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    Old 07-16-2012, 08:34 AM   #1
    topkatnc
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    Are you living with arachnoiditis

    I am new here and was wondering is anyone else living with Arachnoiditis and severe back pain ..

     
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    Old 07-17-2012, 09:03 AM   #2
    Moldova
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    Re: Are you living with arachnoiditis

    Topcotnc,

    Hi and welcome dear to this board of nice people!

    You at the right place here, and right now you are reading a post of someone who lives life with debilitating Arachnoiditis since my first spinal fusion. Yes, they say it can happen from the following tests: Myelgoram, from the preservatives in spinal epidurals and from the surgery. I had many epidurals, but they claim at that time they already changes bad preservatives to a good ones and Myelogram didn't have same dyes... who knows? But mine condition developed right after surgery along with other complications. What a price to pay.
    While it doesn't happen to everyone who gets spinal surgeries, not at all dear people, but my surgery was 10 1/2 hr and was very complicated, so during this time anything and everything may happen. This is why we must sign tong of papers before the surgery, right?

    If you can, may you describe your condition and how you fight it (I am aware it not curable or treatable, but I am on opiates 24/7). How is your life and what your DRs have to say? what is the problem in your spine and did you have surgery too?

    Here for you at any time,
    Moldova

    Last edited by Moldova; 07-17-2012 at 09:04 AM.

     
    Old 07-19-2012, 09:24 PM   #3
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    Arrow Re: Are you living with arachnoiditis

    I've been living with Adhesive Arachnoiditis for 22 long painful years. I am in the midst of a 3 yr long downhill spiral. I had been stable for 19 years when I began having new symptoms, greater pain, muscle spasms - the list is long. That is not to say that the years that I was stable were easy. In the early 90's getting any relief from the medical community. The Drs. were to afraid to prescribe narcotic medication on an ongoing basis, no matter how much pain the patient was in. I was forces to leave a career that I loved. Going on disability reduced my income by 2/3's. My pain level never went below a 5. The pain was deep, sharp, dull, aching, burning, unrelenting. I reached the point that the only relief I could see was death. I had a great support system, including a wonderful husband, a talk therapist who taught me make it thru today. No guarantee about tomorrow, but today I will not end my life. In 1996 I met a Pain management Dr. who implanted the morphine pump. He saved my life. I'm honestly not sure how many more today's I was going to make it thru.

    I have both an implanted morphine pump and a spinal cord stimulator to try to control the pain. I recently turned the stimulator off because it seemed to be making my spasms worse. I am working with Drs. to try to discover if there are any other problems that might be causing my symptoms.

    I've been in a wheel chair for the past 9 months. Just being off my feet has helped to reduce my pain. But it has caused other problems, too.

    This is my first post here. I'm curious to see how many others will reply and add their stories. Each of us will have different things that help our pain, or make it worse. I'm looking forward to a discussion on these things.
    justnd

     
    Old 07-20-2012, 03:26 PM   #4
    Moldova
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    Re: Are you living with arachnoiditis

    I am so sorry on your pain; reading what you posted, I read about myself. I am very surprised that you were able to live life without opiates. I am on them for many years now, but due to body tolerance, they dont work as well as I wish they would. I am 24/7 on Long Acting and BT drugs. And on anti spastic drugs as well. May I ask you where is your spasms occur? Where are they the worse for you and how are they affect you.
    I suppose to take them every day regardless, but I noticed they make me even more tired than I am from all my other health issues and decided to take when spasms happen. But drugs dont work as fast as I wish and to wait for an hour until it starts working, I am in agony.
    Did you have spinal surgery? How did you get this condition?

    If I get a day with pain level 5, which happens very rarely, I feel life is good. I was offered pain pump and got pretty excited about it, but my surgeon was against me having anything invasive claiming that if patient with ARC has something invasive even a pain pump, it may cause more scarring and situation may worsens. I need as we speak 2 more surgeries, I know it would help me if I would, but because of ARC and other serious conditions, doctors afraid to touch me.
    On top of everything I got a pace maker due to heart problem and not pain pump or even Tense Unit or other stimulator are out of questions.

    I feel your pain and the worst part,it not just one spot, it all over the body, it spreads causing so much suffering. My heart goes out to you, please if you feel like talking, you can always write to me , I will be here for you.

    Wishing you better days ahead of you dear person
    Moldova

     
    Old 07-25-2012, 05:27 AM   #5
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    Re: Are you living with arachnoiditis

    Good luck and know there are lots of us here with Arachnoiditis. I have had it since 1995 as a result of a failed L4/L5 surgery followed up with a MRSA infection. I have been through the mill with Meds and devices. Find a good Pain Management doctor and they should be able to help. I have had excellent luck with Avinza. It is a 24Hr morphine and does away with the highs and lows. Again my prayers are with you.

     
    Old 07-27-2012, 06:47 PM   #6
    Moldova
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    Re: Are you living with arachnoiditis

    Justnd,

    how are you doing? I am sorry I wasn't much lately here but I am fighting terrible flair up again, spending all days in bed (not by choice, you know what I am saying).
    Do you have good (very important to have good ) PM Dr? I learned the difference when I met my PM I use for 7 years now; I realized how bad was my first PM and I am glad he is just a history.
    I am not saying that you will be helped. We tried everything, I mean practically what they have available was on and in my body. My PM wishes for me to have pain pump, but I have pace maker. He also trying to avoid any invasion since it causing more scarring. I need 2 more surgeries as we speak, but he is trying to prolong time with doing epidurals. This is only PM DR out of all doctors who did my shots, does it this way and it works well. I know it not for a long time, but who wouldn't want some relieve even for a short time.
    I know ARC has different levels, for some more debilitating then for others, for some it more aggressive then for others. I just know since the time I was diagnosed with it, I progressed "down" very fast.
    I understand dear heart, how hard this on you. I wish you all the best, you one strong person and I hope you will be able to live life with less pain.

    Gentle hugs
    Moldova

     
    Old 07-28-2012, 01:04 PM   #7
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    Re: Are you living with arachnoiditis

    Yep, I had my first disc surgery and laminectomy in 93 and the pain from arachnoiditis and the fact I blew the same discs again led to my first fusion. That initially relieved the pain and then I started breaking the hardware because the fusion didn't take even with a bone growth stim and BMP. Once the vertabrea shifted and started crushing my spinal cord they went back in and spent 6 hours cleaning out scar tissue and another 5 hours rivising and lenghtening that fusion to 7 levels. which eventually failed too. Fortunately I went from leg on fire to no feeling at all down the path a dermatome map shows for L2. I'll take numb over the leg pain anyday. The back pain is another story but its managed with a pump. Their is still a lot I cant do, but the pump is better than the orals and anything is better than PM was in the 90's.
    Good luck, Dave

     
    Old 07-30-2012, 09:41 PM   #8
    justnd
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    Re: Are you living with arachnoiditis

    Moldova -

    My apologies for being absent so long. I see you've been having some problems, also. So you understand my situation. I'll try to answer your questions as best I can.

    My condition began after a discectomy at L4-5 in 1990 when I developed a staph infection in the disk area. It was my 2nd surgery at that level. I had a Lami there in 1985. I've also had a lami at C6-7, and just last year at T11-12. The T11-12 disk was pressing on the spinal cord and the Drs. were thinking it was responsible for a lot of the new symptoms. But with that corrected, I continued to get worse. On top of all of this, I had Thoracic Outlet Syndrome on both sides and had to have the top ribs removed.

    Looking back, I don't know how I survived those years without consistent opiates. There were periods when a Dr. would have pity on me for short periods of time. They would give me T3 or Vicodin for a few months. Then they became concerned about 'addiction' and wouldn't give me any more. I spent hours in a hot tub, mostly to take weight off of everything. I did have a stimulator, which helped the intense burning pain in my left leg, but did nothing for the aching pain in my low back and left leg. I had many epidural and trigger pt injections. It seemed as if all the Drs. were afraid to treat me. There was so much pressure against narcotics in the early 90's, and I'm feeling that pressure every time a celeb gets addicted to or dies from prescription medications.

    I met my current PM Doc in 1996 when the battery for the stimulator died. The Dr. who originally implanted it refused to replace the battery because I was still in pain. Couldn't make him understand that it was helping one kind of pain but not the other. Instead of putting in a new battery for the stimulator, he offered me the pump. I swear he saved my life. I didn't know how much longer I could make it thru today. He also put me on oral morphine for breakthrough pain and baclofen for the spasms. I'm also taking requip at night.

    My spasms started increasing and I began having coordination problems about 2 years ago. I started falling on a regular basis. The spasms are in my legs, much worse in the left leg, my low back. The muscles in my left leg are tight all the time. Worse sometimes than others, with nothing that I can pinpoint to cause them to be worse. About a year ago the spasms began creeping up my back and around to my abdomen. Now they are up into my chest muscles, front and back to just below my shoulder blades and continues to move upward. At times the pain makes it difficult to breathe. The spasms happen spontaneously, usually accompanied by an shout. The spasms might last only a few seconds or several minutes. Almost always leaving a tight, spastic reaction when the main event is over. I also have what I refer to as body spasms. I will suddenly jump for no apparent reason. This can involve legs, back, abdomen, arms, neck, the whole package gives a quick hard jerk, also with a shout and leaving lingering pain mostly in my low back. I'm having tests run on my spinal fluid to determine if any other neurological problems. Getting to sleep is a big problem for me. As my body relaxes, the jerking spasms become more frequent. For some reason, I sleep better sitting up than I do laying down.

    How do the spasms effect me? The pain is the obvious first answer, but there is so much more than that. I quit driving over 18 months ago because I don't know when the spasms will hit and a spasm could cause me to hit the accelerator much harder than I want to. I'm a hazard and don't want to be responsible for causing anyone injury. I'm in a wheel chair, actually a power chair 80% of the time. That is due to spasms and the fact that the signals just don't make it thru the nerve roots at a consistent pace and I cannot guarantee where my foot will be when my body is in position to step forward. I'm a fall risk. I get bruises on my shins from kicking whatever is in front of me when a spasm hits. Those are the main effects.

    I had mistakenly believed that because I had been stable for 15 years, that I would be there the rest of my days. I have no idea what triggered the downward spiral, but it hasn't stopped yet. I had two Myelograms in three months about 18 mths ago. I'm convinced that they accelerated the process. I suffered horrible pain during and after both procedures. I had not fully recovered from the first one when I had the second. I will never submit to another myelogram, NEVER!

    This has become much more long-winded than ever intended. It's difficult to explain these things without some degree of detail. It's also tough to find people who understand what we are up against and let's be honest, no one really want to hear about our pain and all the other problems that go with this condition. I'm part of a chronic pain support group, but I'm the only one with Adhesive Arachnoiditis. My problems are very different from the others in my group.

    I hope your flare-up is calming down. One problem that I have is that a flare-up always leaves me a little worse in some way than I was before. Every flare leaves it's mark. Good luck to you. Thanks for being here.

    justnd

     
    Old 02-19-2014, 08:33 AM   #9
    atgirl
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    Re: Are you living with arachnoiditis

    How did you get arachnoiditis?

     
    Old 02-20-2014, 04:38 AM   #10
    Moldova
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    Re: Are you living with arachnoiditis

    Hi Atgirl,

    this post is very old, not sure if same people still on board but I will try to answer you your question about ARC.
    Arachnoiditis is inflammation of the arachnoid, one of the membranes known as meninges that surround and protect the nerves of the central nervous system, including the brain and spinal cord. The arachnoid can become inflamed because of adverse reactions to chemicals, infection from bacteria or viruses, as the result of direct injury to the spine, chronic compression of spinal nerves, complications from spinal surgery or other invasive spinal procedures, or the accidental intrathecal injection of steroids intended for the epidural space.[1][2] Inflammation can sometimes lead to the formation of scar tissue and adhesion that can make the spinal nerves "stick" together. This can be extremely painful, especially in last stage adhesive arachnoiditis.

    Some people can get ARC during surgery (my cause). Many years ago they used Preservatives in Epidural shots which could cause ARC as well.
    Than the dye in Myelogram test; they used to use the dye which could cause the damage.
    According to FDA no dye or preservatives can cause ARC anymore, but I still would talk to my Dr before having these 2 tests done.

    ARC shows well on CT scans or MRI. Still, many doctors not familiar with it and I met people who suffered with it for many years, it was very well seen on scans, but their Drs didn't know what this is until they went for second and more opinions to finally get right diagnoses.

    Hope this helps a little.
    Have a nice day

    Moldova

     
    Old 02-20-2014, 06:36 AM   #11
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    Re: Are you living with arachnoiditis

    Quote:
    Originally Posted by Moldova View Post
    Hi Atgirl,

    this post is very old, not sure if same people still on board but I will try to answer you your question about ARC.
    Arachnoiditis is inflammation of the arachnoid, one of the membranes known as meninges that surround and protect the nerves of the central nervous system, including the brain and spinal cord. The arachnoid can become inflamed because of adverse reactions to chemicals, infection from bacteria or viruses, as the result of direct injury to the spine, chronic compression of spinal nerves, complications from spinal surgery or other invasive spinal procedures, or the accidental intrathecal injection of steroids intended for the epidural space.[1][2] Inflammation can sometimes lead to the formation of scar tissue and adhesion that can make the spinal nerves "stick" together. This can be extremely painful, especially in last stage adhesive arachnoiditis.

    Some people can get ARC during surgery (my cause). Many years ago they used Preservatives in Epidural shots which could cause ARC as well.
    Than the dye in Myelogram test; they used to use the dye which could cause the damage.
    According to FDA no dye or preservatives can cause ARC anymore, but I still would talk to my Dr before having these 2 tests done.

    ARC shows well on CT scans or MRI. Still, many doctors not familiar with it and I met people who suffered with it for many years, it was very well seen on scans, but their Drs didn't know what this is until they went for second and more opinions to finally get right diagnoses.

    Hope this helps a little.
    Have a nice day

    Moldova
    Yes I know how you get it. I am pretty sure I have it. My feet are cramping and burning so much they hurt so bad.

     
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