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  • New to Arachnoiditis - need advice

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    Old 05-30-2014, 06:54 PM   #1
    BsNanny
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    New to Arachnoiditis - need advice

    My name is Kelly. I am 52. I have had a lum lami with 2 CSF leaks requiring 2 dura grafts, a lumbar fusion, a cervical fusion, ESIs and a discogram in the past 7 years. In 2009 I had an MRI that showed Arachnoiditis. My Dr told me it was insignificant. I went on to have my lumbar fusion in 2010. In 2011 I began to have lower back pain again as well as numbness and tingling in my legs and feet. i was seen by pain mgmt and received 2 ESIs. I felt a little better until Fall of this past year when I began to experience the lower back and leg pain again. I was put on steroids but had no relief. In Feb of this year myFP ordered a CT Myelogram. It showed "clumping of nerve roots with adhesion consistent with Arachnoiditis" at the 2 levels of my fusion. Also moderate narrowing of foraminal opening at C4. I saw Pain Mgnt last month and was told Arachnoiditis was simply a term for inflammation of the meninges and was told I needed 2 Caudill Injections. Since the CT Myelogram I have increases lower back pain, constant, burning and numbness in different parts of my feet on different days as well as new burning pain in my arms, shoulders, and thoracic area of my spine. Also jerking and twitching og my legs when lying down. Also extreme fatigue I have never known.
    Do I have AA?? Did the CT Myelogram make it worse?? Where can I find a Dr who validates this condition and has knowledge to treat this??

     
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    Old 05-31-2014, 08:21 AM   #2
    gmak
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    Re: New to Arachnoiditis - need advice

    Hi bsnanny, I have adhesive arachnoiditis after 4 lum lams with csf leaks & dural grafting too & esi's, etc & i had a pm dr tell me arachnoiditis is inflammation of arachnoid membrane but adhesive arachnoiditis is when the spinal nerves inside the thecal sac are clumped & adhered together with scar tissue, i had clumping on MRI's since 1988 but finally told by a spine neurosurgeon that i had adhesive arach in 2012 & he ordered MRI & it actually showed peripheral clumping of nerve roots & tethered cord & i saw 2 other spine neurosurgeons that confirmed adhesive arach & said i can have no more invasive spine procedures, epidurals, spinal taps, myelograms, surgery, etc because it can disturb the spinal nerves & actually cause worsening pain & symptoms & my sp nerves are adhered completely to my dura & a lumbar puncture like for myelogram could potentially sever a nerve with needle insertion through dura to obtain spinal fluid or put in contrast & there is no surgery to repair the damage & the only treatment is to try to relieve the pain & neuropathy symptoms. After diagnosed i researched aa & feel fortunate that these drs did at least know what aa is because it can be a hard task finding a dr knowledgeable about it. It can be caused by surgeries, medicines & dyes introduced into spinal fluid on purpose or by accident. For example, the grafting on the dura i had or an irrigant used during surgery or if epidural injections go through dura into spinal fluid & i had so many procedures of course it would be impossible to know which one possibly caused it.. The cauda equina nerves or spinal nerves have an inflammatory reaction that causes them to swell pushing out CSF,swelling creates pressure cutting off blood circulation & scar tissue forms & sticks the nerves together at first then adheres them to dura and the nerves are constricted and scarring puts extreme pressure on spinal nerves/ cauda equinacausing neuropathy symptoms, i have numbness in feet, shooting electricity like pain, charley horses, cramps, twitching & jerks but very mild in my legs . Im so sorry that you have such bad pain! I didnt know for years & years why i hurt so badly in my back until finally told in 2012. I truly hope that you dont have aa, it is not a condition that all drs know about but a spine specialist neurosurgeon may be able to help. If you have any questions i would be happy to try to answer them if i can. There are several members that have arach here & are very knowledgable & helped me so very much when i first came to healthboards.

    Last edited by gmak; 12-21-2014 at 07:16 AM.

     
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    Old 12-02-2014, 08:06 AM   #3
    nlslc40
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    Re: New to Arachnoiditis - need advice

    Hi I am also new to aa, my doc called me thanksgiving eve, with that news . I've been in pain for 7 years. I had lumbar fusion 2 years ago and a pain pump put in this year. Multiple epidural injections, over the years. The pump was working ok. So I went back to work. Mistake, pulled my back and was in excruciating pain. Could not get help from any doc. My physio.dropped me because I went to work med. So a month and a half of bed. At any rate. I finally ended up at a pain clinic, where I had to tell the doctor to do a dye test on my pump, and then an mri.This is weeks w/o anything for pain. Besides the pain pump, which was doing nothing. The mri showed aa he said my nerves were clumped in a ball. I assume that is aa.I'm also having burning and tingling in my feet, and my hands go numb.I have read that epidural injections is where most people are getting this disease from. Tainted steroids. Any suggestions wld b great. Also I hope this helps someone.

    Last edited by nlslc40; 12-02-2014 at 08:09 AM.

     
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    123rsdsufferer (01-11-2015)
    Old 01-10-2015, 10:51 PM   #4
    123rsdsufferer
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    Angry Re: New to Arachnoiditis - need advice

    Quote:
    Originally Posted by nlslc40 View Post
    Hi I am also new to aa, my doc called me thanksgiving eve, with that news . I've been in pain for 7 years. I had lumbar fusion 2 years ago and a pain pump put in this year. Multiple epidural injections, over the years. The pump was working ok. So I went back to work. Mistake, pulled my back and was in excruciating pain. Could not get help from any doc. My physio.dropped me because I went to work med. So a month and a half of bed. At any rate. I finally ended up at a pain clinic, where I had to tell the doctor to do a dye test on my pump, and then an mri.This is weeks w/o anything for pain. Besides the pain pump, which was doing nothing. The mri showed aa he said my nerves were clumped in a ball. I assume that is aa.I'm also having burning and tingling in my feet, and my hands go numb.I have read that epidural injections is where most people are getting this disease from. Tainted steroids. Any suggestions wld b great. Also I hope this helps someone.
    I feel your pain and feel like I was supposed to see your post my friend. You will see once you read my post reply below that you painted my picture to a "T". Its erie how our stories are so similar. Here it is:
    1. 5 failed spinal fusion surgeries w/ hardware L3 thru S2;
    2. during trial of stimulator insertion, T12 was hit resulting in spinal cord injury and sympathetic nerve chain (RSD) injury;
    3. Out of desperation for relief, Medtronic pain pump implanted 5 yrs ago;
    4. Took 1 to regulate meds and obtain coverage
    5. Return to work part-time and felt like life was amazing as I could lift things and work 8 hrs on feet;
    6. Then wam bam the Nerve pain begins running the dermotone pathway of L/1 and L2 across the lower back, into the abdomen, thru the groin area, inside the thigh and the foot. Why has it reared its ugly head?
    7. The depicts MRI shows spinal nerve clumping/swelling at L1/L2
    is horrific. My pm keeps asking me if I am having bowel/bladder problems? Thank GOD I don't at this point.

    Now I sit in fear wondering what the heck I did to myself? The pain pump allowed me to get out and live again and for that I will be forever grateful for. However by overdoing and being super woman, I wonder if I will get my life back? Will my pump feel like it is working again? Did I give myself this arachnoidititis as a result of pushing myself and overdoing?

    Sound familiar? Scared Straight? YEPPERS.

    Last edited by 123rsdsufferer; 01-10-2015 at 11:02 PM.

     
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    Old 01-13-2015, 08:50 AM   #5
    Jodimae
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    Re: New to Arachnoiditis - need advice

    Hello,

    I too have AA. It stinks, period! I don't understand all of the abbreviations you use in describing you procedures. My arachnoiditis began after my 3rd spinal surgery. I have recently started seeing a new pain doc. He increased my neurontin and put me on a high dose of muscle relaxant. It seems to help a bit. I have tried everything.

    Please translate the procedures you have had. I'm curious! How many mylegrams have you had? If you read anything on line about Arachnoiditis you will see mylegrams as one of the possible causes....

    Jodi.

     
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