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  • possible arachnoiditis diagnosis

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    Old 01-12-2015, 06:05 PM   #1
    Davies80
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    possible arachnoiditis diagnosis

    To make a long story short. I have been suffering with back pain on my left side ONLY in the thoracic and cervical area. Pain caused chronic headaches, wierd prickly sensations on left side of my face, some ocassional arm numbness, and eventually depression. Cervical and thoracic MRI showed DDD and Spondylosis and some slight disc bulging at C5-C6 and T-10-T-11 but they never found a specific nerve that was pinched on the scans to prove why I had the pain. I was told that I had the spine of a 50 year old and I was 30 at the time.

    I began to get trigger point injections in a doctors office close the hospital (was told in case a lung was punctured) and also had one steroid injection under sedation. They went through the front of my neck near the collar bone and through my back to get to the large nerve that runs over the shoulder blade. I was told they used a dye so they could see where the steroid was placed, the steroid itself and numbing medication . Would this be considered an epidural injection?!

    Fast forward to 6 months ago.... pain stayed constant as mentioned above but began experiencing increasingly painful lower back pain, siadic and leg pain on my left side only. Then 3 months ago the pain in the lumbar area has spread to both sides, hips and legs.

    My doctor ordered a Lumbar MRI and the results came back and said Nerve Root Clumping. I was immediately referred to Jean-Marc Voyadiez - Neurosurgeon out of Georgetown. In the meantime I sent my MRI's to the Laser Spine Institute.... I figured why not.

    I started to Google nerve root clumping and arachnoiditis is everywhere.

    I heard back from the Laser Spine Institute and they said they confirm the nerve root clumping and stated I have arachnoiditis. They said there are no surgical options they could perform and Andy surgery is high risk. Recommended I see the neurosurgeon on March 4th where I was originally referred and said I should probably expect that all the doctors can do is make me as comfortable as possible.

    My concern now is that the pain is increasing. For 3 months I have been experiencing vision disturbances to include blotchy vision or aura you would experience pre-migraine and today the vision seemed to worsen.

    I don't even know what I am asking the group but ANY thoughts on my post would be greatly appreciated....

     
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    123rsdsufferer (01-13-2015)
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    Old 01-13-2015, 03:57 PM   #2
    123rsdsufferer
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    Re: possible arachnoiditis diagnosis

    I am in the same boat. Tomorrow I have a second MRI. This one is with contrast as the one they did a week ago did not have contrast and all they could see was clumping of the nerves. I pray that this is not arachnoiditis and if this is please don't let the pain I have been living in since Dec 25th be what I will have to deal with for the rest of my life.

    You said, "I was told they used a dye so they could see where the steroid was placed, the steroid itself and numbing medication . Would this be considered an epidural injection?!" Sounds like it was an epidural done under fluoroscopy with dye to me.

    Please keep us updated on what your visit with Jean-Marc Voyadiez - Neurosurgeon out of Georgetown brings as I live close enough that I could follow up there as well.

    I wish I had some magic words of comfort but unfortunately there is not much to say except I am here to listen or lean on when you need some extra support.

     
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    Old 01-13-2015, 05:06 PM   #3
    Davies80
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    Re: possible arachnoiditis diagnosis

    123 I will let you know how it goes with the neurosurgeon. Please Google him
    His reviews are AMAZING. Only bad reviews deal with long wait times for appts and things like that bUT his attention to the patient doesn't rush appointments and his surgical ability looks stellar.

    I wondered why I haven't had an MRI with contrast yet. Maybe because I haven't seen the neuro doc yet. I pray that there is some other cause for my pain too. I will post with all update and you too!!!!

     
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    Old 09-19-2015, 06:37 PM   #4
    Moldova
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    Re: possible arachnoiditis diagnosis

    Drs order dye if they presume something but they weren't able to see it clear on without dye MRI.
    I didn't need dye to see ARC clearly on my pictures. I guess, it all depends...
    Please, dear don't panic. Many of us live normal, fullfiling lives with ARC. Thank God we have Pain Mgmt great Drs who have a lot of options to give us good life quality...

    Wishing you the best,
    Moldova

     
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    Old 09-19-2015, 08:25 PM   #5
    Davies80
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    Re: possible arachnoiditis diagnosis

    I saw the neurosurgeon quite some time ago. He read the report regarding the appearance of nerve clumping but said he didn't see anything. He glossed over it very quickly. I would have preferred that he show me on my MRI but didnt. My husband had back surgery from Voyadiez and I can tell you that we were extremely pleased with the outcome. If you find out you need any sort of back surgery I HIGHLY recommend him.

    My pain has progressed and remains undiagnosed for now. I am experiencing intermittent deep hip pain on my left side and the top of my foot to my ankle has been partially numb for about 4 months now. I have had x-rays on my hip and ankle, EMG to test nerve velocity, and was also tested for Lyme disease based on several doctors recommendations *you may want to be tested just in case*

    I believe it is most likely neurological and am trying to get in to see a neurologist soon. He wanted several years worth of records before he would see me.

    I still have good days and bad days but try and stay positive. I've lost about 75 lbs. Which has helped somewhat.

    I pray you get the answer you are seeking and that you get it soon!

    Laurie






    Quote:
    Originally Posted by 123rsdsufferer View Post
    I am in the same boat. Tomorrow I have a second MRI. This one is with contrast as the one they did a week ago did not have contrast and all they could see was clumping of the nerves. I pray that this is not arachnoiditis and if this is please don't let the pain I have been living in since Dec 25th be what I will have to deal with for the rest of my life.

    You said, "I was told they used a dye so they could see where the steroid was placed, the steroid itself and numbing medication . Would this be considered an epidural injection?!" Sounds like it was an epidural done under fluoroscopy with dye to me.

    Please keep us updated on what your visit with Jean-Marc Voyadiez - Neurosurgeon out of Georgetown brings as I live close enough that I could follow up there as well.

    I wish I had some magic words of comfort but unfortunately there is not much to say except I am here to listen or lean on when you need some extra support.

     
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    Old 09-19-2015, 08:28 PM   #6
    Davies80
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    Re: possible arachnoiditis diagnosis

    Thank you ♡

    Quote:
    Originally Posted by Moldova View Post
    Drs order dye if they presume something but they weren't able to see it clear on without dye MRI.
    I didn't need dye to see ARC clearly on my pictures. I guess, it all depends...
    Please, dear don't panic. Many of us live normal, fullfiling lives with ARC. Thank God we have Pain Mgmt great Drs who have a lot of options to give us good life quality...

    Wishing you the best,
    Moldova

     
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