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  • Diagnosed with Chiari and low B12

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    Old 08-02-2008, 10:46 AM   #1
    scout316
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    Diagnosed with Chiari and low B12

    Hi....okay I posted on the MS board and they referred me to this board...specifically Cindy...Hi Cindy...could you read my posts on the MS board and give me any input...thank you so much! Scout

     
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    Old 08-02-2008, 02:58 PM   #2
    cindys601
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    Re: Diagnosed with Chiari and low B12

    Hi Scout~

    I did go to the MS site and read your post. Aren't they a great bunch over there? It almosts saddens me to NOT have an MS diagnosis in the end because they are the most supportive individuals and such a closenet group.

    But here I am with a chiari diagnosis with not many people to turn to on these boards. It is scary not knowing whats going on and not knowing who to turn to. So hopefully I can help answer some questions you might have.

    I am so sorry to hear that your having so much trouble. Its very important with this diagnosis to learn as much as you can so you can better advocate for your health.

    So many neurologists and neurosurgeons learn about Chiari in medical school and what they have learned is outdated. There is alot that has been updated as far as knowledge and treatment for chiarians to date.

    Firstly, Chiari is congenial in many cases. The skull doesn't form properly, leaving a smaller space for our brain. This can cause a herniation in itself. But also head trauma, such as car accidents, amusement rides, contact sports, falls, jerking of the head and neck and so much more can cause the tonsils to descend. But there is also aquired chiari that is caused by head trauma as well.

    The 1st MRI you had stated, didn't show chiari but years later, it did. So maybe 2 things could have happened. It may have been a borderline chiari and something happened to worsen the herniation to 6mm or, as in my case, because it wasn't something they were looking for on the MRI, it could have been merely overlooked. My MRI was found to be "normal" with no findings but I saw my own descending tonsils and brought it to my neurologists attention and he admitted he had overlooked this. He was looking for legions because at the time, I had alot of classic MS symptoms.

    So many of the symptoms you are experiencing, I too have. I have a mild herniation but this has affected the CFS flow in the back of my brain. So there is more than just the herniation to concider when your experiencing dehabilitating symptoms. But you always have to keep a doctor in the loop even if you suspect your issues are chiari related because as you know, it could be something else causing symptoms, such as low vitamin B12 that you had going on.

    Most drs believe that a mild herniation can't cause serious symptoms, when indead they can. You really need to seek out a true Chiari specialist to evaluate the whole picture. They put you on a scale of severity to how this is affecting your quality of life to determine if surgery should be done. Sometimes its an option and sometimes its not.

    For me, I fealt like I had no options because it had changed my life so drastically. I went from a very active mother of 3 to being unable to work, and just a simple trip to the grocery store was too much. My legs got so weak, I couldn't walk without it being a workout and I'd come home and collapse.

    You mentioned the headaches not being severe. I've had headaches my whole life and lived on tylenol which helped. But I never had the chiari headaches you hear others talk about. I had a lumbar puncture to rule out MS last year and THAT was what set my headaches in motion. NOW I understand what others deal with on a daily basis. Its a horrible way of life to live this way. And nothing, even morphine, touches my pain. The only relief I get is when it starts, I get a stinging burning pain and I know if I don't lie down, I'm going to be in trouble for days. So I use self medication and rest.

    But, like I said, this has changed my life. I can only be up for a couple of hours before I need to rest. I'm also very careful with my head and neck. I used to go to chiropracters alot, now I know thats the worse thing. I LOVE amusement rides but now I can only watch and get enjoyment from others having fun. There are alot of things that can do more damage and make things worse that must be avoided. Heavy lifting, pulling and pushing as well.

    So if your headaches haven't gotten really bad, my best advice is to pamper your body and treat it with TLC. There is no "cure" for chiari. There are surgeries that can slow the progression but the best thing you can do is to prevent things from worsening. If I had know what I know now, I would have been kinder to my body all these years. And finding a good chiari specialist to evaluate your condition is a step in the right direction. If its affecting your quality of life, its definately worth pursuing!!

    If you have any questions, feel free to ask. I'm here if you need me and know that your not alone!!

    Take care

    Cindy

     
    Old 08-02-2008, 03:10 PM   #3
    Bearygood
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    Re: Diagnosed with Chiari and low B12

    Cindy, you are an . And MS or not, you will always be part of our "family"!!
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    Old 08-02-2008, 03:18 PM   #4
    cindys601
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    Re: Diagnosed with Chiari and low B12

    Bearygood~

    I'm honored to be a part of your "family"!! You guys are great!! Thanks for sending scout over and your last attempt at sending out information to others.

     
    Old 08-02-2008, 09:59 PM   #5
    scout316
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    Re: Diagnosed with Chiari and low B12

    Thank you so much Cindy....you are a sweet person and it was very generous of you to share so much with me.What I've been feeling and going thru for the last 2 years has been "horrible" and I can feel your pain too,because it seems like this chiari thing is a "lonely,hardly talked about condition"to say the least.The two neurologists at Rush University were very nice,BUT the senior one told me that neurosurgeons are just "blaming" people's chiari for other problems...he said that one in every four people have chiari and that unless you have a sever headache most of the time that the decompression surgery is not an option.So much for that dr. visit. I know only two other people that have chiari.This one girl was in a car accident and she was so messed up and they couldn't find anything wrong with her.So she was in a mental hospital for months and she had 3 little children at home.Finally they did an MRI and found the chiari...she had a 7mm herniation.She had the decompression surgery and after about 2 weeks she was feeling better....before that she couldn't move her fingers on her left hand....everything on her left side was affected actually....she has MRIs frequently and found out 4 years after her surgery that she has a 7mm herniation AGAIN...she sais she won't be having surgeryagain,because her pain never stopped after the surgery they did before.She has to take klonopin everyday and topamax and some other stuff(can't remember the other meds). My brother-in-law has chiari(don't know what size his herniation is),but he went to a neuro that was giving chiaripatients some kind of "papaya injections" that would "shrink" the herniation.I've tried contacting him and my sister about it,but they are not close with most of the family.I think though my other sister said that neuro retired....oh well that doesn't help me! Hey Cindy you are really brave....did anyone ever tell you that? I happen to be the biggest scardy-cat on earth...I can give others emotional support,but I can't help myself.My faith is what keeps me "sane",but I absolutely have times where I feel so overwhelmed that I just want to throwin the towel and give up.So my biggest problem is I don't trust doctors now.Why is it that some people with chiari have symptoms and some don't?That is what bothers me...I am hoping that my old neurowill get some things figured out for me.The B12thing is complicated in itself,but when I think about what you are going thru I feel like I'm not "all by myself" with this.I just have my little "pity parties" and then I forget about it and press on with my "disabled" life.I have a little grandson Benny who my husband and I were raising,because his mom has emotional issues and my son had to work and for over 5 years we took care of him(he has cerebral palsy...mild,but he can walk with a reversable walker and he talks very well...all those years we took him to physical therapy and speech therapy and then when I got sick I couldn't even walk(funny,isn't it?)and then Benny's mom started taking care of him(which is good),but it crushed me,because I couldn't do things with him:like playing,etc,because my whole body felt so disabled.The B12 shots helped me,but I still have all this stuff going on.....hope I get some answers soon.I tell Benny when he comes over every week that I'm all better now,but I have to rest sometimes and he understands that,but he'll say"Your still sick Gram"....I just laugh and tell him that I'm getting old and he says"what's old?".....kids are so precious. I wish you well Cindy...hope we can share more again...so happy to meet you..........heartfelt thanks,Scout

     
    Old 08-03-2008, 05:22 AM   #6
    cindys601
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    Re: Diagnosed with Chiari and low B12

    Hi Scout~

    I am so happy to share my story with you. Chiari is such a lonly world and even the ones close to us who say they understand and try to show support, can only IMAGINE what we live with on a day to day basis. We appear to look normal to others but suffer so much inside. So its so nice to have a place to go and have "pity Parties". I have them too!! LOL

    You called me brave but when I read your post I heard a brave woman talking back to me. You came to the rescue of a little boy who needed you when his mom was in trouble. That takes a strong woman. But I always say things happen for a reason. He probobly needed his mom so much and because you got sick, he mom had to step up. So there was good that comes from the bad, for sure.

    For me, I was too independant. I worked 7 days a week and gave up so much with my family to do that. I had a bad 1st marriage and 3 children to support but my working had so many saccrifices. My time with my family was so important to me so when I got sick, I had to allow myself to lean on my 2nd husband (who is truly wonderful to me) and I let my job go because I had to.

    I have a 16 year old daughter and one day she was upset and I thought the test she had at school was making her nervous. I questioned her and you said "no, Mom, I'm worried about you!!". I put my arms around her and told her not to worry because I'm ok. I told her to look at this as being a good thing because now she has her mom around more and we'll have more time together.

    But in reality, like yourself, physically being sick makes it difficult to do so much. So I understand how you feel not being able to play with Benny so much anymore. But I spend more time sitting and talking to my kids now so those are precious moments too!!

    The dr who told you that 1 in 4 people had this may have some truth to it. They are now thinking that Chiari isn't as rare as they once thought. So many people probobly have this and may never show any symptoms. But for those of us who have become disabled because of it, we need help!! And local neurologists and neurosurgeons are not up to date on the newest treatment for chiari. You really need to seek out a chiari specialist to get evaluated.

    I too, had lost faith in dr's. They don't believe what is happening to us is real and alot of people are told that this is stress and anxiety causing these symptoms. But they don't live in our bodies to feel the pain we live with.

    i went to New York to The Chiari Institute (TCI) and for the 1st time, was taken seriously. I not only have chiari, but there are related disorders as well. I had a severely tethered cord which was pully my brain down. I had the TC surgery June 16th and though my headaches aren't gone, my legs do feel so much stronger. Tethered cord affects the lower extremities. The legs, bowels and bladder function too.

    I had some serious bowel issues before the surgery and now things have gotten better. We took a 3 hour trip this weekend and usually, I make my hubby stop once or twice to pee but didn't need to stop once. So I did get some relief from surgery. They are now finding out that doing the TC surgery 1st, before decompression, has better results. Maybe your friend should look into that as well.

    I also have cranio cervical settling and will have to go through a fusion surgery next. Its taking it one step at a time. Though there is no "cure" these surgeries can relieve the pressure on our nerves that are being compressed and hope this helps but also just knowing that these surgeries will slow the progression is enough for me!!

    So scout, theres alot going on with this disorder. Learning more about it gives you knowledge and power when your dealing with Dr's. You'll find out soon enough that you'll know more than most dr's when it comes to chiari.

    And I'm here too, whenever you need someone. If I can answer questions or you just need someone when your having a bad day. We all have those!! LOL You'll get through this because I sense your strong. keep the faith!!

    Take care

    Cindy

     
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