Discussions By Condition: Brain conditions

Chiari Type 1 Malformation.

Posted In: Brain conditions 18 Replies
  • Posted By: Anonymous
  • August 23, 2007
  • 09:38 PM

Is there anyone who has this? I was diagnosed about 2 years ago. Some docs tell me it's serious. And some say not so much. the info i find on it is scary. Any experience with it would be helpful.
Sam

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18 Replies:

  • I have Chiari 1 Malformation and was diagnosed with a 4mm syrinx. I am almost a year post op from the Posterior Fossa Decompression surgery. Feel free to contact me at lissa68_2003@yahoo.com I can tell you more about it
    tonynmelissa2002 3 Replies
    • September 6, 2007
    • 10:29 PM
    • 0
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  • My MRI results from 02, 03, and 06 all show Chiari (1-1.2 cm), no visible syrynx. No doctors have ever pursued it as the cause of the symptoms that have plagued me for years - headaches, neck and shoulder pain, dizziness, brain-fog, choking, falling, blurry vision, chest pain, many more. I recently found my copy of the MRI results and looked it up online - discovering the correlation! I brought it to my doctor's attention and she didn't seem to think it was related. She has been treating me for depression for over a year. How is your treatment going? What can I expect from here?
    dmelissa13 4 Replies
    • December 1, 2007
    • 08:00 PM
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  • Where exactly are you located. Seems to me you need to see somebody who has some experience with CM and SM. My doctors played for 2 years with mine telling me it was migraines and eventully that I needed to make lifestyle changes and learn to deal with the pain. Thats bull and we both now it. And it does not matter how much of a herniation there is, even small herniations give great pain. Here are some Chiari docs, mine is on the list Dr. Menezes from Iowa City, IA. http://www.chiariconnectioninternational.com/doctorlist.html Push that doc of yours to send you on. If they don't know about CM tell them you want to see a specia;ist in the area that you would rather not take chances with a doc who thinks they can diagnose this when they are not properly trained. Be a ****h you have to be for your own health Melissa
    tonynmelissa2002 3 Replies
    • December 2, 2007
    • 02:45 PM
    • 0
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  • Hi Melissa :cool: ! I am in San Antonio, Texas. I will look at the list. Thank you for your encouragement and advice. I have long been disappointed with my neurologist. Missing the CM on the MRI is the last straw! I will ask my PCP to refer me to a specialist to replace him. I am also concerned about losing my job - headaches, brain fog, and blurry vision have made me slow at my "thinking" job for a long time and boss is fed up (rightfully so! I am too!). I wonder if it would help to tell him that I might finally have an answer and it includes brain surgery but I'll be better at my job when it is over? Surgery doesn't scare me - the frustration of fighting these symptoms, dealing with my job, and defending myself to doctors is WAY worse! Melissa
    dmelissa13 4 Replies
    • December 2, 2007
    • 09:36 PM
    • 0
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  • Good for you. Get sent on, it was the best pushing I did with my family doc too, and honestly, the surgery does make a huge difference. Let your boss know that. Check out this website, these people have been a godsend to me about CM and SM. www.asap.org. There is tons of info and a ton of very knowledgable people on there. Most of the good docs are associated with that website, my doc is. Keep me updated and please feel free to email me or whatever if you want or need to. Push to get sent to someone that knows about this and will help instead of telling you its in your head, even though it actually is in our head, but not the same way. Take Care, Melissa:)
    tonynmelissa2002 3 Replies
    • December 3, 2007
    • 05:09 AM
    • 0
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  • Hery Melissa didnt kno0w this board exisited . I have always wondered why they call chiari a brain disorder cause actully its your skull crowding things and when you have surgery they remove bone not brian. ;)
    razzle 6 Replies
    • February 6, 2008
    • 08:55 PM
    • 0
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  • I also, I Chiari Type 1 Malformation. I was diagnosed only a few months ago and I am (as the doctors say) "One of the youngest but yet more serve cases" they have ever seen. { FYI I am 12 years of age} Many doctors insist that I have the surgery immediately. Others say that it is no big deal. We decided to put a hold on the surgery for a bit. But as each day passes, my disease becomes worse. I also have been diagnosed with Sleep Apnea, Chronic Daily Migraines, etc. I have been wrongfully accused of having Bi-Polar Disorder various times. Some of my doctors didn't believe I was telling the truth about my disease. Also, my previous doctors believed that I suffered from depression and that i was OCD. Which was preposterous because I havent showed any symptoms. So On That Last Note, Doctors From Yale Suck(: hahaahTale Care(:Jessica
    Anonymous 42789 Replies Flag this Response
  • No. 1 you have to find a dr. that specializes in this . you may have to travel to get one . come to www.asap.org and join us . great support
    razzle5150 1 Replies Flag this Response
  • my husband has chiari 1 malformation, hes long into the condition, he found out 14 years ago at the age of 36,a few months later he had open brain surgery for the brain stem and a shunt placed in his neck, about six months after that he had to go back in and have a shunt put in his spine, he has a total spinal cord syrinx and cord atrophy as well as scoliosis of the lower back and a fewherniations of the dic in his neck,he now has syringomyelia because of this condition,when they did his second surgey at the age of 37 they also removed a small part of the upper spine to put the shunt in, I guess because he has a hollow caviety in the spine and the fluid was draining into it causing the syrinx,he is now 50 and had lived at pain management for most of his life and now after all this man has been through ,doc thinks the shunts have stopped working,he now cant lift his left arm at all,the muscle in that arm is completely gone and can only walk at the most 100 feet when his back starts to hurt him, we are for the second time now filing for disabilty for him,there is no way he could work, and ya know the funny thing,after his first surgery, the doc said he would be almost 80% better,not true, any of you have anything you want to add or advice I would love to hear it,its been so hard as his wife to watch him go throug this and his children at well,I just pray that now after so many years they have better ways to help with this condition, his doc who did the surgey died in an airplain crash 6 years ago and he now see's a person who took over for that doc,thanks for listening
    booluvschoco 1 Replies
    • September 12, 2008
    • 08:31 PM
    • 0
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  • I also, I Chiari Type 1 Malformation. I was diagnosed only a few months ago and I am (as the doctors say) "One of the youngest but yet more serve cases" they have ever seen. { FYI I am 12 years of age} Many doctors insist that I have the surgery immediately. Others say that it is no big deal. We decided to put a hold on the surgery for a bit. But as each day passes, my disease becomes worse. I also have been diagnosed with Sleep Apnea, Chronic Daily Migraines, etc. I have been wrongfully accused of having Bi-Polar Disorder various times. Some of my doctors didn't believe I was telling the truth about my disease. Also, my previous doctors believed that I suffered from depression and that i was OCD. Which was preposterous because I havent showed any symptoms. So On That Last Note, Doctors From Yale Suck(: hahaah Tale Care(:Jessica Jessica, My 15 yr old daughter had a similar problem with doctors disbelieving her. I'm told by her Chiari nurse that this is especially common in young women/girls - and such a shame! Are we seriously still listening to the 'hysterical female' line even though we're in the 20th century? Unbelieveable!!:mad: Anyway, my daughter had surgery at the age of 9 (2002) and may have to have further surgery some time soon. I realise that resources and help for teenagers is limited and I'm sure she'd be happy to chat if you need some support. She also had sleep apnoea (esp as a baby and back then it was me - the mother!- they didnt believe!) and has very bad daily migraines too. Let me know if you'd like a chat:) Melissa's (& Abbies!) mum x
    abbiesmum 24 Replies
    • October 20, 2008
    • 09:06 AM
    • 0
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  • To all that this disease has affected.... May God help you all. My 2 year old son was just diagnosed with this disease today. We are waiting to hear from his neurologist to make an appointment to get the final results from his MRI. My son's pediatritionist was very good and took appropriate steps. Unfortunatly, like a couple of you, his first diagnose from the first neurologist, I didn't care for her, stated that he just had a speech problem. So we had to go to speech theropy and they said he was fine. Luckily that quack Dr is leaving and we are getting a new one. Sounds like those that had surgery ended up worse off than before :( I am scared senseless on what to do for my son....any advise, PLEASE?
    Anonymous 42789 Replies
    • November 19, 2008
    • 03:55 AM
    • 0
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  • To all that this disease has affected.... May God help you all. My 2 year old son was just diagnosed with this disease today. We are waiting to hear from his neurologist to make an appointment to get the final results from his MRI. My son's pediatritionist was very good and took appropriate steps. Unfortunatly, like a couple of you, his first diagnose from the first neurologist, I didn't care for her, stated that he just had a speech problem. So we had to go to speech theropy and they said he was fine. Luckily that quack Dr is leaving and we are getting a new one. Sounds like those that had surgery ended up worse off than before :( I am scared senseless on what to do for my son....any advise, PLEASE? Please don't worry, that's the best advice I can give. My daughter had decompression surgery at the age of nine and is now a typical, active 15 yr old with no after effects whatsoever. She rollerblades, has recently done a bungee jump and absolutely loves scary roller-coasters. She has a boyfriend, a disgusting bedroom and a passion for spending my money like there's no tomorrow! Yes, she has problems.....minor in our opinion. She suffers from very bad migraine headaches, sometimes her balance isn't great in the morning and she has missed lots of school. But as far as we're concerned these are a small price to pay in comparisin to the pain and suffering she was experiencing. On the plus side, she remembers nothing about her surgery or the (pretty gruesome) aftermath since she was so young at the time. Please remember this if you have to go through watching your little boy have surgery. It's heartbreaking to stand by while everything is going on and have no control over the situation, but you're an adult and you've made the decision based on what's best for your child. I'd also say to use caution in reading Chiari sufferers experiences on some of the websites, particularly the American based ones. Whilst the experiences are posted with the best of intentions, some of the users post every single tiny symptom on a daily basis and it's difficult to determine which (if any) are appropriate to be reading with regards to your child's situation. Many of the parents on these sites have children who have multiple illnesses in addition to Chiari and most are not the 'norm'. My daughter was treated in the UK by a Canadian neurosurgeon (based in the UK) and everything was explained to her in a plain and simple manner, using language appropriate for a child of her age. Every question raised by the surgeon was initially directed to my daughter and then to us as parents. I'd advise finding a paediatrician who uses this kind of practice. I have very basic knowledge of the way in which the American healthcare system works, but I believe that if you are paying for insurance then you have a right to a paediatrician of your own personal choice. I'd be making sure I'd exercise this right if it was available to me. We have no such system here as all of our healthcare is free and paid for by taxes, and we were very fortunate in seeing the surgeon we did, but if we'd had any problem with her diagnosis or treatment we'd have asked for a 2nd opinion. Finally, please remember that many children, whether they've had surgery or not, live perfectly healthy, normal lives. I have a 15 yr old wardrobe raider as living breathing proof!:D If you need any further information then please just contact me.
    abbiesmum 24 Replies
    • November 20, 2008
    • 02:34 AM
    • 0
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  • Hello I have ben recently diagnose with chiari type I. i' traying to look up for information but is not very clear to me what thid is al about. If any of you have information please just pas it to me. I have 26 years and I was being treated for severe migrane and now its a whole new and dferent thing. Ihave some quetions like for example when you have headache doeas one of you eyes shuts down almost completly.Because that is what is appening to me with mi rigth eye. Is it realy necesary to undergo a surery if so s th recupareting process easy and fast? Please let me know Im desperate!!!!! THANKS!!:o:confused::)
    Emily Denise 1 Replies Flag this Response
  • To the person who wrote the Quote below; Be careful when you say "American based" sites because you are giving a bad name to all! I personally have a website where we try to promote wellness and positive thinking! Please try to be considerate of other peoples feelings! Thanks! ~CCCPlease don't worry, that's the best advice I can give. My daughter had decompression surgery at the age of nine and is now a typical, active 15 yr old with no after effects whatsoever. She rollerblades, has recently done a bungee jump and absolutely loves scary roller-coasters. She has a boyfriend, a disgusting bedroom and a passion for spending my money like there's no tomorrow! Yes, she has problems.....minor in our opinion. She suffers from very bad migraine headaches, sometimes her balance isn't great in the morning and she has missed lots of school. But as far as we're concerned these are a small price to pay in comparisin to the pain and suffering she was experiencing. On the plus side, she remembers nothing about her surgery or the (pretty gruesome) aftermath since she was so young at the time. Please remember this if you have to go through watching your little boy have surgery. It's heartbreaking to stand by while everything is going on and have no control over the situation, but you're an adult and you've made the decision based on what's best for your child. I'd also say to use caution in reading Chiari sufferers experiences on some of the websites, particularly the American based ones. Whilst the experiences are posted with the best of intentions, some of the users post every single tiny symptom on a daily basis and it's difficult to determine which (if any) are appropriate to be reading with regards to your child's situation. Many of the parents on these sites have children who have multiple illnesses in addition to Chiari and most are not the 'norm'. My daughter was treated in the UK by a Canadian neurosurgeon (based in the UK) and everything was explained to her in a plain and simple manner, using language appropriate for a child of her age. Every question raised by the surgeon was initially directed to my daughter and then to us as parents. I'd advise finding a paediatrician who uses this kind of practice. I have very basic knowledge of the way in which the American healthcare system works, but I believe that if you are paying for insurance then you have a right to a paediatrician of your own personal choice. I'd be making sure I'd exercise this right if it was available to me. We have no such system here as all of our healthcare is free and paid for by taxes, and we were very fortunate in seeing the surgeon we did, but if we'd had any problem with her diagnosis or treatment we'd have asked for a 2nd opinion. Finally, please remember that many children, whether they've had surgery or not, live perfectly healthy, normal lives. I have a 15 yr old wardrobe raider as living breathing proof!:D If you need any further information then please just contact me.
    Anonymous 42789 Replies Flag this Response
  • Hi, I am 36 yrs old and have been battling CM for the past several years. I was diagnosed with CM in 2004. I had the surgery done and have suffered since. I have recently been diagnosed again with it. This time I had 2 syrinx on my spine and hydrocephulus. I had lost a major part of my left side. They said I had the brain of an 80 yr old. The doctor that did the surgery would not do anything he said there was nothing medical they could do for me at this time. I ended up having to go to the Chiari Institute in New York. that is where I found out all this stuff. They had told me that if something was not done then within the next 2 months I would be and 80 yr old at the age of 36. I had the surgery June 26th. It has only been a couple weeks. But I feel better than I have in years. If you would like to contact me feel free. my email is shellntim18@yahoo.com. please email me wit an questions. If I can help anyone suffering with this painful and debilitating disease I would be happy.
    shellntim 1 Replies Flag this Response
  • I, and my three children, have Chiari Malformation and Related Conditions. This condition is difficult to diagnose and sometimes more difficult for local doctors to understand the myriad of Chiari related symptoms. Best advice ... Research the research and listen to your instincts ... They'll never steer you wrong! If you want to talk to someone who's dealt with Chiari for many, many years, email me at Nicole@chiariansunite.org.In the spirit of paying it forward,Nicole
    Anonymous 42789 Replies Flag this Response
  • Hi Everyone,I was just diagnosed with Chiari one, After recieving my MRI results they rushed my surgery, but I havent recieved any information on excatly what It is, does anyone know of a flyer or anything I can find online? I am booked for surgery in the near future
    Anonymous 42789 Replies
    • August 26, 2009
    • 02:25 AM
    • 0
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  • Please post more successful stories. My 9 year old is having the surgery next month and his parents are so scared. Minor and rare symptoms and he is very active. Please tell me more of your success.Please don't worry, that's the best advice I can give. My daughter had decompression surgery at the age of nine and is now a typical, active 15 yr old with no after effects whatsoever. She rollerblades, has recently done a bungee jump and absolutely loves scary roller-coasters. She has a boyfriend, a disgusting bedroom and a passion for spending my money like there's no tomorrow! Yes, she has problems.....minor in our opinion. She suffers from very bad migraine headaches, sometimes her balance isn't great in the morning and she has missed lots of school. But as far as we're concerned these are a small price to pay in comparisin to the pain and suffering she was experiencing. On the plus side, she remembers nothing about her surgery or the (pretty gruesome) aftermath since she was so young at the time. Please remember this if you have to go through watching your little boy have surgery. It's heartbreaking to stand by while everything is going on and have no control over the situation, but you're an adult and you've made the decision based on what's best for your child. I'd also say to use caution in reading Chiari sufferers experiences on some of the websites, particularly the American based ones. Whilst the experiences are posted with the best of intentions, some of the users post every single tiny symptom on a daily basis and it's difficult to determine which (if any) are appropriate to be reading with regards to your child's situation. Many of the parents on these sites have children who have multiple illnesses in addition to Chiari and most are not the 'norm'. My daughter was treated in the UK by a Canadian neurosurgeon (based in the UK) and everything was explained to her in a plain and simple manner, using language appropriate for a child of her age. Every question raised by the surgeon was initially directed to my daughter and then to us as parents. I'd advise finding a paediatrician who uses this kind of practice. I have very basic knowledge of the way in which the American healthcare system works, but I believe that if you are paying for insurance then you have a right to a paediatrician of your own personal choice. I'd be making sure I'd exercise this right if it was available to me. We have no such system here as all of our healthcare is free and paid for by taxes, and we were very fortunate in seeing the surgeon we did, but if we'd had any problem with her diagnosis or treatment we'd have asked for a 2nd opinion. Finally, please remember that many children, whether they've had surgery or not, live perfectly healthy, normal lives. I have a 15 yr old wardrobe raider as living breathing proof!:D If you need any further information then please just contact me.
    Anonymous 42789 Replies
    • October 7, 2009
    • 10:15 PM
    • 0
    Flag this Response
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