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    Old 01-14-2009, 09:39 PM   #16
    tigerlily11
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Hi everybody,

    Thanks for everybody's help with my difficult time with my 3rd lumbar nerve block...Gaollan, thanks for your vast knowlege and willingness to share it with every topic under the sun..you are sooooo kind..

    I've said it before and I'll say it again..this board keeps me sane and I treasure everyone on it...so many of you are having a hard time..

    scio lady, I agree with Gaollan to not re-install the SCS.. I know so many have had success, but so many have had a bad experience. The one that freaks me out the most is the possiblity of spread. My p.m. doc keeps pushing the scs but never talks about the risks or negative outcomes..she gave me the dvd and info book about it and everything seems cut and dry and perfect...no mention of risks!!! to me that's not ethical because it's only a half truth..I am sorry you are having such a terrible experience

    My surgery doc never, never mentioned anything about the possibility of RSD when we talked about surgery..I have alot of anger about that......in fact 4 months after surgery, when I still wasn't healing I asked him if he thought I had RSD because I had read about it on other people's posts. He said "no, you don't have rsd.. so for a few weeks I continued to ice and wear ankle braces..and then 6 weeks later he said "it looks like you have RSD"and he was so non-chalant about it.....like it was no big deal..........
    I should have listened to my own intuition.......I probably had months before and had a lot of wasted time in getting a head start on treatment...

    Sandy, when you find out what your doc means by doing the lidocain at the same time as your block, please let me know what he means...I am trying to find out about as many treatment options as possible as my RSD is getting worse.....good luck with your third block !! I hope it gives you some relief. It must be doubly hard with the weather being so freezing cold!! Please try and stay warm ..I send you warm thoughts to help you....

    Deb, let me know if you make an appt. with an anasthesiologist to find out abut lidocain fusions..hopefully it is something that might help you...I am sorry your feet and and knees are hurting more and more...I think of you getting up and down from your desk in the classroom trying to focus on helping the students....I have an appt. with my P.M. tomorrow and asking her to refer me to an anathesiologist P.M. ...she's not an anathesiologist.....
    but as a worker comp case who knows how long this would take, if it happens at all........
    I am barely making it through a full time job...I am living hour by hour these days...when that burning sensation kicks in in both legs I can barely stand it.......I just don't know what to do for it..
    but as I said, all of you help me make it through...sending you good thoughts, and much gratitude, and lots and lots of hope that you'll all find a way...
    Many hugs, Tigerlily

     
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    Old 01-15-2009, 12:42 AM   #17
    RoseinSanDiego
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Tigerlilly,
    I called my RSD doc this past Monday and he got back today and we played phone tag all day so should hear from him tomorrow. Not sure what will be offered, and it is very frightening reading about all the complications from our options. I definitely want to stay away from the scs -- I know it can work, as I've read on here from people who had success with it but for me, no. I'm now even thinking a "no" on the lidocaine bit just because I know our bodies don't like being poked or prodded. I will see what my doctor says but I'm thinking that meds are better than procedures for me right now. I also want to ask if there's any complications from taking stronger meds besides addiction because someone mentioned they can cause liver and/or kidney problems???? I would think that would be the case only if taken on an empty stomach, but I honestly don't know. If one of you has info on this, could you please let me know? Thanks very much.
    My knees and feet continue giving me a hard time and it's difficult to not focus on my pain because it got soo much worse so quickly. And yes, I'm up and down all day at work.
    I believe all of us need to do our homework because of all the bad info out there -- I couldn't believe it when I read the bit about 5 years.
    So here's to all of us having a better day tomorrow, and here's hoping that all of us have less pain -- Thanks again for all your kind words of support during some pretty rough times.
    Hugs,
    Deb

     
    Old 01-15-2009, 01:40 AM   #18
    Gaollan
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Quote:
    I also want to ask if there's any complications from taking stronger meds besides addiction because someone mentioned they can cause liver and/or kidney problems???? I would think that would be the case only if taken on an empty stomach, but I honestly don't know.
    Hugs,
    Deb
    Well...first off, there is NO risk of becoming an addict. Getting addicted to pills of any kind can only happen if you don't have pain and taking them gives you a "high" or any kind of altered state of mind. Since I know for a fact none of us ever get high taking any pain med, then there will not be any addiction problem. Now, to use the proper terms, we become physically dependent, and at some point, reach a level where a certain dose is no longer effective....I think the word would be tolerance. Neither one of these things has anything at all to do with being an addict. It's just a fact that when you take a medicine, ANY Med be it baclofen,neurontin,lyrica,etc..we can't just stop taking them or we'll go through withdrawl. It's a fact that after taking ANY med for an extended period of time, the body builds up a tolerance to that med. It reached it's blood volume level and no longer does the job it's supposed to be doing whether it's relieving pain or getting rid of depression.

    I felt the need, as I always do, to address this subject because it's not a reality for people with chronic pain.

    As for damaging the liver and/or kidneys, yes, pain meds can cause those organs to become damaged and not function properly. Every drug we put in our bodies gets carried to all part of our body through the blood stream and then absorbed. How we get rid of it is through urine. The liver processes the drug ingredients too. It's only natural that taking these meds may lead to problems. It has nothing to do with taking them on a empty,semi empty or full stomach. It's how the body metabolizes the meds.

    The bottom line on pain meds and liver damage is that it's SAFE to take them without worrying about liver and/or kidney damage as long as you don't go over the recommended amount of acetaminophen a day, which is 4,000mg a day or 8 pills that contain 500mg of tylenol. There are people who have been taking pain meds for whatever reason for 20,30 or more years and have had no liver damage. If you're ever really concerned, you can ask your doc to order a blood test to check your liver enzymes and make sure all is well.

    Hope this enlightening and helpful.

    Hugs,

    Karen

     
    Old 01-15-2009, 09:09 PM   #19
    tigerlily11
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Deb..Roseinsandiego...
    I had an appt. for the first time with a neurologist today...it was through my own ins. and not the worker comp ins. He said I have neuropathy..my left pinky has been numb on the lateral side and he thinks part of my non-rsd foot might have neuropathy as well (he did a lot of reflex testing and prodding with a tiny little needle)...he's going to do a nerve test on my arm to check out my ulnar nerve ..he also is prescribing a neck /upper back mri...

    Is your neuropathy a result of your rsd or is that a whole different issue??
    I wonder how the docs know the difference. I told him my mouth and tongue feel weird...(a burning sensation) and he has no idea why...Frankly, I think it's all because of the RSD...I am increasing the neurontin..

    He also said the RSD/CRPS will stay below my knee on my RSD leg/foot and that's why is called REGIONAL pain syndrome!!!!....good grief.....helllooooooo, it does migrate....
    oh well, at least he put me in a good mood for a while...
    He also said that lidocain infusions should be done as a last resort as the treatment does come with it's risks, particularly cardiac.........

    Everyday, different info, more confusion!!!!!!!!

    I hope your day was tolerable and hopefully even pleasant!!! Let's not ever give up!!!!!!
    Hugs alot!!
    Tigerlily

     
    Old 01-15-2009, 11:49 PM   #20
    RoseinSanDiego
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Karen,
    Thank you for all your information -- It is very helpful. I've come to realize that doctors give the options, but man oh man, it's difficult to decide. I wonder what my doctor will do tomorrow when I see him. At my last visit, he discussed blocks -- Even those scare me because I don't want spread. I guess I'm just afraid, period. Fear is so awful, and I've got lots of it. My pain was at a very reasonable level until recently -- Now the fear has set in.
    I will definitely have an open mind to whatever pain meds get prescribed for me.
    It's late, and I gotta get some sleep since I work tomorrow -
    Thanks again everyone for your help. This board is wonderful.
    Deb

     
    Old 01-15-2009, 11:55 PM   #21
    RoseinSanDiego
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Tigerlily,
    Once my RSD got diagnosed, my doc wanted me to see a neurologist because I had some nerve damage in my left foot/ankle. I had lots of numbing in my foot (on the bottom, where my incision is) so that's why. The neurologist ordered a test called an EMG on both my legs -- Holy cow, it was NOT comfortable. At times, it was even painful. During the test, they kept asking me if I had diabetes in my family -- I don't. Needless to say, I was told I have neuropathy in my legs and I have NO CLUE why -- The stats actually say that about 30% of cases have no known cause. The biggest reason is diabetes, and then B12 deficiency comes next but I don't have that either.
    I'll try and write more tomorrow after work, but I need to sleep right now -- I'm very tired. Will let ya all know what happens at my appt tomorrow -
    Thanks again for all your kindness and support -- I hope everyone has a good day tomorrow!
    Smiles and hugs,
    Deb

     
    Old 01-16-2009, 01:12 AM   #22
    Gaollan
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    I looked up causes for neuropathy and listed,among others, is nerve damage,meds like lyrica,cymbalta,Duloxetine hydrochloride, Pregabalin and other meds. I must insert a caution here......if you're taking any of those meds it does not mean that it's the cause of the neuropathy. I'd suggest thinking hard about exactly when the neuropathy began. If it started after taking any meds,then it might be the cause, and then again, it might not.

    I also looked up rsd and neuropathy. They are mentioned together a lot. We mostly here about diabetic neuropathy but the reason they get this is due to the poor circulation in their legs because of diabetes. It's the reason most diabetics wind up getting part of a leg amputated. Now...rsd causes really poor circulation as well so it only makes sense that we'd have neuropathy as well. Talking to so many people and researching, one thing people with rsd mention a lot is how bits of the affected part(s) are numb. I have bad numbness in my legs and it also affects my arms and hands too, just not as bad as my legs.

    So.....to sum up.......RSD DID IT!!!!!! ROFL This seems to me to be the most likely explanation when nothing else is wrong.

    Hugs,

    Karen

     
    Old 01-16-2009, 05:13 PM   #23
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    The EMG 's are not very friendly. I my self had them on both feet and shoulders. Not pretty. I have nerve change in my lower back that they say will effect my left knee but as of yet hasn't happened. I have a neuro doing a my rsd and a internal med doc handing out the pain meds. The numbness that is around the incision I was told is because a nerve was cut or nicked. Mine has never gone away. Is this what they are calling rsd? It is nerve related. I was told to rub, scrub, touch to get the nerve to rejuvinate, but that only sets off waves of uglies. Hope your news is good.

     
    Old 01-16-2009, 06:23 PM   #24
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Tigerlily
    Your dr is right about the lidocaine infusion.. They do come with Risk but the risk is low. and you are monitored very closely. I can see when he means by last resort.. I've bad a lot of treatments blocks meds etc.. I'll tell you.. none of them worked.. Not one.. only the lidocaine infusion.. I guess its his job to try other things first before that...
    Michelle

     
    Old 01-16-2009, 06:33 PM   #25
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Tigerlily..
    I am so sorry it took this long to get back to your question.. I've been working full time the past couple weeks so I don't get on here as much as I would like to...
    To answer your question about the lidocaine working for SIP.. I've met pts who had one or the other.. and Yes. It has helped them.. I met a lady who's had RSD for over 22 yrs.. She finally started the treatment the same time I have.. granted she needed more treatments then me, but she's doing much better..
    I feels its worth the try.. Its what the top drs of RSD are doing now for RSD along with the ketamine.. Which has very positive results also.. It just entails alot of time.. and money.. Which a lot of us don't have..
    thinking of you,
    Michelle

     
    Old 01-17-2009, 12:44 AM   #26
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Hi everybody,
    Thanks for all your help !!!!
    I, too, am certain that all of this sudden neuropathy is RSD related, especially since my brain MRI came back nagative. My new neuro doc has arranged for bloodwork; 2 hour glucose test, B12 count, metabolic analysis, lyme disease, etc. This doc is thorough, (even though he thinks that RSD is only regional and that's why it's called Complex Regional Pain Syndrome...I'll forgive him for that..maybe I'll be able to expand his RSD horizons)

    I am increasing my Neurontin and will try to manipulate my foot and ankle more (owwwwwwww..) and do self massage on my feet and legs..That terrible burning feeling in the feet and ankle and both legs is what I can't seem to lessen...
    Walleye, you're right when you say that trying to rejuvinate the nerves brings up "waves of the uglies!" ...and those wacky, zingy, zappy sensitive nerve endings in the ball of my foot. aarrgh, I can barely walk..
    I'm going to try and keep the possibility of lidocain infusion alive with my docs..the biggest obstacle would be the worker comp ins. In the meantime,
    I'll try and imagine myself, and all of us, healed..
    I hope all of you have a restful week-end...
    Trying to keep the hope alive! Tigerlily xo

     
    Old 01-17-2009, 01:23 AM   #27
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Ask your doc if it only stays in one place and doesn't spread, then how can he explain a vast majority of people with rsd that have it full body? *snorts* See how he handles that one! LOLOLOL

    Hugs,

    Karen

     
    Old 01-19-2009, 05:07 PM   #28
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Tigerlily,
    Sorry it took so long to get back to you... The answer to your question regarding the lidocaine infusion.. Yes.. They do give this treatment to pts with SIP.. Thats the kind I have.. I had no response at all from the blocks.. Thats what usually determines what type it is...
    Usually if you show improvement or any type of relief from the blocks its SMP.. Then they will direct the therapy at the sympathetic nervous system..
    If you do not respond to the blocks this usually tells them that you have SIP.. and that is usually associated with the central nervous system. Once its to that.. Your prognosis is more guarded.. There's less response to treatment, such as the blocks and meds..
    The lidocaine was so helpful.. Its so good to hear other people talk about it.. Maybe it will bring some awareness to other drs.. I am sure if any of your drs have questions regarding the lidocaine.. They should contact Dr Schwartzman.. He would be happy to help..
    Michelle

     
    Old 01-19-2009, 10:50 PM   #29
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Michelle,
    Thanks for posting in the midst of your busy busy life!!! I know you're working now and then you come home and take care of your own family!! You story is amazing and so is your strength.
    I will talk to my P.M. doc and ask her what she thinks about whether mine is SMP or SIP. I'm concerned that she may not know the answer. I'm also concerned she doesn't know enough about the treatment options nor does she have the tools and "arsenal" to fight the battle. She is so sweet and caring however and that's also very important. I realize that it's up to us to research and sometimes direct our treatment!! I don't have an appt. with her 'til Feb. 17th !! (Wow, why is there so much time between appts!!!!!) But it gives me time to do more research. I might call Dr. Schwartman's office (yikes!) and ask his staff if he has a recommendation for a dr. out here in Calif. that I can at least have a one-time consultation with !!!! I hope you have a good week and that you're enjoying your work with the children!!!
    Lots of hugs,
    Tigerlily

     
    Old 01-19-2009, 11:38 PM   #30
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    Re: Terrrrrrible flare after my third lumbar sympathetic nerve block

    Thanks for bringing up the question about how to tell if it's SMP or SIP!! Of course, I ran off here and did some research to see if you could tell or not. So....in all my glorified geekiness in doing what I do......here's what I found.

    The answer is really, really simple too. I actually knew the answer already but just in case I was wrong...I looked. You know when the pain is SMP if you respond, even a little bit to a sympathetic block. Your pain is SIP if you get no or very, very small relief from a block. I found a short article in Science Daily that did a small study of SMP and SIP. The look at 20 people with rsd and what the response to blocks would be. Those who had SMP responded to the blocks and showed some improvement. Those who show less than 50% or got no relief at all had SIP.

    So there's the answer and you probably already know yourself which one you fall under. Mine went SIP pretty quickly.

    Hugs,

    Karen

     
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