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  • Is it for real, I finally found? :-)

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    Old 09-25-2013, 08:34 AM   #1
    Moldova
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    Is it for real, I finally found? :-)

    Hi guys,
    I spent so much time searching for ARC board and finally I am here. Don't even know why it was so hard!
    So here I am; a person who went to have my first spinal fusion which failed (it was 10 hr very complicated surgery) and ended up with a lots of nerve damages, severe ARC and a lot more... Further surgeries never helped and added more problems.
    I went through everything everyone else does: fear of unknown, anger, a lot of research, asking million of questions, tons of different treatments and finally I accepted and know that nothing else can be done. I can only get worse (yes, I am realistic and also ask my doctors for honesty) but never better. Unfortunately my "worse" is getting worse by month now, but thank God for pain medication which takes the edge off on a better days, for great support of my family and friends and guys on this wonderful boards.

    I wish you all well, less pain for you.
    Hugs, Moldova

     
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    Old 09-26-2013, 05:59 PM   #2
    gmak
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    Re: Is it for real, I finally found? :-)

    Hi moldova, I had 4 lumbar surgeries at L4-5 & L5-S1 but the MRI shows I have arach from L3- caudally & i have a tethered upper spinal cord pulled down from L1 to L3 & wondered at what level or levels you have ARC & if you have any info about how it spread up to L3 & down to the caudal or tailbone area on me? Im so glad to speak to another arach person. Alhough we certainly arent defined by it!Lol Im so sorry that your life has been affected by this terrible condition & pain medicine & lyrica are my "lifeboats" too! When i found out i had arach I had had it for 24 years, the neuropathy symptoms just started last year but 3 toes completely numb both feet & i have muscle cramps in feet, legs feel like they are so cold but are warm to touch & i was wondering if you think that might be slow progression or fast progression because its all occurred in the last year.

    Last edited by gmak; 09-27-2013 at 08:55 AM.

     
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    Old 09-30-2013, 12:51 PM   #3
    Moldova
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    Re: Is it for real, I finally found? :-)

    I know exactly how you feel. Last night I was watching TV with my husband and son and all of a sudden I screamed like a crazy woman: the feeling of a bug crawling around my ankle was so real... They got scared for a moment once again but they kind of got used to it. I do it all the time; you would think by now I am used to feeling as well as "hot water" running down my legs but each time it happens, I am scared.
    I absolutely can't stand bugs, this also contributes to my fear each time I feel it "crawling".
    I read about different stages of ARC; many people live with it not even knowing what hurts them. Only b/c it so mild and it not affecting/destroying the area as it does for others. I read about people who bed ridden and not being able to get up even to the bathroom and its all due to severe ARC.
    Thank God we are not at that stage and hope never be there, I feel for others though.
    My dear friend had her epidural done last year and complained about back pain since. But it didn't bother her to have normal life. Only now they diagnosed her with very mild ARC and predictions show that it will never get bad. My Dr told me that the worse case scenario is ARC after spinal surgeries. Which is my case. I never heard about this condition and when my DR told me ARC word, I was curious what this means, but nothing more than that.
    Only after reading about it on Internet, doing research I realized that it can be bad for some people.

    Let's hope it will never get to a bed ridden situation so we can go on with our lives...

    Hugs and best wishes
    Moldova

     
    Old 09-30-2013, 01:03 PM   #4
    gmak
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    Re: Is it for real, I finally found? :-)

    Hi moldova, Thanks! Yes i agree that we wont get to that terrible stage! Though my heart goes out to all sufferers, we do suffer too sometimes. Its So weird the sensations we feel! Last week the "nerves" were sending identical messages that felt exactly like glass in foot & bee stings. Uggh! Bugs crawling! I think we get to feel the cauda equina die literally. We do have to believe that it will never be bedridden state for us! Faith is our only hope since no medical treatment! Mine is from multiple surgeries too i think or the myelogram with pantopaque or iophendylate! Our saying changed from it could be worse to it wont get worse! Thank you for answering me! I heard of SCS put in with no dura incision! Put just under skin to help the pain on back only, have you heard of this? I cant find a dr here that does it however. I sent my MRI films to be "staged" & was told severe, empty sac syndrome & i wonder how do the drs know she wont progress? But i dont want anyone else to go through this!

    Last edited by gmak; 09-30-2013 at 01:13 PM.

     
    Old 09-30-2013, 01:30 PM   #5
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    Re: Is it for real, I finally found? :-)

    Dear Gmak,
    even if you find a DR who does it, you want to make sure he does it a lot and often. And also, you should collect few opinions from different doctors about this procedure.
    I heard about it, but I am very conservative about new stuff. My RA taught me to be this way; she never puts me on new RA treatments until she reads great reviews at least for a year. She said so many drugs and procedures get great ads and 6 month later out of shelves.
    So as you can see, I am not an easy believer.

    Yes, you are right; not easy to live with what we have. But what I learned during my ordeal with long list of health issues is that humans get used to certain levels of pain. When I just had my first spinal surgery I thought I will never survive the pain. I was on pain meds and still was in agony. When I compare my pain levels now to back than, I wish I would have that pain rather what I have now... It means that I got used to pain, it means I learned how to live with it, you know what I mean?
    So somehow we all adapt to some pain, we learned to live with it and hope it will never gets worse. Don't you have nights when you feel you cannot go on living like this? I am sure you do, but than you get up in the morning and smile and hope maybe tomorrow will get better...

    I had 4 Myelograms and numerous spinal epidurals but only during surgery I got complications and as a result: ARC. I remember when I asked my first PM DR (6 month after my first spinal fusion) what is ARC?
    I read about it and many symptoms remind me of what I suffer from.
    He said: you don't even want to think about it, nobody wants to get ARC so let's stop talking about it.
    I was so sure I don't have it and what a surprise it was when I was diagnosed with it few years later. I think he didn't want to talk about it since he worked in same office my surgeon did and they relate to each other...and both of them tried to assure me that my drop foot will heal (8 month after surgery?) and that I don't have to worry about ARC...

    I wish everyone well
    Moldova

     
    Old 09-30-2013, 02:03 PM   #6
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    Re: Is it for real, I finally found? :-)

    Hi moldova, Yes ma'am i want to return to my pre-surgery pain level! I cannot believe i thought it was sooo bad so i agree that we adapt! But i would rather not, i would prefer that i never had this dreadful condition. I think my drs felt & acted the same way... so they dont mention it or tell me for 24 years because what a thing to say to someone! But, the drs that told me, 2 complex spine NS's & a spine PMNS, only said this, i have arach & no more surgeries or esi's. Thats all & like you i had to learn all about it by researching dr charles burton, dr aldrete, dr sarah andrae smith jones. What a horrible experience, 4 myelograms you poor thing! This off label peripherally placed SCS, its so hard to find a dr who does them, i found one by you, in wilmington but im in Tx! Still the thought of any surgery, anything invasive at all makes me want to run the other way! I saw my PM dr this month already & he does not think it is time to change any of my treatment, he thinks that as long as the oral & patch narcotics still work then we change nothing & we thank God that i can still find pain relief enough that i can function!

    Last edited by gmak; 09-30-2013 at 02:15 PM.

     
    Old 10-07-2013, 03:04 AM   #7
    Moldova
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    Re: Is it for real, I finally found? :-)

    Hi Gmak
    Now is 6am and I am ready to NYC for another epidural. Slept only for 3 hours because of sore throat I got last afternoon. Too late to cancel and I am hoping for the best.
    I got to the point where epidural is a must. I am fighting to live life the best I can and as much as I hate the pain during procedure, I know it will help me for a while. Oh, what a life, right?
    Doctors, appointments, procedures, surgeries.
    Last night friends came for tea to say good luck to me. They are almost my age but have zero health issues, thank God. So they are talking about stuff which is so far from me and my life and I am thinking how not long ago I was there too. We used to travel every year together, have parties and went out a lot... I don't discuss my health issues with them, no details since I know it bore people, so why would I do it to anyone, right?
    Meanwhile between sore throat, being in so much pain and dreadful thoughts of today's procedure took all the fun from our little tea party.

    I will be out of order for a few days after today.
    Will get back to you as soon as I can.

    Healthy life to everyone!
    Moldova

     
    Old 10-07-2013, 06:45 AM   #8
    gmak
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    Re: Is it for real, I finally found? :-)

    Hi moldova, I hope it all goes as well as can be with the ESI today & will say a prayer for you. Im sorry, i know how it feels too to feel sort of "out of the loop" but it was nice they were there for you to show their support & im sure they had fun visiting with you at the tea!

    Last edited by gmak; 10-07-2013 at 06:50 AM.

     
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