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  • Terrrrrrible flare after my third lumbar sympathetic nerve block

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    Old 01-11-2009, 01:23 AM   #1
    tigerlily11
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    Terrrrrrible flare after my third lumbar sympathetic nerve block

    I had a third lumbar sympathetic nerve block yesterday...I had the first in August, the second in Septmeber and a third yesterday....my leg warmed up a bit after the block..I woke up this morning with a slight burn in the left foot and lower leg....as the day went on the flare increased and it was horrendous by tonight !!!!

    I had been having more flare-up's lately but I thought the block was going to help!!!!! Needless to say I'm scared to have another after what happened to day!! I don't know what to do next!!!

    The RSD is in my left foot and I get terrible burning in both feet and legs now, and in my mouth.....My P.M. doc wants me to do a spinal cord stimulator, but I am concerned about spread!!!!!!!!! I have been taking Neurontin and start Cymbalta tomorrow.

    I asked about lidocaine infusions but she doesn't do them..and after this block I would be worried to try that!!! I'm feeling lost and scared...I am barely making it through the work day (full time) I can barely walk...i had to use my knee caddy today....

    ..my foot/feet feel like they're in the fireplace...

    Has anyone else had a horrific flare after a lumbar block??? Thanks for listening.....I so grateful for this board and for all of you out there..I am trying to stay hopeful and strong, but I'm having a very hard time tongiht...
    I hope you are having a manageable week-end..
    Many Hugs,
    Tigerlily

     
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    Old 01-11-2009, 01:46 AM   #2
    Gaollan
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    *Big Hugs* I'm sooooo sorry you're having such a bad time. I know how you feel though because I had a horrific time after the one and only block I had done. I should explain that the rsd was in both legs,feet,hip,hands,arms and tops of shoulders at the time. So....yeah, my whole freaking body felt as if it were being ripped apart. This went on for 2 months. 20+ pain level. I have never, ever met anyone else out there in almost 6 years who had a flare last that long after a block.

    I'm baffled as to why the heck there was so much time between blocks!!! They're supposed to be given at the rate of 1 or 2 a week, depending on the doc and also depending on the doc and the patients reaction will do 3 min to how ever many as long as it's working. The reason for giving them in this manner is because in order for them to be effective and build up to longer relief each time, they have to be given no more than a week maybe 2 apart.

    IMO since you're in so much pain, tell your doc there's no way you're doing anymore. Remember he works for you not the other way around. He can't make you get another one. Explain exactly what happened. Write it down right now so you don't forget. Put down the only benefit you got from it, how long the warm up in your leg lasted, how long after the block the pain started, keep a running record of how bad your pain is, exactly where it hurts and what the pain feels like. It's very easy to forget things when you're in so much pain so much better to write it down right now so he can have a clear picture of what you went through. Let's hope it's past tense by the time you talk to him or see him.

    Hang in there. It will ease up soon. Oh, I am very against the scs myself. I've known a lot of people who've gotten one and really regretted it. The biggest thing after the fact was big time spread. IMO it's not an effective treatment and never was. Dr Schwartzman, a top rsd doc, doesn't do or recommend the scs now because of how much worse things are after its done.

    Hugs,

    Karen

     
    Old 01-12-2009, 12:37 PM   #3
    tigerlily11
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Hi Gaollan,
    Thanks for your information !! It was so helpful knowing I wasn't the only one who had experienced a flare of terrible burning after a lumbar block..I just don't understand it physiologically...why would there be a flare if the nerve bundle is being doused with lidocain...I just don't get it...do you think she missed the target and irritated the nerve?

    I really don't want to close the window on getting more blocks..the second one I had a few months ago gave me relief for a couple of days. I asked for this one because I am desperate for some kind of treatment!!!!!! other than Neurontin..My P.M. doc doesn't do lidocain infusions..and I'm thinking that might be the next form of treatment...I think my P.M.doc might refer me to someone else who has more knowledge about options...she is not an anasthesiologist.....

    I am a worker comp case and that makes things more complicated...I've just gotten so much worse in the last couple of weeks..burn pain all over the foot (including the ball of the foot) and in legs, I missed work this morning and don't know how I'll make it this afternoon not to mention the rest of the week etc...

    I've read your history and so sorry for what happened to you...are you on your own for medical care? Did you ask for medical care when you settled?
    That's the scary part if I'm unable to work at some point...what do you do for medical care especially since RSD can become so debilitating down the road..

    Are you on a lot of meds and do they control your pain?
    Thanks for all you help and the way you help everyone on this board..you are so kind ...and your sense of humor always shines through even though I am sure you must be having a hard time as well.....

    Many hugs,
    Tigerlily xo

     
    Old 01-12-2009, 04:12 PM   #4
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Tigerlily,
    I am sorry to hear you had such a negative response with the block.. I had three of them also.. All of them would give me a flare up.. I don't know why.. but it did. I would experience the same thing when I would come home from PT.. I went for two yrs straight.. Everytime I would come home the pain would start... I kept telling the therapist.. He just could not figure out why..
    After I went to see DR Schwartzman. That when I stopped the therapy.. He said when something gives you a flare up.. Then don't do it..
    As far as the lidocaine infusions.. I had no problem with that.. Just an IV.. I just wish more drs would do that treatment... I don't understand why they don't. All the SCS, pain meds.. blocks.. They are all just bandaids.. My opinion, they don't fix the problem.. I understand that we all need that bandaide or we wouldn't get through the day.. I just hate to read these post about all of you in pain. and here I am one of the lucky ones to get the lidocaine treatments.. I feel really bad.. and I wish I could do something for all of you...
    I still get the pain.. not as bad though.. I still take pain meds here and there and I will always be taking the neurontin... I just take one day at a time.. and hope I don't have another injury..
    I am here for all of you and always will be..
    Take care Michelle

     
    Old 01-12-2009, 07:41 PM   #5
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    I had mine done under fluoroscopy,live xray, so it didn't go astray. I believe this reaction is most likely due to the pain being SIP, Sympathetically Independent Pain. I also believe when the pain goes independent is when it's more likely to spread. Now, if only the ones researching would catch up with me! LOLOL Having SIP means you most likely won't get any kind of relief from a block.

    In Florida there is no lifetime medical care of any kind. When you settle, that's it, there's nothing past that. I don't know of many states that have lifetime medical as an option in work comp cases. I don't take many meds at all. Thankfully I got some good genes from my dad. Even though I'm full body I don't need the "hard" drugs, ie morphine, etc. I'm hoping I won't need those for many more years to come. I'd hate to run out of options and have to live the last 20 years of my life in agony. I take vicodin 10mg and baclofen for the jerking limb thing. It helps me enough that I can walk and clean house,do laundry. Not all at once of course. LOL I learned early on to pace myself and I know my limits.

    Thank you for the compliment and you're welcome. I hope things will ease up enough so you can get through the week! I'll be thinking of you.

    Hugs,

    Karen

     
    Old 01-12-2009, 09:58 PM   #6
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    HI Michelle and Gaollan

    Thanks so much for your support..both of you have a lot of experience between you with RSD so I feel very fortunate to get your help ! I had a couple of questions on how you interpret flare.. For me, flare is when that terrible burning pain happens, when it feels like your feet/legs are in the fireplace..is that what a flare feels like to you? For you, is a flare that burn pain? I know it's different for all of us, but I do hope that terrible burn pain subsides over time..it keeps me from concentrating or thinking about anything else............

    I guess it's bad news that if you don't get relief from a block then it's probably sympathetically independent pain, becuase therefore the blocks are one less option for pain control.. Michelle, do you think the lidocain infusions would work if it is SIP ?? Oh, I hope so..........
    It's so great that you are able to work and enjoy it...I know from your posts you are exhausted when you come home..you are very brave..May I ask how much Neurontin you have to take to make it through?

    Gaollan, it is amazing that you are full body and take minimal medication!! I hope your days are bearable!! You, too, must be strong and brave.. Do you think the warm weather and humidity in Florida help?!! I wonder if there is a connection!

    Michelle and Gaollan, thanks so much for your caring and your posts! I am so grateful for your help! I am trying to stay hopeful and positive...it's just that it's almost impossible to walk because of the ball of my foot and the rest of my foot/ankle pain....and the burn......

    Take care and I send you many hugs across the miles.
    Tigerlily

     
    Old 01-12-2009, 10:35 PM   #7
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    I don't burn a lot, thankfully but it does whack me once in awhile. When I talk about a flare I am talking about pain and achy feeling. If I'm "lucky" haha, I get all the joy of sharp, stabbing,shooting pain all over, jumping hither and yon and also bone deep pain. It feels as if some little being is inside my bone marrow with an axe chopping away. I also will feel pain deep in the muscle which feels like the worst achiness, like having the flu along with the need to stretch. Like my muscles feel super tight. When you wake up and do the stretching thing.....I feel like I have to do that, except it doesn't help the pain and actually makes the pain worse. Some days it just muscle pain, others, bone, others the stabbing. RSD really needs to pick one thing and stick to it! LOL Personally, the burn stuff has to go.....it's just wrong!

    I would think the lidocaine will work regardless. It's not being injected into a nerve bundle, it's actively working on the nervous system and "deadening" the nerves. Michelle can correct me if I'm wrong on it.

    Most days are good, except when I have bad days. ROFL Pretty much like everyone else! I DO think living in Florida is a good thing. Mainly because of our oh so mild winters. It's the bone numbing cold and snow stuff that makes rsd scream...and the person too. Summers are hot and muggy but that's what a/c is for! I still deal with fronts, rain, barometer changes like in any state but it makes it all worth everything else when winter comes.

    Hugs,

    Karen

     
    Old 01-12-2009, 11:51 PM   #8
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Tigerlily,
    I'm sooo very sorry to hear that you're suffering so much. I've never had a block, but my pain has been very nasty for about 5 days now. I agree with you cuz I'm also scared about the scs -- So much can go wrong, plus the spread. I've been looking into the drug pump -- I dont know much about it but am interested in getting more info. Have you thought about doing that? I'm hopeful that Cymbalta will give you some added relief during this difficult time for you.
    You take good care and I'll be sending prayers your way -
    Deb

     
    Old 01-13-2009, 12:01 AM   #9
    RoseinSanDiego
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Hello again Tigerlily,
    I forgot something so I'm writing again. I was talking with my RSD doctor my last visit about the lidocaine infusions and he said he'd be willing to send me to an anestheologist to see if they would do one so I'm hopeful you're able to get more info and maybe have 1 done. Michelle swears by them.
    A flare for me is a very painful turn where I have to take my pain pills every 4 hours to survive my day at work and I'm still hurting soooo much that I wish I could just quit! Seems like many of us are having very difficult time right now.
    Let us know if you do the lidocaine infusion.
    Hugs, Deb

     
    Old 01-13-2009, 07:23 AM   #10
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Hi Karen;
    I agreed to go ahead w/the neurostimulator because the company rep said, "it would keep the rsd from spreading in 99% of the time" - well, now...most days I have to turn the dang-gone thing down to near off as the "comforting vibration" they promised turns to a spiking jagging ....not near anything comforting ...stupid expensive machine; yeah, yeah, they reprogram it & the porcupinie (?) feeling goes away for little while but doesn't stay & yep, went to Cleveland Clinic where a wonderful caring doctor says she wants to do yet another catscan of my neck, if it doesn't show anything then of course, my dear friend, if I may call you that, wants to yank this cottonpicking thing out and we'll start the whole process over yet again - in other words, guess it's not in the right spot???? yesterday was a bad day; it's snowing here and the barometer is jumping to & fro, 'posed to get down to the 0"s by end of the week - this is the time I'd like to chop my whole arm off & let's not forget; no one knows why my hands hurt all the time now too....better go now...arm's screaming & there's yet another appointment my dear beloved has to drag me to but God Bless You dear in many ways' - folks think twice, 3,4 times before you let them put this contraption in...and all I hear from the doctors, etc. is how much it helped so & so. yeah right. Keep us smilin dear- heart...

     
    Old 01-13-2009, 07:57 AM   #11
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Hi

    I am scheduled for a third block in a few weeks (SGB since my RSD started in my shoulder) and my PM doc said he would start the lidocaine concurrently. I'm not sure I understand what will be involved, I need to call his office and find out how all this will work.

    The weather has been atrocious this winter in the NE, one flare just leads into another. I don't know what else to try, the meds are starting to give me an upset stomach every morning...this is a total drag. I can't wait for spring, which for RI doesn't come until late April or early May.

    Take care, Sandy

     
    Old 01-13-2009, 04:26 PM   #12
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    The rep obviously didn't know a darn thing about rsd!!! Geez....keep it from spreading. Pffftttt Ah well......if they want to take it out then tell them, sure take the stupid thing out but don't think for a minute you'll be "repositioning" it and leaving it in there!!!!! Nope....far, far better to leave it out because "messing" with it won't accomplish anything and will lead to more problems...more surgery later probably. *sigh* Put your foot down about it.

    Brrrrr.....way to cold!! I'm a florida girl and when it gets in the 60's I'm putting on a sweatshirt. ROFL Yeah, yeah...heat wave for ya'll....chilly for me.

    Sounds like it may be in your arms too. *Big Gentle Hugs* I hope not but when there's no other reason for something to hurt, look at the monster. Oh...you may certainly call me dear friend and anything else you'd like to....just never late for dinner! LOLOL I Looooooooove my food!

    Hugs,

    Karen

     
    Old 01-13-2009, 04:30 PM   #13
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Meds will mess with the tummy for sure! Sorry all of you are in so much pain from the weather.....snow....brrrrrrrr. Do you eat when you take your meds? I try and make sure I get something in me that will help "absorb" the meds so to speak. I'm not big on eating till a few hours after I wake up so if nothing else I eat crackers or lightly buttered toast, a biscuit if I have them. I don't know if you drink coffee or not....I do, but if so, it's a good idea to not have a cup until at least an hour after taking meds. This gives your body time to process the meds with no interference from caffeine.

    Hugs,

    Karen

     
    Old 01-14-2009, 07:12 AM   #14
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Karen,

    You are so nice - thanks so much for your reply. I took your advice and ate some saltines this morning instead of gulping down my pills with coffee and running out the door. It definately helped. I also put my vitamins in my pocket and will take them a little later instead of mixing them with everything else.

    Scio Lady - good luck with your contraption - I hope you get it straightened out. Thanks for sharing your info with us.

    Sandy

     
    Old 01-14-2009, 04:00 PM   #15
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Great idea with the vitamins! Taking them at the same time with everything else will definitely interfere with the absorption of them and probably haven't given you much benefit as a result. Taking them at least 2 hours after is your best bet. Most people probably don't know when you take iron pills, they shouldn't be taking them with calcium as this pretty much renders the iron supplement useless and they should also be taken on a empty stomach as well. It's recommended to take them in the morning and waiting for a couple of hours before eating anything or take them at night before bed. I've been anemic all my life and it got a lot worse when I was pregnant. I learned quickly all about iron. LOL The one down side to iron pills though is they sometimes lead to an upset stomach and/or constipation. If anyone needs to take iron pills, I recommend a slow release tablet because you can avoid all those problems. If it messes with the tummy, take it at bedtime and you won't feel icky because you'll be asleep!

    I'm very glad that my suggestion helped and you didn't feel all icky.

    Hugs,

    Karen

     
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