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  1. #1

    Newbie

    Hello I am kiyoka, I'm 25 from new mexico. I just happened to run into this site by looking for ideas about brace. I got hurt at work a few months ago. I was moving a patient when she decided to dead weigh as the patient was holding onto my neck. I didn't want to let the patient go so I held her up by my neck as i bent down and twisted to get to the call button. I went to PT, chiropacture. I had two mri's done. they both showed a syrinx between c 5-c7. The first one had a string of fluid as the second one had to areas where there was fluid. Tomorrow I am seeing a physical and rehab doctor, since it deal with works comp that is where they sent me. I hope i get to see a neurosurgeon pretty fast. I haven't been to work in three weeks. work pretty much is my life and sad to be at home. I hope i am picked to have these syrinx drained. here are my symtoms:
    This constant headache
    Pain from the shoulders that shots down my arms into my hands, with this huge headache that never goes away. I don’t move my head because I know it will cause pain. I have to go lay down after standing for a short period of time. I have to get up from laying because it will cause pain either way. When I stay I feels like my head is going to fall off. Like I need support in the shoulders.
    Decrease in sensitivity of feeling in both arms and hands ( I ran into doors with my arms, I drop everything I pick up, I can’t tell if things are hot or cold, I trip every time I walk)
    I have weakness of the shoulders, arms and hands ( was in the mri and I was holding my hands so that my hands wouldn’t move . Me putting on clothing makes me sweat, and so tired)
    There is numbness on shoulders arms and hands ( when I am not using muscles, when I move my head up or down, my hands goes to sleep, or tingle)
    For a whole week, my underwear was totally wet. I have ic and I never been that wet before for a whole week. I did acupuncture to get rid of it.
    It hurts to breath,

    Well I read up on syrinx but i would like to ask questions to people that are dealing with the samething. I am pretty scared because of the long waits. I can't wait to meet all of you. I hope everyone is doing well.

    Thank you for your time,
    Kiyoka

  2. #2
    Senior Member skippy13's Avatar
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    Welcome to care cure Kiyoka.

    Do you have private insurance in addition to the workers comp coverage? I would not wait for a referral from workers comp doctors as you may never get it. I would use my private insurance to get a referral from my personal physician to see a neurosurgeon. Workers comp will just have to fight it out with your personal insurance company, and they will. There is a subrogation policy with most private insurance companies that will go after workers comp for reimbursement. Call the caseworker at workers comp and tell them that you are going to go to a non workers comp doctor for what you need if they dont hurry up and refer you to the proper physician immediately. Maybe that will spur them to action. Be sure to tell them that if you suffer permanent neurological damage due to the delay it will only be more expensive to deal with in the long run.

    I hope you are getting compensated for your time off work. Start demanding action on your requests/right to see a neurosurgeon or go on your own insurance and let them deal with workers comp themselves. And be sure to notify your own insurance company about what you are doing so that they can be sure to segregate the bills for service to be reimbursed by workers comp.

    Most importantly, I hope you get what you need sooner rather than later so you can begin to feel better soon and recover the use of your body. The sooner the better.

    Amy

  3. #3

    thanks

    Thanks for your suggestions. I think i have an appointment with my pcp the 18th, so i am thinking i will be asking her to refer me. It's pretty scary. so could you tell me abit about youself? well i hope all is well.

    thank you again,
    kiyoka

  4. #4
    HI and welcome,

    I am sorry about your situation and I agree that you should contact workmans comp and explain as skippy above suggests.
    I know WC has strict guidelines so make sure that they are keep informed of all that you are doing, especially all your symptoms.

    You will be able to find alot of information if you use the search above in the upper right corner and type in syrinx and you will see the experience of others.
    Keep us posted on how you are progressing.

    AAD

  5. #5

    thank you

    I am working on being a nurse.

    do you feel that a syrinx could be caused by a injury of this type, or do you think i am more likely to have cm? I just want the pain and weakness to stop so that i can go back to work. I miss my patients so much.

  6. #6
    Senior Member skippy13's Avatar
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    Hi!

    I dont have a syrinx, so have no advice for you there sorry to say.

    I'm glad you have an appointment with your pcp, be sure to tell her everything that has been going on with your workers comp ordeal in addition to all that you have been suffering physically. My pcp didnt want to get involved with any workers comp injuries, so dont be surprised if they tell you that. But see if they will refer you to the doctor you need.

    I have a slightly different problem with my c-spine than you do so I cant help you there, but the symptoms are all the same as they probably are for anyone with an injury in that area. You are right it is scary, but you may have a good chance for improvements.

    It is important that you demand the care that you need. Being on care cure you can find out what questions you need to ask of your physicians, and you can educate yourself to be a better advocate for yourself. You need to remember that your own physician may not be familiar with your particular type of injury, so you may end up educationg her somewhat. SCI is a specialty in itself, and you have to become the specialist, so you have to educate yourself. Then you will be better prepared to avoid being taken advantage of by workers comp. I sound cynical don't I? I have been through cases with workers comp, and sometimes they come through for you, and sometimes they dont. It's up to you. Educate yourself to advocate for yourself. You can do that by researching all threads on Syrinxes here on care cure. There is a lot of info to be gained. Information is power.

    I hope you can get some help. The headaches can be intense from what I understand. I wish you well Kiyoka.

  7. #7
    Hey skippy, thanks for your help. I printed some information for the new doctor. I wrote out two pages of stuff to give to the new doctor. It's okay if you dont have a syrinx, just having someone to talk to i am very much enjoying. I am kinda at a loss of going from working to a spinal cord injury. You think you will never find more then..and there is comes. i dont know how to stop the pain. what do you take to stop the pain?

    kiyoka

  8. #8
    Senior Member skippy13's Avatar
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    I have a pharmacy of everything from morphine to oxy and everything else. I dont use any regular pain meds usually, because they dont work for neuropathic pain. I take neurontin for pain and baclofen for spasms which cause me some pain in my arms, legs and body. I end up throwing away any pain meds I have because they have expired.

    Like you, my arms are most affected and it is a hassle to be dropping everything. I also understand the isolation. Do you have any family that can help there? Maybe you can just go visit your patients as a friend? Go and read to them if you feel up to it, or anything just to get out for a while once you find a way to deal with your headaches, that is.

    I know it may increase your pain, but dont give up on the value of tolerable exercise of some sort. You dont want to fall apart while you are trying to recover. Take this time as a time out from the daily grind. Appreciate the time off as a time to treat yourself. Set up home spa days with fancy bath salts and candles and wholesome healthful lunches.

    I hope you find some way to deal with the headaches so that you may get some peace from them and enjoyment from your time off work. (even though I know you'd rather be working. I would too!)

  9. #9
    Senior Member Mona~on~wheels's Avatar
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    Welcome to CC Kiyoka. I'm sorry you're hurting so bad.
    I hope you get some answers from your pcp today.
    God bless you. Praying for you. {hugs} Mona

  10. #10
    Welcome to CC. When you find out more about what's going on, let us know.
    Mary
    I want to Rock you Gypsy soul and together we will flow into the Mystic.
    Van Morrison

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