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    Old 04-02-2006, 08:48 PM   #1
    lfoster21
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    Wink Arachnoiditis..info. needed

    Does anyone here have this disorder? I have just learned about it and thedescription that I read seems to be identical to the symptoms that I have. I am wondering if a Neurologist would be the type of Dr. to Dx. it. Can a fusion help lessen the pain, if it is from Arachnoiditis?

    Any info. would be greatly appreciated.

    Lorie
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    Old 04-03-2006, 12:51 AM   #2
    Bionicwan
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    Re: Arachnoiditis..info. needed

    I have it.

    My PM doc dx'd me - however I believe so could any good Neurologist.

    Arachnoiditis describes a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the spinal cord. The arachnoid can become inflamed because of an irritation from chemicals, infection from bacteria or viruses, as the result of direct injury to the spine, chronic compression of spinal nerves, or complications from spinal surgery or other invasive spinal procedures. Inflammation can sometimes lead to the formation of scar tissue and adhesions, which cause the spinal nerves to “stick” together. If arachnoiditis begins to interfere with the function of one or more of these nerves, it can cause a number of symptoms, including numbness, tingling, and a characteristic stinging and burning pain in the lower back or legs. Some people with arachnoiditis will have debilitating muscle cramps, twitches, or spasms. It may also affect bladder, bowel, and sexual function. In severe cases, arachnoiditis may cause paralysis of the lower limbs

    The usual causes of spinal arachnoiditis are:

    1. Infections like tuberculosis, AIDS, fungus

    (cysticercosis) and meningococcus, etc.

    2. Dyes used for myelograms like pantopaque, metrizamide, omnipaque, etc.

    3. Blood entering the spinal sac, i.e. from subarachnoid hemorrhage, epidural
    blood patches, bleeding from anticoagulants, etc.

    4. Spinal surgery, mostly from rents (recognized or unrecognized) of the dura
    with blood entering the sac (this is the most common cause today),direct
    SC or nerve root injury.

    5. Irritant compounds injected into the sac such as hypertonic saline, phenol,
    methotrexate, hyaluronidase, papain, etc.

    6. Preservatives contained in some medications injected into the spine such as
    polyethylene glycol, benzylic alcohol, para-aminobenzoic acid, etc.

    7. Traumatic injury to the SC or the brain may result in bleeding into the CSF,
    nerve tissue damage or avulsion. Even needle punctures causing paresthesia
    on the nerve roots or the SC (from peridural, spinal anesthesia or other nerve
    blocks) may cause ARC.

    FUSION (or ANY surgey) will NOT help with this hideous condition!!!
    and sadly, in some cases, SURGERY - is the cause!

    I wish you well ~

    Last edited by Administrator; 04-07-2012 at 12:20 PM.

     
    Old 04-03-2006, 01:49 PM   #3
    lfoster21
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    Wink Re: Arachnoiditis..info. needed

    Thank you for all the info. How do they Dx. this from not just being sciatica, failed fusion or pinched nerves. Is it something they find on films? I will be going in for my 3 level fusion and lamienctomy in 2 weeks. My back and legs are becoming almost unbearable with the constant pain in my back and legs. I have the burning legs and tingly feeling in my feet and shins. I also get the electrical shocks shooting down my bum and my legs. (and of course the constant pain in my L. back). So far, my Dr. says I have a pinched nerve and the leg pain is sciatica. Is there a difference between Siatica and Arachnoiditis?

    Sorry this is so long,

    Lorie
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    Old 04-03-2006, 05:47 PM   #4
    carol632
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    Re: Arachnoiditis..info. needed

    Lorie, there is a huge difference between the 2. Arachnoiditis can not be cured or fixed whereas sciatica can be. I think it would be a great benefit for you to do some reading and learn a bit about the disease. There is a vast amount of information on the web about arachnoiditis.

    Carol
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    Old 04-03-2006, 06:11 PM   #5
    lfoster21
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    Wink Re: Arachnoiditis..info. needed

    I agree and I have been reading a lot about it, but everything I read says the same things. It tell the symptoms...(which are the same as the ones I have) and that it is a lifetime disorder. I've learned what exactly causes the pain but I can't find anything that says how it is diognosed or determined whether it is arachnoiditis or sciatica. But I will keep searching Thanks for the insight and if you by chance know how it is determined which you have...I'd sure appreciate the info.

    Thanks again,
    Lorie
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    Old 04-04-2006, 01:38 AM   #6
    Bionicwan
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    Re: Arachnoiditis..info. needed

    I was diagnosed by my PM - and the condition confirmed by an MRI.

    Diagnosis is generally made by taking a history rather than clinical examination, because this syndrome does not have any specific typical picture and many of the features fit the criteria for generic chronic pain syndrome and/or FBSS. {failed back surgery syndrome}

    Arachnoiditis can be detected by the presence of a slimy substance viewable on MRI films - to me personally it looked "fatty like" there is also a type (which I believe to be more serious) called "Adhesive Arachnoiditis" -
    a more severe condition.

    I haven't a lot if info to offer you as I am still learning and researching this myself.
    I would not wish this condition on my worst enemy and from what I gather there really is NO CURE - just treatment of the symptoms

    I agree with Carol wholeheartedly > RESEARCH !!!!
    Just use any search engine. There are MANY informative sites and articles that I have found and also many forums where you can tons of info as well as helpful insight on the diagostic tests available and treatments offered.

    Last edited by Administrator; 04-07-2012 at 12:20 PM.

     
    Old 04-04-2006, 01:14 PM   #7
    lfoster21
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    Wink Re: Arachnoiditis..info. needed

    Thanks alot. That is exactly what I needed to know. After my surgery, if things dont get better, I will ask for an MRI. My mind is numb from all this research I have been researching CES and Arachnoiditis for the past several weeks. I am wiped out...but I will continue

    Thanks again,
    Lorie
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    Old 04-05-2006, 04:18 PM   #8
    Suzy-Q
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    Re: Arachnoiditis..info. needed

    Hello -
    I'd like to jump in on this thread. I have had definite nerve/sciatic symptoms for more than 2 yrs now. I would say they are not nearly as severe as what you'all describe. But I have been wondering why my doc has never even mentioned neurontin or topamax or any other nerve medication to me - ever. As it turns out, my recent EMG/SSEP test was perfectly 'normal' or negative or whatever the right term would be to say no nerve damage. But this week I am having a terrible time with the old left bum pain and it occurs to me to ask: what do docs do to decide if neurontin and the other Rxs would help a patient? Do they just Rx it and see if it helps or do they have to have certain Diagnostics before Rxing it?
    I have been having to put in long hours at work and so my nights are kind of short. I keep an eye on you all and read the board every day and my thoughts are often with you. I do hope this surgery is the 'charm' for you Lorie. Take good care - Suzy-Q

    Last edited by Administrator; 04-07-2012 at 12:20 PM.

     
    Old 04-05-2006, 04:52 PM   #9
    lfoster21
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    Hi Suzy-for me, the Dr. perscribed the Neurontin when I started with the sciatica pain down my bum and legs. (It wasn't until my pain went past my knees and down to my feet). He said that is how you can tell if it is sciatica. I hope things are going well for you, esspecially now that you are working a lot. I have been wondering about you latly. It's nice to hear from you.

    Hugs and prayers,
    Lorie
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    Old 03-07-2009, 09:30 AM   #10
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    Re: Arachnoiditis..info. needed

    hi Bionicwitch, you must be a bionic woman to survive this insideous disease. i too have arachnoiditis and have survived 15 years of it so far but i dont know if i will ever be free of pain due to problems accessing appropriate meds even though i have been diagnosed several times now backed up with an mri showing my dura torn in 3 places, (from the 3 attempts the radiologist made to insert the needle) records of the blood patch i needed, x-rays showing white liquid around my brain (dye used in the c.t myleogram) and even a thermogram showing large hot areas all around my spine. have you required any evidence like this? and do you know of any other tests to diagnose this, since dr's seem to dismiss other dr's diagnosis in my experience and cannot comprehend how much pain i am in. how did you find a dr to believe you? if you dont mind me asking; did you get this from medical misadventure and have you ever successfully claimed for it?
    regards Jai

     
    Old 03-07-2009, 09:48 AM   #11
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    Re: Arachnoiditis..info. needed

    Usually surgery is not pursued if arachnoiditis is shown to be present. Surgery can make arachnoiditis worse so as my own neurologist told me surgery is out. Arachnoiditis can be shown on a mri.
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    Old 06-05-2009, 03:02 AM   #12
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    Re: Arachnoiditis..info. needed

    Hi Jai.I started with Adhesive Arachnoiditis in 86.I had a CAT scan because of migrains and the Neuro Specialist actually asked me if I'd had the Mylogram in the 70's because there was a "Substance " at the base of my skull!!However after me confirming my Mylogram he put my Migrains down to Depression I've found over the years that most AA patients have gone through all the usual,Orthos,Neuro's,Shrinks! etc.I've had Viral Meningitis twice,my Ulnar nerve 's moved,a DVT on my lungs and in 2000 I had a big stroke.Through all these years AA has never been mentioned(it has by me!) even though with numerous MRI's I've been told that there was a "substance" hindering the view and had to have a water based dye injected,then have the scan done again,this happened on 4 outof 6 MRI's I had.Then in 91 I was registered Disabled and told it was Fibromyalgia and "Oh Arachnoiditis"!.It still wasn't accepted by numerous GP's etc.I use a stick but now have a wheelchair and this last few weeks my left foot has dropped so the stick is being used less and less and the wheelchair looks like a permanant feature in my life now.Then last week I had an appointment with a Neurologist,following a CAT scan and MRI.I was in for just 5 minutes and he suddenly said "you do know that all your problems with Neuropathy etc is all to do with your ADHESIVE ARACHNOIDITIS "!! to say I was in shock is an understatement,it's taken 26 years to actually tell me face to face.I even heard him dictate the letter to my GP telling him the same.I know theres no treatment and things are unlikely to change,but it's going to be interesting on my next visit to my Doc when I say "so I was right all along!".All I can say about AA is take a day at a time! I know thats a cliche but no two days are the same with this hideous disease! Try and keep your sense of humour,[email protected] reached 60 and am determined to be here to see Grandchildren!Take care,Ginnie xx

    Last edited by ginnie60; 06-05-2009 at 03:04 AM. Reason: spelling !!

     
    Old 01-11-2010, 02:25 PM   #13
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    Question Re: Arachnoiditis..info. needed

    Quote:
    Originally Posted by ginnie60 View Post
    Hi Jai.I started with Adhesive Arachnoiditis in 86.I had a CAT scan because of migrains and the Neuro Specialist actually asked me if I'd had the Mylogram in the 70's because there was a "Substance " at the base of my skull!!However after me confirming my Mylogram he put my Migrains down to Depression I've found over the years that most AA patients have gone through all the usual,Orthos,Neuro's,Shrinks! etc.I've had Viral Meningitis twice,my Ulnar nerve 's moved,a DVT on my lungs and in 2000 I had a big stroke.Through all these years AA has never been mentioned(it has by me!) even though with numerous MRI's I've been told that there was a "substance" hindering the view and had to have a water based dye injected,then have the scan done again,this happened on 4 outof 6 MRI's I had.Then in 91 I was registered Disabled and told it was Fibromyalgia and "Oh Arachnoiditis"!.It still wasn't accepted by numerous GP's etc.I use a stick but now have a wheelchair and this last few weeks my left foot has dropped so the stick is being used less and less and the wheelchair looks like a permanant feature in my life now.Then last week I had an appointment with a Neurologist,following a CAT scan and MRI.I was in for just 5 minutes and he suddenly said "you do know that all your problems with Neuropathy etc is all to do with your ADHESIVE ARACHNOIDITIS "!! to say I was in shock is an understatement,it's taken 26 years to actually tell me face to face.I even heard him dictate the letter to my GP telling him the same.I know theres no treatment and things are unlikely to change,but it's going to be interesting on my next visit to my Doc when I say "so I was right all along!".All I can say about AA is take a day at a time! I know thats a cliche but no two days are the same with this hideous disease! Try and keep your sense of humour,[email protected] reached 60 and am determined to be here to see Grandchildren!Take care,Ginnie xx
    Ginnie,
    Hope this finds you! I was dx 4 years ago with AA and am still searching for some relief. I cannot tolerate narcotic pain meds, so a morphine pain pump was not an option. My PM dr. wants to try a non-narcotic pain med called prialt as a single shot trial, with an intrathecal pump implant if it helps me. Do you know anything about this medication? I am not sure about trying it.
    God's grace be with you!
    Thanks,
    Chris

     
    Old 01-12-2010, 05:37 AM   #14
    ginnie60
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    Re: Arachnoiditis..info. needed

    Hi Chris I haven't heard of quite a few Medications that are used in the States.Seeing the Neurologist was a good move as far as I was concerned,even though I've accepted nothing can be done about the actual Arachnoiditis!At the moment I'm on Nortryptoline,this is helping me get some sleep but not doing anything for the pain in my feet and legs,but I'm going to try a higher dose in a few weeks.All I really rely on now is trying to relax which isn't easy I know.A couple of friends have started Tai Chi and say it's helping them.I hope you get some relief,I definately think being refered to a Neurologist would be a step in the right direction and certainly wouldn't do any harm.Good luck,although it's very hard try and be possitive and keep your sense of humour!!All the best,Ginnie x

     
    Old 01-12-2010, 10:10 AM   #15
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    Re: Arachnoiditis..info. needed

    My cousin has this exact condition.. she was relegated to a wheel chair until she had an opiate pump implant. Now she leads a functional life.

    I talk with her alot because she is my only family member who can understand / empathize with my pain issues.

    I'll see if I can get her to post some information for you.

     
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