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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 11-26-2008, 05:46 AM   #16
    Michelle94
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    Re: Lidocaine and Ketamine

    Martra,
    All of this is just so frustrating.. Isn't it.. I can feel the vibes just reading your post.. I am so sorry your family has to go through this..
    I remember you telling me about that PM dr in abington.. I was going to go there.. but right now I am ok on the meds that I am taking... I don't want to rock the boat..
    Yes, there is a waiting list for the lidocaine also.. but..its not as long.. It only took a few months..
    I believe medicaid is for low-income.. I am single mom with three kids... They put all our income together. Which is not much.. even the children 16 yrs and up.. Like their going to contribute to my bills.. I do get childsupport.. but they count that for the kids only so its not my income.. So when I did apply I was bascially making nothing.. Now that I am back to work.. I can only make $1700/month. If I go over I lose my health insurance.. Thank go I found employment where they are willing to work with me.. They are so good they keep my hrs down....
    Sound like maybe you have to much income coming into the household.. Yea.. I do know that there is a waiting list for adult basic.. Mine is not that... I think that would be the next step if my income did comply...
    Be honest with you.. If your hubby has WC.. There is know insurance co that will pay for his bills for the RSD.. They want who is responsible.. Mine goes through my Auto insurance first.. Once I exhausted that then medicaid picked up the tab...
    Right now the only meds I am taking is Neurontin.. They just doubled it. That helped out a lot and Tylenol with Cod.. Its working for me.. I have to have the combination without one It seem to not work for me..
    Try to think positive.. I know its hard.. Its a long hard road.. but I really do believe there is some light at the end of the tunnel.. The key is to keep moving.. and thinking positive.. not to let the darn monster take control...
    I wish you the best.. Keep in touch.. Happy Thanksgiving..
    Off to work I go...
    Michelle

     
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    Old 11-27-2008, 04:01 AM   #17
    RoseinSanDiego
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    Re: Lidocaine and Ketamine

    Hi Michelle,
    I had a doctors appt yesterday and asked him about the Lidocaine infusions -- He told me he could send me to an anesthesiologist and see if they would do it -- I thought it was put into the spine so I said I wouldn't do it, but then my doc told me that it's put into an IV drip so that kinda got me thinkin -- However, my pain isn't that bad and I'm able to walk so no complaints here -- He's increasing my Lyrica up a bit and he gave me stronger Vicodin so I'm gonna try that for the evenings --
    Have a wonderful Thanksgiving and thanks again for all your kind words, knowledge and friendship on this board -
    Take good care,
    Deb

     
    Old 11-27-2008, 06:21 AM   #18
    Sandy325
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    Re: Lidocaine and Ketamine

    Happy Thanksgiving everyone,

    Do you need to have the blocks performed before you go to the Lidocaine? And how many days do the Lidocaine treatments usually take? I am scheduled to see a doctor in Boston towards the middle of December and I'm just curious...

    Have a great day!

    Sandy

     
    Old 11-27-2008, 12:53 PM   #19
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    Re: Lidocaine and Ketamine

    Sandy,
    No.. You don't need a prior blocks.. All you will need is to see a Cardiologist prior.. at least I did.. and the reason for that is obviously to make sure everything is ok with your heart because the lidocaine does lower your blood pressure.. During the infusion, you are hooked up to around the clock heart monitor.
    Mine was a five day stay inpatient on the cardio floor.. It does make you very tired.. Its really very harmless.. You just sleep.. which is great to actually get a good night sleep in.. Your followed up with pill form after leaving the hospital.. It takes about three days after the hospital to start feeling normal.. but compare all that to day and nights of pain.. Its nothing.. The IV does not affect the RSD at all... You can actually feel the pain go away within hrs.. Its such a treat.. Some people need to go about every three months.. some once a yr. it all depends on the actual individual.. I only needed to go three times.. and Its been about 1 1/2 yrs now.. I don't even take the pills anymore... I have met so many other pts and made friends with them who have had this treatment.. This is why I want everyone to have the chance to try it..

    Deb,
    Yes its an IV drip.. Its really know big deal at all.. You don't even know its going in you.. Your just tired.. and painless. Its really worth thinking about.
    The goal of this infusion is to get you off all those pain killers.. And it last so much longer.. Like I said to Sandy.. Something to really think about.. Its really worth it..
    Michelle

     
    Old 11-27-2008, 08:14 PM   #20
    RoseinSanDiego
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    Re: Lidocaine and Ketamine

    Hi Michelle,
    Wow -- Thanksgiving dinner sure was tasty!
    I'm on regular Vicodin, but yesterday I requested the 7 1/2 Vicodin (I think it's called Narco, Norco???) -- Maybe they wouldn't do it because I'm not on the stronger type narcotics?
    I would absolutely LOVE to experience the pain going away with the lidocaine infusion -- I had no idea it was a 5 day inpatient thing though -- Wow. I'd have to get a sub if I was going to miss 5 days of work -- I don't know how anyone works 8 hours a day -- I'm 15 hour contract so it's actually 1/3 time -- I work all day on Mondays and Wednesdays and holy cow -- When I get home, I gotta kick up my feet and stuff -- Pretty darn sore -- I think I'm getting pretty scared again about my RSD -- and I really don't like that fear.
    Gotta run for now,
    Deb

     
    Old 11-28-2008, 07:12 AM   #21
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    Re: Lidocaine and Ketamine

    hi everyone, \

    just wanted to chime in a minute with a couple questions.

    the five day lidocaine drip, about how long after you leave the hospital after one of these treatments does the pain stay away??\

    and Im on workmens comp, has anyone else had this procedure done with workmens comp??

    thank you and have a pain free day

     
    Old 11-28-2008, 10:45 AM   #22
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    Re: Lidocaine and Ketamine

    Hi everyone,

    I have the same questions as Liznnip....

    Liznip - I live in the middle of RI - which is not too far from Naugatuck. Where do you go for medical services? Is there a medical center in your area that has helped you with your RSD? I am fairly new to this and would sincerely appreciate any advice you can provide.

    thanks, Sandy

     
    Old 12-16-2008, 06:21 PM   #23
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    Re: Lidocaine and Ketamine

    liznip..
    Sorry its taken so long to answer your question.. I've been working four days a week now.. Not use to it after being out of work all these yrs.. lol
    The lidocaine is a five day in patient infusion.. So your in for five days.. All you do is sleep.. Its nice.. Your pain free..
    Each person is different who has this treatment. For me. my first one only lasted three months.. The second was about a yr.. and the third has been a while now.. I say may two yrs. and I am about 90% free of pain.. I can handle the 10%. It has totally improved my life. I am now back to work.. My mental state is so much better, which in return my RSD is better.. Any type of mental upset will flare you up.. I think it all just works together. Having chronic pain is horrible, then depression sets in.. So after they relieve the pain you mentally improve.. Going back to work was the best thing I ever did..
    Thats why I just wish everyone could have the lidocaine treatment Like i have.. or even the ketamine.. They say that works even better..
    Its so worth talking to your drs about it...
    Good luck.
    Michelle

     
    Old 12-16-2008, 08:58 PM   #24
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    Re: Lidocaine and Ketamine

    Hi Michelle,
    It sounds as though you've had so much success with the lidocaine infusion..I have read it in so many of your posts and it sounds so hopeful and so possible !!!! Could it be done with lower limb RSD which could be migrating?
    Can you describe what is like to undergo such a treatment..What is done to you ...how is it done...do you have to be put under with general anesthesia???? I would be so grateful if you could write about it!!!
    Thanks!! I'm so glad you're enjoying your work and feeling so much better physically and emotionally!!
    tigerlily
    xox

     
    Old 12-19-2008, 06:11 AM   #25
    Michelle94
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    Re: Lidocaine and Ketamine

    Tigerlily11,
    This treatment is so easy to go through.. I have RSD in all four extremities.. and this treatment is for all RSD.. doesn't matter when you have it..
    All it is is an IV infusion..of lidocaine and they start you out slowly.. Each day the turn it up until you up to I think its 21 I can't remember.. Your start at about 8 depending on your weight.. In the mean time you still take all the meds you were prior..
    Its a five day inpatient hospital stay.. You sleep the whole time.. Its really easy to go through.. probably easier then the blocks..
    When you get home you take the pill form.. Which I only took for about two weeks.. I guess some people are different...
    Prior to the treatment.. You will need a complete physical.. Blood work etc.. You have to see a cardiologist. Have an echo gram done of the heart.. The reason for this is, the lidocaine does lower you heart rate.. so while staying in the hospital you are on the cardio floor with heart monitors attached to you so you can be watched 24/7.. This is why you sleep so much on top of the meds. The low rate does that to you.. I've had several roommate who were also going through the same treatment.. The who floor of this hospital was going through these treatments.. So I meant so many pts down there while walking the halls. Yes you are able to walk around. Take showers.. etc. Eat normal.. The only reason why you stay in the hospital is to be monitored closely..
    When you come home.. You tired for a few days. But PAIN FREE.. Its almost like you wake up waiting for it to happen and it doesn't.. Its really weird.. some pts do need several of these treatments cause the pain comes back within a couple months.. This is why I needed 3 of them.. After the third I seemed not to need it anymore.. Its almost like everything has reveresed and I am slowly getting better.. I still take my neurontin and Sometimes I take tylenol with cod at night.. Thats if I've had a long day at work.. I am sometimes on my feet for over 11 hrs a day with 1 hrs break..
    This is why I want everyone to have this treatment.. I went from not walking to back to work working all those hrs.. I still can't believe it lol..
    I hope this helps out some.. It is so worth the try if you are able to get it.. You have nothing to lose and everything to gain...
    Thinking of you
    Michelle

     
    Old 12-19-2008, 10:50 AM   #26
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    Re: Lidocaine and Ketamine

    Dear Michelle,

    I love it when you post messages because you are so informative and appear to be an RSD success story. I am not sure how long I have had RSD, it was recently diagnosed, based on my symptoms my PM doc thinks it began with an injury I suffered in Nov 2006.

    I will have my first SGB on Christmas Eve (the only appt I could get). The RSD is in my shoulder and neck, but all four extremities now have show signs that the RSD is spreading (numb, tingling, fireworks in the toes, etc). I am WC, the only treatments approved so far have been pharmaceuticals and PT. The insurance company (The Hartford) stinks, and my lawyer works at snail's pace. I am running the SGB through my personal insurance and will be liable for 20% of the bill.

    I am trying to learn all I can about lidocaine and ketamine. I made an appt with Dr. S but it's a year and a half from now. I live in RI, an hour and half south from Boston.

    How do you find out what medical centers offer lidocaine and ketamine? I've tried googling, but haven't had any luck. Rather than wait a year and half for Schwartzman (and then endure another wait for the treatment), it's probably better to try to get treated up here. What do you recommend?

    By the way, I grew up in Haddonfield, NJ, not far from Philly, and 2 of my siblings went to Drexel. What a coincidence!

    Congrats again on the dramatic improvement in your condition, I am very happy for you. I hope you have a terrific holiday, Sandy

     
    Old 12-19-2008, 07:58 PM   #27
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    Re: Lidocaine and Ketamine

    Sandy325,
    Yea I know that feeling of waiting for an appt.. Mine was a two yr wait for Dr S.. But you really don't have to many options.. While I was waiting for my appt I was being treated by my orthopedic at the time.. When I went for my visit at the ortho he dx me with RSD right away and made a phone call to DR S right there in the office while I was present.. So all my meds that the ortho prescribed were directed to him from DR S.. So for my two yr wait.. I started on Neurontin, lamictal and tylenol with cod.. It did calm the RSD down some and helped with my mental state.. It did not stop the spreading of the RSD.. By the time I saw DR S.. it had spread to all four extremities, my back, neck.. it has also affected my bladder, I do get heart palpatations and the blurry vision and the forgetfulness. DR S says that all of that is do to the RSD it is spreading
    throughout my whole body.. So I guess I do have full body RSD.. but it really doesn't matter cause you still get the same treatment..
    As to finding out who does these treatments.. I would call all the PM drs you can.. Ask them straight out. I found one other dr who does it in PA.. but he doesn't take any insurance at all.. and the first visit right off the bat is over $600..
    I am not to sure when it comes to WC. Mine was under my auto insurance. I had to get everything preapproved.. It was very costly. AFter I did get my first treatment.. The insurance co decided they were not going to cover it.. Wow. What a bill I received in the mail.. So my lawyer had to file a pip suit against the insurance co.. So I was untreated for over a yr.. no meds nothing.. That was horrible.. I did take neurontin.. Lets just say it wasn't prescribed to me.. lol. I had a friend who had nerve problems WC case who was given the meds but never took them.. My lawyer told me.. You do what you have to.. So I did..
    I don't know what dr your seeing now.. but I would have him or her call DR S office and asked to talk to him.. Thats what my dr did.. Maybe you can get on the right cocktail of meds while waiting to see DR s...
    I wish you the best.. Let me know..
    Michelle

     
    Old 12-19-2008, 08:04 PM   #28
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    Re: Lidocaine and Ketamine

    Karen,
    You mention you have no health insurance, no money, and I am sure your not working right?
    Why don't you apply for medicaid.? I am sure you should be able to get it..
    I work 32 hrs a week and I am getting medicaid.. and even before when I wasn't working at all I received it..
    There has to be something out there for you.. Some kind of help.. I just feel so bad.. I was in the position couple yrs back.. I know that feeling.. I know the feeling of losing everything to this darn monster.. I lost my house, my credit.. everything.. Just the stress from that causes the RSD to flare..
    I hate to see so many people suffering.. I just wish the gov't would help out more.. Its just not fair
    Michelle

     
    Old 12-20-2008, 01:08 AM   #29
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    Re: Lidocaine and Ketamine

    Hi Michelle,
    Thanks for the detailed description of the treatment..When I see my P.M. doc in January I will ask her if she is familiar with the treatment. I have RSD in my left foot and leg and I know it's spreading as I get burning in my right leg and in my face!! I am on Neurontin and i'm conceerned I'll have to up the dose..I work full time and my mind has to be clear..I already get very sleepy..
    When you say it has spread to all four limbs, how do you experience that? Is it burning pain, sensitivity, ache or ?
    My ankle is getting stiffer and stiffer and the ball of my foot is very painful..this hinders my walking the most..I can only walk with a limp and for a few yards at a time..
    Mine is a worker comp case and i was told I cannot use my private insurance for treatment.....
    Michelle, you are an inspiration and give all of us hope..thanks for all your information and willingness to share it !!
    hugs,
    Tigerlily

     
    Old 12-20-2008, 05:30 AM   #30
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    Re: Lidocaine and Ketamine

    Tigerlilly,

    When WC denies approval for something, I pull out my United Health card and use that. And I've gone to my personal physician for problems related to the RSD (mostly High BP monitoring and for ordering MRI's to rule out other problems), and that goes thru my United Health. I hope that I can get an approval from the Hartford prior to my SGB this Wed. Otherwise I will be liable for 20% of the bill. But in the meantime at least I am get treatment.

    The hospital tried to get WC approval, and when they denied it, they took my United Health coverage.

    And I've had to use my United Health for drugs numerous times (and pay the deductible) and badger my doctor about providing the right documentation to the WC people so that they would eventually approve it.

    Try your personal insurance and see what happens - its better than not getting any help at all.

    Sandy

     
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