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  • info. on arachnoiditis?

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    Old 07-02-2008, 08:04 PM   #1
    lfoster21
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    Wink info. on arachnoiditis?

    I am trying to find out how easy it is to dx. arachnoiditis with a CT scan. I know Moldova told me that they could, in an earlier thread, but I am not sure what to ask the CT tech. to look for and want to know if there is a specific view they need to take etc.

    I just had a CT done and told them that the Dr. is trying to confirm or not confirm Arachnoiditis, which is scar tissue around nerves in the spinal canal...but the report mentions nothing about scar tissue at all. He just noted how the hardware looks, from my previous surgeries. I want to call the tech. back and ask him to review the scan one more time, specifically looking for Arachnoiditis, and I wondered if there is something specific I should have him look for. (When I mentioned Arachnoiditis to him, he just gave me a blank stare, which is why I tried to explain what it was we were looking for...but I don't know if I said the right thing or not.)

    Thanks,
    Lorie
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    Last edited by lfoster21; 07-02-2008 at 08:06 PM.

     
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    Old 07-02-2008, 09:03 PM   #2
    ms_west
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    Re: info. on arachnoiditis?

    Oh my, I pray that you do not have this painful disease. From all the reading I have done on this because of Moldova's diagnosis. It lookes like a spider. If you look at your arachonoiditis mri picture, look at the cord, you will see little dots on it scattered on it. That is one sign. Do a search on the net and you will find a ton of pictures.

    Did your doc in D.C. order this mri? Is this what they think your problem is?

    Stymie has this and there is one person right that I can't think of - hopefully it will come to me who has it.

    I am so sorry and I will be praying for you.

     
    Old 07-02-2008, 09:57 PM   #3
    lfoster21
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    Wink Re: info. on arachnoiditis?

    Thank you Pepper. I was Dx. with this a couple of months ago, by my pain management DR. But he dx. it by eliminating all the other possibilities, mainly Cauda Equina Syndrome. But in an earlier thread on the back board, Moldiva said that he was suprised that my Dr. did not order a CT scan...to make absolutly sure, before dx. me. So, I asked my Dr. for a referal for a CT scan (can not have MRI's after a stimulator is implanted). The CT tech asked me what my sypmptoms were and why I was having the scan done. I told him that it was to confirm if I have Arachnoiditis or not and he did not know what that was. So, I told him that it's when the scar tissue fuses your nerves together. But today when I got the report and read it, all it said was that he was the hardware from my fusions and he noted where they were and that they did not look loose and that I do not have stenosis. But there was no mention of scar tissue anywhere. Its as if he completly forgot or did not care about what we had discussed. I am planning on calling him tomorrow and asking if he will look at the film again and tell me if he see's scar tissue and if so, if he would re-do his report, to include his findings. Im hoping that the scar tissue would show up on a reg. lumbar view of the scan and that he was not suppose to do anything differently, in order to see it.

    Thanks for your info. and your thoughts.

    Bless you,
    Lorie
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    Last edited by moderator2; 07-03-2008 at 05:30 AM. Reason: posted commercial website

     
    Old 07-03-2008, 03:17 AM   #4
    FEDUPMOE
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    Re: info. on arachnoiditis?

    Hi Lorie: I also have Arachnoiditis. Mine showed up about 5 years ago on an MRI and is now documented on my last 4 MRI's. I was told the MRI needs to be of a high quality
    (T2 weighted scan). While looking at this view they say the second layer of the mengis which lines the brain and spinal cord, shows up and looks like spider **** - hence the name arachnoid. Mine were from multiple lumbar punctures (for back pain) & spinal anaesthetias ( for knee replacements).
    Like Fibromyalgia, few doctors know of it so a lot of research has to be done on your own... moe

    Last edited by moderator2; 07-03-2008 at 05:30 AM. Reason: posted commercial websites

     
    Old 07-03-2008, 05:28 AM   #5
    Moldova
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    Re: info. on arachnoiditis?

    Foster,
    Arachnoidities is a very obviously seen on MRI and CT scans. Everyone is right here: scarred nerves and cord looks like a spider. If your PM told you you may have it but it wasn't "sientifically" proven by tests - it means you don't have it. My Neurologist says that they don't have to guess with this condition because regular tests MRI and CT show it if any ARC present.

    I met one person in a waiting area of my PM Dr office and he told me the same thing: DR thought he may have it but tests did not show any ARC and he was so happy about it.

    So I can tell you: congradulation than! If you would have it, honey, they would put this on your report in big black letters, I am serious. This is a very serious condition and no way it can't be missed.

    If you have any questions - I am very happy to help you.
    M.

     
    Old 07-03-2008, 07:43 AM   #6
    ms_west
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    Re: info. on arachnoiditis?

    I was reading this morning and another name for this arachnoiditis is called epidural fibrosis

     
    Old 07-03-2008, 04:43 PM   #7
    mznell
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    Re: info. on arachnoiditis?

    There is a doctor who writes quite a bit about arachnoiditis. His name is Charles V. Burton, M.D. from the Minneapolis area. You will be able to find his various writings listed on the 'net.

     
    Old 07-03-2008, 08:19 PM   #8
    lfoster21
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    Wink Re: info. on arachnoiditis?

    Thanks all for your responses. Actually, my Dr. thinks I do have it and he did not think I needed any more testing. But because I had learned here, that it can be seen on a CT scan, I wanted to know for sure. So I asked for a CT scan...which unfortunately, the tech. that did the CT scan, only noted how my hardware looked and did not mention anything about scar tissue. I know that I have what my Dr. called "massive" scar tissue, from when he tried to do my stimulator, he tried for 3 hrs. to get the stimulator throught the scar tissue...to get it to the spine. He had to quit as it wasn't going to happen.

    So it seems to me that I went through the CT scan for nothing...I wasn't looking to see if my hardware was loose or not and that is all that the tech. mentioned.

    I did pick up my actual CD of the scan and I am going to give it to my Neurologist, to look at it for me. I would be thrilled to know that I do not have it, but I don't want to assume I have it, just because the Dr. says I have it, & not get proof. I had the PA call the radiologist and ask him to read the results to her & I told her to specifically ask him if it shows the scar tissue issues. She called me back and said that she asked him to read her the report and he said that my fusion area does not have stenosis and the hardware has not changed any since my last MRI. I asked her if she even asked him about the scar tissue and she said no, but that she knew that it is hard to see scar tissue on a ct scan anyway, and that I really needed to have an MRI...which of course I can not have.

    The Dr. is still saying he thinks I have Arachnoiditis. I am frutstated about the whole thing...I think I will feel better once I have my Neurologist look at the CT scan. Thanks for letting me vent...its not something that I ususally do...but every now and then I guess it just comes out.

    Thanks again for all of you words of wisdom.

    Lorie
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    Last edited by lfoster21; 07-03-2008 at 08:33 PM.

     
    Old 07-03-2008, 08:41 PM   #9
    lfoster21
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    Re: info. on arachnoiditis?

    Hey Moldova-Actually my Dr. says I do have it...he didn't say anything about it not beeing "sientifically" proven by tests. I'm having the tests done now, in order to prove or disprove me having it. But thanks for your information, I really appreciate your help.

    Lorie
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    Old 03-07-2009, 09:07 PM   #10
    Kiahcoco
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    Re: info. on arachnoiditis?

    Lorie,
    I have come across a place called LSI, Laser Spine Instiute. They can deal with scar tissue thorugh zapping it with a laser. I know I have arach. along with CES and who knows? LSI will review your MRI for free and let you know what they think? Some scar tissue cannnot be treated but some can. It does return but I would rather have these treatments every 5 years then be taking so many different meds!
    Richard

     
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