I was recently told i have CM

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I am not one for hospitals or doctor's, for months i been having a lot of symptoms that are scaring me, headache's that NEVER go away, memory loss, forgot my own children's names birth days, my SSI number, i will be heading somewhere and totally forget where i am going or why, i'll have a appt scheduled even tell my fiance and within mins i forget and end up missing my appts, dizziness and dark spots in my eyes, pain in my eyes, spikes in my head, feels lile a knife stabbing me right through my head,eyes and ears, my left arm goes dead, i thought i was having a stroke, balance is not good, my fiance and i will be walking and my entire body just wants to go to the right instead of walking straight, fell a few times while walking, stumble and trip constantly, wake up crying throughout the night every night, can't get outta bed without my fiancé help, can't even get myself dressed, hurts to even wash, shave my legs or feet, nauseous all day everyday, lost about 100 lbs since July, n i was one who tried for many years to lose weight, tried diet after diet, vitamin after vitamin, going to the gym, vomiting, ended up in the hospital for that many times and tjey kept saying it was my stomach, can't control my urination or bowle movements, hurts to even walk or move slightly, i can't stand more than 5 mins without getting excruciating pain that drops me to the ground, i have 4 children 13, 11, 9 and 4 and i can't even interact and play with them and they get upset, well my younger 2 do, my older 2 are very helpful but they always say they miss the old me, who played, cooked, baked, decorated, and had fum with them, makes me depressed to know i can't please them like i used to, my oldest daughter always begs to play with my hair and rub my back, but it hurts to even be touched, on top of all this, a so called friend of mine begged me to go to the store with her, i kept saying no then she said she was scaref to fall asleep with her 1 month old baby in the car, so i went, the entire time i kept telling her to hurry i didn't feel well, finally she gave me the one cart ( we had 2 1 with the baby 1 with her stuff) she told me to wait for her up front, so that's what i did, as we were walking out a guy stopped us she kept going, he told me if ahe came back in i could go, ao i called her, she said "I already left, im not coming back in there, im on probation" so the guy asked me if i had cash, all i had was 2 debit cards with money on them, he denied that then said i wasn't in any trouble i just needed to answer a few questions, i went cuz i wanted no trouble, well he called the cops and told them something totally different, the cop believed me and let me go home, 3 weeks later a constable shows up and they charged me with a retail, i got a random text bragging that it's funny, i am fighting it, but with all my issues i am dealing with i hate to deal with this also, all i ever wanna do is sleep, i am not the person i used to be, somedays i can't even stand up straight, i feel like i am in a bubble, ill be watching tv and looking at the screen but i have no recognition of what is going on, it takes me hrs to watch 1 episode, my fiance says he will be talking to me and ill just stare right through him, i am always in a daze like im not even here, i go see neurology on the 22nt, but does anyone have any advice for me to ease my pain and symptoms till then?

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  • Posted

     Hi Heather, gathering from your post in regard to your symptom, I feel that you have a like wise symptom as mine prior to my decompression, my suggestion would be bring your list to show your neurologist for your symptom...talk to him/her how demoralised this is..effecting your quality of life..last and but not least, GET YOUR SURGERY Done as soon as possible..the soonest I woke up from the surgery..all the symptom gone..STRAIGHT AWAY.and two months after YOUR FAMILY WILL HAVE YOU BACK..AND LIVE HAPPILY AFTER
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  • Posted

    Hi Heather! With the severity of your condition the decompression surgery should make a HUGE difference. Just make sure your surgeon knows what he/she is doing!! I now have a CM specialist and he says 50% of the surgeries he does are fixing other surgeons mistakes. You've got this Heather!! Keep reaching out for support from others who can relate.. it helps so much. Good luck! 

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    • Posted

      Thank you Sierra! It just bother's me when my children say they miss me, the old me, the one who played, cooked, baked, did everything to make our days fun, and now i can't stand the slightest noise, i never wanna get outta bed, hurts to move or walk, can't stand light, the other day i went to the store with my fiance and my youngest son, an elderly lady stopped and asked me how old he was and how adorable he is, i couldn't even remember his age 😟 this isn't the first time this has happened, my fiance and i will be having a conversation and i will just stop mid convo cuz i totally forgot wht i was saying or where the conversation was heading, i was filling out papers for a agency and forgot my own ssi number and birth date, i am only 30 years old but feel like i am 60's , trouble controlling my urine n bowles, can't even get myself dressed, i am very lucky to have the fiance that i have, he does a lot, but wht does bother me is when i try to talk to him about something i don't like or if i he did something differently then i like, he starts screaming and throughing everything he does right in my face, and how i haven't done any of it in awhile, my family doesn't help or support me in any way, when i called to tell my mother n sister and ask if they could take me to see the neurologist they both said "We don't care Heather, and we are not taking you anywhere" they have been like that my entire life, my mother always uses the excuse, that every time she looks at me she see's my father, apparently he was a bad man, but i don't even know him, he has been in prison since i was 4 months old, but why is that my fault, i am not the one who was with him or pregnant to him 😟 my gram and uncle raised me but my uncle doesn't even bother with me cuz i have children, and he says that's not how he raised me, my gram is really sick herself, but she does what she can for me, my sister and i used to be really close, but she has done some really dirty stuff to me, so i cut her off for awhile, but now she is up my mother's behind and is just as rude as she is, the only people i have are my fiance and my children, my 2 oldest help a lot but my younger 2 don't really understand, it breaks my heart 😟...I am terrified to have this surgery on my brain, i mean i am scared of surgery to begin with, but the thought of them cutting open my head gives me chills and makes my depression even worse, especially the thought of having no support, my mothr would put me in a home if it was up to her 😞...my fiance nd i have a appt which is on the 3rd floor, it's so hard to walk up n down the stairs so i hardly leave, my finace goes everywhere for us, unless i have a doc appt or something that i need to leave, but even then i don't want too, but know i have too, i am tired ALL the time, i am in pain ALL the time, can't even stand for more than 5 mins if that, but hurts when i sit also, everytime i sit i hear more than 1 crack in my back, when i move my shoulder's all i hear is cracks and grumbles, hurts to move my head or look to the left or right, hurts to nod my head yes or no, i was working 2 jobs, until 1 day i wasn't feeling myself, but i still went to work, i worked 8am-4pm i was miserable the entire time, kept watching the clock, when 4 came my fiance met me outside to walk me home n i just felt like i was gonna pass out, n need to vomit, then it all came, i started vomiting this yellow foamy stuff that stunk and burned so bad, lasted 4 days, my finace kept asking me to go to the ER, i hate hospitals, but after the 3rd day i went, their they did test, blood work and came back and said i wasn't able to go home cuz they found something extremely large in my stomach so i had to stay to get a endoscopy done, when i gor that the doc said they found NOTHING, so i am still having a bunch of tests for that as well, i have lost a sincere amount of weight, i feel as if i am in a bubble constantly, kinda like nothing around me is real, i hate this feeling and i miss playing with my children, cooking, baking, Christmas is my favorite time of year, i usually decorate the entire house, bake, cook, just get into the spirit all together, but the past 3 years i haven't been able to get into anything, just wish my family would take this a little more serious nd actually care, my mother got surgery for carpel tunnel amd everyone dropped everything just to be there for her, i just feel so alone 😟

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    • Posted

      Hello Heather,

      Dont understand me wrong but it is really better if you use paragraphs when you write a long text. It is better and easy to read it than.

      I have also cm1 like you. When were you diagnosed with this? Do you also have a syrinx? Did they took a cine mri to follow up your csf flow.

      I also have difficiculties to tell my hole family that i have problems with this malformation. After couple months most of them believe..but i dont even care anymore..that is not big issue we have.. I am also scared like you for the operation but we must otherwise we will stay like this or get even worse. We are the same age..I had also nothing like you first..but as the time went on my symptoms became progressive..do you recognize that?

      Where do you live?

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