way. I'm truly sorry =) How did your sugery go??
Fallout3Babe 1 month ago
Comment removed
sharonlynnify 1 year ago
Comment removed
sharonlynnify 1 year ago
hey, i wanted to thank you for the video, i also have chiari malformation i, and have a lot of symptoms. its affected my life tremendously to the point where im actually taking off this semester in college.
i almost failed last semester. things are a little more complicated too, because i also have developed scoliosis which is associated with chiari as well.
i was just wondering -- how many mm. did thy say your herniation was before you got the surgery?
LittleLizzie06 1 year ago
@LittleLizzie06 Hey. This is my account. It's still me, I just lost all the info to log in and had to make a new account. I'm so sorry about that though. It really does effect your life so much. I took off two semesters myself because all the headaches. I have a little scoliosis too from the Chiari. I also have heart problems because with chiari patients, your valves, veins, arteries, everything is very very flexible. Chiari patients tend to have mitral valve prolapse. My herniation was 12 mm.
Fallout3Babe 1 month ago
And I also found out I have psudo tumor cerebri that put pressure behind my eye so that made my body think I have a brian tumor!!!! But it's not to bad...I meeN once u get used to it it's not that bad:) nice vid by the way!
musicluver2410 1 year ago
@musicluver2410 Thank you. This is my account, I just lost all the log in information. Haha. But thank you! I was doing better around this time I made the video. It's been harder since. I thought I had a brain tumor before I got diagnosed with chiari. Well, it was my first thought. All the constant non-stop headaches. It made me afraid that I had a brain tumor or something. Was crazy waiting for the results of the MRI!
Fallout3Babe 1 month ago
I fouNd out I had this in 09 and I HATE it!!
musicluver2410 1 year ago
mine is acting up right now :( fucking HATE this. i was diagnosed in 08, its hell..
thanks for the video, i hope youre okay :) have a good day.
daddad77 1 year ago
@daddad77 Mine acts up everyday now. It's me btw, same person. I just lost log in info for this accound and had to make a new one. I'm answering everyone this way. I was fine when I made this video, then I got into a car accident. A woman ran the red light, was going about 60 and smashed into me. I was rushed to the ER because I immediately had a horrible headache. They did a CT scan and saw that my plate for the Chiari was out of place, way out of place. I've been worse ever since.
Fallout3Babe 1 month ago
@daddad77 My car was totalled, hers was not. I was beyond pissed, didn't care about my head. She was cited for everything, because nothing was my fault, I had the right of way. This all happened after this video, which was after my 3rd chiari surgery. I was told I needed to have surgery to correct everything, however, I refuse to go in for a 4th brain surgery. I've had plenty and as long as i'm not going to die, I can deal with the headaches this time. That's how I friggin look at it now. =D
Fallout3Babe 1 month ago
thanks for ur video it was very informative
hamzarayes2010 1 year ago
Did you ever make the Tshirts? I would love a zipperhead one. I was just diagnosed 10/8/10.
OliviaGreen2010 1 year ago
Tanx 4 the vid and horay that you got thru!!!
I've just been diagnosed so my journey has just begun
ruralparson 1 year ago
Tanx 4 the vid and horay that you got thru!!!
ruralparson 1 year ago
god bless you. stay strong.
1warriorclass1 1 year ago
hi im 13 and my mom has had every symptom of chiari 1 malformation...if u really get in2 detail there are about a hundred or more side effects and she has about 90% of them. so she had me google it and considering she thinks its type one, it isnt terminal!
Sterbearlovable 1 year ago
Chiari is very scary and anyone that can push past all of it is a real trooper:) And has anyone else gotten real depressed aftwards, or just me? I still have a couple of migraines a few times a month, but it is way better than before!! Well to look on the bright side, we now have a kick ass scar, and I can tell everyone I have a pig membrane attached to my brain, LOL:) I definetly want in on the shirts.
laciejohn 1 year ago
Thank you for making this great video!!! I am 28 and started having migraines in my early teens. So I had about over a hundred CAT scans and tried every medication on the market, until finally at the age of 25 my eye Dr. found "webbing" behind my eyes due to not having much room in my skull. Then I was sent to a Neurologist to do an MRI and he found my Chiari...So a week later I was in the hospital having my surgery.
laciejohn 1 year ago
Comment removed
laciejohn 1 year ago
I was diagnosed in April of this year with chiari, and had the tonsillectomy in middle of May. Recovery sucks, but I'm getting there. It's rebuilding my neck muscles that are the worst of the problem...that, and vertigo. Good to know that other young ladies suffer as well!
higgee11 1 year ago
shirts sound awesome, but without a size limit for us bigger people. lol
pgomba01 1 year ago
nice It's amazing how little is known about our disorder.I am having y surgery Aug.3rd. and I would love a shirt!!
lilredhood27 1 year ago
dude! 5 years with a subarachnoid shunt! id love a shirt.
pianopaws5 1 year ago
i wish u live a healthy and long life .
thnx fr the video
suhale ..pakistan
mafiaa777 1 year ago
My son Daniel was diagnosed today with no symptoms at 16 we will leave it alone. I loved your video! Thank you for the inspiration!!!!!!
zookeper 1 year ago
This has been flagged as spam show
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they have been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
I m hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
tharilyn 1 year ago
This has been flagged as spam show
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they have been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
Im hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
tharilyn 1 year ago
First off, thank you for a very informative video and I'm happy that survived through this. What is the difference between decompression and cerebellar tonsillectomy?
You mentioned that you had the decompression procedure done but than you had the cerebellar tonsillectomy procedure done.
tomhalil 1 year ago
The difference between the decompression and the cerebellar tonsillectomy is that the decompression is when the neurosurgeon shoves the tonsils on the cerebellum but up into your brain where they belong and then closes the area off with a synthetic plate to make sure the tonsils dont drop back down. The tonsillectomy is when the neurosurgeon actually cuts off the cerebellar tonsils. So, they no longer exist basically.
AsHleYBaBByy20 1 year ago
@AsHleYBaBByy20 May I ask who performed your surgery please. Cause people say doctors don't do cerebellar tonsillectomy procedure no more and that decompression procedure is better. I don't know what to believe. Isn't the cerebellar tonsils important to our brain/body? How long has it been since your surgery and how are you feeling now, do you still have symptoms.
Most importantly which procedure would you suggest to people: decompression or cerebellar tonsillectomy?
tomhalil 1 year ago
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they have been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
I m hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
tharilyn 1 year ago
This has been flagged as spam show
@tomhalil From what research I have done the tonsils are actually non functioning due to the pressure they've been under...consider brain injuries where pressure or blunt trauma has occurred...that portion of the brain kinda dies... so what she is saying makes sense. I had my surgery in 09 then followed that up with a head on car wreck...symptoms are back :(
I m hoping too find a doc willing to discuss tonsillectomy with me...it just makes sense. Remove the blockage...remove the pressure :)
tharilyn 1 year ago
@AsHleYBaBByy20
Having a cerebellar tonsillectomy is not performed anymore as it is a risky procedure and creates more problems.
mitch19636 1 year ago
@tomhalil I had both procedures done in a surgery that was only suppost to take 6 hours, but ended up taking almost 12.
bherbie1121 1 year ago
I would like to see the final product on the shirt! I too am a chiari sufferer to which I have no gotten my decompression surgery yet. Kudos to your recovery and live pain free!
HawaiiIceMan 1 year ago
id love a shirt
adamazing1 1 year ago
@adamazing1 there on their way =D I have to get with a printing company and I am actually working with a cartoonist right now on the t-shirts. They'll be here soon.
-Ash
AsHleYBaBByy20 1 year ago 2
Seeing this makes me see how lucky I am to only have type 1 I didn't even know I had it the doctor came upon it when I had an MRI of my head only minor no surgery thank you for sharing your story it made me so thankful for not needing another surgery
macangel91 1 year ago
update: Chiari survivor t-shirts are underway!
AsHleYBaBByy20 1 year ago
Did you make the t-shirts?? I want one. I'm a survivor
Hilaryisweird 1 year ago
hi i am 13 years old i have recenlty been diagnosed with arnjold chiari malformation me my sister my cousin and mom have the same condition i will have surgery in the next 2 weeks and me and my mom are starting a campaign.
brandonmbush8 1 year ago
I am also a fighter with arnold chiari malformation i had sergery when i was five i am now 25 and still suffer with this i dont know if it is normal to still have problems. I know that there is no cure to chiari malformation. thank you for posting this viedo you are an insperation.
evalena24 1 year ago
@evalena24 you will still have some headaches but not as bad as you did before but if you still feel the same you should talk to your doctor
brandonmbush8 1 year ago
Actually Chiari malformations are common. But most people dont have any symptoms, so they are found accidentally and surgery is not needed becasue it isnt causing any problems.
Iamsam795 2 years ago
I've heard the opposite. A lot of people do have a symptom or all of them and that it causes no problems for a few amount.
AsHleYBaBByy20 1 year ago
@AsHleYBaBByy20 MMMMPHA!!!!!!!!!
jimmy2k4o 10 months ago
I must be the luckiest guy around,I had my surgery in 95 and my life has been great since,I jog,do muay thai and the gym,think positve,I wish everyone the best I hope you guys can be as lucky as I was!
SUPERBAD007NL 2 years ago
I was diagnosed with ACM in 2005 & have had 3 surgeries since that time. I appreciate that it will never completely go away but it is frustrating, could be worse though, I am alive & have 2 great kids :)
Good video, great scar at the end, got one of them too!
Didn't realise there was so much about ACM on here, willlook at some more when I get the chance
To all who are awaiting treatment, you will be fine, it's a long road but you will get over it all :)
widemouthedfrog1 2 years ago
widemouthedfrog1 I am Brazilian forgives not to know to write in English. but I discovered chiari in examination for reason of an ear pain and average loss of the hearing. what I have made at the moment and to believe god yehoshua (Jesus) believing that it to know optimum for me believes in the reversion of the problem
msamarcio 1 year ago
is there any instance of a type 1 with mild-moderate symptoms getting a lot worse over time???
jimmy2k4o 2 years ago
Yes, there is a good chance it will get a lot worse over time. If it does not, your lucky. Ask for medication if you need to to keep the pain away but if you notice that everything seems to get worse then I would start thinking about surgery.
AsHleYBaBByy20 2 years ago
a would love to get the surgery just in case but like u say so few doctors will perform a it it will be damn near impossible here i live in scotland and the U.S is more the place with all the kl equipment and techniquies of doctors
jimmy2k4o 2 years ago
@jimmy2k4o
I have had 3 lots of surgery for ACM, all performed in Liverpool (Walton Centre)
widemouthedfrog1 2 years ago
@widemouthedfrog1 thanx didnt know that al look into that is it a out paitent prosidure or will it be covered by the NHS do you know?
jimmy2k4o 2 years ago
none of the types are completely treatable....at least not yet....just saying....because I have talked to so many people that have had surgery, and multiple surgeries at that and still have symptoms bad enough that it alters their lives.
xilessthan3ux3 2 years ago
Yes none of the types are treatable, you are correct. That is why I have had multiple surgeries and my problem is still on going after I just had my third surgery. It's devastating to know that you can not be fully treated and the surgery will not work.
AsHleYBaBByy20 2 years ago
No that is not a type of Chiari Malformation. Syringomyelia comes with the Chiari Malformation if the malformation is bad. Try not to be nervous, I know that's easier said then done but it helps not being nervous. Tell me how you made out.
-Ash
AsHleYBaBByy20 2 years ago
Hi my name is James. I'm 38 and have had 2 surgeries for ACM myself. Plus the Syringo Myelia. After my surgeries one in 1995 and one in 1996, I had some relief. However the symptoms are slowly coming back. Hang in there and be strong!!!
hudsey1114 2 years ago
Im sorry James =( If it gets bad though, you should see a neurologist again. I will =)
Ash
AsHleYBaBByy20 2 years ago
hey girl! your so brave haha i get creeped out just seeing your surgery pics i was diagnosed with chiari 1 at the end of december 09-january 2010 but they said since my pain isnt keeping me from everyday life and my balance is normal that they are just going to watch mine (i also still have some csf flow) so im hoping when i enter college in 2 years it doesnt interfere but this video helped me alot thanks :)
gwisbck 2 years ago
Your very welcome =D
AsHleYBaBByy20 2 years ago
@gwisbck i'm in the exact same situation as you except i was diagnosed bac in 07 and am finding the headaches and heck pain manageable but and balence and eyesight are ok at the moment but have you ever notice an abnormal walk cause i got that and on one of the websites they say that's a possible symptom
jimmy2k4o 2 years ago
not really...my balance/walking is kind of perfect...i am in marching band and i have to walk perfect straight lines and marches backwards on my tip toes alot and i do fine
gwisbck 1 year ago
Thanks for the video and for all the information being posted...i got diagnosed about 2 months ago, and now have my decompression surgery coming up in 2 days (Jan 29th) . Im pretty nervous about it and am wondering how long after the surgery until i start feeling some relief of the symptoms caused by the syringomyelia.
rjsteel74 2 years ago
I had relief 1 week after surgery. But I am also a very fast healer so it shouldn't be long after your surgery. If you do not get relief at all... that's not a good sign. Good luck! You'll be fine =D
AsHleYBaBByy20 2 years ago
my boyfriend has chiari 1. he had surgery when he was in 8th grade and doesnt have anymore problems, that i know of. i'm so glad that his doctors were able to diognose it and fix it. i'm behind everyone who has it and you all have my love and support. god bless
HPomichter14 2 years ago
So my name is Felisha and im 14. I have chiari 1 and i got my surgery on november 19, 2008 and im still having problems. I will probally never feel the left side of my head again, Anyone with the same problem?
FelishaXCatastrophe 2 years ago
Yes, I have the same problem and I am pretty sure a lot of people that have had this type of brain surgery, or any brain surgery for that matter have the same problem. I can't feel the entire middle of my head, I have no feeling there at all anymore. I still have problems and so do a lot of people. The surgery is a win or lose situation. Doctors can tell you, "this is the only surgery you need and no more problems", but, that's not true. It's either the surgery works or it doesn't.
AsHleYBaBByy20 2 years ago
Hey Viper I had my surgery in April 2002, went back 2 work 4 5 yrs. became very symptomatic again. I would really like talking with u. I'll gice u a buzz.
SBflogirl 2 years ago
its really important to me that i find out who has been diagnosed or who is being diagnosed and who has had the surgery done so i can get in touch with people so i can get questions and support and comfort by people. please call: 207-549-5199
TheViperkid22 2 years ago
doc says there are no signs of syringomyelia, with that they conclude the symptoms are not related to Chiari.. Could this be true??
varunula 2 years ago
no it could not be true at all if u have any signs of chiari it means u have it. don't trust doctors they hardly know about this disease at all i promise u. please call me and i'll chat and tell u everything u need to know about this disease and the signs
TheViperkid22 2 years ago
no that's not true! you can have chiari without having syringomyelia. i would get another opinion.
AsHleYBaBByy20 2 years ago
met another doc too .. the chiari is obviously there .. doctors don't disagree on that.. but they say it's(chiari's) effect on nerves are minimal.. and says formation of syringomeylia means its not serious... they say that they can do a decompression surgery but would recommend to stay on pills..
varunula 2 years ago
if anybody is comfortable with talking on the phone about this disease please contact me i could use some great advice and support and i can give u my story of my surgery.
TheViperkid22 2 years ago
hope you feel better.
SpeedVideoz 2 years ago
after seeing the MRI the first doc we met said that he would recommend going for a surgery. n as we have in mind to have another child the doc said he wouldn't recommend getting preg before surgery. But the next doc we met yesterday said he would not recommend surgery cause there was no sign of syringomyelia. He said it is better to take pain killers and some to strengthen the nerves. He also said ok to getting preg. Now I'm pretty CONFUSED. Still I will have a 3rd opinion this Monday.
varunula 2 years ago
hey believe me the doctors and neuro surgeons and neurologists and specialty teams hardly know about this disease since its very very rare and i had the surgery on may 20,2009 and i am still having complications and issues
TheViperkid22 2 years ago
my mum has had the chiari malformation surgery and even though they say it is not hereditary i do not believe them because now i have one too. i might have to have surgery but we will not know until next month. the only effects it has on me is headaches and dizziness
alienpotatoes 2 years ago
They say it can be, they shouldn't be saying it's not passed down. My neurosurgeon said that they are not sure if it is hereditary but they do know for sure that you are born with it. It is a birth defect and it starts to manifest around the ages of early teens. My neurosurgeon did say it possibly could be hereditary but they are not sure. It's a possibility. So don't listen to that lol.
Good luck =)
Keep in touch.
-Ash
AsHleYBaBByy20 2 years ago
Forgot to mention, sometimes babies suffer from this condition and they need surgery right away. Sometimes like I said, it doesn't start to cause problems until early teens. That is the most common time they say. It can start causing problems any other time but it's like 80% start in early teens. That's when mine started but they think I have the condition because my father was in Vietnam and he was exposed to "agent orange" they were supposed to be healed from it, but he never got treatment
AsHleYBaBByy20 2 years ago
hey,
i had all signs as a little children and not a single doctor took the time to check it out then. i was diagnosed on april 10,2009 the day of my 22nd birthday. i had emergency surgery on may 20,2009 and it supposidly was successfull what i joke it wasn't i ended up spending my whole summer in the hospital with managise three times and a sever infection at the surgical site
TheViperkid22 2 years ago
what do u mean by "buzzing back the tonsils and then patching the cerebellum"? Do u mean folding the tonsils or cutting them off?
varunula 2 years ago
They cut them off. Patching the cerebellum means to put a synthetic plate there to keep the fluid from being so tight in there, like there won't be so much pressure. Didn't I not say that? Actually watch the video, and ask your doctor about this. You'll probably actually know about this condition if you do ask the Dr.
AsHleYBaBByy20 2 years ago
sorry for being so immature on this.. the problem is that there are no doctors around where i live who knows this problem. the cutting of part is really scary. but im glad your doing fine. and thank you for keeping posted.. you are an angel.
varunula 2 years ago
It's ok, I thought you were messing with me. Your best bet is to go to NYC because they have the Chiari Institute there and they are awesome. They know everything about this condition, they are up on everything. Yes the cutting off part is very scary but rarely anyone has a problem from them being cut off. Thank you =)
Your welcome =) Keep in touch
AsHleYBaBByy20 2 years ago
sometimes medicine makes the pain and generally other symptoms go away.. this worked like for 8 months.. and returned again.. does anyone had this fixed by medicin??
the MRI done in different six months period showed no formation of syringomyelia... so then it is safe to do away with medicine without doing the surgery? isn't it?
varunula 2 years ago
idk what your last question means. are you saying its better to do the medication and not surgery? People who actually have this condition that are suffering bad... need surgery... therefore, idk what your talking about. people who do not have this condition the bad way they don't always need surgery... but your symptoms went away? then its not chiari man. i was told your symptoms will never GO AWAY they will be PREVENTED from hurting more or getting worse and even decreasing the pain completly.
AsHleYBaBByy20 2 years ago
but they will never get fixed ever. This condition CAN NOT be fixed in any way. They can keep you from having headaches all the time. you dont have chiari? im tired of people saying this stuff can be fixed when it CAN'T
AsHleYBaBByy20 2 years ago
hi all... im also suffering from arnold chiari maliformation type 1..... i just want ask is the operation is the only solution for this...thanx
sharoxeel 2 years ago
For one, there is no solution to this. Having the surgery just prevents you from dying or from getting worse. The surgery is the best way to go if you are really really suffering from this condition. If you are not, your doctors will probably want to put you on medication to keep the headaches from being so often and so painful.
AsHleYBaBByy20 2 years ago
Thank you so much for posting this! My daughter is 13 and was diagnosed today. We have an appointment to meet with the neurosurgeon Dec. 3. I don't know what level she has, only that she has been enduring severe head pain for almost a month now. I wish you all the best with your recovery. I'll be watching for the shirts!!
jackhamma401 2 years ago
Your welcome! =)
I wish you all the best with your daughter, let me know what level she is. I wish you luck!
Shirts are still being worked on but they will happen =)
-Ash
AsHleYBaBByy20 2 years ago
Ipchelvis: I had the surgery 7 years ago. Am nearing 40 now. No side affects and have made, (I'm told) a textbook recovery. I wish you good luck!
pparisou 2 years ago
That is so awesome, I am very happy for you =)
Thank you so much.
-Ash
AsHleYBaBByy20 2 years ago
hey everybody i really enjoy that so much peopel alive the syndrom (im really sorry for my bad english^^hope you can understand me with all that bad english^^) i have arnold chiari syndrom too and im 19 im still afraid of the operation i think because i dont know very much about it anyways i hope all of you doin well and nice idea (the t-shirts) i would buy one if i could get it in germany^^
oh and thnx for the vid
lpchelvis 2 years ago
I would definitely send you the t-shirts =D
I know the operation can be very scary. You just need to think in the way that you will be much better afterwards. Always think positive if you can, I know it is very hard. Try watching other videos as well, that may help you more. Ask a neurologist too and if you have a neurosurgeon ask him/her too.
Hope you are doing well =)
-Ash
AsHleYBaBByy20 2 years ago
wow that would be cool =D cant wait to have one :-P and im not that scared of the operation i only think to negativ ^^
lpchelvis 2 years ago
Lol well don't think too negative. You'll drive yourself crazy, I did lol.
=D
AsHleYBaBByy20 2 years ago
lol i know i realized it 1 or 2 years ago but i cant think postiv all the time im a negative guy ^^
lpchelvis 2 years ago
Hey....i went to the neurologist in town for like almost a year he gave me all this medicine for my problems but nothing worked. So he gave up. I have been looking into this malformation and im pretty sure i have it. What was your symptoms? I have been told i cant have it because my parents dont but im not sure that is correct. If you could help me I would really appreciate it. Thanks for reading, Bre
pokadotmoose82 2 years ago
My parents do not have Chiari, but i do. It is not always caused at birth, nor does it have to be heriditary. Your best bet would be to go to a Neuroligist who specializes in Chiari to get some real answers. There are lots of good websights that are a big help in finding a doct in your area. My symptoms are alot of things. Mostly a burning type pain in my upper back and neck area. A feeling like my muscles are very week and waisting away.
twohassles43 2 years ago
It can be passed down or it could be from an accident, like, a big fall or a car accident could have started it. My neurologist believes mine was caused by Agent Orange. That is the chemical they used in Vietnam to kill the trees and plants to make room. My father was in the Vietnam and was exposed to this chemical constantly. When the vets came home they were supposed to get treatment for this but my father never got it. Therefore, doctors strongly believe this is the cause of mine.
AsHleYBaBByy20 2 years ago
I am 22 years old. I have hydrocephalus with no signs of a malfunction since birth. I also had an encephalocele at birth which may have caused the hydrocephalus. I recently (in the past 5 years) discovered I had Arnold-Chiari Malformation. I don't know if I will need a surgery but I now know there is one more thing wrong with me. Life sucks!
shellybellie132 2 years ago
I'm sorry =( that is terrible...
Having this condition sucks and it is hard to live with it. Find out more information about this if you can. Hope you are feeling good.
-Ash
AsHleYBaBByy20 2 years ago
The is a terrible disorder the pain is horrible. I think i took having two kids alot easier than this pain. I cannot wait to have my surgery here is two weeks its nice to see people out that doing this type of videos. People need to know more about it.
pebbles2125 2 years ago
I hope your surgery is a success. Your in my thoughts..please let us know how it all goes.
twohassles43 2 years ago
Lol. I can understand that. I hope you are doing well and let me know how recovery is doing =)
I agree, people need to know much more about this condition. I will spread the word as much as I can ^_^
-Ash
AsHleYBaBByy20 2 years ago
Love your video. Thanks for getting the word out there.
twohassles43 2 years ago
no problem =)
AsHleYBaBByy20 2 years ago
I finally got to go see a chiari specialist in Mi Wi. They told me i have moderate Chiari but it does not fit criteria for surgery. I am happy to know FOR SURE why i have all the issues i have in my upper back and neck, but now i feel STUCK!! Any Extension at all of my neck causes me so much pain that somedays it could drive me crazy. I am not sure what to do to learn to tolerate this, since i am not a canadate for surgery to repair my chiari. Suggestions?
twohassles43 2 years ago
Try going to neurologist and they can prescribe a combination of medication to give to you to keep the headaches at bay. Try asking about it.
-Ash
AsHleYBaBByy20 2 years ago
Thanks so much for replying. I am meds from seeing a doct at the pain clinic. They have me on some pretty heavy duty pain meds, but i still have daily pain. I guess i have to figure out a way to live with it, and be thankful that i do have meds that make the pain more tolerable. I hope your teeshirt idea works out for you. There is so many wonderful people out there with Chiari who truly understand each other, and want to do what they can to help each other. Thank God for those people.
twohassles43 2 years ago
Hi all,
I would luv a Chiari survivor T-shirt. I am having a decompression surgery in Dec so not a survivor yet.. but would be good to help raise awareness of the condition.
Thnx AsHleYBaBByy20 you have provided me with some questions to ask my neurosurgeon before going ahead with surgery
kitzammit 2 years ago
I am currently working on the sketches, I just need funding for the project. So when I start my new job, I'll be making 35$/hour so I will be able to have them printed and sent to all of you.
-Ash
AsHleYBaBByy20 2 years ago
im yet another ACM sufferer but unlike you, i was told i wasnt allowed surgery of any kind to fix it, the headaches and numbness you talked about are something i experience every single day and YES Arnold Chiari Malformation SUCKS!!!!!!!!!!!!!
BubblyKelsB 2 years ago
I Think The T-Shirt Idea Is Great
bherbie1121 2 years ago
thank you =)
AsHleYBaBByy20 2 years ago
Im so sorry =(
Well, I'm here to talk about whatever it is you want to talk about. And yes, it does suck big time... lol.
-Ash
AsHleYBaBByy20 2 years ago
I Had My Decompression Surgery The 7th Of June, And While They Were At It, They Did A Tonsillectomy. I Am Still Expericing Some Of The Most Intense Headaches I Have Ever Had, Along With A Host Of New Symptoms. What Gives?
bherbie1121 2 years ago
Well, your probably the 5% of tonsillectomy people that the symptoms come back. You might need something more than that, like a shunt. Ask your doctor.
-Ash
AsHleYBaBByy20 2 years ago
Hey Ashley. I was just diagnosed this past week. I went to my GP two weeks ago after experiencing the most intense headaches of my life. She referred me to a neurologist, who sent me in for MRIs - she was looking for a tumor and instead discovered Chiari. My herniation is at 1 cm. I meet with a neurosurgeon on Thurs. I've read a lot about the decompression surgery, but I your vid is the first I've seen about a tonsillectomy. Thanks for posting this. Now I have a new question for my neurosurgeon.
folksmith 2 years ago
Welcome =)
AsHleYBaBByy20 2 years ago
Hi Ashley, my name is erin my husband was diagnosed last week after years of not knowing and dealing w/symtpms, he has alot of pressure and passes out alot. my ? 2 u is would having the tonsillectomy 1st solve the problem or does he have to get a decompression 1st? Im still researching..we will b having a 2nd opinion next FRI. THANKS
soloyo104 2 years ago
Hello. Well, I was told by my current neurosurgeon that if I had the tonsillectomy first I wouldn't have had the other two and I wouldn't have been back there so many times. I honestly do not know for sure. I have no way of contacting my older neurosurgeon and asking him questions. I guess I would go on what my current neurosurgeon says and I would look into having it first, not the decompression. I would get many opinions too!
-Ash
AsHleYBaBByy20 2 years ago
I keep getting personal messages asking if I am German. Yes, I have 100% German. Germans are known for blue eyes(me) and blonde hair, which I do not have anymore only because it changed to brown. But yes, lol. I have the pure white skin and my whole family has blue eyes, except my mom, shes got brown. I am German ^_^
Just wanted to say that. A lot of people ask me, lol. Anyways on with Chiari commenting! ^_^
AsHleYBaBByy20 2 years ago
I Had A Sub-Occipital Decompression Surgery For Arnold Chiari Malformation Type 2, And At The Same Time A Chiari Tosillectomy, And This Was The 7th Of June. I Am Still In EXtream Pain, And Now They Tell Me I Have Cerebral Spinal Fluid Building Up... What Gives?
bherbie1121 2 years ago
The condition sucks! Hence the name ^_^
I'm sorry though =(
AsHleYBaBByy20 2 years ago
So your telling me you had a Tonsillectomy and now your like completly like symptom free?? When was your first surgery done?
MirandyW 2 years ago
Yeah pretty much. Not the throat tonsillectomy. The Chiari tonsillectomy. People mix those up lol. The first surgery I had was a decompression and that was in March of 2005. Second surgery was a re-do and that was in March of 2007. Then my third surgery and most resent was done on Feb 13th 2009. The third surgery was the Chiari Tonsillectomy. I am completely pain free from the surgery. I just have to deal with my back and neck from the car accident in May of 2009 right after my surgery basically
AsHleYBaBByy20 2 years ago
LOL yeah I am pretty sure its not the throat tonsillectomy.. I have ACM 1.. had decompression surgery in May of 1997, 12 years post op and trust me what I have read and seen, things have come a LONG way since my surgery, I can remember my mom givng the docs permission to take my case to conferences.. I am still learning to this day about ACM..
MirandyW 2 years ago
My daughter needs Chiari surgery. We are having difficulty finding a neurosurgeon who will do a tonsillectomy. They all want to do just the decompression. Who was your neurosurgeon or can you suggest someone? Please help.
impy7 2 years ago
I am terrified of my kitchen and kids in the kitchen while I cook. I have burned myself and dropped knives so frequently that I now keep my kids out of the kitchen while I cook. I also take my time. The more I rush, the more I drop things. I have only had one incidence of falling, in high school that we contributed to stress then. Though, I have tripped repeatedly and still do. I think knowing is half the battle when it is not severe enough to lower your standard of living.
moonharehayashi 2 years ago
=( I'm sorry about that. Well i mean I think I would still have the surgery even if my headaches were not severe. Just to get rid of all the other annoying symptoms. But I understand what your saying.
-Ash
AsHleYBaBByy20 2 years ago
The reason I opted out of the surgery for now, was that it's not severe in my case. It's not everyday that I deal with the headaches or the other problems. I do check up on it once a year, but controlling my allergies almost completely stops symptoms. I don't think I would have opted out if the headaches were more severe that it stopped my level of living comfort. I am having my yearly in a few weeks to see if the herniation is worse as my symptoms have gotten more noticeable in recent weeks.
moonharehayashi 2 years ago
Oh ok. I gotcha =)
AsHleYBaBByy20 2 years ago
Thank you for this video. I am diagnosed with CM1, though mild. I still have all the symptoms, just not as frequently.
Headaches are the worst, sometimes in clusters for days, then I'll be fine for weeks. The blurry vision, little ticks that come and go depending on how bad my head is hurting, and numbness in the hands that causes me to drop things often. I am 34 now, and did not opt for surgery.
moonharehayashi 2 years ago
I drop a lot of stuff too. It's very annoying. I prep and cook... so... yeah I dropped things frequently now. I actually drop entirely once in a while. My legs just let go and I have to drop down and chill for a minute.
OneL1feOneLove 2 years ago
hello, can you tell me more about ur symptoms please i would really appreciate it thanks.
foxleyleon 2 years ago
I started having numb patches of skin, in my hands and feet and back, also a headache that never went away. It was never severe, just a dull throb all the time. We thought I had MS and went to a neurologist that did a host of tests. It was the MRI that caught it. It's not big, only a few centimeters, but the herniation varies if I have sinus trouble, which I do all the time thanks to allergies. The most common symptoms I have during an attack is the weakness and numbing of my hands and headache.
moonharehayashi 2 years ago
Your welcome =D
Just trying to get it out there. People ignore the symptoms like the headaches thinking it's due to stress. Well, I think people should really think twice about that if they suffer from these symptoms.
-Ash
AsHleYBaBByy20 2 years ago
your.brave...
lisAsaysTISsexxy 2 years ago
Yeah migraines is a big things with this condition because it all has to do with the pressure and blockage of CSF. Well and to find out about the cancer all you'd need is a blood test.
AsHleYBaBByy20 2 years ago
Yeah my diagnosis a year ago explained a lot. Everyone thought I was a hypochondriac. I've been thinking about "thinking about" the surgery lately. I have a LOT of pain all the times. I take Lyrica. Helps a little. But I have so many randoms things going on b/c of this thing. I'm down about it right now. I'd almost rather have just the pain and not the pressure. I follow up in a month. Probably going to get another MRI and check up on the spine too. I suffer through work lately. Idk.
OneL1feOneLove 2 years ago
This type of pain is bad though =( Not meant to be deal with at all.
AsHleYBaBByy20 2 years ago
Yeah and I go back and forth about it. I'll have a decent day once in a while and think "well maybe I can just deal with it"... but the next day I can't function very well. And I can't tell what comes from what. I mean, if something else were wrong, I don't know that I would be able to tell. Some people at work are responding differently to me right now and I don't like it. They don't know what this is. They don't understand. And they never will.
OneL1feOneLove 2 years ago
Yeah about the not understanding part... I just had an incident this morning at my college when I went for class. The professor asked me, "So you had brain surgery?" (In my medical records). I reply. He then says, "But, it doesn't hurt right? Like how bad could it be? It's just brain surger." I went ape shit on that fag. OMG! I get so pissed when someone tells me, "brain surgery doesnt hurt". Hello?! Have you ever had it?! No? Then shut your fucking mouth!!!
Sorry about the language, lol.
-Ash
AsHleYBaBByy20 2 years ago
tell me what kind of pain is it . does it feel like ur brain stem is burning perhaps?
foxleyleon 2 years ago
Well, for me it feels like throbbing pain. Like you have no room in your brain and it's about to explode. No lie.
I don't know about the burning pain. Anyone else have that?
-Ash
AsHleYBaBByy20 2 years ago
Both my mom and I have Chiari. She'd had two decompression's and multiple other surgeries. I've been lucky and only had to have a tethering of my tethered cord, and that seems to have helped a lot.
desumAylisa3 2 years ago
What's tethered cord?
AsHleYBaBByy20 2 years ago
holy shiat
yourboyJRfly 2 years ago