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  • vascular nerve pain?????????? arachnoiditis??

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    Old 12-07-2007, 06:20 PM   #1
    yvette777
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    vascular nerve pain?????????? arachnoiditis??

    someone posted about this and said maybe thats why the topomax helped me, I am so confused no doctor has ever said that to me, never even heard of it. I have heard neuropathic claudification, neropathic nerve pain, peri-somethign nerve pain. i've heard the pain is from the damaged disc (which post op fusion the disc is gone but the front is still in there) didn't know that.

    Never had nerve impinged had major ddd with spondy. He said wasnt surprised at all of nerve pain with just constant irritation of nerves from damanged discs and mircromovements or something. well the fusion didn't solve it. i sitll have the same nerve pain, the fusion was L5S1.

    Nerve pain is vaginally legs primarilly left both feet, burning, stinging hurts different variety of locations and pains, gets really bad where I want to cut off feet, it is lowered alot now with topomax. At one point left leg would just quit working it still acts up if i walk very far, yet no nerves impinged go figure.

    Never had an emg, or anything, he's never ordered one. I do know that i now have a bulging disc at the lvel above and the other disc are degenerating I read that myself but he didn't mention it (go figure) He is sending me in for injetions.

    I was reading about arachnoiditis...I think maybe I have it..I wonder if It shows up on an MRI and if he would know if I have this.

     
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    Old 12-08-2007, 03:43 AM   #2
    Chris54
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    Re: vascular nerve pain?????????? arachnoiditis??

    Arachnoiditis showed up at a level above my surgery. L/4-S1 fusion. Showing at L3/L4. Didn't show up on Myelogram that was 5 months post-op, but showed up on MRI/contrast at 9 months. Myelogram shows bone spurs only at that level. My surgeon thinks the pain in my lower back is from the hardware and the continued nerve entrapment at L4, L5, and S1. EMG nerve test showed the S1 as the real trouble maker. I had saddle anesthesia, urinary retention and bowel retention right after surgery. The horrible pain I feel now started about 3 months post-op. I had a plate put in the front to stabilize for the slight spondy and to keep the fusion area from moving. Hardware was put in from the back. I have chronic pain 24/7. Arachnoiditis shows up on my MRI/contrast test as clumping of nerves with appearance of possible Arachnoiditis. It is suppose to have symptoms of stinging, burning and pain in back and legs. I don't have this as much as just hard core pain. My lower back, buttock, groin, legs and clear down to the soles of my feet. I hope you get some answers on your nerve issues. You need answers on that other disc also.

     
    Old 12-08-2007, 06:21 AM   #3
    yvette777
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    Re: vascular nerve pain?????????? arachnoiditis??

    I sat up reading about the arachoiditis last night and it sure seems I have the symptoms....this is strange. My surgeon is vary vague...with me. He is the nicest guy in the world. I am sure he takes it all in. I am still in the year time frame as well, At the last appt a few weeks ago, he told me he really needs me to get medicare (now I only have medicaid and that greatly affects what he can do for me tests, care etc)

    He told me going in that I could be living with this nerve pain the rest of my life...go figure arachnoiditis would be one of the reasons when you read aobut it...as well.

    Burning and stinging are one of my major symptoms vaginally through to my feet, my left leg produminatley but both legs and pre op and post op my left leg will want to just quit, yet I have no nerves impinged. If I try to walk alot etc.

    I have had many injections. Actually a damn epidural during childbirth and the damn hosptial not c-sectioning me 18 years ago is what caused the beginning of my back problems so go figure I've had many.

    In the last year pre-op i had a bunch of jerks give these shots and treated me like crap..I had no insurance.

    When I first met the surgeon I told him that I was also having a new symptom that was (not having this now) my feet were always ice cold I would have three pairs of socks on and a heating pad and they would still be cold. He laughed and said oh thats not related thats a woman thing. Although I dont' know if I told him about the three pairs of socks etc.

    I have never been like that. But when I just read the symptsoms that was one of them.

    Ok I know I have to much time on my hands but now I am freaking out, the reason why...he is wanting to send me for an injection.

    LAst night I emailed the nurse, who doesnt' like me and told her that I keep forgetting to tell the surgeon that I am still leaking bladder, and it is a common occurrence to hear around the house, damn I peed my pants again. I am 37. I also reminded her, that I had went to the ER before surgery because of full loss of bladder and had been checked for Cauda Equina by neurologist. I also reminded her that I just had a full checkup by the girl doctor and a full physical by my family physician. I hope they take all these symptons in to consideration.

    I don't know what the symtoms are with arachonditis with urinaryar and bowel problems, but that is my urinary problems.

    Ok I am rambling and freaking out.

     
    Old 12-08-2007, 06:29 AM   #4
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    Re: vascular nerve pain?????????? arachnoiditis??

    Hi guys, I get alot of burning up my back but I have attributed it to inflammation. ?????

    I also experience the sensation when standing up alot that I am going to go to the bathroom and I am to stop it then I run to the bathroom and go. I have not mentioned it to my doctor. I keep meaning to but I forget. Is this normal after back surgery or something I should be concerend about?

    Hopefully Moldova will respond. She was just diagnosed with this.

    Last edited by ms_west; 12-08-2007 at 06:30 AM.

     
    Old 12-08-2007, 08:14 AM   #5
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    Re: vascular nerve pain?????????? arachnoiditis??

    Yvette, you mentioned having cold feet as a new symptom. Just wanted you to know when I had a severe sciatic flare this spring in my left leg & foot, my left foot and toes were totally ice cold. Even though didnt have any feeling in most of my foot, I sensed the coldness, plus I could feel how icy it was when touching my foot with my hands. My right foot was warm and fine. I had forgotten to mention it to my surgeon when I went for an appt, but I did some research on med sites about this & did find that this can happen with severe nerve impingment. Of course it can also happen from reduced blood flow.

     
    Old 12-08-2007, 08:57 AM   #6
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    Re: vascular nerve pain?????????? arachnoiditis??

    Hi everybody! Since I was diagnosed with ARC I hope I can be helpful to you all too.

    ARC does not diagnosed just by symptoms. Usually CT, MRI and myelogram (the above with cotrast) shows from mild to severe scaring of spinal cord and nerves. It shows like a "clumbsy" mass, looks like bunch of tissue+nerves in one big fat piece (depends on severety).
    Symptoms is severe pain: back, very deep-deep pain and legs, feet, toes, bottocks, legs. Severe spasms, not crumps but spasms. My leg from the knee down goes inside and all leg jerks, and hurts so bad, lasts so long that makes me scream. Sometime spasms come to the foot and toes - also changes the shape the way my toes and foot is. So scary, but I can't control it.
    Also severe bowel and bladder problems (not only retention) but you absolutely loose control of it am or pm.
    Burning and other type of symptoms can be related to this condition too, but also it could be just a nerve damage.
    ARC condition don't stay the same, gets progressively worse, and no meds which can help with this type pain in a future.

     
    Old 12-08-2007, 11:05 AM   #7
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    Re: vascular nerve pain?????????? arachnoiditis??

    CRAP!!! Well I am so sorry you have this!!! It does not sound fun, and I hope to god I dont' have it. With this spine stuff, we can have many things it seems that sound similar and intertwine.

    When you talked about muscle spams etc It reminded me of all the times when my big toe on the same foot that would just start bending down like it was possed by the devil and it would hurt so bad, You could watch it. Thannkfully that hasn't been happening for awhile.

    Maybe I do just have nerve damage...however never had a nerve impinged..who freaking knows I am so confused...ya know, no nerves impinged but major nerve pain and all these symtpoms...Post op surgery nine months now..oh how time flys when your haveing fun...and here I am in the same position...

    Either way I do not want them shoving a damn needle in there, it doesnt sound liek its worth the chance, I am scared of this.

     
    Old 12-08-2007, 11:24 AM   #8
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    Re: vascular nerve pain?????????? arachnoiditis??

    Yvette, we pray that you do not have this either. And as far as needles in the spine....after my last nerve block it will take a long, long time before I would agree to one again. I don't think they adequately warn that you can end up with mroe problems then you started with.

     
    Old 12-08-2007, 11:50 AM   #9
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    Re: vascular nerve pain?????????? arachnoiditis??

    Yvette, I also have been diagnosed with arachnoiditis. I'm the one who first saw it on my MRI-then my neurosurgeon confirmed it. I have bi-lateral leg pain and severe lower back pain that is made worse by standing/walking. I'm like an egg timer-can stand or walk for only 8-10 minutes, then intense pain drives me down to sitting or laying down position.

    Any invasive procedure, including ESIs, has the potential to cause more scar tissue and clumping of nerves and further disability. For some, it is progressive, others seem to "plateau" at a certain level of pain and disability. It is considered a disability by Social Security Administration.

    My neurosurgeon had my films up on the viewer and was contemplating a fusion operation, but still couldn't see where my leg pain was coming from. I asked him to put all the axial views up at once and to see if he saw any nerve clumping. He said, "yes, you have arachnoiditis". He then stopped any talk of surgery and referred me to PM. I had never heard of arachnoiditis until I read the post by Moldova around 10/9/07. I am thankful for this forum since I might never have found out about A. I hope you don't have it Yvette, but it's good to know what your diagnosis is , in any case. There are a couple folks who got the disease from ONE botched-up epidural during childbirth. It all depends on your personal tendency to form scar tissue.

    Last edited by moderator2; 12-08-2007 at 01:30 PM. Reason: disallowed website

     
    Old 12-08-2007, 01:09 PM   #10
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    Re: vascular nerve pain?????????? arachnoiditis??

    Hi Vette, I heard that nasty word from the last spine surgeon I saw earlier in the year. He said if I had it the MRI with the contrast would be able to indicate if this was the case. THANK goodness, I did NOT! The idea of having ARC is not something I would wish on anyone. I hope that you do not have this.

    But an MRI with contrast is said is a good way to see if you have any.

    Since I continue to have some pain, which varies, they contemplated injecting my SI joints (again) and then my facet joints, then possibly removing the hardware, yada yada.

    Since I am not that bad off, I chose a different route, as I have been allowed by my docs so far. I know that with each time they get in there and mess around, increases odds of ARC. So I asked if I could just remain on my low pain dosage for now and if I get any worse, then go more invasive. So far so good for me (with fingers crossed), I am status quo.

    My GP runs my bloodwork every 6 mos to make sure no organ damage is evident and so far.. so good!

    So
    As to the cold feet, have you had a doppler sonogram done on your legs and feet? You may have a vascular issue where you are not getting proper circulation there? I had this checked, and I had good venous flow. Something to ponder.

    I wish you relief from your pain and that you do not have ARC. Stay strong!
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    A Success, but still improving!

    Last edited by Justoneofus; 12-08-2007 at 01:21 PM.

     
    Old 12-08-2007, 01:49 PM   #11
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    Re: vascular nerve pain?????????? arachnoiditis??

    Yvette,
    as you know by now there are couple of ways to get ARC. One of them and most common one is during surgery. Blood goes in a sac and this causing scaring.
    Another way- is dye from injection during Myelogram. Even though they use a different one, more mild one nowadays, it's still can cause the same problem.
    And of course, preservatives in a steroids shots can cause this condition.

    My Dr believes that it happened during surgery. Why? He said that damage shown is more far gone than it would be from Myelogram and spread faster than it would be after myelogram or shots (surgery was 21 month ago and myelogram was 9 month ago).

     
    Old 12-08-2007, 05:40 PM   #12
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    Re: vascular nerve pain?????????? arachnoiditis??

    This has been going on since before my fusion, just didn't cure it. But I had many injections before surgery. My latest mri did talk about scar tissue but I dont' remember what it said but I still think this was soemthing presurgical hopefully not that, either way I am wondering if its ever going to go away.

     
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