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  • Please Help Cannot Find Anyone With Answers /cervical Mylopethy

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    Old 06-13-2005, 08:06 AM   #1
    PENNYFORRESTER
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    Please Help Cannot Find Anyone With Answers /cervical Myelopathy

    My Husband Went Through Radiation Therapy That Has Caused Him To Be Paralized From About The Chest Down, Also His Arms And Hands Have Been Effected. The Diagnosis Has Been Radiation Induced Cervical Myelopathy. The First Time He Was Diagnosed Was In February. At That Time C1 & C2 Were Effected. He Was Just Released From A Second Set Of Long Test With The Same Diagnosis, But Now His Lesion Is Doubled In Size And They Say 3 & 4 Are Also Effected. If His Condition Continues To Progress I Need To Know What To Expect. Please Help I'm Desperate To Find Someone Who Is Going Thru The Same Thing We Are!!!!!!!

    Last edited by PENNYFORRESTER; 06-15-2005 at 11:33 AM.

     
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    Old 06-13-2005, 06:58 PM   #2
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    Re: Please Help Cannot Find Anyone With Answers /cervical Mylopethy

    Penny,

    There are a few things you can do to get more information.

    First, you need to get the spelling right on the diagnosis. I believe you mean cerebral (meaning of the spinal chord or brain) -- cervical is of the cervix and only women have them. Myelopathy is spelled differently from what you wrote too.... so.... type (or copy and paste) these words into your favorite search engine:

    radiation induced cerebral myelopathy

    If you go to diagKNOWsis.org you will find a list of resources with many sites that you can check those terms. See if you find anything there.

    I see that you also posted your question on the Spinal Cord board but didn't receive any answers. I"m not sure what he was being treated for originally, but you might try posting to the Health Board that addresses his original diagnosis, too.

    Best of luck to you.

     
    Old 06-14-2005, 05:07 AM   #3
    feelbad
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    Re: Please Help Cannot Find Anyone With Answers /cervical Mylopethy

    I just wanted to clarify something Miss D, you do indeed have a cervical spine.It is the first seven vertebrae of the spinal column.it starts slightly into the lower part of the skull and runs the length of the neck.You also have an 8th cervical nerve but no actual vertebrae ,after the 8th nerve the thorasic vertebrae start.Just thought you might like to know that.

    As for what to look up for research,i would put "radiation induced cervical myelopathy". i was just curious as you say he has some sort of a "lesion"? what does this lesion consist of exactly?i was under the immpression that radiation related myelopathy was more of a destruction of the nerves themselves and not from any sort of a lesion.but I admit i really do not know much about that particular subject,but i am pretty well versed at spinal cord problems as I have had to deal with many many bizarre cervical spine issues over the past few years.
    what exactly caused the actual paralyzation to happen.i am just a little(okay,alot)confused as to how that happens with radiation.If you could clarify this for me i might be able to help a little more.Thanks, marcia
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    Old 06-14-2005, 06:08 AM   #4
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    Re: Please Help Cannot Find Anyone With Answers /cervical Mylopethy

    Marcia,

    Thank you for the clarification. One thing I enjoy about moderating this board is the opportunity to learn. The reason I have credibility in doing research is because I'm NOT a medical person. My main area of research is due to a cancer diagnosis, so I've learned quite a bit about that, but clearly, I have much to learn in other regards.

    You've provided good advice.

     
    Old 06-14-2005, 06:39 AM   #5
    feelbad
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    Re: Please Help Cannot Find Anyone With Answers /cervical Mylopethy

    We all have sooo very much to learn.There is nothing like either having a condition yourself or in one of your children to make you a sudden expert in that particular subject.gosh before the internet, it was almost impossible to find any info at all on certain conditions and diseases.I hope your cancer issues have been resolved at this point.I'll bet you could write a book on cancer,huh?Have a great day.Marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 06-14-2005, 06:47 AM   #6
    PENNYFORRESTER
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    Re: Please Help Cannot Find Anyone With Answers /cervical Mylopethy

    Thanks, S Veteran
    In Response To Miss D,
    I Do Indeed Know About The Cervical Spine!!!, We Have Been Dealing With This Since December 2004. After Doing Much Research, I Find That A Lesion Is Described As An Abnormality. I Don't Really Know What Kind Of Abnormality, But When We Were In The Hospital In February The Doctors Explained That It Was Causing Swelling In The Spinal Cord. Also, Since This Time My Husband Just Got Out Of The Hospital Last Week. The Verdict From This Time Was The Same, But Now They Say The Damage Is Going Up & Down. The Nerves In The Base Of The Skull Control A Lot Of Different Areas. Now He Is Experiencing Episodes Where His Tounge Becomes Numb. I Was Hoping That Someone Was Going Thru The Same Thing.

     
    Old 06-14-2005, 08:02 PM   #7
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    Re: Please Help Cannot Find Anyone With Answers /cervical Mylopethy

    Penny,

    First let me say how sorry I am for what has happened to your husband. Radiation induced? I believe that radiation is absolutely NOT for everyone. My mother had radiation done on her brain to stop the progression of "spots"(lesions) that were caused from small cell lung cancer that had mestastized to her brain. She totally could not handle the radiation. It actually made her worse. Her behavior and her senses went crazy. So they stopped after only two sessions. Her cancer was so advanced by then, there was nothing more that they could do.

    If this condition of your husbands is caused by Radiation, I would be talking to some doctors and requesting some answers in "ENGLISH". Sometimes docs tend to use their lingo and of course none of us "normal" people can understand a word of it. Talk to his doctor and tell him to explain exactly what is going on and to please word it so that you can understand it. Write down questions, anything that comes to your mind, before you ask him/her. Be sure that the doc sets aside enough time for you, so that you won't be interrupted. When my mother was terminal from cancer, I had made many trips from Alabama to Iowa to be with her and I called her doctor any time I had a question. I asked anyone I could get to listen to me. ANYONE. If a nurse was doing something to my mother, I asked what she was doing and why. I asked the nurses each day if the doc had put any new notes in her chart. I even called her oncologist before I made my very first trip to Iowa and asked questions.

    Am I understanding that as a result of Radiation Treatment, your husband is now paralyzed? I'm sure that you were informed of the risks of this procedure. All procedures have risks. Knowlegde is your power here and you will have to learn a lot in order to understand what is going on with your husband. Please don't be afraid to ask questions. Docs are who we listen to, it's our right to have things explained to us in terms that we can understand. Have the doc show you pictures if possible, show you the areas that are affected in your husbands body, and how they got that way. Ask the doc if you can tape record any Q & A sessions you have with him/her. So that you can listen to the tape later. I know at least for myself, that I'll walk out of a conversation with a doctor and can't recall most of what they said. Especially when the information is so involved and of great magnitude. This way, if you have it recorded you can listen to it when you are more clear headed. Some docs may have you sign a form before you record them to protect them, but if you just tell them that you want to refer to it merely for information purposes, they may allow it.

    Anyway, of course you will find a lot of info on the .Net, but there is SO much info out there and a lot of it is so different and skewed. Or you'll find medical text on a subject that you can't understand. It can be overwhelming when you search the .Net, although like Marcia said, it's wonderful that we have that tool to use now. I was researching today about a cyst fissure found on my brain from an MRI and I thought after nearly 2 hours of searching that my head was going to blow! You see, I'm bad about getting results of tests that I've had done before I even speak to my doctor about the results. Kinda puts me in control if I have the results, which is helpful for me personally since being ill can make you feel as though you have lost some control of your life.

    JMHO, talk to your husband's doc and any other doc who is involved in his condition and get them to explain as much as possible to you so that you can process the information in your own "language". Be sure to write down the questions though, or for sure you'll forget something, but even if you do forget, call the doc and ask. Always ask and don't be afraid to ask.

    Good luck sweets, and I will be interested in hearing how it goes with you and your husband. I'll check the spine board for your posts.

    Here's wishing you a good spirit.
    tk

    P.S. Marcia, I have cervical spine issues also.
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    Last edited by tkgoodspirit; 06-14-2005 at 08:03 PM.

     
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